Today was the first meeting with Dr. Endicott. She is tall, soft spoken, and I can tell like me, a visual learner. I know this because she has classic signs of being a “visual” person, looks up and to the right a lot, especially when she is talking or trying to recall information. I felt right at home with her.
I met her nurse first, and she reviewed my new patient information with me, along with my med list. We discussed the timing of my chemo, surgeries, and the fact that I have a hole in my boob that continues to leak. She told us Dr. Endicott would come in and speak with us first, and then I would need to disrobe from the waist up and put on a gown so she could examine me. After that I would be able to dress again, and she would come back in and go over more information with us. She noted on my medical history form I had written down “Chemo Brain” so she brought us a flier for a 2 hour seminar under the Cancer Survivors workshops for dealing with Chemo Brain. This group is very observant!
Dr. Endicott came in and reviewed my medical files, and confirmed that my mom was just diagnosed with breast cancer. She asked what kind of cancer, was it the same as mine? No, hers has been caught earlier, smaller, and is hormone receptor positive. She’s looking at lumpectomy and radiation at this point. Good, good. She then got very excited that I’d had such a great response to chemo, in her words, this has taken me from being on the “very concerned and watch very closely list” to “the looking better list”. She asked about genetic testing, and yes I have tested negative for all BRCA genes at this point. I had a panel of 37 genes tested; we’re currently awaiting the results of Mom’s 80 gene panel they are running.
Dr. Endicott then stated that they prefer to do radiation when there is the least amount of cancer cells left in the breast. She also stated she prefers to start radiation between 6 to 8 weeks from surgery. She is willing to push this a little longer to allow my breast to heal a little more since I had such a great pathology report with all margins at least 1 CM away from the tumor marker. She is not too worried about cancer cells continuing to grow while we make sure my breast heals up, but she still would rather start this sooner rather than later.
She also stated that by doing radiation therapy I reduce my chances for recurrence by another 1/3. Pretty compelling reason to agree to radiation therapy. With a 35% recurrence rate for triple negative cancer vs. 4.7% recurrence rates for the other types of breast cancer, I’ll take the 1/3 reduction in my recurrence rate. Another little tidbit I found out today is approximately 15% of breast cancers are triple negative, and they are almost always found between mammograms as they are so aggressive. Didn’t know that… Now I don’t feel so stupid for not finding Blink sooner. I didn’t have a chance of finding this at such a smaller size or earlier stage like my mom’s cancer.
Not sure how I feel about these new pieces of information I have received today. My dragon is trying to unfurl, but I keep reminding him that there is nothing to worry about. The odds are still in my favor. We beat cancer, and it’s going to stay beat. Just because Dr. Endicott let it slip how scary this really was, how worried all my doctors were to get me into treatment so quickly, and all that I have endured to this point, was because my life was at stake. This is sinking in again. I had a complete pathological response to chemo, which reduces my recurrence risk. Radiation therapy is going to reduce my recurrence risk even more. I’m going to be just fine, so little dragon you can just curl back up into your designated corner. I’m going to be fine.
We talked about my Thyroidectomy, and subsequent ablation with the radioactive isotope. How I was really sick from the radioactive isotope, and my Radiation Oncologist at that time said I was highly susceptible to radiation sickness. I have been a bit worried about external radiation therapy making me sick as well. She doesn’t think I’ll have any problems with nausea, but I can curse her during treatment if it does make me sick. This was said with a slight chuckle in her voice, so she has a sense of humor! She emphasized it is very rare for anyone to feel nauseous from radiation therapy unless they are being treated for stomach cancer or the pituitary gland. Those two locations have a tendency to cause nausea. The rest, not so much. And since my primary radiation location is my right breast, they will be avoiding any possible direct beam to my stomach. If it had been my left breast, she could not guarantee any radiation to my stomach. I liked that she listened and answered as best she could but left the opening there that it was not completely out of the realm of possibility. And she could allow me to blame her if I did get sick. That was so nice to have a doctor take that attitude.
Dr. Endicott left us for a bit so I could undress and slip on the exam gown. When she returned, she examined my breasts. She said it looks so much better than she anticipated, and the left breasts incision sites look less healed than the right one. She was very pleased with how well my breasts are healing. She left the room again, so I could get dressed again.
When she returned to the room again, she advised us she debated whether she should, could let me have a reduced course of radiation therapy. She decided she just could not justify a shorter course of radiation therapy when she reviews my initial diagnosis. She wants to be sure I have the best chances of no recurrence. I will have 6 weeks of radiation therapy. The first 5 weeks will be broad beam across my entire breast surface. The last week will be localized or concentrated radiation to the lower half of my breast where my lump originated. I will notice a slight burn about 2 to 3 weeks into treatment. It may get gradually worse. I may also start to feel fatigue about that time. It is hit or miss as to who feels tired and to what extent. The radiation burn will fade 2 to 3 weeks after radiation therapy ends, and if I experience fatigue, that will also improve about 2 to 3 weeks after the end of therapy.
Then Dr. Endicott showed us some pictures of what radiation mapping is, how they position me, “tattoo” me with marks for radiation therapy. She explained how they do this to find the best angles to beam the radiation through my breast tissue with minimal exposure to other tissues. I may have a problem with a dry cough and/or shortness of breath 3 to 6 months after radiation. I am to call them if this happens, there are things they can do to help with this. I also have a 1/200,000 increased chance of a rib fracture as a couple of my ribs will receive minimal exposure to radiation. Radiation will also probably soften any scar tissue in my right breast. She did confirm that my right breast will probably shrink. We discussed the fact that I still don’t like my breasts, but I’ve been told by my cousin that I cannot decide whether I like them or not for 5 more months. Dr. Endicott said that was wise advice. And that the girls look really good. Still doesn’t make me like them right now….
She then had one of the radiation therapists schedule me for radiation mapping in two weeks and my first therapy treatment the week after. Radiation mapping will take about an hour and a half. There will be scans involved to make sure they are getting the best angles so they miss as much of my lungs and ribs as possible. I will get my new blue tattoos, and Dr. Endicott will show us my scans and the radiation angles that will be used. As long as Dr. Goldberg does not have any major objections we will proceed with treatment the following week. The first radiation treatment will take 30 to 40 minutes as they want to be sure everything is lined up correctly and they have my exposure set correctly. After that daily treatments will take no more than 15 minutes, most likely less.
I have my next follow up with Dr. Goldberg next week. I’ll let her know of Dr. Endicott’s treatment plan and she can then decide if it is a nay or yea as to moving forward.
Life is reducing my recurrence risk
Sounds like you have a great radiologist there. So does she think your hole will be healed in another three weeks or is she going ahead with treatment regardless? My radiologist said that there would likely by a little bit of radiation scarring to the top of my lung but that everything else would be free from anything hitting it. I guess there are side effects to EVERYTHING. I’m so glad you are on the last leg of this journey. It’s like being on the downhill side of the mountain you just climbed, right? Tell that dragon to stay put! You’re almost done with the fight and you are winning. LYTTMAB!
We discussed the fact that I still don’t like my breasts, but I’ve been told by my cousin that I cannot decide whether I like them or not for 5 more months. Dr. Endicott said that was wise advice.
See – told ya!