I have had to leave Facebook temporarily since my wonderful niece (she really is wonderful) is doing a countdown to March 15th for a very cool concert she is going to. It happens to be the day I will have my breasts removed and endure 12+ hours of surgery to create new breasts. I want time to stand still. I get a knot in my stomach each time I see her countdown, so I have been avoiding facebook.
Although, I have created a FB account under the name Beth Israel which will be primarily updates as we move closer to the 15th and as we move beyond the big day and the big surgery.
Monday, January 25, 2010
Tuesday, January 19, 2010
It's all about the FEAR.....
Here is another post from a previvor's blog.....this says it all, for now....
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From this blog: http://goodbyetoboobs.blogspot.com/
3) The worst part of surgery is the fear and anxiety I felt leading up to it.
It's hard for me now, a month removed, to quantify exactly how scared I was before my surgery. But it goes without saying I have never been more anxious or more fearful of anything in my life. And now: nothing. No fear. No anxiety. When I said before mastectomies only remove breasts, I was only half truthful: they also remove the anxiety. Nothing about recovery -- not the soreness, not the painkiller-induced fog, not the emotional vulnerability -- is as difficult as living life under the crushing weight of fear and anxiety. I know it sounds simplistic, and this is a statement that can only be said with the benefit of hindsight, but here it is: surgery isn't so bad. The shit I put myself through before -- now that was torture.
_____________________________________________________________________
From this blog: http://goodbyetoboobs.blogspot.com/
3) The worst part of surgery is the fear and anxiety I felt leading up to it.
It's hard for me now, a month removed, to quantify exactly how scared I was before my surgery. But it goes without saying I have never been more anxious or more fearful of anything in my life. And now: nothing. No fear. No anxiety. When I said before mastectomies only remove breasts, I was only half truthful: they also remove the anxiety. Nothing about recovery -- not the soreness, not the painkiller-induced fog, not the emotional vulnerability -- is as difficult as living life under the crushing weight of fear and anxiety. I know it sounds simplistic, and this is a statement that can only be said with the benefit of hindsight, but here it is: surgery isn't so bad. The shit I put myself through before -- now that was torture.
I could have posted this myself.....
This is from a blog I came across recently.......my feelings are the same....the procedure the same.....
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DIEP
November 1, 2009 by Teri Smieja
I’ve been talking awhile now about my fast approaching PBM – the DIEP that I’m having on January 12, 2010. For some reason saying ‘in January’ still made it seem far away. When I wrote yesterday’s blog entry instead of saying ‘in January’ I said ‘in a little over two’ months. Wording it that way made me realize how close it is – two months! I have no doubt that I’m going to be thinking and therefore blogging about this a lot more frequently in the next two months. I’ve already spent a lot of time explaining WHY I’m doing what I’m doing, so why not explain WHAT it is that I’m doing….
These days there are many different reconstruction options available to women who have mastectomies. When I first started learning about BRCA mutations, preventative surgeries and reconstruction, I was overwhelmed with all of the choices available. After a lot of research and thought I finally decided that the DIEP flap was the best option for me.
PBM = Prophylactic Bilateral Mastectomy – Prophylactic refers to the preventative aspect of the surgery. When a woman has her breasts removed BEFORE they have cancer then it is a PBM. PBM is NOT a specific reconstruction type; it’s the surgical removal of healthy breasts – bilateral means both breasts, also known as a double mastectomy.
DIEP = Deep Inferior Epigastric Perforator Flap. This is one of many reconstruction options available. It’s a highly technical and difficult surgery to perform and not just any doctor can do it. The DIEP can be used as immediate or delayed reconstruction. In my case I’ll be having a PBM with an immediate DIEP reconstruction. I will never have the experience of waking up and looking down to see no breasts on my chest (if you knew how much this image haunted me when I first learned of my BRCA mutated status, you’d know what a relief this is to me). When I wake up from surgery it will be with reconstructed breasts – though they won’t be picture perfect yet and will still need some work and revision surgery about 12 weeks later, which means even more time needed for recovery.
The DIEP uses fatty tissue and skin from the abdomen to reconstruct. The stomach area is cut from one end to the other leaving one hell of a scar – about twice the size of a c-section scar. Fat is scooped out as well as a subcutaneous layer of skin. Subcutaneous means ‘just under the skin.’ Small blood vessels are removed with this skin and then attached to blood vessels in the breast area (this is why the term ‘flap’ is used) after the mastectomy – that’s the part that makes it microsurgery – it’s all so small that the surgeons need to use a microscope to see what they’re doing. Tricky stuff! The end result of my stomach area will be much the same as if I had a tummy tuck. No stomach muscles are cut with the DIEP. That means that the muscle integrity in the stomach isn’t compromised. It’s also less healing to worry about. That’s a good thing.
Nipple reconstruction is optional and I’m still leaning toward not having this done at all. I’ll save that subject for another entry.
The mastectomy requires an incision from the lower portion of the breast (either directly under the nipple or to the outer sides of it) – and as much of the breast and fatty tissue that can be removed, gets removed.
This surgery will require 12-14 hours (if all goes well) of being under anesthesia and involves a lot of slicing, scraping, precise removal of tissue and skin, attaching and stitching – it’s going to be quite a recovery process! Drains are placed in each new breast and in each side of the stomach. These have to stay in for 2-5 days, and from what I’ve heard, they are more of a nuisance than anything.
There are a few advantages of having a flap procedure for reconstruction versus expanders/implants. While the recovery is harder at the beginning (more of the body needs to heal), overall it’s over sooner than those who go the implant route – which takes many months of weekly or bi-weekly fills, stretching the skin out enough for the implants and then a final exchange surgery.
With the DIEP my breasts will grow or shrink with me as I lose or gain weight. Another advantage to having a flap reconstruction over implants is that I won’t have to worry about capsular contracture – my body won’t reject its own fat.
Of the multitude of reconstruction options out there, each one has advantages and disadvantages and who gets what kind should be based on the individual. Different women have different needs/wants.
_____________________________________________________________________________
DIEP
November 1, 2009 by Teri Smieja
I’ve been talking awhile now about my fast approaching PBM – the DIEP that I’m having on January 12, 2010. For some reason saying ‘in January’ still made it seem far away. When I wrote yesterday’s blog entry instead of saying ‘in January’ I said ‘in a little over two’ months. Wording it that way made me realize how close it is – two months! I have no doubt that I’m going to be thinking and therefore blogging about this a lot more frequently in the next two months. I’ve already spent a lot of time explaining WHY I’m doing what I’m doing, so why not explain WHAT it is that I’m doing….
These days there are many different reconstruction options available to women who have mastectomies. When I first started learning about BRCA mutations, preventative surgeries and reconstruction, I was overwhelmed with all of the choices available. After a lot of research and thought I finally decided that the DIEP flap was the best option for me.
PBM = Prophylactic Bilateral Mastectomy – Prophylactic refers to the preventative aspect of the surgery. When a woman has her breasts removed BEFORE they have cancer then it is a PBM. PBM is NOT a specific reconstruction type; it’s the surgical removal of healthy breasts – bilateral means both breasts, also known as a double mastectomy.
DIEP = Deep Inferior Epigastric Perforator Flap. This is one of many reconstruction options available. It’s a highly technical and difficult surgery to perform and not just any doctor can do it. The DIEP can be used as immediate or delayed reconstruction. In my case I’ll be having a PBM with an immediate DIEP reconstruction. I will never have the experience of waking up and looking down to see no breasts on my chest (if you knew how much this image haunted me when I first learned of my BRCA mutated status, you’d know what a relief this is to me). When I wake up from surgery it will be with reconstructed breasts – though they won’t be picture perfect yet and will still need some work and revision surgery about 12 weeks later, which means even more time needed for recovery.
The DIEP uses fatty tissue and skin from the abdomen to reconstruct. The stomach area is cut from one end to the other leaving one hell of a scar – about twice the size of a c-section scar. Fat is scooped out as well as a subcutaneous layer of skin. Subcutaneous means ‘just under the skin.’ Small blood vessels are removed with this skin and then attached to blood vessels in the breast area (this is why the term ‘flap’ is used) after the mastectomy – that’s the part that makes it microsurgery – it’s all so small that the surgeons need to use a microscope to see what they’re doing. Tricky stuff! The end result of my stomach area will be much the same as if I had a tummy tuck. No stomach muscles are cut with the DIEP. That means that the muscle integrity in the stomach isn’t compromised. It’s also less healing to worry about. That’s a good thing.
Nipple reconstruction is optional and I’m still leaning toward not having this done at all. I’ll save that subject for another entry.
The mastectomy requires an incision from the lower portion of the breast (either directly under the nipple or to the outer sides of it) – and as much of the breast and fatty tissue that can be removed, gets removed.
This surgery will require 12-14 hours (if all goes well) of being under anesthesia and involves a lot of slicing, scraping, precise removal of tissue and skin, attaching and stitching – it’s going to be quite a recovery process! Drains are placed in each new breast and in each side of the stomach. These have to stay in for 2-5 days, and from what I’ve heard, they are more of a nuisance than anything.
There are a few advantages of having a flap procedure for reconstruction versus expanders/implants. While the recovery is harder at the beginning (more of the body needs to heal), overall it’s over sooner than those who go the implant route – which takes many months of weekly or bi-weekly fills, stretching the skin out enough for the implants and then a final exchange surgery.
With the DIEP my breasts will grow or shrink with me as I lose or gain weight. Another advantage to having a flap reconstruction over implants is that I won’t have to worry about capsular contracture – my body won’t reject its own fat.
Of the multitude of reconstruction options out there, each one has advantages and disadvantages and who gets what kind should be based on the individual. Different women have different needs/wants.
More Fodder for the Doubting Mind.....
Abstract
Bilateral prophylactic mastectomy without reconstruction is not accepted by the majority of patients. Successful reconstruction is therefore a mandatory condition for prophylactic mastectomy. Of the many options for autologous breast reconstruction, the deep inferior epigastric perforator (DIEP) flap best meets requirements for bilateral reconstruction in selected patients. The goal of this study is to verify the feasibility of the procedure in our conditions and to find out how it is accepted by patients.
We present 55 consecutive patients who were scheduled for bilateral DIEP flap reconstruction during a 4-year period. We reviewed medical charts, performed clinical assessments and processed anonymous questionnaires. There were 77 immediate and 33 delayed breast reconstructions.
There was 100% flap survival and no microanastomoses revisions. In 11 patients (10%) the surgeon preferred to convert the DIEP into a mini transverse rectus abdominis muscle (miniTRAM) flap in order to provide adequate blood supply. Complications: revision for haematoma under the flap in four patients (7.2%), excessive blood loss in four patients (7.2%) and partial mastectomy skin flap necrosis in 10 immediate breast reconstructions (12.9%). Patients' evaluation of the aesthetic result was good or excellent in 96.2% of cases. In 33.9% of patients the postoperative quality of life was considered unchanged and 50.9% of them it even improved.
The DIEP flap is recommended for bilateral breast reconstruction. Occasional conversion into a miniTRAM flap can increase the total flap survival rate. Bilateral prophylactic mastectomy and DIEP flap reconstruction are very well accepted by patients.
Bilateral prophylactic mastectomy without reconstruction is not accepted by the majority of patients. Successful reconstruction is therefore a mandatory condition for prophylactic mastectomy. Of the many options for autologous breast reconstruction, the deep inferior epigastric perforator (DIEP) flap best meets requirements for bilateral reconstruction in selected patients. The goal of this study is to verify the feasibility of the procedure in our conditions and to find out how it is accepted by patients.
We present 55 consecutive patients who were scheduled for bilateral DIEP flap reconstruction during a 4-year period. We reviewed medical charts, performed clinical assessments and processed anonymous questionnaires. There were 77 immediate and 33 delayed breast reconstructions.
There was 100% flap survival and no microanastomoses revisions. In 11 patients (10%) the surgeon preferred to convert the DIEP into a mini transverse rectus abdominis muscle (miniTRAM) flap in order to provide adequate blood supply. Complications: revision for haematoma under the flap in four patients (7.2%), excessive blood loss in four patients (7.2%) and partial mastectomy skin flap necrosis in 10 immediate breast reconstructions (12.9%). Patients' evaluation of the aesthetic result was good or excellent in 96.2% of cases. In 33.9% of patients the postoperative quality of life was considered unchanged and 50.9% of them it even improved.
The DIEP flap is recommended for bilateral breast reconstruction. Occasional conversion into a miniTRAM flap can increase the total flap survival rate. Bilateral prophylactic mastectomy and DIEP flap reconstruction are very well accepted by patients.
I need to hear that I am not alone (and not crazy)...
Oh, the date for my surgery is coming fast and furiously closer. I am scared. I admit this only to my DH, who is very supportive. BUT I need to hear about or from people who have had non-invasive bc AND who took the courageous step toward bilateral mastectomies. I was googling Rene Syler and found this. I first learned of Rene Syler, who had a PBM two years ago, when I was in a plastic surgeon's office in Boston. There was a magazine with an article of her. I hadn't thought of her or that article until now. Now is when I need the reinforcement and support to keep me focused on moving ahead. It really isn't about my breasts, it's about staying alive and healthy for my kids. So, anyway, this is an excerpt from an online article on Rene Syler.
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More From This ArticleProphylactic Mastectomy the Facts
While no national statistics exist, in the last five years more women at high risk for breast cancer—those with a strong family history, a genetic predisposition or with biopsies that indicate certain abnormal cell growth—are opting for prophylactic mastectomies, reducing their likelihood of developing breast cancer by up to 98 percent. "Women are choosing to be proactive in risk reduction," says Dr. Cheryl Perkins, clinical adviser for Susan G Komen for the Cure. "[The procedure] has become more readily available, more sophisticated and refined."
Most women are pleased with the results. "We find that almost always, quality of life improves," says Syler's own doctor Virgilio Sacchini, attending surgeon at Memorial Sloan-Kettering Cancer Center in New York City.
________________________________________________________________________________
More From This ArticleProphylactic Mastectomy the Facts
While no national statistics exist, in the last five years more women at high risk for breast cancer—those with a strong family history, a genetic predisposition or with biopsies that indicate certain abnormal cell growth—are opting for prophylactic mastectomies, reducing their likelihood of developing breast cancer by up to 98 percent. "Women are choosing to be proactive in risk reduction," says Dr. Cheryl Perkins, clinical adviser for Susan G Komen for the Cure. "[The procedure] has become more readily available, more sophisticated and refined."
Most women are pleased with the results. "We find that almost always, quality of life improves," says Syler's own doctor Virgilio Sacchini, attending surgeon at Memorial Sloan-Kettering Cancer Center in New York City.
Sunday, January 17, 2010
Less than 2 months away....
My surgery in now less than two months away. As a way of blocking this fact out of my mind, I have been cleaning and organizing!! The attic is done, the basement is done (well almost done), the garage has been cleaned, the girls' bedrooms have been rearranged and one room turned into a playroom, Jie Jie's paperwork has been put in plastic sheets and saved in a pretty pink binder, DV tapes have been transferred to DVDs and that's just the beginning.
Next up is FINALLY, Mei Mei's lifebook and video. In the meantime I have been working on revamping my website - for maybe the 10th time. Each year I learn a bit more about website design and want to put all that knowledge to work.
I know that all these projects are diversions from the fact that in less than two months I will CHOOSE to have both of my breasts removed and replaced with the belly fat that I am trying very hard to grow. It's probably silly, but I don't want to get down to Boston and have the plastic surgeon tell me that there just isn't enough 'material' to harvest. Sidetrack: the first time I heard the word "harvest" in relation to my body was the very first plastic surgeon I met with. He talked about a 22-hour surgery and carving my back up to make new breasts, only to have to use implants after all that. I ran from his office just about as fast as my legs would carry me.
So now, I am looking at a 12-hour surgery, but using my belly. They say the bonus is that I get a tummy tuck in the deal. I guess that is good, it's just that I am a believer that I could create a flatter tummy if I tried - all by myself and without the help of a scapel. Anyway, I will get a tummy tuck and a new bellybutton. I like the old one, but I get a new one. I don't want to ask why or how. Everytime I see a medical show on tv and they start to cut someone open, I cringe. I know that will be me.
Another sidetrack: during my first biopys my breast surgeon was talking me through it. She offered to show me the razor-like device she was using to poke my skin. I did glance at it, but then told her very clearly that I really didn't need to see anything more. My eyes stayed glued to a poster on the ceiling. It was a poster of a head, maybe Einstein, maybe Freud, maybe it was a generic head with comments of when things were invented and how long it took and something about doubters. I am surprised that I remember that much, but then again 45 minutes is a long time to be staring at something in an attempt to avoid something very unappealing - like my body being cut open.
For the end of a long day, long weekend, I seem to have come to life. Well, 24 is about to start so I will join the millions of others and watch the season premier. Although I much prefer the drama of Desperate Housewives.
Next up is FINALLY, Mei Mei's lifebook and video. In the meantime I have been working on revamping my website - for maybe the 10th time. Each year I learn a bit more about website design and want to put all that knowledge to work.
I know that all these projects are diversions from the fact that in less than two months I will CHOOSE to have both of my breasts removed and replaced with the belly fat that I am trying very hard to grow. It's probably silly, but I don't want to get down to Boston and have the plastic surgeon tell me that there just isn't enough 'material' to harvest. Sidetrack: the first time I heard the word "harvest" in relation to my body was the very first plastic surgeon I met with. He talked about a 22-hour surgery and carving my back up to make new breasts, only to have to use implants after all that. I ran from his office just about as fast as my legs would carry me.
So now, I am looking at a 12-hour surgery, but using my belly. They say the bonus is that I get a tummy tuck in the deal. I guess that is good, it's just that I am a believer that I could create a flatter tummy if I tried - all by myself and without the help of a scapel. Anyway, I will get a tummy tuck and a new bellybutton. I like the old one, but I get a new one. I don't want to ask why or how. Everytime I see a medical show on tv and they start to cut someone open, I cringe. I know that will be me.
Another sidetrack: during my first biopys my breast surgeon was talking me through it. She offered to show me the razor-like device she was using to poke my skin. I did glance at it, but then told her very clearly that I really didn't need to see anything more. My eyes stayed glued to a poster on the ceiling. It was a poster of a head, maybe Einstein, maybe Freud, maybe it was a generic head with comments of when things were invented and how long it took and something about doubters. I am surprised that I remember that much, but then again 45 minutes is a long time to be staring at something in an attempt to avoid something very unappealing - like my body being cut open.
For the end of a long day, long weekend, I seem to have come to life. Well, 24 is about to start so I will join the millions of others and watch the season premier. Although I much prefer the drama of Desperate Housewives.
Wednesday, January 6, 2010
Reflections
Now for some reflections. I want to talk about my beautiful and loving daughters. Jie Jie and Mei Mei are truly the light of my life. When you are facing a very difficult decision and a very long (12 hour) surgery you start to think about all the things that are important to you. My DH is my best friend and the one person in this world that I undeniably rely on to hold me up. He has been supportive throughout this past year in a way I never would have expected. Accompanying me to each and every key appointment. Never complaining. Always deferring to 'my' decision. But in his eyes I could see that he doesn't want to see me battle breast cancer with chemo and radiation - if I can avoid it. He has always insisted on being there for me before, during and after my surgery. I could never have asked for a better partner in life.
Saturday, January 2, 2010
Happy New Year!
Two and a half months and counting. I used to be able to say that my upcoming surgery was 'next' year, but that time has come. Now I am still counting in months, next it will be weeks, then days, then hours, then minutes. I am scared. On New Year's Eve I created my will. What if something goes wrong? I know I can't or shouldn't think that way. But for those of you who know me know that I plan for the worst. Maybe that's bad karma, but I would rather be prepared.
When working on a will there are lots of choices to make. It's not all about money! There were alot of questions about health directives. So, on New Year's Eve I kept asking my DH if he would be willing to make all sorts of gut-wrenching decisions for me. He's a good sport and agreed.
One New Year's Day I started cleansing the house, starting in the attic. By March 15th I want to have my house all organized and orderly. I know in my heart, it's a 'just in case' scenario. I also know that women everyday have this surgery and not only survive it, but (later) say they wouldn't do it any other way.
I am still keeping my decision and my plans close to the chest, so to speak. So far, two of my sisters-in-law know. One sister-in-law is planning to come to my house and stay with the girls. There is no way to thank her for her kindness and generosity if I lived to be 100. I have also told a few of my closest friends. Not many since I don't want that to affect our relationship. I am telling only the people whom I believe will be genuinely helpful to me, DH or my daughters. I am not interested in telling people so that they will be 'in the know'.
When working on a will there are lots of choices to make. It's not all about money! There were alot of questions about health directives. So, on New Year's Eve I kept asking my DH if he would be willing to make all sorts of gut-wrenching decisions for me. He's a good sport and agreed.
One New Year's Day I started cleansing the house, starting in the attic. By March 15th I want to have my house all organized and orderly. I know in my heart, it's a 'just in case' scenario. I also know that women everyday have this surgery and not only survive it, but (later) say they wouldn't do it any other way.
I am still keeping my decision and my plans close to the chest, so to speak. So far, two of my sisters-in-law know. One sister-in-law is planning to come to my house and stay with the girls. There is no way to thank her for her kindness and generosity if I lived to be 100. I have also told a few of my closest friends. Not many since I don't want that to affect our relationship. I am telling only the people whom I believe will be genuinely helpful to me, DH or my daughters. I am not interested in telling people so that they will be 'in the know'.
Tuesday, December 8, 2009
March 15, 2010
March 15, 2010! It's overwhelming. The emotions connected to hearing this date are across the board. Relief. Fear. More Relief. More Fear. And believe it or not - pride. I am so damn proud of myself for making a decision. It would have been so much easier to wait and wait and worry and wait.
I will keep this to myself all day. I need to mull it over. I need to see what my 'gut' reaction is. I need to cry a little bit. I need to accept who I am and why I am making this decison.
One thing that does come to mind is that there is absolutely no advocacy from any professional connected to this decision. It's as if each person does his or her own thing. There is no breast center advocate who could help with discussing arrangements for family while I am in the hospital, or helping me to decide if I should come home after the procedure only to drive back to Boston a few days later or someone to just listen as I wrap my mind around my decision. I am not surprised, as this has been my experience from Day One.
I will keep this to myself all day. I need to mull it over. I need to see what my 'gut' reaction is. I need to cry a little bit. I need to accept who I am and why I am making this decison.
One thing that does come to mind is that there is absolutely no advocacy from any professional connected to this decision. It's as if each person does his or her own thing. There is no breast center advocate who could help with discussing arrangements for family while I am in the hospital, or helping me to decide if I should come home after the procedure only to drive back to Boston a few days later or someone to just listen as I wrap my mind around my decision. I am not surprised, as this has been my experience from Day One.
Monday, December 7, 2009
Decision MADE!
Today I made the decision to move forward with a prophylactic bilateral mastectomy. It was a year in the making and by far the toughest decision I have ever had to make. Although the final decision was mine to make, I want to thank my friends and family for being there every step of the way. You all rode the same rollercoaster with me and I will be eternally grateful to you all.
If you have followed my blog (sporadic as it is), you will know just how I have struggled with this decision. In the end, it is just the right thing to do. I appreciate that I am one of the lucky ones who has a chance to significantly reduce her risk of breast cancer before it becomes invasive breast cancer. Or at least I hope it hasn't reached that point.
I will now call the DIEP surgeon and make this decision official.
If you have followed my blog (sporadic as it is), you will know just how I have struggled with this decision. In the end, it is just the right thing to do. I appreciate that I am one of the lucky ones who has a chance to significantly reduce her risk of breast cancer before it becomes invasive breast cancer. Or at least I hope it hasn't reached that point.
I will now call the DIEP surgeon and make this decision official.
Friday, November 20, 2009
Still Deciding....
It has been a month or so since I last posted. Nothing new has happened. Still waiting for appt. with breast surgeon in Boston on Monday the 30th. I know that I will make the decision on Monday as I am meeting with the breast surgeon. She has requested all of my information/tissue samples ahead of time and will have a very good handle on all of my risk factors. I am feeling a bit scared, but at the same time I am just so ready to have this all behind me.
In the last week I have been studying my 2010 calendar very closely trying to target the 'right' time for surgery and recovery. THERE IS NO GOOD TIME! If I pick a winter date will I run into a higher risk of catching something like the flu while in the hospital and will we have to deal with icy roads (we live 4+ hours from Boston)? If I pick a later date will it run into summer, the season we live for all year long?
I just posted on breastcancer.org, so am hoping for some words of wisdom from my online friends.
In the last week I have been studying my 2010 calendar very closely trying to target the 'right' time for surgery and recovery. THERE IS NO GOOD TIME! If I pick a winter date will I run into a higher risk of catching something like the flu while in the hospital and will we have to deal with icy roads (we live 4+ hours from Boston)? If I pick a later date will it run into summer, the season we live for all year long?
I just posted on breastcancer.org, so am hoping for some words of wisdom from my online friends.
Thursday, October 15, 2009
DIEP - Moving Forward
Last week I met with another plastic surgeon in Boston. I liked him. So the problem was that I like both plastic surgeons I've met in Boston. That's a good problem to have. It boiled down to being in a recovery room with an oxygenation (sp?) machine and one nurse versus ICU for the 12-24 hours following surgery.
Now I need to have a consult with the breast surgeon they recommended. The process for that is that I have to call my PCP and request a referral, then I will make that appointment. Early on I got burned when I didn't know about out-of-network referrals and waiting for approval before the consult. Anthem did reimburse me, but it wasn't until much time/effort/apology on my part to educate them as to my explanations.
As this is becoming more real for me, I recognize the fact that I don't need to do anything. Cold Feet. Just when I think I can postpone the procedure indefinitely, I get reminders.
Just this morning I got an email from a lady who made me realize that I am LUCKY to have the option of doing something about my non-invasive breast cancer before it becomes invasive. I am truly appreciative of people who are willing to take the time to reach out. I can't tell you just how much this means to me and how much this influences me.
Now I need to have a consult with the breast surgeon they recommended. The process for that is that I have to call my PCP and request a referral, then I will make that appointment. Early on I got burned when I didn't know about out-of-network referrals and waiting for approval before the consult. Anthem did reimburse me, but it wasn't until much time/effort/apology on my part to educate them as to my explanations.
As this is becoming more real for me, I recognize the fact that I don't need to do anything. Cold Feet. Just when I think I can postpone the procedure indefinitely, I get reminders.
Just this morning I got an email from a lady who made me realize that I am LUCKY to have the option of doing something about my non-invasive breast cancer before it becomes invasive. I am truly appreciative of people who are willing to take the time to reach out. I can't tell you just how much this means to me and how much this influences me.
Monday, October 5, 2009
Fear, Worry, Bargaining......
I am actually getting a bit scared. My search for a plastic surgeon is nearing the end, which means that my impending surgery will be scheduled and I will lose my breasts. All this is by choice - sort of. The two-edged sword of LCIS leads me down two roads:
1. Do nothing drastic
2. Do something drastic
If I do nothing drastic then I it may be a matter of time that I get invasive breast cancer and my path will lead to mastectomy, radiation and/or chemo along with the lingering effects of that.
If I do something then I will be heading to surgery sooner rather than later, but I will eliminate the need for radiation and chemo. This makes sense. BUT I am scared. All my life I have been healthy. Other than a couple or car accidents in college and a kidney stone that landed me in the ER, I have been in pretty good shape until I started on the biopsy rollercoaster last September.
There is nothing quite like waiting for the results of a biopsy and having those results take weeks to receive. You get to do alot of thinking during that time. Your options become pretty clear as you wait. You wait. You wonder. You worry. You bargain with God. You pray. You hold your children closer. You connect with those closest to you. You pray. You worry.
As soon as the results come back, life goes back to the new normal. I don't have invasive cancer. You begin to almost forget about it. You move forward. You slip back into denial.
But the ongoing search for the right procedure and the right surgical team continues to keep my feet to the fire and moving toward my goal of reducing my breast cancer risk.
1. Do nothing drastic
2. Do something drastic
If I do nothing drastic then I it may be a matter of time that I get invasive breast cancer and my path will lead to mastectomy, radiation and/or chemo along with the lingering effects of that.
If I do something then I will be heading to surgery sooner rather than later, but I will eliminate the need for radiation and chemo. This makes sense. BUT I am scared. All my life I have been healthy. Other than a couple or car accidents in college and a kidney stone that landed me in the ER, I have been in pretty good shape until I started on the biopsy rollercoaster last September.
There is nothing quite like waiting for the results of a biopsy and having those results take weeks to receive. You get to do alot of thinking during that time. Your options become pretty clear as you wait. You wait. You wonder. You worry. You bargain with God. You pray. You hold your children closer. You connect with those closest to you. You pray. You worry.
As soon as the results come back, life goes back to the new normal. I don't have invasive cancer. You begin to almost forget about it. You move forward. You slip back into denial.
But the ongoing search for the right procedure and the right surgical team continues to keep my feet to the fire and moving toward my goal of reducing my breast cancer risk.
Monday, September 28, 2009
Reflections on Early Detection
Here is an overview of my conversation last winter with my second opinion oncologsit:
ME: "I have LCIS and want to know what I should do"
Oncologist: "You should go home and come back if you get 'real' cancer."
ME: "But isn't LCIS something to worry about?"
Oncologist: "There are a number of things that could kill you before breast cancer."
______________________________________________________________
That conversation pretty much threw me for a loop. I was embarrassed that I had wasted her time, upset that I had worried so much, and felt foolish that I would even considered a PBM.
I went home, stopped going online and generally forgot about my LCIS. It was always there, but in the back of my mind. Maybe the oncologist was right. Who am I to think that LCIS is a bigger deal? So why did my general practice doctor send me a sympathy/support note? Why did my OB/GYN tell me to get it out of my body? Why did my local oncologist tell me that she would not disagree with my decision if I chose a PBM? Were all these people wrong?
There were many times when I would think to myself, "Damn this early detection stuff. What is the point?" If you can't do something about, why bother to get tested? I was mad that I had entered into this whole world of "should I or shouldn't I?" There are no patient advocates for me. It's just me having to make this decision. There is no manual for early detection.
I know that I am lucky. I have choices. I have time. But the problem is that I have CHOICES. I have TIME. What should I do? Nothing? PBM? When should I do something? When is a good time to get her breasts removed and have your stomach opened from hip to hip?
About being lucky. Yes, I truly am lucky. A friend is going in for a mastectomy in two days - she's happy to have found it when she did. Her advice to me - get the breasts off. Other friends who have traveled this route say the same thing. Friends who haven't tell me to 'lop them off' - oh, if it were that easy.
I don't have any particular attachment to my breasts, other than they have always been a part of my body, much like my ears. The thought of removing any part of my body is unnerving. Yes, my breasts can be replaced, but at what cost?
And if I don't? Then what? Coulda, shoulda, woulda? Do I want to kick myself for not acting sooner? Hell no. So, in reflecting on early detection, I do realize that although I am told that I have choices and time I really don't. Combine LCIS with family history, dense breasts, increasing # of biopsies, no children by birth, etc. the writing is on the wall and I need to be smart about being here for as long as I can to take care of the most adorable, loving little girls in the whole world.
ME: "I have LCIS and want to know what I should do"
Oncologist: "You should go home and come back if you get 'real' cancer."
ME: "But isn't LCIS something to worry about?"
Oncologist: "There are a number of things that could kill you before breast cancer."
______________________________________________________________
That conversation pretty much threw me for a loop. I was embarrassed that I had wasted her time, upset that I had worried so much, and felt foolish that I would even considered a PBM.
I went home, stopped going online and generally forgot about my LCIS. It was always there, but in the back of my mind. Maybe the oncologist was right. Who am I to think that LCIS is a bigger deal? So why did my general practice doctor send me a sympathy/support note? Why did my OB/GYN tell me to get it out of my body? Why did my local oncologist tell me that she would not disagree with my decision if I chose a PBM? Were all these people wrong?
There were many times when I would think to myself, "Damn this early detection stuff. What is the point?" If you can't do something about, why bother to get tested? I was mad that I had entered into this whole world of "should I or shouldn't I?" There are no patient advocates for me. It's just me having to make this decision. There is no manual for early detection.
I know that I am lucky. I have choices. I have time. But the problem is that I have CHOICES. I have TIME. What should I do? Nothing? PBM? When should I do something? When is a good time to get her breasts removed and have your stomach opened from hip to hip?
About being lucky. Yes, I truly am lucky. A friend is going in for a mastectomy in two days - she's happy to have found it when she did. Her advice to me - get the breasts off. Other friends who have traveled this route say the same thing. Friends who haven't tell me to 'lop them off' - oh, if it were that easy.
I don't have any particular attachment to my breasts, other than they have always been a part of my body, much like my ears. The thought of removing any part of my body is unnerving. Yes, my breasts can be replaced, but at what cost?
And if I don't? Then what? Coulda, shoulda, woulda? Do I want to kick myself for not acting sooner? Hell no. So, in reflecting on early detection, I do realize that although I am told that I have choices and time I really don't. Combine LCIS with family history, dense breasts, increasing # of biopsies, no children by birth, etc. the writing is on the wall and I need to be smart about being here for as long as I can to take care of the most adorable, loving little girls in the whole world.
Saturday, September 26, 2009
It's a go!
On Thursday I met with the DIEP plastic surgeon in Boston. Although I have another consult set up in two weeks, I was impressed enough with her to tentatively schedule my DIEP. I still need to meet with the breast surgeon she recommended, so that will have some bearing on my plans, but I liked her and felt confident in her.
So far I have met with:
2 breast surgeons
4 plastic surgeons
2 oncologists
Still have:
1 plastic surgeon
2 breast surgeons
Then I will have a definite plan in place. I feel good about the DIEP. During the past few months I have been growing my "flap" so that there would be no question about my candidacy for the DIEP. I have been successful - during the past 3 months I have gained 10+ lbs. So when I asked for a "B" cup this doctor said it wouldn't be a problem. Good!!!
She also told me that the total time that I would be in surgery (bilateral mastectomy + DIEP reconstruction) would be 12 hours, possibly less. I was thrilled. The first plastic surgeon I met talked about 22 hours of surgery. Of course, I ran as fast as I could from his office.
So 12 hours sounds great!! I am relieved to find a plastic surgeon who can get me past all this and 'almost' whole again. I liked her!!!
So far I have met with:
2 breast surgeons
4 plastic surgeons
2 oncologists
Still have:
1 plastic surgeon
2 breast surgeons
Then I will have a definite plan in place. I feel good about the DIEP. During the past few months I have been growing my "flap" so that there would be no question about my candidacy for the DIEP. I have been successful - during the past 3 months I have gained 10+ lbs. So when I asked for a "B" cup this doctor said it wouldn't be a problem. Good!!!
She also told me that the total time that I would be in surgery (bilateral mastectomy + DIEP reconstruction) would be 12 hours, possibly less. I was thrilled. The first plastic surgeon I met talked about 22 hours of surgery. Of course, I ran as fast as I could from his office.
So 12 hours sounds great!! I am relieved to find a plastic surgeon who can get me past all this and 'almost' whole again. I liked her!!!
Tuesday, September 22, 2009
DIEP Consult: 2 days and counting.....
Well, I will know in two days if my plan for DIEP reconstruction after a bilateral mastectomy will work for me. I am meeting with a plastic surgeon in Boston and hope she says that I am a 'great' candidate for the DIEP. I am excited, scared and even more scared, but I want to get this breast cancer monkey off my back and reduce my risk to less than 10% from 50+%.
Having met with two plastic surgeons already, I have learned that the more belly fat I have going into the surgery, the better the outcome. Not that I should become obese, but I would like a B cup. As I have worked at gaining pounds, I have expanded my waistline, much to the dismay of my 7 year old. I have excess fat, which hopefully will become my new breasts. Seems rather bizarre, but this whole idea of making the decision to move forward with a bilateral mastectomy/reconstruction is bizarre.
There is no advocate to talk with, no one who can make this decision for me. In the end I have gathered all the information I can from books, breast cancer websites, medical websites, survivors, breast surgeons, oncologists and plastic surgeons. I feel ready to move forward.
Having met with two plastic surgeons already, I have learned that the more belly fat I have going into the surgery, the better the outcome. Not that I should become obese, but I would like a B cup. As I have worked at gaining pounds, I have expanded my waistline, much to the dismay of my 7 year old. I have excess fat, which hopefully will become my new breasts. Seems rather bizarre, but this whole idea of making the decision to move forward with a bilateral mastectomy/reconstruction is bizarre.
There is no advocate to talk with, no one who can make this decision for me. In the end I have gathered all the information I can from books, breast cancer websites, medical websites, survivors, breast surgeons, oncologists and plastic surgeons. I feel ready to move forward.
Wednesday, September 16, 2009
Loving Life.....Questioning.....
Some days are just so wonderful and today is one of those days! I am home with MeiMei. We've gone on walk, painted and picked pumpkins! We had a lovely lunch of mac & cheese and mandarin oranges. What I really like is that this is just an ordinary day. As I face one of the biggest decisions of my life, what I really want is just more ordinary days with my family.
I don't want regrets about 'jumping the gun'. My biggest fear is that I will end up with lifelong residual pain because I couldn't continue to live with the risk (50 - 85%) of breast cancer. By the time I have my surgery I hope to have total confidence in my decision. However, in the meantime, I will question everything.
As breast cancer continues to target those all around us I am reminded that I may be jumping the gun (before a diagnosis of invasive bc), but I continue to see just how devastating the diagnosis of bc is when it strikes. Although I worry that my LCIS could be spreading as I type this, I am comforted to know that statistically I am still a Stage 0.
In the next month I will meet with two plastic surgeons in Boston, a breast surgeon in Boston and my current breast surgeon. By the end of October I hope to have my game plan in place. When you are feeling just fine and having an ordinary day it seems so out-of-place that in a few months I will be recovering from a bilateral mastectomy and DIEP reconstruction. Well, I think I will get back to my ordinary day and finishing painting.
I don't want regrets about 'jumping the gun'. My biggest fear is that I will end up with lifelong residual pain because I couldn't continue to live with the risk (50 - 85%) of breast cancer. By the time I have my surgery I hope to have total confidence in my decision. However, in the meantime, I will question everything.
As breast cancer continues to target those all around us I am reminded that I may be jumping the gun (before a diagnosis of invasive bc), but I continue to see just how devastating the diagnosis of bc is when it strikes. Although I worry that my LCIS could be spreading as I type this, I am comforted to know that statistically I am still a Stage 0.
In the next month I will meet with two plastic surgeons in Boston, a breast surgeon in Boston and my current breast surgeon. By the end of October I hope to have my game plan in place. When you are feeling just fine and having an ordinary day it seems so out-of-place that in a few months I will be recovering from a bilateral mastectomy and DIEP reconstruction. Well, I think I will get back to my ordinary day and finishing painting.
Saturday, September 5, 2009
Moving Forward
For a few minutes I just want to take a step back and fill in some details. When I met with the oncologist at Dana-Farber she said my risk was 50%+. She did not recommend my chosen course of action. She suggested that I wait and IF I did get cancer it would be caught quickly. In no uncertain terms she told me that LCIS is not cancer and that she had never treated anyone for LCIS. She made me feel very small and stupid for even making an appt to see her. I left with my tail between my legs. I told myself that I would follow her recommendations UNTIL I got on the biopsy rollercoaster. My first post-diagnosis biopsy was in May with 19 days between biopsy and results. During those 19 days I did alot of thinking and bargaining.
On the thinking side I realized that with breasts that are 'complicated' and with a family history I just might get a diagnosis of invasive bc at some point. So, I asked myself if I wanted to be 60 or 65 or 70 and having to deal with BM and Reconstruction. The very clear answer to that was a resounding, "NO". Knowing in my heart that the timing is right now, I am moving forward with what is up there with the toughest decision of my life.
On the bargaining side, I did alot of talking to God during that 19 days. I said that if the results were negative this time that I would move forward and be pro-active in reducing my bc risk. I realized that there are two types of LCIS people. Those who can deal with the risks and the alternating mammos and mri and those who cannot. I know which group I fit into now. Different people, different choices.
On the thinking side I realized that with breasts that are 'complicated' and with a family history I just might get a diagnosis of invasive bc at some point. So, I asked myself if I wanted to be 60 or 65 or 70 and having to deal with BM and Reconstruction. The very clear answer to that was a resounding, "NO". Knowing in my heart that the timing is right now, I am moving forward with what is up there with the toughest decision of my life.
On the bargaining side, I did alot of talking to God during that 19 days. I said that if the results were negative this time that I would move forward and be pro-active in reducing my bc risk. I realized that there are two types of LCIS people. Those who can deal with the risks and the alternating mammos and mri and those who cannot. I know which group I fit into now. Different people, different choices.
Friday, September 4, 2009
Back in the Saddle....
My summer was terrific. I put on hold all my medical appointments, calls, concerns..... It most likely is the last summer of having my very own breasts and I planned to totally enjoy it. And I did enjoy every minute of my summer at the lake.
Now I am back in the saddle. My first day back in town I called Boston to schedule a second opinion with another plastic surgeon. I haven't yet seen the first one, but I don't want to put all my money in one bank, so to speak. Plus I am hearing some very good things about this other doctor.
I am slowly wrapping my brain around the fact that my future breasts are in my belly! So, I have been 'feeding the flap' all summer. Maybe that's another reason it has been a good summer!! Why would I do that? Well, I am not skinny, but last winter the local ps who does the tram and latissimus dorsi told me that if I weighed 175 and had had 3 babies that I would be a great candidate for the flap procedure. He said that as it is I would need an implant in addition to whatever carving he was planning to do. That didn't make much sense, but I did walk away (very fast) with the idea that if my breast were in my belly area that I would want to make them as big as I could to look normal again. I am not sure if that was/is necessary, but I don't want to be a marginal candidate for the DIEP and I want at least a B cup!!
So as I sit here my stomach is growing! I really don't like this. However having a growing belly makes me motivated to get this procedure behind me as soon as possible after January 1, 2010.
Now I am back in the saddle. My first day back in town I called Boston to schedule a second opinion with another plastic surgeon. I haven't yet seen the first one, but I don't want to put all my money in one bank, so to speak. Plus I am hearing some very good things about this other doctor.
I am slowly wrapping my brain around the fact that my future breasts are in my belly! So, I have been 'feeding the flap' all summer. Maybe that's another reason it has been a good summer!! Why would I do that? Well, I am not skinny, but last winter the local ps who does the tram and latissimus dorsi told me that if I weighed 175 and had had 3 babies that I would be a great candidate for the flap procedure. He said that as it is I would need an implant in addition to whatever carving he was planning to do. That didn't make much sense, but I did walk away (very fast) with the idea that if my breast were in my belly area that I would want to make them as big as I could to look normal again. I am not sure if that was/is necessary, but I don't want to be a marginal candidate for the DIEP and I want at least a B cup!!
So as I sit here my stomach is growing! I really don't like this. However having a growing belly makes me motivated to get this procedure behind me as soon as possible after January 1, 2010.
Wednesday, July 29, 2009
A Year From Now
A year from now I want to be on the other side of my breast cancer. I want to be sitting at the lake with nothing more on my mind than the weather and a good book. I want my children not to worry about me. I want my husband to go out and play golf without worries. I want to be normal. I don't want to be glued to the internet for the latest information on breast cancer, reconstruction, etc. I don't want any residual pain from my bilateral mastectomy and DIEP reconstruction. I want to be free of it and be moving forward.
Sunday, July 26, 2009
What if...
What if I decide to move forward with the surgery in Boston? That will mean about 2 weeks in Boston. Five to seven of those days I will be in the hospital in pain and with multiple drains. The rest of that time I would be somewhere else (???) in pain and with multiple drains and my family. The somewhere else concerns me. A hotel - how will I sleep? A friend - how can you ask someone to do that? Other concerns - what about JieJie's school? How can we leave her home? How can we have them both with us?
After my appointment on the 24th of September many of these questions will be answered. I am not the first out-of-town person to deal with all this. But it worries me.
After my appointment on the 24th of September many of these questions will be answered. I am not the first out-of-town person to deal with all this. But it worries me.
Friday, July 24, 2009
Who Needs to Know?
Who needs to know? I have a few close friends and a few family members who know what I am dealing with. They have offered to help and I know they mean it. Some friends have fallen by the wayside, while others have stepped up to offer support. This is truly a period of great change, not only for my body, but also my life. This is a time when you realize who and what are most important to you and put your time and energy into them. It is time to shed the relationships that don't work and cherish the ones that do.
I recently read (and couldn't put down) a book called, Between Me and the River, in which the author, Carrie Host, tells the story of her cancer diagnosis, treatment and recovery. She discusses everything you can possibly imagine related to cancer, relationships, quality of care, medical mistakes, telling children, miracles, etc. I only hope that I can face all the challenges ahead of me with the same courage as Carrie.
What I am reading today...
Today I am reading the best book in print on breast cancer reconstruction. It is full of very detailed descriptions of the procedures, the pain, the process, etc. Since I am meeting with the plastic surgeon who will most likely perform my reconstruction I need to know as much as I can going into our meeting as possible. I highly recommend this book for anyone facing breast surgery and reconstruction AND for anyone who will be caring for someone who is facing surgery. A MUST READ.
Tuesday, July 7, 2009
Do I Really Need to Care?
Well that is the question of the week. As I find myself on the computer during my vacation at our cottage, I am beginning to wonder if I should do anything about my non-invasive cancer. So what if it becomes invasive - it's treatable. That has been my thinking this week. I don't want to have my body cut open and have months (maybe years) of residual pain. For what? It's hard enough being a 50 year old mom of two little children without adding 15 hours of surgery to the mix, not to mention the recovery time.
However, I had a reality check today. I saw an old friend, who had a BM a few years back. She said that se was still on breast cancer medication that had some significant side effects, but was happy to be alive. I last saw her after her bilateral mastectomy. She was upbeat and quite positive. I hadn't realized that for her having breast cancer is an ongoing issue. I had assumed that once you are over the initial trauma to your body and radiation/chemo then all was well. Not so.
I am reminded that I am lucky, very lucky. I truly don't want surgery. I don't want to have my body carved up. I don't want pain. BUT I do want to move on with my life and live it. I don't want to kick myself years down the road if my in situ cancer becomes full blown and I could have done something about it. I don't want to kick myself down the road because I jumped the gun on my in situ cancer and am living with pain from surgery.
This is the strangest situation to be in. The decisions are all mine. MINE. No one else can make these decisions. Just me. My question is: How do you make the right decision? Do I wait? Do I act now? What will tip the balance on this one?
However, I had a reality check today. I saw an old friend, who had a BM a few years back. She said that se was still on breast cancer medication that had some significant side effects, but was happy to be alive. I last saw her after her bilateral mastectomy. She was upbeat and quite positive. I hadn't realized that for her having breast cancer is an ongoing issue. I had assumed that once you are over the initial trauma to your body and radiation/chemo then all was well. Not so.
I am reminded that I am lucky, very lucky. I truly don't want surgery. I don't want to have my body carved up. I don't want pain. BUT I do want to move on with my life and live it. I don't want to kick myself years down the road if my in situ cancer becomes full blown and I could have done something about it. I don't want to kick myself down the road because I jumped the gun on my in situ cancer and am living with pain from surgery.
This is the strangest situation to be in. The decisions are all mine. MINE. No one else can make these decisions. Just me. My question is: How do you make the right decision? Do I wait? Do I act now? What will tip the balance on this one?
