Hi
it is confusing isn’t it, the onc did a total score of all my factors to explain why he felt I should have it despite no lymph nodes involved and surgery good first go. He said if you come to a total score of 8 or over when I do this, you definitely benefit from having it. Don’t quote me but this is how it went as far as I can remember and you know how the brain is at these results appointments, so apologies if total rubbish. I have dug out the note he wrote this on for me and mine scored 7. First it was either a T1, T2, T3 or T4 tumour and mine was a T2 , I think this was the grade/type. Then the size of the tumour, when the final path report moved mine from 20mm to 23 mm this gave me 3 points instead of the original 2 points. Finally I scored 2 for having no nodes/ vascular involvement but they had found signs of vascular involvement starting so I was very close to hitting the 3 on that one too. So I was a dodgy 7 which meant chemo gave me a significantly improved chance. Then being under 50 was another plus for having it, as they have no idea if I am pre or post menopause, due to the mirena coil which I totally believe was a factor in my BC (another story, and contraversial I know). Our area has a research centre trying to work on the structure of the tumours to try to find out which will recurr so the uni lab people trot off and collects bits of all our tumours to work on. My onc is involved in that research and BCN said under 50s get it every time, that might be observational though. The other prof here oversees the trials for the whole UK someone told me.I don’t know if this is any help, but if anyone really wants to know I will ask when I go back which is not until I change to my second drug on the trial. He says hit you as hard as they can first go with everything, while you are younger and stronger, to try to stop a recurrence. I have 2 friends with BC one had grade zero BC, (age 48 ) that was so tiny they needed a tracer wire inserted for the surgeon to find it, lumpectomy, rads, told off you go forget it,( no chemo) and now has secondary 3 years to the day. The other had primary dx a month before her this year, 2 cm DCIS then found more which was grade 2, lumpectomy , 3 weeks rads and told off you go forget it, no chemo, she is 43. She is in a different area and has decided she will go with what they say. I cannot get the other friend out my head and I am really glad (alright that was stretching it but I am on a good week) that I am having the extra insurance of chemo because I don’t see anyone able to predict the future with much certainty for early BC. After my poor friend’s experience I probably would have begged for it to be honest. It is your life and you have to do what you want but don’t have any regrets if you are given the choice because giving up that 4, 6 or 8 months just might mean you get another 50 tp play with
Wishing you all luck
Lily x
I too am not sure about age. I am just turned 56 and was told they are throwing everything at me because of my age!! I was dx Grade 2, multifocal lobular 5cm & 2cm tumours and HeR2. In my limited experience it seems anyone who is Grade 3, triple negative, HER2 and/or large tumours gets it all. I know of only 2 people who were Grade 1 and a lump removed and rads. I should say a good 75% of people get chemo unfortunately.
I also understand from ringing Breast Care line the other day that the combination of FEC/TAX is also pretty new and only been approved in the last six months after trials showing increased effectiveness. I queried this as no one else in my support group seems to be getting this combination either.
I had WLE and sentinel node on April 2nd - it was grade 2 1.5cm, ER+ but no nodes involved. The BCN told me I would have to have chemo due to my age but when I saw the Onc he was happy for me not to have it and am having radiotherapy and on tamoxifen. Have now had to wait 12 weekspost op for radiotherapy so bit fed up with it and concerned that it may have spread again.
It seems to be all different across the country - no one preferred treatment option.
Val
The decision to give chemo does seem a bit random. I went from just lumpectomy and radiotherapy to 3xFEC 3xTaxotere then rads. The lump was 25mm but changed from low grade to grade2 and I had 3/20 lymph nodes involved.By the way I was 51 but 52 as of Weds.
Babs
Hi
mine was SNB, lumpectomy, clear margins, grade 2, 23mm, no nodes involved, ER+, PR+. I have 7 months chemo (on a trial) of epi/CFM , 3 weeks rads and then 5 years of tablets probably starting with tamoxifen. Sometimes I feel like I am having a nuclear warhead fired at me compared to how fast some people go through with apparently similar figures. We do need to believe in our own treatment, or speak up quickly, after all it was designed for each one of us personally. If just one of our oncs had got it totally sussed, this would show up in their results and all the rest would soon be copying them.
Have a good weekend, chemo allowing
Lily x
hya i will keep you all informed when i have been for my results next week you to have a nice weekend xx
I am taking the difference up in FEC/TAX doses when next I see ONC. I was just told this is it and wasnt any the wiser. Do not want any more doses of poisons than I need. 2 extra doses lengthens time, increases damage to body, takes longer to recover in my book. I need to be reassured that in my case it is definitely essential.
As others say the treatment seems to vary across the country according to which ONC you see.
Thats whats good about this site. At least we get to compare and know what questions to ask which we dont in the beginning. We are in their hands and sometimes as in my case with surgery - are left not feelin happy as we had no input to decision making on what to have.
Yep my age was mentioned several times I’m 41. They decided to do chemo first, then surgery then radiotherapy. The medical profession must have huge flow charts in their heads to decide what is the right course of action for each person and their set of results and circumstances. As my oncologist said when I wearily questioned how taxotere would affect my nails ‘I am doing my best for you, you know’, and deep down I did know.
all the best
As I said I had 4xFEC and 4xTAX and that was Dec 06 so not so recent.Mind that was private and my onc said a few months ago that this is now available NHS.By the way when the chemo nurse saw what I was having she said,"I wish all the chemo ladies could have fec-t."Make of that what you will.I am certainly grateful for it.Love Val
I was told I would have had 4 FEC and 4Taxotere if I’d started a few months ago but the trial had ended so it had been changed to 3 of each.
Babs
Hi everyone
I started chemo on the 11th June and I am having 4FEC followed by 4TAX then 5 weeks of rads. I was told by the onc that this was the best treatment for my diagnosis. I am 45. I had a 22mm lump with 2cm clear margins - medullary BC which is one of the rarer ones but treated the same way- full axillary clearance with 1 node involved.
Jackie B