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."
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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.

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.

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.

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.

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.