Tamoxifen side effects, pre-existing conditions, reduced radiotherapy sessions and an endless wait.

Hello UrsaMinor

Sorry that I cannot be any kind of help that you are wanting. All of us here have suffered the frustrations of waiting for more tests and more results, until the medics can tell us anything definitive. If you scroll though posts you will see that is probably the most common recurring theme.

Unfortunately, there is nothing for it but to wait to have the tests and then for the results. The good thing is that they are doing more tests.

With respect to wondering if this will now be terminal cancer, I have seen that there are a number of ladies who post here who have secondary cancer with lesions in bones etc and who are doing fine on long term treatment for what for them has become a chronic disease. I read about one who is around 10 years in and still able to work. I hope that you get some results for mum soon and that your worst fears are not realised and that some of what is causing you such alarm today turns out to be artefacts or the other condition that you mention.

It might be worth calling the McMillan help-line to talk your concerns through with someone who has specialist knowledge.

Call the Macmillan Support Line on 0808 808 00 00. Chat to our information and support specialists online. Visit our Online Community to talk to other people who have a family member with cancer.

Thinking of you 

WallyDug

Thank you WallyDug. While that isn't a negative test result, that is the MOST comforting thing I have read for weeks. Thank you for that number too, if there's any chance this worst case scenario isn't as bad as I think it is, I reckon it's worth me giving them a call. I can only say again from the bottom of my heart, thank you.

Hi Ursaminor, I’m sorry I can’t offer any advice about some of your post but I can share how I have felt on Tamoxifen.  I have had nausea and it was at its worse several weeks after starting taking it which I found strange too.  Some people on here said different brands can affect you in different ways so is your mom on a different brand to her first pack for example?  What helped me was changing the time of day I took the tablet.  I changed from morning to evening and I have felt much better since then.

I have also had the reduced number of Radiotherapy treatment but was advised that although 5 sessions instead of 15 you still have the same total amount, just 5 more intense sessions.only finished treatment beginning of October so can’t help regarding success of it but I was grateful to only have 5 sessions not 15.

hope you get results through soon, the waiting is definitely the worst,

A couple of things I would like to add - I also had the reduced radiotherapy sessions (5 to whole breast and 5 booster s it was so near my chest wall). You get the same amount of radiation over that period and the trials for this have been going on for years. Results are just as good, but with covid, alot of places just decided to roll it out to everyone. As part of the trials. they also found people were more able to complete their course as daily commuting to radiotherapy was really tough for some people over many weeks. They also think it makes people a little less tired, again as you don't have those weeks of commuting on top. I was delighted my rads were only 2 weeks.

I absolutely hate antibiotics and had to take them recently. My whole system goes out of whack, including my mood. I would suggest a course of probiotics or drinking kefir to try and repopulate the system with good bacteria. That may sort out her sickness. She could have been feeling sick before taking antibiotics from the infection, so all that could just be lumped in to one issue. I'm probably only just starting to feel back to normal a couple of months later and I've been doing what I suggested all that time.

As for the endless tests, it is is really good thing that your mother is getting so thoroughly checked out but I don't think there would be a single person on here that wouldn't empathise with the endless waiting for results, It's awful, and not much anyone can say to make that better. The only thing you can try and do is stop your mind going into overdrive. No-one knows anything until those results are back and there is just no point in trying to figure out what it could be. No-one knows, not you, not your mother's medical team, not anyone here with a similar experience because they are not your mother. You all just have to sit tight until you know more, thoughWallyDug has given some great info about secondary cancer to try and ease your mind a little.

Thank you Chelle, I read this a few days ago, I'm sorry I'm only just getting around to replying now. Thank you for sharing your experiences on Tamoxifen, I feel MUCH better for reading that you struggled too a few weeks in (though of course I'm sorry they are also giving you a tough time!) Mom is also reading this thread, and she is much relieved at even the idea that changing the brands could help. So we will talk to her oncologist at the next appointment. I was freaking out pretty badly last week, but I am glad that Mom didn't have to suffer any more radiotherapy sessions than was absolutely necessary. The travelling was tiring, but her back was so sore the whole time! Everyone has said the reduced sessions are just as safe... but it is easy to lose perspective with this long wait. Thank you again, I am very grateful for your input.

Thank you Beatthebreast, and apologies too for taking so long to get back here. Everything you have said is perfectly sensible... it's just so easy to get lost in senselessness when you're panicking. I guess the only good thing about waiting is that while it gives you time to freak out, you also have time to calm back down! Your post has been a great comfort though, thank you. I hadn't thought that perhaps Mom is just a little depleted with good bacteria, I'll bring that up with her now too! Sitting tight is hard... but it is very much all we can do. I am just so grateful for this community, I was really spiralling out. Although Mom isn't one for worrying, she too is feeling MUCH better for reading these posts too. So again, from the bottom of my heart, thank you.