Hi all
I was diagnosesd with breast cancer in August and although the lump was stage 1 and fairly small, which would usually mean a wide local incision, because of my family history (mum and maternal aunt died in their 40s of breast and ovarian cancer, sister just finished treatment for breast cancer and was confirmed BRACA 1)and biopsy results(lump is triple negative and Grade 3)I was also offerd risk reducing double mastectomy.
Anyway we deciced to start with chemo first to give me time to have genetic blood test for BRACA gene alterations,get results and make decision regarding surgery. I have now had 2 lots of epi and am due to have an ultrasound next Monday (just before epi number 3) to see whether the chemo is working i.e. has the lump reduced at all. I am so stressed about this because if the lump hasn’t got any smaller I think my onclogist is going to change my regime to Taxotere and I will be basically back to square 1 because the 6 weeks of epi I have already gone through won’t count.
I know that the most important thing is to know the chemo is working and to be honest that was one of the advantages to doing things this way round as I will be able to see the chemo is working because the lump is still there but I just feel so worried as I know I will find it really really hard to deal with if I have to change regimes and start all over again.
Has anyone else done things this way round and do you know just how much a lump could realistically have changed in 6 weeks? I would really appreciate any advice.
Thanks
Lucyx
p.s. by the way I have since been confirmed as having the BRACA1 alteration so will be going for double mastectomy with reconstruction after chemo…
i am bumping this up for you lucylou. I had chemoafter surgery, and a lumpectomy not a mastectomy so i cant comment on much of what you have said. However, i have had both fec and tax chemo, and on balance i would probably say fec was worse in terms of side effects for me. I hope someone with some detailed knowledge comes on to answer you soon, but i do know from reading this forum that quite a lot of womens tumours virtually disappear on the chemo before surgery. Good luck, and keep posting!
Vickie
Hi Vickie
Thanks so much for posting - there is just so much I oon’t know and trying to second guess what my oncologist might say is not a good idea but I can’t help it. The district macmillan nurse is coming round today to check my picc line so I am going to see if she has any information…I am just so impatient and waiting another week to find out it dricing me mad!
Lucyx
Hi LucyLou,
I haven’t been back here for a long while, so I’ve only just seen your thread. I thought maybe I could be of some help as I had my chemo before surgery too, though my situation was very different from yours (Grade 3, no family history).
I had eight rounds of chemo: 4 X Epi, 4 X Docetaxel. I was monitored with ultrasounds throughout. In fact I had more scans than originally planned, as things started to change quite soon after my first dose of Epi! That was really encouraging, I can tell you! I never managed to “shrink” the tumour away entirely, but I did have a considerable reduction.
I was told a few things which you might find helpful:
Two types of chemo were given to me in order to give me the best possible chance of killing off the cancer. The switch halfway through was because sometimes a tumour can develop a resistance to one type of chemo, so the second chemo can come at it from a different direction! There is no set way for a tumour to shrink. Some just get progressively smaller, others might break up. Also, more than one oncologist told me that they had seen patients have the biggest response near the very end of their chemo regime! I have also heard that often the most dramatic responses are from larger tumours, but I am not sure if that is accurate.
I was knocked a bit sideways when I was told I was going to have 6 months of chemo BEFORE surgery, but in the end I was extremely grateful to have had this newer style of treatment. I KNOW that the chemo had a big effect on the tumour, so I felt a bit more reassured that if there were anything lurking somewhere else, it will probably have done its work there too. In my particular case, it also meant that I had less surgery.
So please don’t despair! It all counts! Remember how expensive chemo drugs are: they wouldn’t give them to you if they didn’t think it was appropriate. It is still hard to find info about this way of doing things, so ask your team everything you want to know. You will have a rest period to recover before the surgery; I had about a month.
Sorry this has been a bit long winded, but I really hope it helps! I hope that your treatment goes well, and that you get good news about your progress. Maybe you won’t have to have much more chemo (Fingers crossed!) Anything else I can help with, let me know!
I wish you and your sister all the very best,
LXXX
Hi LomaLinda
Thanks so much for you reply. It is great to hear from someone else who has done things this way round. I really agree with you that the plus side is you can see the chemo drugs are definitely working or not…so latest news…had my scan this morning and the lump has gone from 10mm to 7mm after 6 weeks of treatment(2 x epi)!! Am so so pleased and relieved as I was convincing myself that it hadn’t got any smaller (or even worse had got bigger). I am not seeing my oncologist until tommorow but am hoping that reduction is enough for her to keep me on the orginal plan of 4 x epi and then 4 x CMF. I just can’t stand the thought of the regime being changed and things taking even longer which I know would be the best if it was necessary but I am so impatient and already finding the idea of 9 or so months of treatement a huge challenge!
What sort of surgery did you have? Was it a WLE? I was really worried originally about the gap between the end of chemo and surgery as I was wondering about what would happen in those weeks if the lump hadn’t completely gone with the chemo. Kept thinking that chemo would end and the cancer would have chance to start going elsewhere again before they operated. The care team have told me loads of times this won;t happen but you can’t help but worry can you. Have you finished your treament now?
Thanks again for your reply
Lucyx
HI GIRLS, My first post today! Diagnosed on 11 Aug this year via screening mamo - found no lumps or any changes in my breasts (GP didnt either); just had had dull ache in my armpit for 3 to 4 months. Shocked to discover 3-4 cm tumour in breast and enlarged lymphnode which was positive (G3). Am having FEC-T/Docetaxel ( 6 cycles) prior to surgery (hopefully lumpectomy rather than MX. Saw onc last week prior to 2nd cycle and she couldn’t feel the node anymore, so hopefully chemo doing it’s job. Will be having u/s scan after 3rd cycle. Am bald as coot now having lost all hair last week, felt devastated by that, especially as my lovely husband died in RTA 8 weeks before diagnosis; he nagged me to go for mammo and has probably saved my life. He was bald and i know he would be getting is own back on me now! No sickness with chemo so far which i am really pleased about as have a deep phobia of being sick. Stay positive. Best wishes to you all.
Mareets x