Let's Talk About Hormone Therapy

I am ER+ PR-, 31 years old, my MO told me the plan was tamoxifen after radiation.

Does anyone have the link regarding AI+OS as a preference for us young kids? I’m stage 3 grade 3 with an 8 month old daughter, so I want to hit this bastard with a bazooka gun.

Did anyone get their estradiol levels checked prior to starting hormone therapy? Did it play a role in your treatment plan?

Do you still ovulate on hormone therapy?

Wonderwoman386- when I was doing OS I did get my estradiol level checked for a few months. Since it stayed low I switched from Tamoxifen to Letrozole (AI). After a year on OS I had my ovaries removed since I knew I could handle menopause and I was done having kids.

Good luck...stinks that we allhave to make these types of choices at such a young age.

MamaFelice - I had an oopherectomy for a few reasons: I have an unknown variant on a gene linked to ovarian & uterine cancers (but was too scared for a full hysterectomy), I was always worried that maybe the OS shots weren’t keeping my estrogen level low enough (me being paranoid), I wondered if my ovaries would ‘wake up’ after the 5 or 10 years of shots was over, and lastly the monthly shots hurt! I really couldn’t imagine getting them every month for 10 years.

Hi Valentina, not everyone gets side effects from tamoxifen, and often when people do the side effects build over time. It took a couple months for me to start noticing things.

Plus, with other meds no one uses the presence of side effects as a sign something is working. Like people who take cholesterol meds...that can give you muscle pain. But if you don't have muscle pain, there's no worry that the med isn't working. It's just great that the patient is symptom free. And we can tell the medicine still works. That's just an example--obviously tamoxifen is different, but I honestly wouldn't lose sleep over not having side effects. Rejoice that you don't!!

I think testing for tamoxifen metabolism (I think that's what you are referring to) is somehow controversial, but I can't remember why. I was never offered it at the beginning when I had no side effects, but eventually the hot flashes and period changes started. But it took awhile.

Hang in there!!

I was 38. I'm 39 now!

I am reading this thread with great interest! I am just about to start Tamoxifen and then after a few months my Med Onc wants me on Xolodex. He ultimately wants to remove my ovaries but I am very reluctant to let him do this. I’m 46 nearly 47 so surely I am closeish to natural menopause? I was ER+ and PR+ I don’t know it just feels like overkill a bit. I’ve finished having kids but we have a massive family history of osteoporosis and heart disease so I’m worried about those side effects. My bone density baseline scan was excellent with a 0.0% chance of a hip fracture and a less than 1% chance of other extremity fractures. My cholesterol baseline was great too so at least I’m starting from a good place. I am not a Med taker usually so this is a LOT for me. My survival rates only went up less than 1% over 5 years and less than 3% over 10 years taking them. It’s a a hard decision to do both Tamoxifen AND Zolodex. I see the Med Onc in March so I’m going to ask him about all this. Any thoughts

Hi Katiejane77,

I requested them to remove my ovaries and they said it is very extreme and unnecessary, plus really dangerous because I am only 33..i want to do everything to avoid having to go through this again. I also asked to get mastectomy but they said for 0.3 cm tumor, it was also unnecessary. I trust my doctors and I will follow all the instructions and keep positive!!

but since I am so young for this I will be tested for BRCA in march, if positive I will get the mastectomy as soon as they recommend. If positive they could also remove ovaries but I think they said only when I am 40...not sure about this. I will just follow all their recommendations

Hi Valentina,

I get wanting to do everything your Drs say too. I certainly do not want to go through this again. It’s terrifying! I’m just worried these both these Meds could give me a heart attack, blood clots or osteoporosis. My Med Onc wants to keep me from getting cancer but there are other real risks from these drugs. Sigh. It’s just so hard.

Katiejane77,

I really understand you...i think I also went through that, actually I am the first one in my family no cancer history at all..i started to evaluate all possible reasons and I think I was in a risk group: No children, 12 when I got my first period and...unfortunately used birth control pills 11 years without a break starting with 18...and only changed to Nuvaring 5 years ago. I never smoked, don't like alcohol and i can't eat gluten. I don't like coffee or sugar and I exercise 30 minutes every day... The last 3 years I haven't been feeling well..i went to doctos regularly with all symptoms of very high estrogen levels and the doctor that I used to have said everything was ok with my hormones because I was getting regularly my periods... When I got diagnosed first reaction was to blame birth control pills. And I was sad, thinking that I couldn't trust any doctor any more...i was wondering why did my doctor allow me to take those? And then I decided to get a second opinion about the recommended treatment: I did a lot of research: I visited another hospital, talked to 3 different doctors. Regarding radiation ( I was afraid of it) I contacted an old friend who studied nuclear physics and who I know works in a another country with oncologists and knows a lot of radiotherapy...he explained everything and helped me to be calm. And about Tamoxifen I even contacted the husband of a friend who is a chemical engineer working in a very important pharmaceutical company and he suggested to follow all doctors recommendations. I changed doctor and I have one now that I really trust..and I keep thinking positive!

Thanks Valentina,

I might get another Med Onc opinion. I have a friend with same Med Onc much younger than me and she is also on Tam/Zolodex. She has the gene and ended up getting a double mastectomy. I have two other friends my age who both just got offered Tamoxifen. One of those friends had a new recurrence in her other breast. I guess I just want to be sure it is the best course for me with our other family history.

Lula,

Forgot to say we are a heavily female family. Dad was an only child though. His Mum lived until she was 90+ but his Dad died of a heart attack in his 40’s. My dad has had a heart attack, bypass surgery and now has a pace maker. Heart health is important to me. Dad’s body produces too much cholesterol and is not diet induced so I’m worried the Meds will trigger that in me. I need to ask my Dr about it.

Lula,No, I think he had maybe one.