hi I'm sorry your having to go through this again,how strange that you've almost finished your radiotherapy and now they're telling u that you have to have chemo if you dont mind me asking what test has come back that's made them re think chemo ? 

Hi

There was no immediate indication that I needed chemo, cancers were small and didn't reach lymp nodes. However, my oncologist wanted to go the extra mile so he sent my sample to the USA. This of course was delayed due to the pandemic so the result didn't get back until 2 days ago.

The test is called Oncotype DX testing. It test 16 genes in the cancer sample and gives a recurrence score and recommended treatment.  

yes mine was the same low grade low stage but mine didnt qualify for onco x type testing so I wouldnt know what my score would of been I did try and push to have it done but they refused x

Patsqueen,

Whilst its a total pain (and I'd write a profanity but CRUK will be most annoyed...again!) that you're now considering chemo when you thought you didn't need its good that this test was done and that you're being offered the chance to do all you can to avoid recurrence.

I am lucky (!?) that I underwent chemo August to December, lucky in that reduced immunity wasn't so much of a big issue then. You may already know but some treatments that reduce immunity are being delayed where they can to avoid increased susceptibility to cv.

Anyway everyone responds differently depending on their make up, their cancer, their chemo drugs and probably a whole host of lots more too.  I was generally fine on EC but not so on paclitaxel which I stopped for this reason but lots of others experiences are the other way round.  Its unfortunate but you'll only know once you start! Sorry.

I too live alone, have a long term partner but would kill him if we lived under the same roof.  I was mostly alone with visits from partner (about twice a week, he can't handle medical stuff!) and also pals who accompanied me to every chemo session, I'm sorry (given current restrictions in my chemo unit re visitors) to say this was a real highlight for me and I wouldn't have enjoyed my chemo half as much had I not had this social interaction, that said the nurses on the chemo unit were also really fun and definitely helped make the drug delivery a lot of fun.  I didn't actually practically "need" anyone whilst undergoing chemo, managed to get myself to hospitals when needed and although got lifts to & from chemo sessions I could have easily driven (or got public transport though not to be recommended nowadays).  Worth saying I am fiercely independent.

If you want to get some top tips re preventing/managing side effects and also to read about others experiences I would recommend popping over to the MacMillan online community, there's a specific group for breast cancer and an ongoing thread for monthly chemo (the first post each month gives links to useful info).

I do hope your chemo is kind.

Sam

Thanks Sam, I  appreciate your response, makes me more confident I can get through it alone.

Fortunately my oncologist wants me to stay home and a chemo nurse in full PPE will visit to do my treatment.  This will protect me from the public unlike radiotherapy which I go to a hospital for each day. That too is protected to a great extent as I have a lovely taxi driver who is transporting only myself for the duration and there was a maximum of 3 other patients each time at the treatment centre.  Having heard people talk of been unable to function following chemo treatment was scary for me.  To be honest  cancer diagnosis did not frighten me (to this day I  am the patient yet the comforter for my family who can't handle it), however the thought of chemo freaks me out big time.  I will definately look on the Macmillan site, just noticed my package has some booklets from them (hadn't bring myself to opening it until now).  Any tips/advice to get me through is needed.

Yes you were blessed to have yours then and not during this chaos.  Good luck with your post cancer life, just enjoy and live it to the full.

Thanks again.

Ok, if it is the NHS they seem to avoid expensive testing unless they deemed them necessary/relevant.  My insurance welcomes that test so I  didn't have an issue ( I didn't know there was such a test to begin with). It sure helps because next Monday I would have been considered  cancer free with a time bomb ticking away inside.  I read this morning that it is done in the UK and you can pay to have it done. No idea how expensive that will be.

Good luck.

yeh I cant have the test privately because I have already had my surgery and it was removed so think the tumour would of been disposed of after testing I start my radiotherapy thursday and feel the same but I sopose I'll never know wethor chemo would of been a better option but there isnt anything I can do about it now x

They are quite good with their analysis so hopefully your treatment will be fine with radiation and I guess you will have tablets too. In my situation lumps were removed January 11th, I met my oncoligist on 12th March.  Thursday he told me he specifically asked the hospital I had the surgery to re-test the sample to enable him to make that decision whether or not to do the testing.  He told me it is an extra step that the insurance company are in favour of and peace of mind for me and sounds like routine for him. 

yes I'm hoping so I'm on tamoxifen for 10 years aswell so fingers crossed I'll never have to re visit this awful time in my life,I hope your treatment goes fine for you and you get better soon x

Thanks, all the best to you too.  Not sure how many years of tamoxifen I will have myself.