I have recently had a lumpectomy followed by 6 weeks radiation therapy. I have been using tamoxifen for a month and have chosen to stop due to the side effects. My onco dx test showed I have less than 10 percent chance of it coming back. My question is: would a bilateral mastectomy further reduce risk of the cancer returning to my breast?

You would have to think it would reduce your chances of a recurrence in breast tissue but your doctor would be the best person to ask.I guess there is that worry of possible stray cancer cells elsewhere and that's why Tamoxifen helps.Sometimes the side effects improve after taking this drug for a few months.Also there are other drugs to counteract Tamoxifen side effects. I take a low dose of Endep and it really helps.A bilateral mastectomy is big surgery to go through and would you think of reconstruction or not?It's a big decision so keep researching and asking questions-there is no rush.You've already been through alot recently.Hope you have recovered ok. Tonya xx

I was intending to post this on the general discussion page but could only find this blog! Would you tell me how to find the discussion page with other people's comments/queries? X Lisa

Hi Sara, I have just had my lumpectomy a fortnight ago, and due to have my CT Scan on Thursday. I'm like you with a very slim chance of it returning and I have been told that the risks associated with Chemo outweigh any benefit that I will get from it. Therefore after 6.5 weeks of Radiotherapy I will be starting Tamoxifen with the possibility of going on to Goserelin injections after a couple of months as well. I'm just wondering what the side effects were that made you decide to come off the Tamoxifen. Narelle

It looks like you've managed to create your own post on Tamoxifen and other ladies,like myself,will hop on this thread and have a discussion.You could type in "Tamoxifen"into the search bar on the top right and that might bring up previous posts on this drug.You can just read or add your comments but if they are old posts then you might not get answers.If you scroll down this page to under the pink line,you'll see"resources"on the right hand side and under that "fact sheets and booklets".If you click on that you'll find info on Hormone therapy and Tamoxifen. You can keep replying on this post you have started and no doubt,other ladies will join in. Tamoxifen is always a popular topic.I probably should mention that I had a lumpectomy and radiation back in 2003.I took Tamoxifen for awhile but gave up because of the bad side effects I was experiencing.Then 7 years later I got a recurrence in the same breast,same spot,same pathology.I was told I only had an 8%chance of this happening -lucky me! So I had to have a mastectomy,chemo and then Tamoxifen for 5 years.I've been on it for over 3 years now.Even with a mastectomy there is still a 1%chance cancer could come back on the scarline -that's what my surgeon told me.It maybe different for others. Anyway,I'm not taking any chances and I'm taking Tamoxifen but don't know if I'll do it for 5 years.This drug has been around a long time and seems quite effective with fewer side effects than the other anti hormone drugs.Good luck with your discussions. Tonya xx

Tamoxifen | BCNA Online Network

Robyn_W
Member
11 years ago
Just one other thing ...my oncologist also explained to me that even though there may be a VERY SLIGHT chance that Aromatase inhibitors are more effective in menopausal women,the difference is incredibly small.Cheers Robyn
Sara_B
Member
11 years ago
Hi Robyn Thank you for the info on bone density - I am just menopausal. My onco wants to switch me to Femara this year - that can cause bone density problems. I may insist I stay on tamoxifen xxxxxx X Lisa
Sara_B
Member
11 years ago
Hi Robyn Thank you for the info on bone density - I am just menopausal. My onco wants to switch me to Femara this year - that can cause bone density problems. I may insist I stay on tamoxifen xxxxxx X Lisa
Sara_B
Member
11 years ago
Hi Robyn Thank you for the info on bone density - I am just menopausal. My onco wants to switch me to Femara this year - that can cause bone density problems. I may insist I stay on tamoxifen xxxxxx X Lisa
Sara_B
Member
11 years ago
Hi Jessica

Thank you for taking the time to write a response. Tonight I will take the other half of the Tamoxifen!

X Lisa
Sara_B
Member
11 years ago
Hi Jessica

Thank you for taking the time to write a response. Tonight I will take the other half of the Tamoxifen!

X Lisa
JessicaV
Member
11 years ago
This ER+ cancer must be difficult to deal with. My husband's collegues young wife who is ER+ had the same issues of side effects with Tamoxifen, and made similar choices. She said it's easy to hate a treatment when it has side effects that make you wretched. She felt she had a choice between a present actual discomfort and a possible life-threatening event that might never happen. And it was hard to put up with feeling rotten because she didn't really realise that she could be risking her life. She is now having to deal with metastases and wishing she'd got more information and made different choices..

I have also a friend who had a local recurrence 6 years ago that was ER+ and HER2+ . She was treated with surgery, chemo and then tamaxofen for 6 years. In July last year her oncologist told her she could stop taking tamaxofen now if she wanted, since she had had no evidence of disease for 6 years and was getting some uncomfortable side-effects. It turned out that she still had those stem-cell-like cancer cells from the tumour in her bloodstream, and they could not establish metastases while the taxamofen was keeping the estrogen levels in her body down. Once she stopped taking it, and her estrogen levels went up again, the metastatic tumours established and blossomed-(very quickly because of her HER2+ status and the fact that they had never been treated with herceptin-type targetted therapy.) Three months later she got a really nasty cough and was weak and unwell but her GP did not think it would be anything to do with the cancer. A couple of months after that, she had a scan that showed up a dozen golfball-sized metastatic tumors in her liver and lungs, grown from those stem-cell-like cancer cells once they got the hormone environment they liked. Luckily her oncologist got her straight onto paclitaxel and herceptin and AI's, and after 8 months they had finally vanished again. But that was a real eyeopener.

It is hard making decisions when we have no idea what may lie ahead.

best wishes
Robyn_W
Member
11 years ago
Tamoxifen is only good for the bones in post menopausal women,not pre menopause .I think the other point to remember is that EVERY Cancer is different.I would never not take my Tamoxifen,because my oncologist has explained its importance to me,in my case.Cheers xxxRobyn
Sara_B
Member
11 years ago
Hi again I had a 28mm grade 1 tumour in nov 2013. Oestrogen pos, nothing in the nodes. I have had a double mastectomy and am only taking 1/2 the dose of tamoxifen. This is will give some protection - I have a fatty liver on tamoxifen. I am still concerned about the bone density issues (why do most women develop them although the onco says this is good for the bones!) While I understand the benefit of being on the drug, I have met many woman with similar cancers who never took it and are fine, particularly if they had a mastectomy. This is the data which is not collected. I think we should be questioning. The drug companies main interest is market share. By the way, I recommend keeping away from generic tamoxifen. I now take novaldex. I do find it better. Best wishes Lisa
Sara_B
Member
11 years ago
Hi again I had a 28mm grade 1 tumour in nov 2013. Oestrogen pos, nothing in the nodes. I have had a double mastectomy and am only taking 1/2 the dose of tamoxifen. This is will give some protection - I have a fatty liver on tamoxifen. I am still concerned about the bone density issues (why do most women develop them although the onco says this is good for the bones!) While I understand the benefit of being on the drug, I have met many woman with similar cancers who never took it and are fine, particularly if they had a mastectomy. This is the data which is not collected. I think we should be questioning. The drug companies main interest is market share. By the way, I recommend keeping away from generic tamoxifen. I now take novaldex. I do find it better. Best wishes Lisa