Diagnosed January this year 6.5cim x 4.5cm lump Grade 3, triple negative, invasive right breast. Had six lots of TAC finished in June. July 1st bilateral mastectomy and axillary clearance right side 5 nodes affected out of 19 with one spread into surrounding tissue. Due to start three weeks rads in August hope seroma clears up before then. For those just starting chemo I now have ‘fuzz’ last chemo was on June 6th, seven weeks ago. Don’t know how long it will take eybrows and eyelashes and body hair to grow back. It does seem us triple negatives are lucky in one way not having to take any further drugs. My sister-in-law was on Tamoxafen and she said it gave you a metallic taste in your mouth, shades of chemo, no thanks!
Good luck to all
Nonny
By the third lot of TAC my lump had completely gone, they could not even find it using ultrasound! So it looks as if triple negs do respond better to chemo.
I started this thread back in May as I had not really heard of many of us with triple negative BC. I am due my last TAX (no 3 after 3 FEC) on Tues and although I am looking forward to the ‘last one’ I am also feeling slightly anxious as radio starts 19th Aug and due to finish 16th Sept, I have no ‘safety net’ so to speak. No Tamoxifen or Herceptin - wondering when or IF cancer research can come up with something to give us that backup.
What I do know now is that if I ever have to go down this route again I will do without a second thought - all along chemo has been ‘do-able’ and to be quite honest most of it has been a breeze. I also know that we are all different in our treatment and don’t wan’t to take anything away from the ladies who have been really ill during their chemo. I have just been lucky.
This website has really given me the strength to go on and be positive about what I have got. I will soon be on the threads of undergoing radiotherapy and hopefully the ladies on the undergoing chemo will be with me on the journey through radio.
Good luck to all those who are just starting their journey on chemo and just to say that it is do-able and time will fly and before you know it you will be on rads, then life will be ‘normal’ again (whatever that is)
I usually repsond to trip neg posts but somehow missed this one. Yes it is scary to be trip neg and come to the end of treatment but you will find your own way of living afterwards whatever happens.
I had an average kind of time on chemo for primary breast cancer… not the breeze you decsribe cause I got hellish exhaustion but not as bad as I feared…and like you I knew I’d do more if I had to. Now a year into regional recurrence and after four more chemos and the propsect of more I feel like I never want to do more…not ever…guess I probably will.
many people live long and well after triple negative breast cancer but if it comes back the prospects aren’t great…we must all keep shouting for more and better research.
I write this remembering Wanas (Jan) who died about a month ago.
Only just found out today am also Triple Negative. Have totally finished all my treatment WLE (3cm) no nodes involved 4 FEC 8 TAX and then 4 weeks of rads.
All my treatment was carried out in Spain wghere i live and was told by onc. that they didnt have the technology to tell what type of cancer it was.Then yesterday recieved a full report of all my treatment from the hospital. The report says that i had a Grade 3 tumour and im Triple Negative. When i was told i would need no more treatment after rads as i was herceptin and oestrogeon negative i asked if that was a good thing and my onc. said yes very good, i now dicover from this site that Trip. Neg is not so good.
I feel very disappointed that they didnt tell me after biopsie and now very afraid of the Dx. Before i recieved this rport i felt very positive and now i feel as scared as when i was first DX.
Its good to be able to talk to other women with the same DX
I have posted below for you BCC’s publication ‘Understanding your Pathology Report’, I hope it helps you better understand your report. If you have any questions you may find the Ask the Nurse email service useful seeing as you are in Spain.
I don’t see triple neg as not so good myself. I am both triple neg and hormone positive (had 2 tumours at the same time lucky me, both different so I see it from both sides as triple neg girl and er+/pr+ girl).
Triple neg does mean that you can’t use hormone therapies, but I believe it also means that you don’t need to avoid hormones like estrogen in foods etc. There are many many different chemo regimes out there and triple neg cancers often respond better than the hormone positive ones.
Cancer full stop is not a good thing but please do not think that because you have triple neg cancer that there isn’t any treatments for you that’s just not true.
The nurses and doctors have told me several times that even thought I had 2 tumours, both were agressive grade 3, one was triple neg, 1 was er+/pr+ that the most important thing of all was the lack of spread to the nodes, hold on to that… it’s not a guarantee of no recurrence etc but it’s a d**m good starting place.
You don’t have to look forward to hormone therapies either, that’s not a bad thing.
Thanks for that. I was very positive until i got the report. Reading about other ladies who are Trip. Neg has been very helpfull. I suppose like finding out i had cancer i just need to get my head around it.
I think when all treatment is finished you just feel a bit lost.
Hi all
1st dx left breast, Dec '99 age 29, chemo, rads - triple neg. 2nd dx dec '06 new primary right breast, mirror image of first, this time bilateral, chemo, no rads. No nodes either dx. Plunged into menopause at 34 & still going through it, as for avoiding hormones like estrogen i was told in no uncertain terms to steer well clear, natural or otherwise, i was told my bc was not hormone receptive but i am more susceptible to developing another cancer & this may well be.
I had 8 clear years & i am looking for many more!
take care
Louise x
Louise that’s interesting about the hormone stuff. I’ll have to see what my onc says although because my second tumour was er responsive I should be careful anyway but I can’t see why you would have to be as like me you should have virtually no breast tissue left after the bilateral. Curious.
Were both of your tumours triple neg then?
I do feel cursed having had 2 tumours but in some ways lucky that they did happen at the same time, some part of me is hoping that I got it all out of the way in one go if that makes sense, just hoping really.
Hi verangie
yes both trip neg, even when i had a bilateral my consultant said there is always a chance of recurrence or a new dx as they cannot remove all the breast tissue some cells or tissue will remain. This is also true as i am having my ovaries removed later in the year, but i have discussed various options including a full hysterectomy, as he has also stated having my ovaries removed which ever option i chose, does not remove the possibility of being dx with ovarian cancer as cells will always remain. Nothing is 100 percent certain, but with the treatments etc. our outlook is very positive, the problem with me is i always ask the ‘what if’ questions. I have been there twice don’t want to go back if i can help it.
take care
Louise x
I know what you mean Louise about what if questions and not going back if you can help it. Saw the genetics clinic on Friday and there’s a good chance I’m brca so my ovaries may be off out too. I dread the idea of more surgery but if it stops me getting ovarian too then it’s worth it but yes I was aware that a few cells will remain after the mastectomies but hopefully the rads will blast most of those into non existence but you can never be 100% sure can you.
Hope the op goes well for you and recovery is fast.
don’t know how I missed this post as I have been angsting over a slightly different problem re triple neg. I was dx april, mx & recon may, widespread high grade DCIS and 11mm grade 3 tumour, invasive, 4/14 nodes with micrometastises. Er -Pr- but HER2 borderline neg. I had FISH test on tumour biopsy, 5/9 sites were HER2 positive, giving ratio of 1.9. Now, the requirement for being positive is 2, but there is a discrepancy between labs of 0.2 anyway (so it could be 1.7 or 2.1…)
so, I am either triple neg ( with an erring towards HER2 pos!!) or not. Who knows? Currently waiting on more tests on the metastatic cells that were in the lymph nodes…
I have felt quite lost with this - Fizbix has kept me positive with her attitude to it - and I do know that hey - whatever type we have it may come back, but I would really like that little HER2 pos bit to also be zapped to kingdom come!
As my onc said, and I repeat often, your statistic for recurrance is 0% or 100%. There is no inbetween. he also said that with me we aren’t looking for 10 year all clear - if it stays gone for 3 years it’s unlikely to return. I could take that either way couldn’t I? - jsut looking out for early changes for the rest of my life now, in reality!!