Tamoxifen

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 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

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..