Tamoxifen

Hi Jessica

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

X Lisa

Hi Jessica

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

X Lisa

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

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

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

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

Hi Jessica It has been months since I have been on this website. Thank you for your response it is very helpful. I am on tamoxifen and still have my doubts about the drug. My onco, who is highly regarded, says it is good for bones and heart. I have met women through dragons abreast paddling and they all have bone density problems from tamoxifen/femara! Only one woman's bones were ok - she does weight training twice a week and rows twice a week. I have bought myself some 1kg weights which I exercise with as I walk. Bye for now Lisa

Hi Sara B, I am so glad to hear that your surgery went well. It doesn't hurt much for a start, because they cut nerves and also do some longer-term kind of painkiller, which is great. But then as the nerves come back there can be some weird and rather surprising twinges of pain that you don't need to worry about because all it means is that the nerves are coming back to life, not a sign of anything being wrong. 

Do be very careful with the drains and don't do what I did, ie got tangled up in them overnight and partly pull one out so it stopped flowing and then got infected. And if you do, as soon as you have the first symptoms of an infection at the drain or wound, be really pushy about seeing your surgeon again for getting on antibiotics. I let a nurse talk me into waiting 2 days by which time the infection was extremely bad.  It took about two months for the swelling from the infection to go down, before I could wear any sort of breast prosthesis. So please learn from my mistakes and have the easy ride you deserve on this difficult journey.

It is hard dealing with all the issues of what surgery to have, what to do re reconstruction or breast prostheses, how to learn to live without fear while also living with the knowledge that we have an increased statistical risk of recurrence. Good for you for going with Tamaxifen: I hope that process is manageable for you, and that you get onto all the wise advice about how to deal with side effects effectively

All the best

Jessica

Hi Sara B, I am so glad to hear that your surgery went well. It doesn't hurt much for a start, because they cut nerves and also do some longer-term kind of painkiller, which is great. But then as the nerves come back there can be some weird and rather surprising twinges of pain that you don't need to worry about because all it means is that the nerves are coming back to life, not a sign of anything being wrong. 

Do be very careful with the drains and don't do what I did, ie got tangled up in them overnight and partly pull one out so it stopped flowing and then got infected. And if you do, as soon as you have the first symptoms of an infection at the drain or wound, be really pushy about seeing your surgeon again for getting on antibiotics. I let a nurse talk me into waiting 2 days by which time the infection was extremely bad.  It took about two months for the swelling from the infection to go down, before I could wear any sort of breast prosthesis. So please learn from my mistakes and have the easy ride you deserve on this difficult journey.

It is hard dealing with all the issues of what surgery to have, what to do re reconstruction or breast prostheses, how to learn to live without fear while also living with the knowledge that we have an increased statistical risk of recurrence. Good for you for going with Tamaxifen: I hope that process is manageable for you, and that you get onto all the wise advice about how to deal with side effects effectively

All the best

Jessica

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