how do I decide on treatment options?

I was diagnosed 30months ago with grade 2 ductal carcinoma. I had chemotherapy (FEC) followed by surgery (partial mastectomy with latissimus dorsi flap reconstruction and lymph node removal, - not an operation I would recommend) and radiotherapy. As the tumour was highly oestrogen sensitive, I was put on arimidex, but a month ago another tumour was found in the same breast. I have now had a mastectomy (wish I had had it in the first place). This new tumour is less oestrogen sensitive and is grade 3, although it was relatively small at 1cm. CT scans do not show any spread. My oncologist has given me the choice of just changing my arimidex or having 4 cycles of chemo - this time docetaxel and cyclophosphomide - in case any cancer cells have entered the bloodstream. His preference is for me to have chemo, but I am finding it hard to get my head around this as it was originally thought that I could get away with just the mastectomy. How do I decide and what questions should I ask?

Janella, I don’t know what to say, so bumping you up the board in case it prompts a reply from someone more informed

And bump again!

Plus the suggestion to phone the help line tomorrow perhaps- they are lovely!

Hi,

I never had the choice about a mastectomy or not, my tumour was too large and behind my nipple. I’m about to start chemo and then radiotherapy. My tumour was also grade 3 and is strongly hormone positive.

There seems to be quite a lot of difference between what different surgeons advocate for women in much the same position. I wasn’t given any choice about chemo or radiotherapy and to be honest I’ve never questioned it, im relying on them to make the right decision for me…might be too trusting I don’t know! It seems unfair not to furnish you with a bit more info before you have to make that decision - have they not said which course of action you should take ?

But the chemo is doable - thousands of people g o through it each year. It’s not pleasant and I’d rather not have to. But you don’t have anything to lose do you? It’s four months of unpleasantness but s great chance of it not coming back and I’d much rather it didn’t come back!

Best wishes

X

Hi janella

It sounds like you are having a pretty tough time at the moment. As lavendar lassie has mentioned it might help to talk things through with someone on the BCC helpline. Here you can share your concerns with a trained member of staff who will offer you a listening ear as well as support and information. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9 to 5pm and Saturday 9 to 2pm.

Best wishes Sam, BCC Facilitator

Hi Janella,

I too have had a small recurrence, mastectomy, recon and my onc said chemo would give me at least another 7% chance of survival. I dont think I was treated aggresively enough first time round so it was a no brainer for me. Chemo is not the best time of my life (done 3 fec, just had first tax) but it is doable, its not all bad days and for me its a case of no pain no gain. Its all personal though and you have to look at what you want and what your personal risk strategy is. PM me if you want any more information. I think sometimes it makes it harder when they leave the decisions up to you.

Ruby.xx

Thanks to all for your comments. I am busy talking to everyone and gathering information. It is generally pushing me in the direction of chemo, although it seems this only gives me another 5% advantage. I shall take up the suggestion of phoning the helpline to discuss. Good luck Ruby - you’re right, it is harder when the situation is not cut and dried, but I do respect doctors who admit there are various possibilities and they do not always know!

Janella xx