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Sep 26, 2019 09:15PM
Sep 26, 2019 09:19PM
Thanks everyone for the tips and links. Surely do appreciate the info and the encouragement.
The past 5 months has been nothing short of an ongoing stressful nightmare. I'm eager to have my life calm back down. Only 2 more weeks until most of my specialist appts and scans are complete. Can't wait to breathe a sigh of relief after the last is finished.
As I posted on the Starting/Declining Hormone Therapy thread, I met with my new MO today. The main take away for me is that ee discussed the fact that I now have to contend with MS and that there is demonstrable proof and studies showing that lack of estrogen can/does trigger attacks in patients with that disease. Perhaps this explains why I did so terribly on 5 mg of Tamoxifen and could not tolerate ovarian suppression, besides being allergic to those in the first place I suppose. With that being said, she believes that it's best to focus on fighting the MS, to not exacerbate it as it's a lifelong incurable disease whereas my BC may or may not ever come back.
I guess I must choose to fight the battle that is at my door rather than one that may never arrive....
So the plan is now, no plan so as to not make things worse and to preserve my QOL.
It's scary but also at the same time a relief. Not sure if that makes sense, but it's how I feel, at least for now. Lol, ask me in 2 weeks since we all know how that can change from day to day. ;)
It should feel scary, being "set free" so to speak, without any Systemic Therapy on board and no surgery alternatives either, but again I'm a bit relieved to not have someone TELL me I need this or that, but to instead focus on the big picture I'm currently struggling/ living in. I was surprised to hear her voice her thoughts against these surgical options but it's logical in lieu of the MS and how poorly my system reacted to the tiniest decrease in estrogen. Surprised but relieved. For now MS is where I need to invest my time and spoons so I will take things one day at a time in the NO endocrine treatment category and see where the months and years take me.
Lastly, we talked about my 28-35% RR/METs and she brought up a few things that, besides the MS dx should also be my new focus ---> weight loss and exercising.
My MO said that without Endocrine therapy my best options to keeping my risks down are reducing the adipose tissue (aka FAT), which produces estrogen. Doing so will reduce risk of breast cancer. I knew this of course, but have not at all been trying to lose any weight. I've been in "just keep swimming" mode for the past year. Am determined to make this my new focus. She said even losing 5 pounds would drop my estrogen levels a decent amount. Ok self, we can do this, 5 pounds at a time.
"After a median follow-up of 11.4 years, women with a 5% or greater weight loss (n = 8,175) had a 12% lower breast cancer incidence, which was significant. This finding remained the same after adjusting for mammography frequency. Women who had a 5% or more weight gain did not have a higher overall incidence of breast cancer, but they did have a significantly higher incidence of triple-negative breast cancer (hazard ratio = 1.54, 95% confidence interval = 1.16–2.05)."
And then there's exercise, which I didn't know, can reduce RR. Learn something new every day. I mean, I knew in general it was good for us, obviously, but didn't know it impacts how our bodies use and communicate with hormones. A good article by Dr. Susan Love, might make you laugh when she talks about cute little mice on treadmills, but the short and long term studies they've done on how exercise changes hormone pathways is really encouraging. :)
Again thanks ladies for the suggestions about DIM and IC3. I'm familiar with these and had been taking them when I was still on Tamoxifen. After my allergic reaction to Zoladex I stopped them along with some other supplements to try and reset my system. Anyway, there was so much to go over at my first appt with this MO today that I didn't get to discuss these with her but I plan to when I see her again in 3 months.
Hopefully by then my body will have calmed down a bit, I'll know where I stand on the possibly cancer/nodule on my Thyroid, and much more. Anyway so for the long post but I did want to come back and post here as to what the plan turned out to be. Thanks again everyone for reading and for following along. Your help and support is so very appreciated.
Peace and healing to all....
PRO TIP RE: BREAST MRI -->
"Schedule your MRI for the beginning of your menstrual cycle. If you're premenopausal, the MRI facility may prefer to schedule your MRI at a certain time during your menstrual cycle, around day three to 14. The first day of your menstrual bleeding is day one of your cycle. Let the facility know where you are in your cycle so that optimal timing for the breast MRI can be scheduled."
Apparently if this is not timed correctly, the higher level of hormones circulating in the body can dramatically affect how the contrast is absorbed, how it's seen on imaging, and result in a less sensitive, less accurate MRI. I SOOO wish a doctor would've told me this, so just wanted to pass this on to anyone that comes looking.
"Spoonie" who entered BC World @ 41. DXd w/MS & Thyroid Cancer @42. Treatment: LX/SLNB/RADs. Plan A: 5mg Tamox = 0 QOL. Plan B: OS/AI = Rare allergy to OS meds. Plan C: Only option left, Diet & Exercise. PS: Not a dr, just a Googler.
7/20/2018, IDC, Left, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH)
8/30/2018, DCIS, Left, 1cm, Stage 0, Grade 2
8/30/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel
10/1/2018 Whole-breast: Breast, Lymph nodes, Chest wall
3/30/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
7/2/2019 Zoladex (goserelin)