One year ago today.....

Has a whole year passed since my bilateral mastectomy and DIEP reconstruction? Really?!!! Capturing those thoughts and fears from a year ago is easy. It was such an emotional time for me and my family. Much of that time will forever be imprinted on my memory. The day we left home and drove the four hours to Boston felt like a march to my death. The last thing my then 4 year old said was, "I am afraid you are going to die." That was so sad. I tried to comfort her and reassure her, but she was afraid. Truthfully we were all a afraid. It's hard to imagine what a 14+ hour surgery would be like when you are waiting for it to happen.

BUT, on the other side, I can say that it was THE BEST THING I EVER DID FOR MY FAMILY!!! Significantly reducing my risk of breast cancer from 50-85% to 0-2% is life changing. Personally I feel better now than I did before the surgery. Well, it helps that I had a tummy tuck and the removal of painful breast tissue in the process.

In reflecting on my life one year ago today, I remember showering with the special pre-surgery soap, then getting dressed in my sweat pant outfit, then the walk from the Best Western Longwood to the surgical building, sitting on the round couches waiting for my name to be called up to the waiting area. As I type this I can still physically feel the very same emotions. The one thing that allowed me to put one foot in front of the other was my trust in Dr. Tobias and the confidence I had gained from other women who had walked this road before me. I remember being ready.

After the pre-surgical mark-up by Dr. Tobias with his purple marker, I was given some happy meds and off I went. My worries were gone as they wheeled me off. At that point Mike began his wait. I can't even imagine what it was like for him.

As the day wore on, I had the experts with me!! Assembling the right team was a challenge and a gift. I'll give you a bit of background. In 2008, after my second biopsy and with the diagnosis of LCIS, I decided to create a surgical plan just in case I needed it at some point. The line I had drawn in the sand was that if I had had to have a 3rd biopsy then I would move forward with a bilateral mastectomy with reconstruction.

The challenge was finding my team. I started with tons of online research and must say that breastcancer.org was my greatest resource. Thank you to all the women whom I will never meet, but who helped me during this time. I had been diagnosed with LCIS (as well as ALH, ADH and calcifications). My local breast surgeon often referred to my original breasts as "complex" and "busy". She was wonderful and I had a tough time making the decision to do my surgery out of town. Originally I had decided that I would do implants locally so that I could have my local breast surgeon do the surgery. Anyone who has walked this road knows how great the bond is between surgeon and patient. Doing it locally was also the easiest option. I wouldn't have to leave my kids for any extended time. Implants, although not my first option, were better than the latissimus dorsi option offered by the other plastic surgeon in town. Carving out my shoulder muscles didn't seem like a good idea to me.

Anyway, plan A came to a halt when my insurance provider said that neither of the local providers were in-network. Someone, much higher up, was looking out for me!!! I truly thank God each and every day for that roadblock. Next up was looking at my options in Portland. Another godsend was the plastic surgeon there who said I might be a candidate for the DIEP, which he didn't do any longer. According to my insurance provider no one in Maine did the DIEP, so in front of me was the gift. The gift of being able to look to Boston for my surgery.

Fastforward....I met with a plastic surgeon at one hospital and asked who she had trained with. I actually knew the answer to that question was Dr. Tobias at BIDMC, but wanted to confirm it. So, next up was a consult with Dr. Tobias at BIDMC. I was hooked when I met his nurse, Maria. Then I met him and knew this was the right choice for me.

Not everyone has the gift of time to research her options, so that was another gift I was given.

By the time I met with Dr. Tobias for the first time, my 3rd biopsy had come and gone. So, I was on my way to a bilateral mastectomy with DIEP reconstruction. BUT, I was still dragging my feet a bit. It's a huge decision when you are looking ahead. But when you are looking from the rearview mirror it was just a bump in the road.

A bump in the road? A year ago I never could have thought that. How could 14+ hours of surgery to remove and rebuild your breasts be seen as a bump in the road??? Today, as I type this that is how I see it. Obviously it is life changing, but for the better.

So, today I as reflect on my life a year ago, I want to thank God for getting me over some of the rough spots. I guess I will give you some advice on the rough spots for me. The first one was the phlegm that was left in my throat that I couldn't get out. It prevented me from being able to breathe, swallow, sleep, etc. It was awful. It was awful for two days. If it were to happen again, make them get it out!!!! The second rough spot was my sensitivity to morphine, which made me crazy until the pump was removed. If that happens to you, make them switch it out with something else.

I also want to give heartfelt thanks to my dear sweet husband. He was a saint and continues to be a gift in my life each and every day. Next my gratitude goes out to my sister-in-law, Dot. She'll never know how grateful we are that she stepped up and took care of our most precious gifts. And, of course, my friends who were with me every step of the way. Another gift I received was the gift of two DIEP Sisters, who were truly an inspiration to me as they made their journeys through cancer, treatment and surgery.

As you know my blog is coming to an end. I have Stage III on Thursday, March 31st, then a follow-up appointment. After that I will no longer blog, but will keep it out there for other women.

Hopefully my experience and my blog have been a resource and support to others who have faced some tough decisions in their journey to reduce their risk of breast cancer.

God Bless!
Love,
Joanie

Wow - My Blog Won an Award!!

It feels great to be recognized; however the reason I continue to offer my blog publicly is to inform and educate other women who are faced with decisions regarding what to do, where to go and how to choose when it comes to breast reconstruction. Again, the most important message I can convey is to do your homework. Get multiple consults so that you can compare. Dr. Tobias at BIDMC was the final of five plastic surgery consultations I had during my quest for the best. Personally, I don't think I could have found a more caring, more responsive team for me anywhere else.

Countdown Begins.....

Okay, so I haven't posted much about my upcoming surgery. This really surprises me. Time constraints have been a factor, like the start of a new school year, a Disney vacation, two classes I am taking, etc. But the reality is that I am not excited about this at all.

I've been squashing and denying all my fears at least until my pre-op appt, which is next week. There is really no sense in worrying about anesthesia, phlegm balls and the general risks from surgery until I have a chance to discuss my concerns with my doctors. My biggest concern is the anesthesia and making sure that I don't feel the same as I did when I came out of 14.5 hours of surgery. Truthfully, I don't think I could ever do that again!! Granted, most people don't have phlegm balls that prevent them from breathing, but that's another story. Still, it weighs heavily on my mind.

Next week I will meet with 'my team' and, I am sure, will feel more confident in my decision to move forward. It will be nice to be closer to being back to normal. And when I think about it, my goal, is for my kids to not be reminded of my surgery every time they see me. That alone will propel me forward.

I was reminded by another DIEP friend whose response to me when I said, "Three weeks from now I will be having surgery." Her response was, "Four weeks from now you will be recovering from that surgery." That really helped me to put it all in perspective. Stage II is such a small thing compared to Stage I. It is minor. BUT I feel great now and don't really want to feel like a post-surgical patient, even for a week.

In time I will wrap my mind around this procedure and get excited that I am so close to the finish line. One silver lining is that I get to visit with two DIEP friends while I am in Boston for pre-op AND I get to see my medical team again. I like that there is always a silver lining!!!

6 Month Anniversary!!

Today marks the 6 month anniversary of my bilateral mastectomy and reconstruction. I just want to report that I feel wonderful. I feel normal. Most days I don't even think about it. But when the 29th of the month approaches I do tend to reflect on how far I've come since March 29th.

A year ago I really was obsessing on whether or not I should have my breasts removed to fend off my risk of invasive breast cancer. There were endless hours of internet research trying to figure out if this was my best option or if I should wait and watch. There were endless hours connecting with new friends on the best breast cancer support site online. I can't say enough about the support these women gave me. I found women there who represented both sides of the question, "should I or shouldn't I?" Listening to both sides was key to making my decision. One thing that was very apparent to me was that in 3, 4, 5 or 10 years I DID NOT WANT TO BE spending endless hours at breastcancer.org. I did not want to waste another minute on this horrid disease. I wanted to be done with it and move on to living my life.

The only hurdle I had to moving on was a bilateral mastectomy with reconstruction. This was very scary to me. How could I possibly live through and recover from a 14.5 hour operation? Would I be normal after all that? Would I regret my decision? These were very real questions.

Sometimes in life you just have to take a leap of faith. I knew in my head that a PBM/DIEP was the right thing AND I found, what I believe to be, the best team in the world to do my procedure. I just had to get the courage to schedule my surgery. That was probably the toughest phone call I had ever made. Once it was made and the surgery was booked, I started reaching out to people I knew personally who had taken this path before me. Five friends come to mind as they spent lots of time with me on the phone answering questions like, "what do they feel like now?", "how did you make your decision?", "did you go with nipples or tattooing?", "what kind of follow-up have you needed?". You get the picture, nothing was off limits. These women were my lifeline. Not one person regretted her decision. No one was in pain. No one died. I could do it.

So on March 29th, 2010 I was as calm as I've ever been as I walked over to BIDMC for a 14.5 hour surgery. I knew I was doing what was right for me and for my family. I trusted my medical team. And now, I simply feel relief that that part of my journey is over. My risk of invasive breast cancer is now 0-2%, not 50-85%. I can live with that!!

Pre-Op Scheduled for Stage II

For the last few months I have been a resource to some friends who are facing the decision of whether to get the DIEP or not following their cancer diagnoses. But now I am the patient again. With Stage II looming on the horizon I am starting to focus on what I need to do and what I can expect from this procedure.

What I know is that Dr. Tobias will go in and smooth out the 'dog flaps/ears' on the abdominal incision. He will also do some lipo and add the fat to spots where breast tissue was taken. This doesn't seem too awfully invasive; however I am quite concerned about me and anesthesia. If you recall, I had a very tough time with that during Stage I, which was 14.5 hours long. When I came out I had a phlegm ball and couldn't breathe for a couple of days. Not breathing meant not sleeping and not sleeping meant "crazy" times. Then, on top of that, I have a sensitivity to morphine! I've been reassured that with this surgery which will be about 3 hours this should not happen again and they won't give me a morphine pump, but I do have my fears.

With all that in mind, I am still moving forward. Today I scheduled my pre-op appointments. I have timed these appointments so that I can dovetail my trip to Boston with a visit to a friend who is having Stage I that week. This will be my first visit to Boston by myself. I am excited about the adventure of the trip, but also that I don't have ask to anyone to watch the girls since DH can do that.

It feels like years since I have had to deal with referrals and authorizations, but I am back at it. Luckily I have a wonderful PCP whose staff 'gets it' and makes it easy for me. One thing I have learned along the way is that my insurance provider is very much a member of my 'team'. They may be the silent partner, but without them none of this would be possible. Before each appointment making sure that they are on the same page is essential.

So, now I need to wrap my mind around another surgery. One thing that is very very different this time around is that I am not spending endless hours on the internet like I did with Stage I. I want Stage II. I know that I am in good hands. I know that they will answer all of my questions and Maria has already done alot of that!!!

"More importantly, how does your husband like them?"

This is a post that has been waiting to come out. Maybe I am being a bit touchy, but when a friend's friend (male/55+) said, "More importantly, how does your husband like them?", I didn't take it well. I gave him just a cursory response, but later thought about the absolute thoughtlessness of this comment. He is great example of someone who truly doesn't get it. I did not have my breasts removed/replaced for any other reason than to reduce my risk of breast cancer. Going from a good B-cup to a small A-cup isn't about cosmetics. I've wondered what it is that I said that may have gotten him thinking I was in for enhancements. Anyway I just needed to get this off my chest!!

My blog is meant to be about my experience as a high-risk woman, diagnosed with LCIS (lobular carcinoma in situ) and when faced with my options, chose to have a prophylactic bilateral mastectomy with immediate DIEP reconstruction at Beth Israel Deaconness Hospital in Boston with the best doctors in the world (my opinion)! I have completed Stage I of my DIEP procedure. I still have one more surgery and two more office procedures before I am complete. Stage II is scheduled for November 5th.

My posts will continue, albeit sporadic since I have a pre-K daughter who attends school half-days and I am trying to fit my work into those short periods of time.

Pre-Admission Testing

Heading to Boston for pre-admission testing, blood donation and consults with both BS and PS. I will update after all of these appts. Just want to send my thanks to everyone who sent me emails about what to expect, what to ask and how to be assertive during the consults with my 'team'. Thank you, thank you , thank you. I have my notes all packed. This will serve as a good trial run for the real thing in 3 weeks. Getting nervous, but determined!!

I'M IN

Okay, so I had cold feet for a while. During that time I really thought I would back out for lots of good reasons, but several things have me moving forward:

1. My daughters (and DH) really need to get this behind us. It's like this huge thing in our lives and we can't move on until we get past it.

2. I spoke with 2 old friends who have BM, node biopsies, chemo...... They truly convinced me that being aggressive now is a whole lot better than waiting until I get 'real' cancer as advised by an oncologist at a high risk bc program at a teaching hospital. Of course, it's the flip of a coin whether on not I would ever get invasive cancer, but I don't like the odds.

3. My 'flap' is growing. I have been very focused on 'feeding the flap' and would like to get back to a normal size for me. But, the bigger the flap the bigger the breasts. Don't get me wrong. I will certainly not have huge breasts, maybe a full A cup if I am lucky. BUT, I want the DIEP procedure versus implants, so I have been doing my part to make that happen.

4. I am ready!! I am committed!!

So, I'm in!! I also couldn't have gotten to this point without all my friends, my online friends and my family. I am sending you all my love!!!

I could have posted this myself.....

This is from a blog I came across recently.......my feelings are the same....the procedure the same.....
_____________________________________________________________________________
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.

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.

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!!!

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.

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.

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.