hi, i have had 4 cycles of EC and last week had the 1st of 4 docetaxel. My tumour has felt sore and bigger and i was wondering if anyone else had, had this? I remember it doing that initially with the EC and was hoping that it was the treatment having an effect on it? I am obviously also worried that the chemo isnt working.
any advice welcome
anna
Hi Anna
Are you having all your chemo before surgery?
I had 4 cycles of FEC before surgery and I did have some soreness and pain around the tumour all through that. However, the tumour was shrinking too. I was told by the chemo nurse that some women can feel some discomfort as the chemo kills off the tumour.
Do you see your oncologist every three weeks and does s/he check the tumour size? I would definitely voice my concerns particularly if you think the tumour is growing.
Elinda x
Hi, thanks for the reply. Yes i am having the chemo before surgery. At me last appointment my oncologist said that he had been worried previously but that at that appointment, after examination the tumour did feel softer and smaller, i was so pleased as not a lot has been happening. Since having the docetaxel last wednesday, it has felt sore and hard again, and im worried it feeling a little bigger too. I am trying to say to myself well thats kinda what happened with the EC treatment, but that thing called worried is starting to creep in as it doesnt appear to be settling down. I will mention it at next appointment in 2 weeks. Fingers crossed it settles down in between now and then, i can bare the chemo if it is working but if it isnt i dont want to be doing it for nothing.
take care
anna
Hi Anna,
I’m not sure I have any real advice for you, as I don’t know what your diagnosis is…. But, I did have the same two chemo regimes as you, before my surgery.
Just wondering how you are being monitored? Are you having chemo before partial mastectomy/lumpectomy? That was my situation and I had several ultrasounds whilst on chemo, though not everyone does.
I believe that it is good practice to have at least one ultrasound halfway through, or when they change you from one drug to another. If you haven’t had one recently, maybe you could have a word with your BCN?
Those 8 rounds are a long time to wait & be patient, I know, hang in there!
Let us know how you get on,
Lxxx
I had 4 x ac then 4 x docetaxol last year before a mastectomy and also had pain thoughout… i had 2 scans during chemo… (one after the third ac and one after the 2nd docetaxol…) if you do think the lump seems to be getting bigger over the next week perhaps it might be a good idea to give your bcn a ring and see if you can see them sooner…?
Theresa
hi, thanks for the replys. I have a grade 3 invasive ductal carcinoma, triple negative. I am due my last chemo the 9th Dec, then they plan to operate 3 weeks after. They are planning a mastectomy as at the moment the tumour is 8cm. (i will just point out i didnt leave it to get this big, it was misdiagnosed as a fibroadenoma 6 months previously)
I havent had any scans during chemo, i have asked but i am presuming because it is so clearly felt that it isnt needed? My BC nurse said she will seee me when i get referred back for surgery, so i dont really feel she is an option to call.
anna - that seems so shocking that there is being such a gap in you seeing your bcn… to be honest i didn’t think mine were that brilliant - but during my six months of chemo they called every single friday to check how i was…
i really am sorry that it took so long for you to be diagnosed…
and really hope they will agree to you having a scan - to be honest i think everyone i’ve chatted to on her who also had chemo first has had at least one scan during it…
theresa x
I’ve only seen BCN twice during chemo so not sure what is normal. They don’t get involved in the chemo side of things at all in our hospital.
My treatment was slightly different in that I had 4 FEC before surgery and then 4 taxotere after. Mine was large too.
I have to say I found it increasingly hard to be objective about the size of the tumour. Is there a partner/relative/friend who could check it too?
Personally I wouldn’t ring the BCN I’d go straight to the Oncologist’s secretary. Ultimately it’s only the oncologist who is really going to know, order a scan or change the treatment plan. The only decision then is whether you do that today or wait a few days.
Sorry this is so difficult for you at the moment.
A big hug
elinda x
I would not worry about the tumour so much. Give the chemo time to take effect - it can be a while, and is not always perceptible to the touch. Go the course and then have a proper deep examination.
Hi Anna,
I would agree with Phoebe. Don’t be too concerned about the size of the tumour. (I know that’s easier to say than do) I had the same chemo regime before surgery and I also had a large tumour which didn’t seem to get any smaller. I often had pain too. My oncologist told me that they can’t always tell by the size of the lump whether the chemo is working as there is often hard tissue left that may not have any living cancer cells in it. My pathology report confirmed that I only had 1.5cm of cancerous tumour left but the lump was still measuring 7cm a few days before the surgery.
I am a bit shocked that you don’t seem to have regular access to your breast care nurse. Mine attended every oncology clinic as well as the surgical ones. I also had her direct number to call any time I needed advice. I would try calling her if you have questions and ask for an appointment if you are really worried. She might have given you the wrong impression without meaning to.
best wishes, Jan xx
Hi again Anna,
I tried to send this shortly after your last post, but I got locked out of the site (argh!) so sorry this has been delayed.:
I think that they don’t always do the ultrasound monitoring before mastectomy.
It’s partly to see if they need to insert a titanium marker clip to assist the surgeon with partial MX’s.
My chemo buddy had a lumpectomy first, but then they decided she would need a mastectomy, so she then had her chemo (with no ultrasound monitoring) before her second surgery. Hope that makes what I wrote in my first post a bit more clear!
Sorry to hear that your diagnosis was delayed. I hope that the rest of your time in chemo goes well. Sounds like they are on top of things with your surgery schedule. I had about a six week wait after chemo. Are you having rads too?
Not sure what to say about your BCN. Ours are all overworked, but we all had one assigned for the chemo/rads & another for surgery appts. Either way, I usually saw mine on the pre-chemo appts. with the onc., so maybe you aren’t getting enough time with her? Don’t be shy about asking for help, even if you have to wait a whole day for them to phone you back!
Lxxx
P.S.
I just remembered a conversation I had with one of the oncs. He told me that shrinkage is extremely variable, with some people making the most progress right at the very end of chemo. I would also agree with JanB’s post, it’s good advice.
Hi, thank you so much for your replies, i am due to see consultant in 2 weeks and so i will speak to him then. Sometimes i can just try to ignore it but i guess when it feels sore it feels much less difficult to ignore. If i am honest it does scare me it still being there. I need to keep in mind the bit after surgery when they come and tell me they have got it all out. Probably me poking it all the time isnt helping either.
My partner thinks that the lump isnt as close to the surface as it was. It also puts my mind at rest about the shrinkage all being different too, I guess just because there is still a big lump there doesnt mean the chemo isnt doing its job. i never used to be such a scaredy cat.
take care
anna