Treatment #18: Last neoadjuvant chemo! and we met with surgeon

Wednesday was my LAST neoadjuvant (before surgery) chemotherapy treatment!!! Yippee! I am so excited that my body will finally have time to recover from all these chemicals! I forgot to mention last week that we already are noticing that my head hair is starting to come back after the week off of Taxol! I have a bit of short white fuzz on the top and sides, and longer brown hair in the back

On Tuesday, we met with the breast surgeon, Dr Rhei (pronounced Dr Ree). She sounded more positive about my recent MRI, mammogram and ultrasound results (which showed a reduction in size and a more wispy nature than before, but it wasn't gone) than I had felt after I saw them. She said it could be scar tissue and the cancer is gone. They won't know until a couple weeks after the surgery when they've had time to look at all the cells. Either way, she said I am eligible for a lumpectomy, but could opt for a mastectomy if I choose.

I went in leaning towards double mastectomy and came out leaning towards lumpectomy. She reinforced what everybody has said: there is no difference in survival between the surgery choices. She also said that there is a difference between the two surgeries when you consider recurrence, but it isn't very large. She couldn't quantify that difference, so Frank and I are still researching this part. She also mentioned that with mastectomy there are more risks and side-effects. She said many of her patients regret that their entire chest is numb. She also thought I have a higher risk towards blood clots and strokes during the mastectomy surgery and recovery. The risk of lymphodema is the same with both surgeries, since that has to do with how many lymph nodes are removed. I already know that the recovery difference is huge, and that range of motion is much more likely to be affected with mastectomy.

I've made a list of all the things I thought about with this decision, and it's very long. I'll share the high points.

1) Is my family cancer history strong enough that I should take the extra measure of mastectomy? My mom and maternal great grandmother had breast cancer. A great aunt and my maternal grandmother had ovarian cancer. Another great aunt and my maternal grandmother had uterine cancer. I've been tested and don't have the BRC genes, and they claim it is mostly the first degree relatives that are the most risk, and that's my mom. They felt one wasn't a strong enough reason. If one of my siblings develops breast cancer, that would significantly increase my risk (so for that, and for so many other reasons, don't get cancer, Janet, Ruth, and Eric!). At that point, though, I could go back and get a mastectomy.

2) Do the studies show that there is significant difference of risk of cancer occurring in the breasts with the different surgeries? This is surprisingly hard to determine. You would think that this is one study everybody would want done, but we can't find much about this. Still researching. If this is very similar risk, it does seem unnecessary to do mastectomy, since my only motivation to do it was to avoid getting breast cancer again.

3) What would happen if breast cancer recurs? She said even people who have double mastectomies can have breast cancer again. Not all tissue can be removed, and there is some in the skin itself. As long as I continue to monitor for it so it gets caught early, they would treat it, and people don't die from the recurring breast cancer, they die from cancer that has metastasized outside the breasts in the organs, brain, bones, etc, which is the same risk for both surgeries. Even though I couldn't do all the same chemo drugs I did this time, there are other drugs that can be used.

4) What would the quality of my life be after the surgeries? After a lumpectomy, I would pretty much be the same as now, with possibly more worries about cancer monitoring and recurrence. One difference is that I would definitely have radiation treatments, which is hard on the skin and makes people tired for a few months, both during and afterwards. I could need radiation after mastectomy too, depending on what surgery finds.

After a mastectomy, I would have a much longer and more difficult recovery. I would have some numbness, possibly lots of numbness. I would have no sexual sensation in the chest area, and could have pain. There's a risk for trouble with range of motion, which could limit the sports I could play as well as just general motion during life. I wouldn't do mammograms or MRIs anymore, but I would still need to do frequent self exams to note any changes.

5) I also wanted to know if she does aesthetic flat closure (which is a type of mastectomy without breast reconstruction, that is done so there is not extra skin when the surgeon closes up). She said she has not been trained in that, but she tries to make the scars smooth. She showed me one photo of a patient about my size and similar cancer location that had a reasonable scar from the procedure. So there was some degree of confidence that I would look as I would request, but not complete faith in that. She said there is no possibility to have a plastic surgeon close up the scars, because they can't get them in at all lately. I have no interest in reconstruction, so I didn't ask any questions about that.

So I left the appointment with two forms signed. One for a lumpectomy and one for a double mastectomy. I will decide and let them know, and they will schedule me for surgery between June 4 and June 18th.

We're trying to look at the results of the specific chemo protocol I've been on, but since it's so recent, it has only had about 40 months of data since it started. Interestingly, with triple negative tumors, the risk goes back to normal levels after 5 years, so that's most of the way there.

Anyway, I've got some thinking to do!

Wednesday was my last neoadjuvant chemo! I've been having more energy since the one week they skipped giving me the Taxol, so I have high hopes that my energy will return quickly now that I'm done. I still have low blood counts. My white blood cells are the lowest they've been, so I will continue to mask and avoid indoor places for a bit longer, probably until after the surgery.

All of the nurses and providers who helped me that day were excited and glad they got to see me on my last day. One told us "I've really enjoyed meeting you, and I hope we never see you again!" People did clapping and little happy dances, and I got a couple of hugs. Some have asked whether there was a bell I could ring - no, there wasn't. Just lots of happy people! Including me and Frank! We celebrated by going home, eating takeout, and watching a movie!