Hi all
Just wondering if there’s anyone here who is having chemo but has negative nodes. I’ve been looking at the US site and seems an awful lot of people there have chemo although their nodes are clear and tumours are small. I have bilateral BC and had WLE on both sides, and docs say because of this my risk of recurrence is higher, but I am still only due to have radiotherapy (and aromatase inhibitors as I’m ER+). My understanding was that chemo would not be indicated if nodes are clear. Its not that I want to have chemo, but if it would help in the long run then I’d rather go down that route than risk recurrence later. So I’d be very interested if anyone knows any more about the criteria.
Thans
Sheila
Hi Shiela
I don’t think it’s a simple as positive or negative nodes. I believe they also take into account the grade, hormone receptor status, HER2 status, size of tumour, grade of tumour, your age, just about everything they can consider.
In the hospital I’m at, if you’re node negative, small tumour (less than 20mm), Grade 1 or 2, hormone receptor positive, then you’ll be likely to have rads and hormones. That was what I was initially pencilled in for, though I was considering asking them whether chemo would improve my chances, but when it came down to it I was grade 3 (so more likely to get chemo) and HER2+ (so definitely up for chemo), and the decision was made.
You might want to ask about your scores on adjuvant online or any of the other tools they use when determining whether or not to suggest chemo. I know there have been others on here who have been given the very difficult choice as to whether or not to go for it, and they looked at the difference in likelihood of recurrence to help them make their decision.
hi sheila
i echo what Choccie says- its a combination of things. I was originally ecpecting wle, snb and rads but no chemo. However my tumour was 32mm so despite my nodes being clear the onc said that the combination of tamoxifen and chemo was greater than the sum of the individual percentages in terms of sticking around and not getting a reccurence. Does that make sense?(i had chemo yesterday and I’m a bit fuzzy round the edges.) It wasn’t a massive improvement on rads and tamoxifen alone but i decided to go with it.
Ask for more information maybe.
best wishes
Thanks ladies
I’ve had a look at Adjuvant online, the site claims its only relevant for unilateral. I have seen a study though that claims it is relevant for bilateral, but I imagine the oncologist didn’t consider it relevant because of the claims stated. Most studies say prognosis is linked to biggest, but a few say no, it should be considered cumulative (I prefer to go with the majority, optimist that I am) but there still seems to be a bit of controversy, hence I was recommended bilateral mastectomy on what I think was intuition rather than hard evidence.
My biggest was 2.2cm, so marginally T2. Otherwise lobular, grade 2 (lobular usually is), ER8/PR5-7, HerO, with some LCIS.
I’ve started on AI’s already and have RT planning session tomorrow with 3 weeks of RT planned to start 5 May, so I don’t know if I’ve missed the boat. I really really don’t want to go down the mastectomy road (I never knew I was so attached to them until now) but would like some peace of mind over the chemo thing, and although the oncologist wasn’t too impressed when I mentioned it before I think I will look again at the Oncotype DX. He seemed to think it was a bit of American overhype, but as far as I can see its the best thing available at the moment. I don’t know what my options would be if it came back high-risk if I’d started RT.
Up till recently I was quite at ease with my decision, but I’ve gone all wobbly.
Any other thoughts appreciated. And hope you both come out the other end of the chemo soon.
S
Hi Sheila,
My nodes were clear and they eventually got clear margins after mx and another op 2wks after. My surgeon explained that I didn’t need radiotherapy but in relation to chemo, there was a 4% difference (89% as opposed to 85%) chance of me still being here after 10 years. The decision to have chemo was up to me. I do private work for a pain consultant and had a really good talk to her. She was adamant that 4%, even though it seemed small, was 400 ladies alive over an above every 10,000 after 10 years. I could just BE one of those 400! Putting it that way, I decided to have the chemo, even though I was not very happy about all the nasties predicted. I have now had my first FEC of six. I feel OK at the moment although not 100%.
All the best for the future
Sue xx
Thanks Sue
I just wish I had someone who could take the time to sit and discuss the situation and convince me I was going in the right direction. I think I’d be like you and be able to evaluate whether whatever percentage was presented was worth suffering chemo, or not whatever the case may be. But so far, no, its been recommendation of drastic surgery, but no mention of chemo so far. I’ve decided I’ll hang on for a few more months.
Thanks again
S
I’m not sure if it doesn’t make a difference because you have lobular cancer rather than ductal, which is most common. I think you should definitely ask for a second opinion, many ladies on this dite get them from the royal marsden. For the sake of a little hassle and a few days, it will either put your mind at rest that your treatment is correct, or recommend treatment that you should be having. I think your gut feeling may be that this is wrong, and its your body and you have to trust your gut feeling.
Also, why not repost your thread with the title “no chemo for lobular cancer” ( as well as keeping this thread) as the lobular ladies may have some more info thats relevant.
All the best
vickie
my nodes were clear and i have grade 3 dcis too 30mm im am told i will be having chemo im also tripple negative will be asking question tomorrow when i meet with onc for the first time
Hi, another lobular lady here. I had multifocal ILC grade 2 and grade 3 DCIS, stage 2b T3, with clear nodes. Chemo was recommended on the fact that it was multifocal, my local unit add the tumour size for overall TNM scale and being premenopausal was also taken into account. My ER score was 140/300 so only moderately ER positive. I hope you can get another opinion to help you decide. I had a mx with immediate recon. Good luck!
Hello
I am on 6 x FEC and 4 weeks of rads for a 30mm IDC, Triple Negative, High Grade 3 cancer with no node involvement. I was told I am having chemo to offer what they called “full body protection” due to the size of the lump, my age (46) and the aggressive cancer.
Hope this helps.
Tracy
My nodes were clear and my tumour Grade2 and 2cm.I had chemo[FEC/Tax] because it was also triple negative which can be aggressive.I will be 5yrs post dx in October.
Good Luck
valx
im going to be having
E X4 EVERY 3 WEEKS
DAY 1 C.M.F
DAY 8 C.M.F
REST 3 WEEKS
C.M.F x4
C.M.F altho given over 2 weeks is classed as 1
think after this onc said 6 weeks of rads but i will no for sure nearer the time as onc said lets get chemo out the way first
i was dx with dcis grade 3 invasive breast cancer 30mm clear nodes tn
Maz
I just wondered why you are getting a different regime to me considering you have same dx as me all that appears to be different is you had DCIS as well as IDC. Did they explain that any of this is because of the DCIS?
As you know I am 6 x FEC…not sure if how much this differs from the regime for you but it just seems odd that we are receiving such different treatment.
Hope you are ok today, enjoy the sunshine it is going to be hot hot hot today.
Love & hugs
Tracy xxxxxx
Tracy many tumours also have DCIS but they dont always mention that bit as its not soi relevant if you have an invasive tumour… you wouldnt get chemo for dcis so it really down to the hospitals chemo protocol.
when i was 40 i was on E-CMF too although a slightly different regime… i had a grade 3 TNBC 1.9cm with no nodes but did have LVI and high grade DCIS making the whole size 2.5cm… however because the DCIS isnt included when they are calculating tumour size (its not invasive so cannot spread).
there are quite a lot of ladies who i have spoken to who didnt realise they also had dcis unless they asked specifically or asked for copies of their path report.
i had a grade 1 hormone pos tumour ER 7, in the other breast when i was 37 but didnt need chemo for it, it was 1.3cm, no nodes but HG DCIS too and overall size including dcis was 2.3cm.
i think things would be better if there was one common protocol instead of every onc having their own ideas.
Lxx
lu wot got me is i was dx with dcis grade 3 30mm didnt say invasive at all
it was only yesterday that i got told about the invasive part as i kept asking why chemo (altho i remember them saying invasive once before the wle) they just kept telling me from day 1 chemo would happen because of my age (im 41) i always thought it was slow growing (thats wot i told OH too ) but infact is wasnt it was growing fast i know i found my lump over night belive me i couldnt have missed it it wasnt there the day before not that size anyways when i had my scan the whole thing was 3cm including cyst when i had wle it was 3 cm on its own so im led to belive(yes i really do have different size boobs right now 1 is dd cup the other(bc) is a c cup ) tbf i have given up asking cos i been told to many different things wot i do know is im going to have chemo to MAKE SURE its not anywhere else and if it is it will be zapped so to speak, as i tell ppl im going with the flow still feel like i will wake up really dont think it has set in its like 1 big dream guess when i start chemo and hair falls out i will belive it all untill then i carnt see past tomorrow
maz