Be aggressive

 After my consult with the radiation oncologist, I spoke to Dr. Liu (the surgeon who performed my double mastectomy). I asked her if the tumor board happened to mention my risk of local recurrence when they discussed my case. I explained what I had learned about my intensive radiation plan, and the claim that my risk of local recurrence was 40% without radiation. She said she didn’t recall the tumor board mentioning it, but would talk to one of her radiation oncology colleagues. To be clear, this is not a second opinion. I could get one of those, but the reality is that I will have to have 5 days per week of radiation to (at least) my armpit no matter what, and driving to Indy for that is not practical. I just wanted to know if the “40%” risk assessment sounded right, because to me, it does not, and I wanted to know if the plan is reasonable (in other words, not “over treatment”). Radiation comes with its own risks, so I want to balance that with the cancer risk.

Dr. Liu got back to me yesterday. Her colleague said that the plan is reasonable, but he would personally put my local recurrence risk (without radiation) to be more like 20-25%. The problem seems to be that there are a number of different studies that don’t all line up, and my additional treatments confound things even more. I also believe that my radiation oncologist intentionally went with the highest number to “sell me” on his plan, which does not sit well. I do not like him, I do not like his approach, I do not like that he is condescending- toward me and also other radiation oncologists, and I have not forgotten (forgiven?) that he tried to talk me out of reconstruction because it makes his job harder...

 I also do not like that he does not view the reconstruction I’ve already had as a priority. I realize that preventing cancer is the number ONE priority (!!), but it is concerning that he doesn’t care about the fact that I also have to live with my body for the rest of my life and want to do as much as we reasonably can to preserve the good work that has been done. I have a friend who got a colleague in the same office and loved him, and I’m disappointed that I’m stuck with this guy. I hope that this improves over time, because it’s going to be a long 6 1/2 weeks…

I have decided to go forward with the full plan, because I want to make sure I’ve done everything possible to prevent recurrence of any kind. I saw my plastic surgeon yesterday, to finally tell him what the radiation plan is. His immediate response was, “Shit…”

😐

He wants to see me when I’ve finished radiation to assess the situation. The original plan was that I would switch from tissue expanders to implants one year after completing radiation (which we had hoped would only be in the armpit). However, the amount of radiation I’m having can make things more challenging for implants. In this case, we would have to do the reconstruction using my own tissue. This would be some type of “flap” procedure (there are different kinds and I don’t know which version it would be), which involves surgically removing a “flap” of fat/muscle/tissue from another area of my body and using that to form the “breast tissue” rather than simply placing an implant. I was originally told this was not an option for me, so I had not even considered it, but the type of chemo I had causes weight gain (and the hormone suppression likely will, too) so I should now have enough extra fat to do this, if needed. The outcomes can be very good, and are the most natural looking/feeling. That said, it’s a MUCH longer and more complex surgery, with multiple body parts involved, and a much longer healing time, so I am not sure that this is the route I would want to go.  But, if it’s the best option after radiation then I will consider it. 

I also asked him about fat grafting if I do have implants. I have a “shelf” at the top of my tissue expanders because the upper part of my chest is thin. They can liposuction small amounts of fat from elsewhere in the body and use that to soften the edges of the implants. I’ve seen pics from people in my online group, and the outcome from this looks great! So, I’m happy to report that it is an option if I do get to stick with the original plan! He said it will take a few times because usually about half of the fat dissolves, but it’s much less invasive than the flap procedures. I also asked if there is an increased risk of recurrence for hormone positive cancers (because fat contains estrogen), but he said it was not a concern for people who have had their breast glands removed.

I also had a bone density scan yesterday. This is because hormone suppression can cause osteoporosis, and if someone already has signs of this it can inform which hormone suppressing drug will be the best option. Nobody has actually called with the results, but I have seen the report online and it looks like my bone density is within the normal range.

After all of the appointments, we actually went to a clothing store and did some shopping, then had a delicious dinner with family who live in Greenwood and with our nephew, Ethan.

I wore real clothes and went to real places and saw real people!! I was exhausted after, but it was totally worth it!

Today, I did a cardio workout. Ok… I did half of a cardio workout. Ok, fine, I did less than half of a cardio workout and I had to stop and take breaks. BUT, the last time I tried a cardio workout I had a horrific coughing fit, I thought I was going to pass out, I felt awful, and it was very difficult to imagine ever being able to do it again. I’m not saying today’s attempt was a “success”, exactly, but it no longer feels impossible that I could eventually get back to a place where I CAN call it a success. Now, let’s hope that radiation and hormone therapy don’t screw it up…