I was wondering if there was anybody out there in the pre-menopausal/young age bracket who has stopped tamoxifen early due to side effects? I have take it for 2.5 years together with monthly zoladex injections. This is not a whim decision for me it's been 6 months in the making. My side effects are many - bone density, gynecological issues (just had to have a D&C and if tamoxifen continues these will be yearly) vertigo, severe hot flushes and sweating all day long, moody, on anti depressants, no energy, can't walk properly when I wake up, teeth grinding, can't exercise due to the vertigo, no libido, dryness, marriage tension, 10kg weight gain. I have not felt energetic and myself since 2010. I crave a sense of normality, youthful energy and joy my quality of life is non existent and I would love to hear from others who have a similar experience rather than menopausal women who do not share my experience. Thank you :)

Hi BC101 I can't comment fully yet, as I've not yet started on Tamoxifen. I'm actually seeing a Breast Care nurse tomorrow to discuss my particular situation (IDC 4mm, no lymph nodes, ER/PR+, had lumpectomy and Radiation therapy). I don't know if there is a significant percentage benefit for me to go onto Tamoxifen (I'm pre-menopausal) or not. And given the potential side effects, I feel I need to really need to weigh this up. There is, of course, the 'peace of mind' aspect. However, I'm struggling with doing all the natural/health things (good diet, remove phyto-estrogens/dairy/gluten, exercise, positive thoughts, mediation/tai chi, etc etc), with then taking a carcinogen every day for the next 5 years! In some ways it feels like the initial diagnosis, surgery and radiation were the easy bit! Now to wade through all the pros and cons for drugs or not. And the ramifications for a decision either way. We all want to do what will give us the longest and most positive outcome, but at what cost our quality of life? I'm finding this is very difficult to determine, and also finding it hard to understand which of my medical team I should speak to about this (hence going to a Breast Care Nurse) - Surgeon does surgery, Radiation Oncologist does radiation, GP doesn't get that deeply involved. I didn't see a Medical Oncologist as didn't have Chemo. And it is ultimately my decision. But I need to bounce this off someone.... So unfortunately I can't say what my Tamoxifen experience is (yet). I know that I will be asking for somone to use the Adjuvantonline.com calculator (Drs only) to work out my survival percentage and then incorporate Tamoxifen into the equation. If it's not a substantial increase in survival percentage, I may opt to not take it. Cancer is definately an ongoing journey and not a destination! Good luck with your decision. x

Hi there; yes i didnt have chemo and have had two appts so far with my oncologist but they have been two useful appts---so i would definitly discuss medication issues with oncologist and find one that suits your style too and practice married with results and specific clinical picture and research I only had one p/c with breast care nurse early on 'this journey' but seem to get a idea--could be wrong --that they are great for support if having mascetomy/chemo 'the works' done

Hi Tine66, My situation is the same as yours, lumpectomy and radiation. However, I have had an Oncologist as part of my team, it was with her that she didn't recommend chemo - no beneift/not required. My Onco decided that I should have radiation, was then sent to Radiologist,Onco gave me the options available to which I chose hormone treatment, which included taking Tamoxifen, I had no major problems with this drug, then I had ovaries removed and now on Arimidex. I hate this Arimidex and what it is doing to my body, but I will stick with it or go back to Tamoxifen. My Onco's words were that we are turning off the garden hose that feeds the cancer. I am still seeing her every 3 months. Are you being cared for through the public or private system? Through the public system you would have had a Discplinary team, which should have included an Oncologist. I have also mentioned previously that each specialist only looks after the problem that they specialise in. My GP is great, however I was her first bc patient, she has had 2 other since. Viv

Hello lovely lady! Many of the side effects you mention apply to me after being on Tamoxifen for 15 months now. Hearing someone else who experiences not being able to walk properly on rising in the morning actually gives me cause to realise I am not the only one. Hot flushes! You betya! Also the teeth grinding which is so bad for me that I have had to visit my dentist 3 or 4 times to have work done repairing damage caused by doing it in my sleep. And weight gain ... don't get me started on that! My Oncologist has said that should I have satisfactory blood test results mid-year they will take me of the Tamoxifen and prescribe something else, hopefully less likely to cause side effects. Who knows? Hang in! Vicki oXo

Well I've progressed a bit on my journey into whether or not to go onto Tamoxifen. I've seen the Breast Care Nurse, who was wonderful. She obviously can't tell me what to do, but looked through my pathology report from the surgery and said that I was borderline as to whether to use Tamoxifen or not. Really, as always, its up to me. She did give me a great suggestion, which I should have thought of myself. I'm going to send my pathology report to John Boyages (author of Breast Cancer: Taking Control), and see what he says. I've also contacted my Surgeon asking for a referral to a Public Medical Oncologist. Apparently my Radiation Oncologist could have provided this referral as well. Bit of a hole in the process when you don't have Chemo and aren't therefore referred to a Medical Oncologist! So the Medical Oncologist will be able to use adjuvantonline.com to work out my particular statistics, which will be good to know. I guess at the moment I'm leaning towards giving Tamoxifen and try and see what level of side effects I will get. More later as I get results. Thanks for all your comments and good luck to you all on your respective journeys. xx

Stopping tamoxifen early | BCNA Online Network

13 Replies

VivW
Member
12 years ago
Hi Tine66,

My situation is the same as yours, lumpectomy and radiation. However, I have had an Oncologist as part of my team, it was with her that she didn't recommend chemo - no beneift/not required. My Onco decided that I should have radiation, was then sent to Radiologist,Onco gave me the options available to which I chose hormone treatment, which included taking Tamoxifen, I had no major problems with this drug, then I had ovaries removed and now on Arimidex. I hate this Arimidex and what it is doing to my body, but I will stick with it or go back to Tamoxifen. My Onco's words were that we are turning off the garden hose that feeds the cancer. I am still seeing her every 3 months.

Are you being cared for through the public or private system? Through the public system you would have had a Discplinary team, which should have included an Oncologist.

I have also mentioned previously that each specialist only looks after the problem that they specialise in. My GP is great, however I was her first bc patient, she has had 2 other since.

Viv
mona63
Member
12 years ago
Hi there; yes i didnt have chemo and have had two appts so far with my oncologist but they have been two useful appts---so i would definitly discuss medication issues with oncologist and find one that suits your style too and practice married with results and specific clinical picture and research

I only had one p/c with breast care nurse early on 'this journey' but seem to get a idea--could be wrong --that they are great for support if having mascetomy/chemo 'the works' done
Tine66
Member
12 years ago
Hi BC101

I can't comment fully yet, as I've not yet started on Tamoxifen. I'm actually seeing a Breast Care nurse tomorrow to discuss my particular situation (IDC 4mm, no lymph nodes, ER/PR+, had lumpectomy and Radiation therapy). I don't know if there is a significant percentage benefit for me to go onto Tamoxifen (I'm pre-menopausal) or not. And given the potential side effects, I feel I need to really need to weigh this up.

There is, of course, the 'peace of mind' aspect. However, I'm struggling with doing all the natural/health things (good diet, remove phyto-estrogens/dairy/gluten, exercise, positive thoughts, mediation/tai chi, etc etc), with then taking a carcinogen every day for the next 5 years!

In some ways it feels like the initial diagnosis, surgery and radiation were the easy bit! Now to wade through all the pros and cons for drugs or not. And the ramifications for a decision either way.

We all want to do what will give us the longest and most positive outcome, but at what cost our quality of life? I'm finding this is very difficult to determine, and also finding it hard to understand which of my medical team I should speak to about this (hence going to a Breast Care Nurse) - Surgeon does surgery, Radiation Oncologist does radiation, GP doesn't get that deeply involved. I didn't see a Medical Oncologist as didn't have Chemo. And it is ultimately my decision. But I need to bounce this off someone....

So unfortunately I can't say what my Tamoxifen experience is (yet). I know that I will be asking for somone to use the Adjuvantonline.com calculator (Drs only) to work out my survival percentage and then incorporate Tamoxifen into the equation. If it's not a substantial increase in survival percentage, I may opt to not take it.

Cancer is definately an ongoing journey and not a destination!

Good luck with your decision.

x

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Stopping tamoxifen early

13 Replies

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