Making decisions Triple Negative

Hi ladies
Today I went to the clinic for an update after my surgery on 3rd May
I was diagnosed with grade 2 invasive ductal BC
Well the lump on path report must have shrunk cos it was 8mm on last scan & measured 7mm on path, Doc said we rarely get one this tiny I was upgraded to 3 But im stage1 … clean nodes & the wide margin was all clean Brilliant I thought, however mines not hormone receptive but the Doc thought that was good news ?
They knew how I was so horrified about the thought of chemo but he said in the meeting they had they all agreed I was “boaderline” if to have this or not Ive an appointment to see an oncologist next Monday he will weigh it all up & throw some stats my way ! women in this situation that do have it & those that chose just to go with the radiotherapy & the choice will be left to me.

Id appreciate any feed back from ladies here in this situation those that just went with radiotherapy & those that chose chemo as well. As I understand it, its because im hormone neg that they do in some cases advice chemo ?

Mekala

Hi,i have the same bc as u but mines hormone poss,i thought any stage3 invasive was chemo?I guess im still learning,just finished chemo rads start nxt wk,it wasnt as bad as i thought,if u do have chemo it is doable even a wimp like me did it…Xsarahx

Just thought id add mine was 25mm !Xsarahx

Don’t get confused between GRADE and STAGE. They sound very similar so often get confused.

GRADE = how aggressive it is. Grade 1 is the least, Grade 3 is the most aggressive. Grade 1 is less likely to need chemo.

STAGE = how far it’s spread and takes into account nodes, size, secondaries etc. Stage 1 = confined solely to the breast, up to Stage 4 = has spread past the breast adn nodes and there are metastases in other parts of the body.

thanks ladies & yeah im quite aware of the difference between grade & stage mine was grade 3 but stage one as it was only 7mm confined to the lump all the margin was clean & all 5 nodes were clean … but its hormone Neg thats why they are saying its boarderline if I need chemo or just the radiotherapy
Id love to hear from anyone who’s was hormone neg & just had radiotherapy
Thanks again :slight_smile:

Just2put it right mine is grade3

hi all. my bc was grade and stage 1. clear nodes and margins. er positive. they offerd me cemo with 3% benefit. i turned it down. my consultant said for me i had made the right chose.get has much info as you can and things might become clearer for you. good luck with whatever comes your way. xxx gaynor

Thanks Gaynor thats good to know, did you have radiotherapy ?

Mine was much the same as yours but was 10mm good clear margins and all nodes clear. I was triple negative but like you was borderline for chemo. I have opted to have it and am due to start on 1st June. The way it was explained to me is that the adjuvant calculation they do does not include the negative elements and drugs in tablet form are not suitable for this type of cancer. I therefore made the decision to go ahead as a precautionary measure and will have 4 cycles of AC plus RADS (not sure how many yet). I’m not looking forward to it but if it stops it coming back then it is a small price to pay!

Thanks Patts yes if only they could guarentee it wouldn’t come back good luck hope it all goes well for you

hi all
yes i had 15 lots of rads and iam on tamoxifen and zoladex injections. going through early menopause age 41. xxx gaynor

Hi Sarah No not nessesarily Ive a friend her mate had grade 3 stage two hers was 3 cm but her nodes were clean so too was her margins she only needs Radiotherapy BUT hers is hormone pos

Hi Pats yeah this seems to be it I know those ive talked to in same situation with triple negs their oncologists o average are saying 3 - 4 % advantage which is a bit disapointing & you have to weigh that up with all
such a shame they haven’t a drug for the negative ones yet

Hi,

I was diagnosed with a grade 3 triple negative 20mm tumour and clear nodes in September, I was told that the recommendation for chemotherapy was based on the hormone negative status and my age. (I’m 34)

I have finished the chemo (6 x FEC) and am now 14 sessions into radiotherapy (25 sessions plus 8 booster)

I don’t know whether you are into technical research papers, but the attached link is linked from the Cancer Research UK pages and gives some stats from some quite comprehensive research on both chemo and radiotherapy.

ctsu.ox.ac.uk/~ebctcg/

My view is that although chemo is horrible (but do-able), it is 4 months weighed up against reducing the risk of recurrence, and if you don’t do it will you always be wondering ‘what if’.

Jen

Thank Jen Yes I read the stats on the link you gave … Im 44 btw & yes that seems to be it with the triple neg BC its been good having spoken to women in a simular situations I think because they said in my case its boarderline may benifit may not is why im so indecisive but until ive spoken to my oncologist this altogether will help with my decision

may I ask Jen I see yours was 20mm did you have any invasion in your margins ? just wondered if thats why in your case there was good reason that chemo was going to reduce the risk of reacurance

Hi Mekala,

I was also borderline. My tumour was 18mm but also with invasive cancer throughout the breast. I had a mastectomy and SNB. My nodes were clear but my margins were not good, even with mastectomy so I had to have a second op. I was told that my prognosis was 85% over ten years whereas, if I had chemo it would be 89%, a difference of 4%. I was given the choice of either having it or not. I didn’t need radiotherapy because it was a full mastectomy. I was very abivelent about having chemo as it seemed a lot of cr*p for not much advantage. However, I have a friend who is a Pain Consultant and a Medical Director of the Trust. She sat me down and explained that 4% means that in 10,000, 400 patients would be still alive after ten years that would otherwise not be. She said that I could just be one of those 400! I have always had this dream of hangliding on my 100th birthday so anything that can help is good enough for me. I have just been for my FEC2 on MOnday. It is a bit of a grotty experience but certainly doable and I am now glad that I didn’t wimp out.

All the best with your decision, Sue. xx

Wow thats incredible thank you for that… still love to hear from any ladies who just had radiotherapy what I have read for radiotherapy on my cases from good breast cancer reseach sources are very good too

Hi,i wasnt given an option oc said u need6xfec

I wasnt given an option,glad i wasnt as i wouldnt have had chemo,glad i did now just incase i had a cell somewhere i would of always been thinking have i?X