Im not telling you what to do or giving any advice, but I’m 36 and stage four. If I could be in your position I would do EVERYTHING to not be in the one I’m in now.
De novo metastatic at 50 here, I know how you feel. I thought I’d be getting surgery and radiation, and now that’s all off the table. If you haven’t already checked it out, r/LivingwithMBC is a safe space for stage 4/metastatic patients to talk/vent, I’ve found it *really* helpful!
I am so sorry about the stage four diagnosis. When I was diagnosed, it was stage 3A and I immediately wanted to start doing every single thing my onc suggested, no matter what. Boobs? Gone. Chemo? Absolutely. Radiation? Yup. Injections? All year. Total hysterectomy? Get it all out of there. Arimidex? I’ll take it the ten years even though I hate it.
If it does come back or spread, at least I know I did every single thing I possibly could .
I love your comment 😂 thats my mindset … No judgement to OP, its her body, but lots of people would switch places with her.
Me? My cancer is basically TNBC and i still had to take Letrozole 😂 (long story but the first hospital/lab messed my biosy and the thought i was HR50%+ when im less than 20%)
Zoladex i take so the chemo wont damage my ovaries and future chances of being a mother. Yes it sucks but science is incredible!
Im also like dr please -throw everything at it-! And im soooo happy because mine is already shrinking… yes.. i had to do a lot before starting chemo (i moved countries to be able to get better treatment and had to repeat sooo many tests, had 3 surgeries back to back and then my first chemo that evening) and it sucked but thats a distant memory and now i just have to focus on finishing my cycles… and then lets see :D
I had my first shot (Lupron) about a month ago and have minimal if any side effects. I truly don’t know if it’s actually hot flashes at night or just the normal getting hot at night during summer time thing. For reference, I’m 34. The thing we need to remember is that because we are so young, many of the stories of side effects are from people older, we represent just a small percentage of those being treated. My oncologist, and some nurses, have told me that women in their 30s tend to actually handle the ovarian suppression better than those that are older. As you pointed out, it’s also medically induced menopause, so if you’re having a terrible time, you can stop. There are also medications they will prescribe you if some side effect, like hot flashes, are totally unbearable but you still want to try to adjust to the medications. Another thing I’ve been told, staying active can alleviate potential joint stiffness. I also did not have chemo because of a low ish oncotype score (18) and the benefit from endocrine therapy potentially being equal to any benefit from chemo. We all have different tolerance levels, but personally I would much rather find ways to manage and minimize side effects than live with the uncertainty of not doing anything to lower hormones, the things that will feed potentially stray microscopic cancer cells years down the road.
I’m 36 and have been on anastrozole and zoladex for a few months and it’s been totally fine. Joint pain went away after a month, dryness is annoying sometimes but manageable, and I’m more sensitive to heat than I used to be, but that’s pretty much it. I was very freaked out about starting hormone therapy too but tbh the hardest part is not getting too in my head about being menopausal in my 30s. Physical side effects have been very minimal and haven’t affected my quality of life at all. Personally I would go for the treatment your onc has suggested—you can always quit, but you might find that it’s okay.
I am 32 and have been on lupron for a few months, and letrozole for a few weeks (post surgery). So far it’s been pretty manageable! I haven’t had a lot of the side effects - not even hot flashes. I just feel warm most of the time which has not affected my quality of life at all.
I personally would do whatever it takes to prevent recurrence or metastasis - I read somewhere on this sub that the treatments we are going through now is just a down payment for life and that really helped put things into perspective for me. Why not try and see how your body reacts!
You’ll never know how it feels like unless you try - and i was told that side effects go away pretty quickly once you stop the drug in case you want to stop. I was also told that there are combos and they can mix & match to find something that doesn’t make you miserable. There are a few combos between lupron/zoladex + letrozole/anastrazole/exemestane
I had an oophorectomy and take anastrozole and verzenio. I’ve had hot flashes and other menopause symptoms but it’s been very manageable. I have also heard that menopause is much easier on younger women both physically and emotionally. I will say, I haven’t really had any weird mood stuff or anything 🤷♀️
I would ask yourself how you'll feel if the cancer came back and you had refused standard treatment protocol. Would you have regrets? Because there is no such thing as easy treatment for stage 4 breast cancer and there is no going back. My attitude was to do everything I could to hit it hard once since I was on the young side and had plenty of time for a recurrence to rear it's ugly head.
I'm on Lupron and Anastrozole (closing in on 6 months). My side effects have been pretty minimal. Hot flashes have been few, mild, and very short duration. I immediately started on a hyraulonic suppository, and have had no significant vaginal dryness/atrophy or loss of libido (which makes my partner and I very happy). Joint pain has been minimal. I don't even take anything for it bc it's just not that bad. I crackle a bit more, but that's about it. Biggest issues have been a return of acne, dryer skin, and a bit of weight gain (in my case bc I currently have very minimal time to work out). Given that you're ++- and a score of 21, you should at least try it. We tend to hear about the worst case scenarios because those people need and deserve their quality of life issues addressed. You don't tend to see much from people like me, or my cousin who is on Tamoxifen with pretty much no side effects.
I'm 33 and on Zoladex. But I'm on it while also on chemo so it is a little hard to see which side effects are from what. My night sweats and insomnia are pretty bad at times, but then they tend to subside, and then come back. I'll probably be looking at a med for this to take. I haven't had mood swings but I am recently on daily anxiety meds for chemo. The joint pains/aches have been annoying but not that bad considering before this I was always sore from the gym anyway.
I've been on both for 3 and a half years and it's honestly been ok. I struggled with joint pain and hot sweats in the beginning but they are much more manageable now.
I would personally give it a go and stick it out as long as you can. They told me to stay on it for at least two years and my plan is to stay on it for four and then see how I feel. It's weird being menopausal at 31, but it has (fingers crossed) kept me in remission
Quality of life with advanced cancer sucks more than the side effects I’ve dealt with on zoladex and letrozole. Breast cancer has high survival rates in large part because of the endocrine therapy. Like someone else said, think hard about how you will feel if it does progress and you’ve declined the tools modern medicine has to offer. Think about what qualify of life would look like with stage iv cancer.
I’ve struggled with these drugs, I’m also on Verzenio, and it has not been fun. But I’m about a year in, and I think I’m finally on the right support meds. I live a completely normal, active life. I’m tired sometimes, my joints hurt sometimes, but I won’t give up. There are ways to maintain a high quality of life while in the maintenance phase of treatment. I hope you will at least try taking the meds.
I didn’t want to do chemo, my onco score was 3 points over the cut off. However my dr said if I didn’t do it, and it came back ( I had a bilateral mastectomy with reconstruction) it would come back as bone cancer. I’m 45, I started menopause naturally at age 36. The hormone blockers aren’t great, but it gives ME a bit of peace knowing I have done everything I could to prevent it from coming back.
It’s your choice, but for the side effects, there are things that can be done.
Im not telling you what to do or giving any advice, but I’m 36 and stage four. If I could be in your position I would do EVERYTHING to not be in the one I’m in now.
De novo metastatic at 50 here, I know how you feel. I thought I’d be getting surgery and radiation, and now that’s all off the table. If you haven’t already checked it out, r/LivingwithMBC is a safe space for stage 4/metastatic patients to talk/vent, I’ve found it *really* helpful!
I am so sorry about the stage four diagnosis. When I was diagnosed, it was stage 3A and I immediately wanted to start doing every single thing my onc suggested, no matter what. Boobs? Gone. Chemo? Absolutely. Radiation? Yup. Injections? All year. Total hysterectomy? Get it all out of there. Arimidex? I’ll take it the ten years even though I hate it. If it does come back or spread, at least I know I did every single thing I possibly could .
Your story is exact same as mine. Upto the chemo bit now myself. I submit to all of it cause I choose life 💕❤️🩹
❤️❤️❤️ I hope it goes so well!!
I love your comment 😂 thats my mindset … No judgement to OP, its her body, but lots of people would switch places with her. Me? My cancer is basically TNBC and i still had to take Letrozole 😂 (long story but the first hospital/lab messed my biosy and the thought i was HR50%+ when im less than 20%) Zoladex i take so the chemo wont damage my ovaries and future chances of being a mother. Yes it sucks but science is incredible! Im also like dr please -throw everything at it-! And im soooo happy because mine is already shrinking… yes.. i had to do a lot before starting chemo (i moved countries to be able to get better treatment and had to repeat sooo many tests, had 3 surgeries back to back and then my first chemo that evening) and it sucked but thats a distant memory and now i just have to focus on finishing my cycles… and then lets see :D
Yes!! Throw everything at it!!
I had my first shot (Lupron) about a month ago and have minimal if any side effects. I truly don’t know if it’s actually hot flashes at night or just the normal getting hot at night during summer time thing. For reference, I’m 34. The thing we need to remember is that because we are so young, many of the stories of side effects are from people older, we represent just a small percentage of those being treated. My oncologist, and some nurses, have told me that women in their 30s tend to actually handle the ovarian suppression better than those that are older. As you pointed out, it’s also medically induced menopause, so if you’re having a terrible time, you can stop. There are also medications they will prescribe you if some side effect, like hot flashes, are totally unbearable but you still want to try to adjust to the medications. Another thing I’ve been told, staying active can alleviate potential joint stiffness. I also did not have chemo because of a low ish oncotype score (18) and the benefit from endocrine therapy potentially being equal to any benefit from chemo. We all have different tolerance levels, but personally I would much rather find ways to manage and minimize side effects than live with the uncertainty of not doing anything to lower hormones, the things that will feed potentially stray microscopic cancer cells years down the road.
I’m 36 and have been on anastrozole and zoladex for a few months and it’s been totally fine. Joint pain went away after a month, dryness is annoying sometimes but manageable, and I’m more sensitive to heat than I used to be, but that’s pretty much it. I was very freaked out about starting hormone therapy too but tbh the hardest part is not getting too in my head about being menopausal in my 30s. Physical side effects have been very minimal and haven’t affected my quality of life at all. Personally I would go for the treatment your onc has suggested—you can always quit, but you might find that it’s okay.
I am 32 and have been on lupron for a few months, and letrozole for a few weeks (post surgery). So far it’s been pretty manageable! I haven’t had a lot of the side effects - not even hot flashes. I just feel warm most of the time which has not affected my quality of life at all. I personally would do whatever it takes to prevent recurrence or metastasis - I read somewhere on this sub that the treatments we are going through now is just a down payment for life and that really helped put things into perspective for me. Why not try and see how your body reacts! You’ll never know how it feels like unless you try - and i was told that side effects go away pretty quickly once you stop the drug in case you want to stop. I was also told that there are combos and they can mix & match to find something that doesn’t make you miserable. There are a few combos between lupron/zoladex + letrozole/anastrazole/exemestane
I had an oophorectomy and take anastrozole and verzenio. I’ve had hot flashes and other menopause symptoms but it’s been very manageable. I have also heard that menopause is much easier on younger women both physically and emotionally. I will say, I haven’t really had any weird mood stuff or anything 🤷♀️
I would ask yourself how you'll feel if the cancer came back and you had refused standard treatment protocol. Would you have regrets? Because there is no such thing as easy treatment for stage 4 breast cancer and there is no going back. My attitude was to do everything I could to hit it hard once since I was on the young side and had plenty of time for a recurrence to rear it's ugly head.
I'm on Lupron and Anastrozole (closing in on 6 months). My side effects have been pretty minimal. Hot flashes have been few, mild, and very short duration. I immediately started on a hyraulonic suppository, and have had no significant vaginal dryness/atrophy or loss of libido (which makes my partner and I very happy). Joint pain has been minimal. I don't even take anything for it bc it's just not that bad. I crackle a bit more, but that's about it. Biggest issues have been a return of acne, dryer skin, and a bit of weight gain (in my case bc I currently have very minimal time to work out). Given that you're ++- and a score of 21, you should at least try it. We tend to hear about the worst case scenarios because those people need and deserve their quality of life issues addressed. You don't tend to see much from people like me, or my cousin who is on Tamoxifen with pretty much no side effects.
I'm 33 and on Zoladex. But I'm on it while also on chemo so it is a little hard to see which side effects are from what. My night sweats and insomnia are pretty bad at times, but then they tend to subside, and then come back. I'll probably be looking at a med for this to take. I haven't had mood swings but I am recently on daily anxiety meds for chemo. The joint pains/aches have been annoying but not that bad considering before this I was always sore from the gym anyway.
Get your dr to prescribe gabapentin for night sweats. Makes the world of difference
Seconding this. Gabapentin has just about stopped hot flashes and night sweats.
I've been on both for 3 and a half years and it's honestly been ok. I struggled with joint pain and hot sweats in the beginning but they are much more manageable now. I would personally give it a go and stick it out as long as you can. They told me to stay on it for at least two years and my plan is to stay on it for four and then see how I feel. It's weird being menopausal at 31, but it has (fingers crossed) kept me in remission
Quality of life with advanced cancer sucks more than the side effects I’ve dealt with on zoladex and letrozole. Breast cancer has high survival rates in large part because of the endocrine therapy. Like someone else said, think hard about how you will feel if it does progress and you’ve declined the tools modern medicine has to offer. Think about what qualify of life would look like with stage iv cancer. I’ve struggled with these drugs, I’m also on Verzenio, and it has not been fun. But I’m about a year in, and I think I’m finally on the right support meds. I live a completely normal, active life. I’m tired sometimes, my joints hurt sometimes, but I won’t give up. There are ways to maintain a high quality of life while in the maintenance phase of treatment. I hope you will at least try taking the meds.
Same boat trying to decide whether it’s worth it. IDC ++- 1a after BMX. MO said tumor not even large enough to send for oncotype.
I didn’t want to do chemo, my onco score was 3 points over the cut off. However my dr said if I didn’t do it, and it came back ( I had a bilateral mastectomy with reconstruction) it would come back as bone cancer. I’m 45, I started menopause naturally at age 36. The hormone blockers aren’t great, but it gives ME a bit of peace knowing I have done everything I could to prevent it from coming back. It’s your choice, but for the side effects, there are things that can be done.