Connect with those under 40 who have been diagnosed.
Posted on: Feb 27, 2017 11:46AM
I'm interested in your input, as younger women with BC. I'm in radiation now, and when that's over I'll start hormone therapy. I've been given the option of tamoxifen, or ovarian suppression shots combined with an AI drug.
It would be a bonus not to get my period, but I'm also a little worried about being instantly flung into chemical menopause at the ripe old age of 32 with the AIs.
On any hormone therapy, my MO recommended 5-10 years.
Any personal experiences with these? What were your side effects like? Trying to compare one vs the other. Thanks so much!!
Posts 31 - 52 (52 total)
Dec 28, 2017 12:42PM Wonderwoman386 wrote:
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?
Dec 28, 2017 06:36PM gb2115 wrote:
I am 10 months into tamoxifen and definitely still ovulate, just not as often. I'm on a sort of 6-7 week apart menstrual cycle. But I can feel when I ovulate.
Dec 28, 2017 08:40PM Rambros wrote:
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.
Jan 8, 2018 10:20PM MamaFelice wrote:
Rambros-- may I ask why you had the oopherectomy? I am debating the procedure as part of my anti-estrogen treatment plan. My estradiol levels were already "post menopausal " even though I was still having irregular periods. MO says I can start with AI rather than Tamoxifen. Just asking around regarding choice to remove ovaries & would love any other thoughts you can share. Thanks
Jan 9, 2018 08:28PM Rambros wrote:
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.
Feb 9, 2018 01:07AM Valentina7 wrote:
I started tamoxifen 1 month ago and so far no side effects.. I was so worried about the side effects..and now I worried thinking that tamoxifen is not working . I just don't get my periods any more and it is strange but before the diagnosis I was feeling horrible: I had all symptoms of very high estrogen levels. So I was diagnosed and I had to stop using Nuvaring and i started to feel well again, and with tamoxifen so far so good...i only hope it will really work. I am thinking about getting the test even my doctor says she doesn't recommend it to me because even if it is not good for me..they can't give me anything rlse
Feb 9, 2018 07:43AM gb2115 wrote:
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!!
Feb 9, 2018 10:52AM Valentina7 wrote:
thanks gb2115, you motivated me a lot.
how old were you when diagnosed?
Feb 9, 2018 10:35PM Valentina7 wrote:
i was diagnosed in November, I am 33...
Feb 9, 2018 11:06PM Katiejane777 wrote:
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
Feb 10, 2018 01:39AM Lula73 wrote:
katiejane-did you have genetic testing done? Any mutations?
Feb 10, 2018 05:52AM - edited Feb 10, 2018 05:56AM by Valentina7K
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
Feb 10, 2018 09:45AM Katiejane777 wrote:
I had no genetic testing as both my Med Onc and Rad Onc didn’t think it would be useful. The only family history we have of cancer (all types of cancer) is my Aunty on Mums side who had breast cancer. She was nearly 80 when she got it and had NEVER had a mammogram in her whole life. They said that didn’t even count as family history. I have only one family member who died before the age of 60 everyone else lived to 80’s, 90’s and over 100. I am just freaking unlucky apparently.
Feb 10, 2018 09:53AM Katiejane777 wrote:
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.
Feb 10, 2018 10:08AM - edited Feb 10, 2018 10:26AM by Lula73
Katiejane- From the other side of your question - if menopause is likely within about 5 years anyway, why not go ahead and move it up a little earlier with oophorectomy? zoladex will shut them down anyway for however long you're on it so it's not like they will be benefitting you from bone/cardio standpoint. But you will be having to take those zoladex shots. This is likely the reasoning your doc is taking. With oophorectomy you also have more options on anti-hormonal medications. Pre-menopause your option is tamoxifen. Post-menopause you have tamoxifen as well as 4 other medications called aromatase inhibitors. Using zoladex you have all these options as well but only if you stay on the zoladex and take it faithfully on schedule. I did have it done - I'm 44 and done having kids. My rationale was I'd be on 5 years of estrogen blockers/suppressors anyway so why not just take care of it now and take that issue out of the game altogether. With everything else we're dealing with it is nice to not have deal with periods anymore.
Obviously we don't have your family tree information, but if you come from a male dominated family (fewer females than males) a genetic mutation could be present but not have shown up due to lack of females. Additionally, keep in mind that it only takes 1 parent (Mom or Dad even for the BRCA mutations) to carry the mutation and each child from that union has a 50/50 chance of inheriting it. So it's possible that only 1 child of a multi-child family inherits it. And a mutation does not mean the person will definitely gevelop that cancer, rather it significantly increases their odds of developing it vs. someone without it. This happening over and over again in a family could explain how you got “unlucky." I think I would want the testing just for peace of mind before making the oophorectomy decision if you’re leaning toward keeping them.
Feb 10, 2018 11:22AM Valentina7 wrote:
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!
Feb 12, 2018 01:31PM Katiejane777 wrote:
How did your body cope with no ovaries? I’m scared I’ll have awful side effects and not be able to do much about them.
Feb 12, 2018 01:42PM Katiejane777 wrote:
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.
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.
Feb 12, 2018 01:51PM Lula73 wrote:
katiejane-so far so good without ovaries. Hot flashes and pain in my left thumb, pointer finger and left ankle and foot are my side effects so far. I think the AI is likely contributing to those SEs as well. With that being said, these SEs are minor and quite bearable on a daily basis compared to the ones I had on tamoxifen. The pain goes away once I start using my hand/foot so not a big deal. I’m trying curcumin for the hot flashes (starting today). So Dad was an only child... did he have lots of aunts?
Feb 16, 2018 06:37AM Katiejane777 wrote:
Lula,No, I think he had maybe one.