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Yes, I have many options, hypothetically at least, because I am on traditional Medicare. I feel like my questions were answered but after a while it felt like I was arguing as though I wanted chemo and it was clear that she was not in favor of doing it, or that I wanted a PET scan (or something of that sort) and that I wasn't going to get that. Since my only known tumor has been removed, I'm not sure what a second opinion would do, other than to re-evaluate the potential risk-benefit question.
As a little background, I had not been feeling well in a number of areas prior to the diagnosis of the TNBC. Some of these are in the process of being worked up, others are just mysteries, some treated. I won't bore you with the details but when a number of things in my body haven't seemed normal to me, I can't help but wonder if some of them could be related.
Also, I was initially told at diagnosis (by a breast cancer nurse) that I would be starting with chemo. However, when I saw the oncologist and the surgeon in separate appointments, they both said to start with surgery. So I went along. At that point, I hadn't read very much. Now I am understanding that it is a common practice to do chemo first to get a sense of its effectiveness with the patient's particular variety of TNBC and that sometimes, not always, it offers some protection against recurrence and gives additional information about prognosis. I wasn't told this or given this option and so I'm feeling like I wasn't given the chance to get this possible protection. My tumor is gone now (thank God) so that gives them reason to say there is no reason to do a systemic treatment that might result in serious side effects. So I understand their reasoning. But I'm also feeling vulnerable without either the possible protection and/or a look at whether there could be metastasis in other parts of my body (unless other doctors decide to scan me piece by piece). I realize it is unlikely with a small tumor found early but it still doesn't feel right.
I also see that part of my reaction is purely psychological - i.e. to spend two months getting used to the idea of having cancer (and an aggressive one, at that) and then having to switch my thinking to, no, I don't have cancer anymore and I don't need to do anything but be watched. Thank you to anyone who has read all of this. I need to spill it out to people who will understand.
Replies to "Yes, I have many options, hypothetically at least, because I am on traditional Medicare. I feel..."
Have you asked your medical team what the surveillance process will be going forward - will you have bi-annual (every 6 months) scans, if so what type? I believe depending on the size of your mass it was small enough they figured they would get clear margins just by surgery alone. In my case (I'm TNBC & BRCA2+) chemo was done first to reduce the size before surgery (I also had lymph node involvement). I understand your anxiety about having an "aggressive" cancer and wanting to do everything you can to minimize it's recurrence. I think I've done and am doing everything I can to minimize recurrence. I opted for bilateral mastectomy, I'm also 70 and didn't need breasts any more and welcomed the knowledge that I would a bra when and only when I wanted the additional body shape.
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I know how you feel. I also was diagnosed with TNBC (that was invasive lobular) in one breast and then Er+ Pr+ invasive Ductal in the other breast. Both were stage
1a and grade 2. I went to Mayo Rochester for treatment. I am 70 and had my surgery in March. At first before my bilateral mastectomy the Oncologist said maybe chemo. Then after my pathology came back the Oncologist said probably no chemo because my Ki 67 was low, 5% in the TNBC tumor and 13% in the Er+ tumor and both tumors were stage 1a. He took it to the tumor board and they said no chemo. I was relieved in one way and scared in another way that maybe chemo might help with guarding against recurrence, but since I was at one of the best places I felt confident that it is the right decision. I am on Tamoxifen for the ER+ tumor even though I am post menopausal because I have osteoporosis. I am also getting Zometa infusions now for osteoporosis because the Oncologist told me that there is a benefit with that drug for preventing recurrence.
One other thing I am doing, (besides lots of prayer) that is helping me a lot with the anxiety of it all since my surgery, is doing what I call "Optimistic Self Talk" every single day for 15 minutes. I read 2 books about the mind body connection when this all started and that confirmed the fact that it was very important both physically and mentally to stay optimistic and believe that we will be bc survivors. So here is what I do every single day.
First I set my phone timer for 15 minutes, then I lie on my back with my eyes closed, palms up. Then I say over and over for those 15 minutes: "Love, light, optimism, wellness and healing. I am staying in remission. I am staying free from cancer and free from rogue cancer cells. I am a survivor and I will stay a survivor. I am well and healthy. I am just fine. All is well in my body. "
Let me just say it has helped me immensely! I never miss a day of doing that 15 minutes of optimistic self talk. It has truly helped my anxiety and has kept me in an optimistic mood! I may have shared this already on this site, not sure, but it has meant so much to me that I'm sharing it again in the hopes that it could help one of you reading this. Healing wishes to all of you. ❤️