Forum Discussion
Tamoxifen
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?
35 Replies
- Hi all I am now recovering from a double mastectomy. It has not been painful, some discomfort from the drains inserted to prevent swelling. They are there for about 2 weeks. I feel I am more in control of my situation. I went back to see oncologist - my risk to my bone/lung/liver is actually 20% (I don't think I was concentrating previously). Tamoxifen will reduce this to 12%. Apparently it has been saving women's lives for decades. He recommends acupuncture for side effects. I will have some next week and then go back onto a Tamoxifen. Thank you all Xxxx
Hi Sara, having a double mastectomy may be a good choice for you to give you more confidence that all the primary cancer that was found in your breast in has gone, in a way a lumpectomy and radiotherapy didn't give. But even women who have a double mastectomy are advised to take some hormone therapy to reduce the estrogen in their bodies and/ or have chemo of some kind or both. This is because surgery does not deal with any of the estrogen-fed rogue cancer cells that can have already spread in the blood or lymph even if your lymph nodes are clear, and can show up in months or years time as metastatic cancer in liver or lungs or bones etc.
Surgery removes the primary cancer. Then ttamaxifen and sometimes chemotherapy too, are used to help prevent secondary cancer especially distant/ metastatic cancer. This is a separate problem from the issue of removing all the primary cancer that has initially appeared. In breast cancer. I am not sure if you understood that if you choose not to have any other treatment, the risk that it could appear elswhere after months or years becomes higher because you still have lots of estrogen which can fire up any remaining estrogen-receptive cancer cells still in your body in a way they won't if the estrogen is blocked by tamaxofen. There are many different treatments that help prevent metastases ever happening, and many different ways of reducing the sideeffects of the different treatments, and the wise women on this board have a great deal of experience that could help you find a solution that works for you and gives you some action to take to help ensure you do not get fmetastatic cancer. Maybe the risk for you is low enough it is a sensible choice to take the risk and avoid the side effects of the drug, but maybe there are other ways to reduce your risks and also avoid the side effects.
This whole breast cancer journey is confusing and full of very hard decisions, and it is often hard to feel you have enough information and have understood it fully, and even when you do, the choices are often really difficult.
I hope you will manage to find solutions that work for you
best wishes
Hi Deanne
Thank you for your response. Having spoken to a new surgeon I am now heading towards a double mastectomy no reconstruction. I have spoken to women who have done this. Your chest just looks like a little girl's! The prostheses are easy to use comfortable and stick to the chest and you can swim with them. They cost $450 ea and are covered by Medicare. I will keep you posted as I go. XX
- There is a group on here called 'Breast Reconstruction' online group. You can find it by clicking on Find a group and putting it into the search bar. It is a private members only group but you can request membership and once granted they have a lot of terrific info on the different types and aspects of reconstruction. You can also read the stories of women who have undergone reconstruction. This is the best place to ask about other people's experiences with this. Take care and good luck with whatever you choose to do. Deanne xxx
hi there; this may not be the approach you may be interested in; but effexor- may assist with some of those side effects from the tamoxifen..
hi there; this may not be the approach you may be interested in; but effexor- may assist with some of those side effects from the tamoxifen..
- I have been post menopausal for 7 years now,but I am on Tamoxifen.The reason for this is,that the Aromatase inhibitors,even though they give slightly more protection against recurrence,they also cause joint / bone problems.I was going to change,but now I have osteoporosis,so I have to stay on Tamoxifen.The downside with Tamoxifen,if you are post menopausal,is that after 2 years,your chances of endometrial cancer increase SLIGHTLY.So as my oncologist told me,it is important to have regular check ups for this,and report any symptoms that you may have.Hope this makes sense!! Cheers xoxRobyn
- Thank you all for your assistance and comments. It is very helpful. Narelle asked about my side effects: Waking up at night. Although I would read and go back to sleep it was accumulative. Tired. Irritability. Sometimes nausea and headaches. Much more forgetful. My mood was flat. As a single parent of teenage boys I do not have a lot of assistance. I stopped all alcohol, caffeine drinks and chocolate to try counteract the medication.You may be absolutely fine on it! My oncologist says that there is evidence to show that accupuncture is helpful. Tamoxifen is for pre-menopausal women. I am 51 so should my periods stop soon then I can go onto the aromastase inhibitors. Does anyone have any experience with these?
- Thank you all for your assistance and comments. It is very helpful. Narelle asked about my side effects: Waking up at night. Although I would read and go back to sleep it was accumulative. Tired. Irritability. Sometimes nausea and headaches. Much more forgetful. My mood was flat. As a single parent of teenage boys I do not have a lot of assistance. I stopped all alcohol, caffeine drinks and chocolate to try counteract the medication.You may be absolutely fine on it! My oncologist says that there is evidence to show that accupuncture is helpful. Tamoxifen is for pre-menopausal women. I am 51 so should my periods stop soon then I can go onto the aromastase inhibitors. Does anyone have any experience with these?
- Thank you all for your assistance and comments. It is very helpful. Narelle asked about my side effects: Waking up at night. Although I would read and go back to sleep it was accumulative. Tired. Irritability. Sometimes nausea and headaches. Much more forgetful. My mood was flat. As a single parent of teenage boys I do not have a lot of assistance. I stopped all alcohol, caffeine drinks and chocolate to try counteract the medication.You may be absolutely fine on it! My oncologist says that there is evidence to show that accupuncture is helpful. Tamoxifen is for pre-menopausal women. I am 51 so should my periods stop soon then I can go onto the aromastase inhibitors. Does anyone have any experience with these?
