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Topic: Need help weighing options due to stroke history

Forum: Hormonal Therapy - Before, During, and After —

This is a safe place to share your experiences of others considering or on hormonal treatment.

Posted on: Oct 5, 2021 09:47AM

Jen2957 wrote:

Hi, all! I met with a Surgical Oncologist Friday and will meet with a Medical Oncologist today regarding my treatment. They are different facilities, as I am in the process of deciding where to be treated. Both facilities are excellent, so it will come down to where I feel most comfortable.

I am 50 years old, premenopausal, and have multicentric, Clinical Stage I (node status, of course, verified at surgery, but no evidence on exam or ultrasound thus far) with a 7 mm IDC and a 9 mm IDC. DCIS in the mix as well. Both masses are >90% ER+/PR+ and are HER2-. Surgical Oncologist’s plan is unilateral skin and nipple sparing mastectomy with tissue expander to allow healing without pressure on healing skin and tissues. Advised Ovarian Suppression and AIs OR Tamoxifen as hormone therapy.

I was hoping that some of you may be willing to share your experiences and/or decision-making processes as you and your docs discussed your course of treatment. It’s very overwhelming, of course, and I am just trying to determine the benefit to risk ratio of the available options.

As I navigate this process, I am trying to prepare myself to have informed discussions regarding my treatment plan if it does end up involving hormonal therapy. I want to trust my care team to recommend the appropriate plan, but if given options (as I felt I was being given at my first appointment), I want to feel confident that I have the knowledge base I need in order to choose.

For the whole picture, these are the things that are making this decision difficult for me:

-Trying to determine safest path for reducing any future stroke risk. I had two small ischemic strokes when I was almost 37 years old that they found no cause for aside from the increased risk I had from high blood pressure after having severe preeclampsia 11 years prior to the stroke (there was some speculation that there is increased risk within 15 years post preeclampsia, but I don’t know if that has been confirmed with appropriate studies. I was one of a very small percentage of women who did not recover after giving birth- my BP has remained elevated and at the time, I had liver failure, etc.). I do take what I call my “stroke-repellent” which is Aggrenox -keeps platelets from sticking together and includes a low dose aspirin.

-I have been on Wellbutrin (Bupropion) for years and have done very well on it. Other mood stabilizers have not worked for me. I have also had genetic testing for medication efficacy done and this appears to be the best fit, according to my PCP. It doesn’t play well with Tamoxifen.

-My genetic testing for medication revealed that I am a CYP2D6 intermediate metabolized and that Tamoxifen “may have” reduced efficacy.

-I have only one ovary left, as I had one removed after a hemorrhagic cyst caused ovarian torsion. My paternal grandmother died from ovarian cancer. I have had blood drawn to do the BRCAplus and CancerNext genetic testing. Results will be in next week and certainly could affect treatment course if I have positive results.

“Enjoy the little things in life because one day you`ll look back and realize they were the big things.” ― Kurt Vonnegut Surgery 10/21/2021 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 10/28/2021, DCIS/IDC, Right, 5cm, Stage IB, Grade 1, 1/3 nodes, ER+/PR+, HER2- (IHC) Surgery Radiation Therapy Hormonal Therapy Aromasin (exemestane)
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Oct 5, 2021 09:59AM ThreeTree wrote:

Jen2957. Wow, you have lot going on; some very out of the ordinary things to consider for sure. Unfortunately, I don't have anything really to offer you re the stroke situation, but I do want to thank you for mentioning genetic testing for drug efficacy. I had never heard of anything like that. It's interesting to know that that's out there, as so many have troubles with so many drugs. It's nice to know there may be a way to get a little bit more of handle on that situation by getting tested. You learn something every day!

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Oct 5, 2021 05:51PM - edited Oct 5, 2021 05:52PM by Salamandra

Hi Jen,

Since your cancer is ER+, you can pretty much bet on hormonal therapy being part of your treatment. But your docs should work with you to fully understand all your risk factors and make appropriate recommendations.

However, the details of this will fall to your medical oncologist. The surgeon is often the first point of contact, but they are not the expert nor the final word on post surgical treatment. You can and should expect your medical oncologist to go over your hormonal options and recommendations with you, and s/he may well make a strong recommendation one way or the other. (The MO is also the one that would consult with your other doctors if there is other medical history or factors to consider).

The usual default for premenopausal women who can't take tamoxifen is ovarian suppression plus aromatase inhibitor. That is what my doc suggested I switch to after I couldn't tolerate tamoxifen's side effects.

One thing that I think isn't sufficiently known is that toremifene is a good SERM alternative to tamoxifen that does not rely on the same enzyme and isn't contraindicated by wellbutrin. I don't know its risks with regard to stroke, but it's something that an MO should be able to know/find out. It has a lot less research than tamoxifen but not that much less research than OS/AI for premenopausal women, albeit it's not FDA approved for us here yet. It's more commonly used in Asia, where the genetic variation that impacts CYP2D6 is more common. It's what I ended up, because I wanted to avoid OS if I could, and being able to go back on wellbutrin was hugely helpful for me.

Sending good vibes!

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy 12/19/2019 Fareston (toremifene)

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