Personally, I would do whatever the oncologist recommends as the standard of care. It’s called that because it has been tested via clinical trials and found to give greatest chance of survival. It really baffles me that anyone would choose anything else. Note: I’m a 12-year survivor of stage-3 breast cancer who has been NED for all that time.
NED = no evidence of disease
Yes, side effects are scary, but death is scarier. It's also important to remember that literally millions of people have taken these medications, and many tolerate them well.
As far as Tamoxifen goes, I've been on it for a year now & the side effects weren't that bad when I think back to compare how I reacted to chemo & radiation, (basically had every side effect possible, so not fun).
Tamoxifen has given me some hot flashes, but they have lessened to be almost negligible now & the occasional feelings of rage (I became ridiculously cranky & just kept to myself, but that at least didn't happen more than a few times). So I would go with what the oncologist is recommending because what they recommend will be the best chance possible based on the cancer she has. Honestly, being in menopause is nice now. I don't have the monthly idiocies of hormones & it's great to feel free from all of that.
I know it sounds scary but… it is usually the individuals with side effects who you hear from. There are a lot of patients without side effects or very mild… they don’t typically post about it. So- what you are reading about is not really a great representation of all people who take it. I was worried too and told myself I would at least try Tamoxifen.. see how it worked for me. There are a lot of options to changing your dosage, etc if you have side effect or can opt to stop. I have almost zero side effects- just sore joints sometimes which are not a big deal at all. I would encourage her to try one of the two.
I posted recently about this exact dilemma. My Onc recommended Lupron monthly and as I read the side effects, I was/am very nervous.
The advice that I received and decided to follow was to (a) take the Lupron injection (b) if there are side effects, be open, honest and clear with my Onc about what effects my “quality of life”, as there is a potential to reduce the dose or switch to a 3 month injection. (c) if I have exhausted those options and exploration of all other meds, I can opt for the surgery.
The truth is that everyone experiences this differently. Your niece may not have any side effects, may have 1 or 2 that are manageable or may have all of them… there is just no way to tell until she tries.
The ovary removal sounded great to me to begin with (although I was not thrilled about another surgery), but if you stop to think about it, many of the side effects of the drugs are also a risk with menopause. I know you said that you don’t know the receptors of her cancer, but it sounds like ER+. If she removes her ovaries out of the gate to virtually eliminate estrogen production (she will still have to take the daily med), she could experience all the same side effects with very few options to help alleviate them.
I say this, if it’s about side effects only. If her receptors put her at a higher risk for ovarian cancer, her decision may be to eliminate the risk all together and opt for surgery. The Onc would have already informed her of the receptors and talked about the % they use to gauge risk of reoccurrence and cancer spread with her individual case.
I’m sure, like all of us, she just wants this over with. Once someone broke it down for me this way, the decision became easy for me. How can I not try to exhaust all options before making the decision for another surgery, or taking my chances that it won’t come back?
I wish her the very best with whatever she chooses! You are a great Aunt for trying to help gather info for her!
Thanks.
Do you know what the pathology on your nieces cancer is, like I'm guessing it's ER positive, do you know what percentage, ie 85%, and what her PR and HER2 status is? Also how big any lesions are and have they checked the lymph nodes?
If she's had surgery does she have her Ki-67 number? The Ki-67 percentage score is defined as the percentage of positively stained tumor cells among the total number of malignant cells assessed.
I have no idea about all those.
All I know is, she has been advice to do the radiation to minimise the cancer from coming back.
Same goes for the oral chemotherapy & injection. The oncologist told her that it's needed to minimise the cancer from coming back.
The things I asked are what tells the drs how to treat and cure the cancer, and the chances of it coming back.
I'm not a doctor and by no means is the following accurate, pure speculation, but the fact they've offered this treatment means it's quite likely ER (oestrogen) and therefore PR (progesterone) positive because, if it's ER+ it's 65% likely to be, and because 10 years is the normal treatment for that. The HER2 I'm not so sure about as you haven't mentioned anything like herceptin and she would have been offered herceptin as treatment for that. Being HER2- is a good thing.
You've said she is stage 2, which means it's not stage 0 or 1, which are earlier, usually smaller and not in lymph nodes. Stage 2 is obviously a greater risk than 0 or 1 and not knowing why they said it's 2, means it could be a range of these.
In general with the treatments suggested by the doctors, there would still be a risk of the cancer not being completely eradicated and/or returning again, but by refusing the best practice treatments, she sadly increases this risk even more. Yes radiation will help, but not as much as their suggested treatments. Radiation alone and no endocrine treatment is usually only offered to post menopausal, mostly over 70 year old women and it's therefore difficult to find anything on younger pre menopausal women.
I'm all for us being the shero in our treatment and recovery but I'm wondering if anyone has spelled out the risk that she is taking. ER-positive breast cancer has a high chance of being successfully treated, especially when it’s discovered early. Refusing the best practice treatments is going to increase her risk of the cancer not being cured and/or coming back in 5, 10, 15, 20 years time. Her chance of getting ovarian cancer will also be increased and as I understand it, this is more difficult to detect as there's no way to screen for it. A diagnosis at a later stage will also have a less positive outlook than she has right now.
I completely understand where she's coming from, this is hard, really hard and we're making decisions with massive repercussions either way. I've been told I'm super healthy, heart, kidneys, liver, lungs all working really well and I can't see or even feel the cancer, but go ahead and let us poison you, perhaps reduce your health and even quality of life...but I'm all for it to be here for my kid. And I'm doing my utmost to lessen side effects and stay healthy, and so far so good.
I would hope your niece has been speaking to a psychologist or other therapist who might help her deal with her decisions and I wish her all the best.
I am 46 and just had my lumpectomy with Sentinel lymph node biopsy a week and a half ago. I know it is scary to hear the side effects of everything. I have been told Tamoxifen will be in my future. That does scare me, especially being a stroke survivor. I plan to do what the doctor recommends because my mother did when she had breast cancer at 48, and she is still alive. My paternal grandmother had breast cancer at 62 and lived until she was almost 90, she didn't die of cancer. They recommend it because it is proven to work. I wish your niece well in her journey.
Hormone therapy is often more important than chemotherapy for long term survival. It would be insane to go through surgery and chemo then not even try the hormone therapy because it might have side effects. The side effects of tamoxifen, etc. are nothing like chemo. She has to at least try it before deciding not to take it.
Obvs the standard disclaimer applies, all cases are different, yada yada yada. I’m at MD Anderson right now getting treatment for stage 4 BC and feeling kind of irritable, but I promise the side effects of tamoxifen are nothing like having stage 4 cancer.
I was faced with a similar decision (I'm 40) and I've been on Tamoxifen and Lupron for the last year. It's really been fine for me ! The side effects have been manageable. Most of what you read online is from people who don't do well on it, but that's not necessarily the majority experience.
Also, none of the side effects are permanent. If you go on the drugs and they are intolerable, you can adjust the dosing, try a different drug, or even stop if it's too bad. For instance, switching from morning to evening dosing almost completely eliminated my hot flashes.
It's such a huge benefit, and she's so young, that it would be a shame to miss out just because she didn't even give it a chance.
I would take the ovaries out and then follow what the oncologist recommends. Any side effects are worth the risk. If you can't tolerate the medicine they can try something else. I understand the fear of side effects because I felt the same way. However, you can really reduce your chance of developing stage four if you take the prescription estrogen blockers. Stage four has resulted in fluid in my lungs and other complications. I would rather have side effects from the chemo pills rather than the side effects of stage 4.
Personally, I would do whatever the oncologist recommends as the standard of care. It’s called that because it has been tested via clinical trials and found to give greatest chance of survival. It really baffles me that anyone would choose anything else. Note: I’m a 12-year survivor of stage-3 breast cancer who has been NED for all that time.
Congratulations, I am going for my second chemo this Friday love survivor stories like yours ❤️❤️
I guess it's scary for her, and even me, when you hear all about the side effects from them. Sorry, I am in Singapore and don't know what NED is.
NED = no evidence of disease Yes, side effects are scary, but death is scarier. It's also important to remember that literally millions of people have taken these medications, and many tolerate them well.
As far as Tamoxifen goes, I've been on it for a year now & the side effects weren't that bad when I think back to compare how I reacted to chemo & radiation, (basically had every side effect possible, so not fun). Tamoxifen has given me some hot flashes, but they have lessened to be almost negligible now & the occasional feelings of rage (I became ridiculously cranky & just kept to myself, but that at least didn't happen more than a few times). So I would go with what the oncologist is recommending because what they recommend will be the best chance possible based on the cancer she has. Honestly, being in menopause is nice now. I don't have the monthly idiocies of hormones & it's great to feel free from all of that.
I know it sounds scary but… it is usually the individuals with side effects who you hear from. There are a lot of patients without side effects or very mild… they don’t typically post about it. So- what you are reading about is not really a great representation of all people who take it. I was worried too and told myself I would at least try Tamoxifen.. see how it worked for me. There are a lot of options to changing your dosage, etc if you have side effect or can opt to stop. I have almost zero side effects- just sore joints sometimes which are not a big deal at all. I would encourage her to try one of the two.
I agree with this I've had very minimal side effects from chemo and after reading all the posts about it, I was horrified and scared...now I know why.
I posted recently about this exact dilemma. My Onc recommended Lupron monthly and as I read the side effects, I was/am very nervous. The advice that I received and decided to follow was to (a) take the Lupron injection (b) if there are side effects, be open, honest and clear with my Onc about what effects my “quality of life”, as there is a potential to reduce the dose or switch to a 3 month injection. (c) if I have exhausted those options and exploration of all other meds, I can opt for the surgery. The truth is that everyone experiences this differently. Your niece may not have any side effects, may have 1 or 2 that are manageable or may have all of them… there is just no way to tell until she tries. The ovary removal sounded great to me to begin with (although I was not thrilled about another surgery), but if you stop to think about it, many of the side effects of the drugs are also a risk with menopause. I know you said that you don’t know the receptors of her cancer, but it sounds like ER+. If she removes her ovaries out of the gate to virtually eliminate estrogen production (she will still have to take the daily med), she could experience all the same side effects with very few options to help alleviate them. I say this, if it’s about side effects only. If her receptors put her at a higher risk for ovarian cancer, her decision may be to eliminate the risk all together and opt for surgery. The Onc would have already informed her of the receptors and talked about the % they use to gauge risk of reoccurrence and cancer spread with her individual case. I’m sure, like all of us, she just wants this over with. Once someone broke it down for me this way, the decision became easy for me. How can I not try to exhaust all options before making the decision for another surgery, or taking my chances that it won’t come back? I wish her the very best with whatever she chooses! You are a great Aunt for trying to help gather info for her!
Thank you for taking the time to type all this. I am very grateful for it. I will tell her. Wishing you all the best.
I would have my ovaries taken if I had the choice. Sadly mine is triple negative so it's not an option.
Sorry to hear that
Thanks. Do you know what the pathology on your nieces cancer is, like I'm guessing it's ER positive, do you know what percentage, ie 85%, and what her PR and HER2 status is? Also how big any lesions are and have they checked the lymph nodes? If she's had surgery does she have her Ki-67 number? The Ki-67 percentage score is defined as the percentage of positively stained tumor cells among the total number of malignant cells assessed.
I have no idea about all those. All I know is, she has been advice to do the radiation to minimise the cancer from coming back. Same goes for the oral chemotherapy & injection. The oncologist told her that it's needed to minimise the cancer from coming back.
The things I asked are what tells the drs how to treat and cure the cancer, and the chances of it coming back. I'm not a doctor and by no means is the following accurate, pure speculation, but the fact they've offered this treatment means it's quite likely ER (oestrogen) and therefore PR (progesterone) positive because, if it's ER+ it's 65% likely to be, and because 10 years is the normal treatment for that. The HER2 I'm not so sure about as you haven't mentioned anything like herceptin and she would have been offered herceptin as treatment for that. Being HER2- is a good thing. You've said she is stage 2, which means it's not stage 0 or 1, which are earlier, usually smaller and not in lymph nodes. Stage 2 is obviously a greater risk than 0 or 1 and not knowing why they said it's 2, means it could be a range of these. In general with the treatments suggested by the doctors, there would still be a risk of the cancer not being completely eradicated and/or returning again, but by refusing the best practice treatments, she sadly increases this risk even more. Yes radiation will help, but not as much as their suggested treatments. Radiation alone and no endocrine treatment is usually only offered to post menopausal, mostly over 70 year old women and it's therefore difficult to find anything on younger pre menopausal women. I'm all for us being the shero in our treatment and recovery but I'm wondering if anyone has spelled out the risk that she is taking. ER-positive breast cancer has a high chance of being successfully treated, especially when it’s discovered early. Refusing the best practice treatments is going to increase her risk of the cancer not being cured and/or coming back in 5, 10, 15, 20 years time. Her chance of getting ovarian cancer will also be increased and as I understand it, this is more difficult to detect as there's no way to screen for it. A diagnosis at a later stage will also have a less positive outlook than she has right now. I completely understand where she's coming from, this is hard, really hard and we're making decisions with massive repercussions either way. I've been told I'm super healthy, heart, kidneys, liver, lungs all working really well and I can't see or even feel the cancer, but go ahead and let us poison you, perhaps reduce your health and even quality of life...but I'm all for it to be here for my kid. And I'm doing my utmost to lessen side effects and stay healthy, and so far so good. I would hope your niece has been speaking to a psychologist or other therapist who might help her deal with her decisions and I wish her all the best.
Thanks for taking the time to reply. I will share with her all these. Wishing you all the best.
I am 46 and just had my lumpectomy with Sentinel lymph node biopsy a week and a half ago. I know it is scary to hear the side effects of everything. I have been told Tamoxifen will be in my future. That does scare me, especially being a stroke survivor. I plan to do what the doctor recommends because my mother did when she had breast cancer at 48, and she is still alive. My paternal grandmother had breast cancer at 62 and lived until she was almost 90, she didn't die of cancer. They recommend it because it is proven to work. I wish your niece well in her journey.
Thanks for replying. I will share with her. Wishing you all the best
Hormone therapy is often more important than chemotherapy for long term survival. It would be insane to go through surgery and chemo then not even try the hormone therapy because it might have side effects. The side effects of tamoxifen, etc. are nothing like chemo. She has to at least try it before deciding not to take it. Obvs the standard disclaimer applies, all cases are different, yada yada yada. I’m at MD Anderson right now getting treatment for stage 4 BC and feeling kind of irritable, but I promise the side effects of tamoxifen are nothing like having stage 4 cancer.
Thanks for taking the time to reply me. I am grateful. Wishing you all the best
I was faced with a similar decision (I'm 40) and I've been on Tamoxifen and Lupron for the last year. It's really been fine for me ! The side effects have been manageable. Most of what you read online is from people who don't do well on it, but that's not necessarily the majority experience. Also, none of the side effects are permanent. If you go on the drugs and they are intolerable, you can adjust the dosing, try a different drug, or even stop if it's too bad. For instance, switching from morning to evening dosing almost completely eliminated my hot flashes. It's such a huge benefit, and she's so young, that it would be a shame to miss out just because she didn't even give it a chance.
This is great advice! Side effects can be managed with little tweaks.
Thanks for the advice. Really appreciate it. Wishing you all the best
I would take the ovaries out and then follow what the oncologist recommends. Any side effects are worth the risk. If you can't tolerate the medicine they can try something else. I understand the fear of side effects because I felt the same way. However, you can really reduce your chance of developing stage four if you take the prescription estrogen blockers. Stage four has resulted in fluid in my lungs and other complications. I would rather have side effects from the chemo pills rather than the side effects of stage 4.
Sorry to hear about your condition. I hear you & I will let her know.