Surgery Debrief

Hi Team,

I had a long and educational appointment with my breast surgeon yesterday, lots of stuff reviewed and a few big decisions made. First, it looks like in order to coordinate schedules with my breast surgeon (who will do the mastectomy) and the plastic surgeon (who will do the reconstruction), we will need to move my surgery date out to 9/15 - still tentative, we'll know for sure in the next week or so once the PS (plastic surgeon) confirms. On that note, I have my first appointment scheduled with my plastic surgeon for next Friday, a week from today - here's his website: Dr. Roderick Simonds

The big decision making I did in the appointment yesterday was between doing a bilateral (both breasts) or unilateral (only one side) mastectomy. I decided to do both, and here's why: Although I tested negative for the BRCA genes, there are a lot of genes out there that are unmapped and because of my age it is more likely that my breast cancer is genetic. If it wasn't genetic, there was only a .5% chance of me getting breast cancer, which while it still exists - isn't likely. It is more likely at my age that it is genetic, and we just don't know the gene yet. So this is one assumption that we are making to base the decision on. IF we treat this as a genetic cancer, my likelihood for recurrence is around 60%. Taking both breasts instead of just the one decreases my risk by 95%. So that is to say, my risk of recurrence goes from 60% down to just 2-3%. So I choose to definitely do both. Now there still is the option for me to do one now, and wait to do the other one until after I have kids so that I could breastfeed. In the mean time we would just monitor the other breast with MRI's and mammograms every 6 months (each one once a year so the alternate every 6 mos). I am choosing not to wait on it for a couple of reasons - first, I don't feel strongly about breast feeding - I think it's possible to have a healthy child, strong bond, and well adjusted all without breast feeding. I feel more strongly that I don't want to have to go through this process again. Also, I had my last obgyn appointment last October where I got a breast exam and we did not catch the cancer, so this past one developed in less than 6 mos. Now, granted that was not an MRI or Mammogram this past time, so we may catch it sooner. Thirdly, if I do the surgery on both sides now and just get it over with, I will not have to go through the whole process twice and the symmetry will be slightly better doing it all at once. Last but not least, I know I am this type of person - now that I have caught one cancer myself, I will probably freak out at every little tissue thickness I feel, leaving myself wondering if it is going to develop into cancer. Needless to say, there are a lot of factors and it's a big decision. It was probably one of the harder ones, as everything else seemed to have a strong recommendation one way or another and this was really just - what is most comfortable to me, and what are my priorities in life. Tricky. I do feel good about my decision though.

The other thing we reviewed is a lot of just exactly what will the surgery entail. So here it goes: They will remove all of my breast tissue including the nipples by cutting a circle around the nipple and removing it through that hole. They will also cut a small incision under my arm to remove at least one lymph node. During surgery, they will send that lymph node down to the lab to be cut open and looked at under a microscope, and if they do not find cancer, they will not remove any more lymph nodes and close that cut back up. If they do see cancer in that lymph node, then they will remove more lymph nodes to see how far it has spread. They don't anticipate finding cancer in the lymph nodes, but we will have to wait and see. If they do find cancer in the lymph nodes, then I will most likely have to do radiation as well. If they don't, then I probably won't have to do radiation. Then, after breast tissue and lymph node biopsy is done, the plastic surgeon will take over and put empty (or a small amount of saline, not sure yet) implants behind my smaller pectoral muscle - they cannot put implants just between skin and the world as there is just not enough protection with no breast tissue there to cover it. The initial implants are temporary Tissue Expanders (TEs) that will be pumped up to the size of my final implant to stretch the pectoral muscle and skin up to the size of my new breasts. This whole process of reconstruction will have more detail next week after meeting with the PS. Initially, my skin will look fairly loose and empty and over time these tissue expanders will be pumped up then eventually (usually 6-9mos) I will have another surgery to exchange them for permanent silicone implants. When I go home from my surgery in September, I will have a pain pump for the first three days that will have tubes under my skin and around my new breasts that administers a local anesthetic every so often. That will get taken out after 3 days. I will also have a tube with a little bulb at the end coming out of my side on either side that is for fluid drainage, since I will have fairly empty skin at first, the body tends to fill it with fluid that would just sit there and not be absorbed. So for about the first 2-3 weeks depending on how quickly my body stops making this fluid, I will have these tubes coming out of my sides and draining the fluids into little sacs, which I will have to discreetly hide in my clothing or clip to my waist - and I will have to empty and measure this fluid to see how I am progressing. After 2-3 weeks, my body will hopefully be making less fluids, and I will be able to get those tubes out. I will go home w/ the whole area wrapped in bandages and I will come in to get those bandages changed every so often, so I will not be able to get the area wet for a while, and will have limited ability to raise my arms, etc .

That's pretty much the synopsis of the surgery - I will get more detail on what I can and can't do post-op exercise and movement wise, and a more final surgery date (and therefore date I can go back to work also) once I meet with the plastic surgeon next Friday.

I laid in bed last night trying to fall asleep and found myself feeling really anxious. For a little bit I laid there and thought 'Am I making the wrong decision? Is that why I feel anxious?' And I tried to put myself in the position of only taking one breast instead of two and see if that lowers my anxiety level, and it really didn't. I realized that I do think I'm making the right decision, I'm sure that based on all the information I have and what I prioritize in my life (not having to do all this over again if at all possible, and breast feeding secondary and just not as important to me), I am doing the right thing. I am just anxious over the whole process. It's a lot to swallow and it's going to be very different, painful, and visible to the outside world. I won't have any feeling in my breast area anymore, and I'll have incision marks on my skin and no nipples. I can eventually tattoo or get nipple reconstruction if I want, but that's a whole other process after all this. I know I will be fine, as life goes, you just have to take everything one day at a time, but looking at it all in my future does seem a bit overwhelming at times. Of course, so did chemo and I'm almost done with that now! But the less comforting thing about that, was that chemo was/is every bit as hard as I expected it to be and then some. So that just leaves me with the conclusion of just diving in, getting it over with and coming out on the other side happier, healthier and with "more character." :)

Love,

Amy