Hi Jets & Seabreeze,
In the wee hours last night I found this thread, attempted to reply twice but fat fingers on tiny phone keyboard thwarted me.....
So - from my position, after biopsy / surgery, revised diagnoses & SNB, I met with the oncologist. Radiotherapy was a given, chemo (as in direct into veins) was also discussed. I was advised this would make a 2-3 % difference, but was not without its own unique risks to my health. In addition due to the hormone status I would be recommended to take hormonal meds for 5 yrs (as current advice dictates).
After discussion I felt confident to decline chemo - I felt given my diagnosis & personal circumstances, coupled with the advice from the MDT via the oncologist, this was the right choice for me.
Having made that decision I thought no more about it until I stumbled across this thread. In some respects having read the posts here I feel naive - yet I have not looked back.
I have deliberately not disclosed my diagnosis here as believe it may detract from the discussions held. If you wish to know more, please private message me & I will happily disclose,
Best wishes with your decision & may you find the peace of mind that brings, with no more short notice cancellations.
I'll be thinking of you on Wednesday! x
I hope you don't mind me jumping in on a thread here, but I was initially told that they were not recommending chemo for me but when I met the oncologist she started talking about the percentage benefits. I got a bit upset as I didn't think it was still on the table, but they said they just wanted to let me know what was on offer. Once I calmed down I said I really couldn't face chemo and they were happy with that as the benefits would only be 4 - 5 %. But when I got home I spoke to a friend and asked if she thought I was being silly and not doing everything I could! I said I felt like 5% was quite a high improvement and I should have taken it. But this is what my friend said: "If you were desperate for a baby and I told you that you only had a 5% chance of getting pregnant would you call that high?" I suddenly didn't feel stupid for turning it down, and I haven't looked back. Numbers all become very skewed and meaningless when you have something this huge on your plate, but the right people will help you. The point I'm trying to make is that no-one is obliged to do what anyone thinks, as long as we listen to the advice the decision is ours and we will make the right one for us. Apart from when tumours need to be shrunk, I understood that chemo was a preventative measure.
Now also looking at next stage of treatment.
Have been told I am HER- and hormone pos so have already begun Lamastrozole (2nd menopause already begun yuk)
I had my Lymph nodes tested before my mastex as I wanted an implant - I was told they are clear so may not need radiotherapy as well. Final results based on breast tissue and everything else I think are on Friday.
I also want to go in a bit more prepared than I have been previously
At moment I am hoping that the results stand but having had so many it 'probably isn't' I feel prepared fro radiotherapy and whatever!!
I had a 3cm grade 1 tumour with lymph nodes involved, and a 6-8% advantage with chemo, but I was given the choice of whether I wanted to go ahead with chemo or not. I decided that 6% was not insignificant so went ahead, and oncologist decided that it should be FEC75 rather than FEC-T.
I wish there were more set guidelines on when chemo is necessary and what protocol should be used. I think that would make it easier to feel more confident about the treatment and decisions.
Hi, her2+ status goes with chemo because herceptin to treat it is not licensed to be used without chemo. thry need to moniter you very closely as it can affect your heart.
I was told I would need chemo simply because of my lump size (5cm) , however the her2+ cancer is a fast grower and they need to be sure they've caught it. I am node clear and clear margins too.
I was also told most breast cancers are hormone positive, the her2 status is an added bonus. Booo
Everyone will have their own views on this but I will give my experience. The surgeon said that there would be no chemo but after a further op to clear the margins it suddenly came on the menu. No-one was really clear about why ( comtinuity of seeing people wasnt brilliant where I was treated) but I saw an oncologist about it and it turned out that as my cancer was HER2 positive it might be receptive to Hercepetin which you can get only with chemo. For my profile -it's not you as an individual they talk about when giving % its about the type of profile you have - the added benefit was 3%. I know that many people say that you should take all you are offered but my view was to weigh up the benefit of the here and now with chemo experience and the future. The oncologist made no attempt to persuade me and the oncologist i saw regarding radiotherapy said something to the effect of 'a good decison not to have it'. My cancer was also hormone receptive so I am taking letrozole with very few side effects. I wish you wisdom with your decision making.Boa
So helpful reading this am in a similarame position in that i decide on chemo next week and find myself jumping from one decision to the next every hour.
I wasnt offered the gene test they dont do it at our place so not sure what the stats are. My head feels like bursting they say my cancer is out with clear margins and no lymph involvment seen. Its hormone receptive so will definetly have radiotherapy and tamoxifen but should i opt for chemo too? Help.....
I had chemo and RADS and am now on Letrozole. I wanted anything they could give me. I am 15months down the line now and doing well.
It is your descision, I know your daughter is trying to help and will be feeling lots of different emotions. My daughters were brilliant and supported me with whatever I wanted as did my husband.
It has already been said to you 2% is 2% every little helps. Chemo is not quite as bad as you imagine and you will get through it. The staff on our chemo unit were fantastic and so supportive.