I am new to the site having been diagnosed back on 2nd Aug 07. I looked at the site at the time but I think I was in such a state of shock and fear that I couldn’t find the forums! That or total chemo brain. Anyway I was really shocked to find out about half way through that I was triple negative - the docs don’t seem to want to discuss this at all. I am half way through 25 rads and then that’s it - out into the big wide world - no follow up drugs. It feels as if I will have no safety net. Anyone been there?
Yep I’m triple negative too as are lots of us here.The worst thing is not having a safety net of treatment but actually being Her2 neg is not a bad thing at all.Look up posts by JaneRA in the forums,try Search or try searching triple neg.If you want me to help pm me and I’ll tell you anything I know.Love,horacexx
Oh I’ve just found the search facility and realised there’s been a ton of triple negative stuff on here so sorry for reposting! I am so annoyed with myself for not coming here sooner - what a mine of information you all are! I have just read some of the other comments about this and can really relate as I went through a really hard time when I first found out and had to do all my research on the internet too - then wished I hadn’t of course. I try to remind myself that only relatively few years ago they didn’t actually know what kind of tumour it was and many women still got through it all. It is very weird the way the doctors don’t seem to want to discuss it though. I will now go and read all the other posts on this subject. Thanks for replying to me Horace…
Hi
has anyone else who has been diagnosed with triple negative and only had radiotherapy. My oncologist didn’t advise chemo as my lump was tiny 9mm and no nodes were involved, prognosis good. However after I’ve read lots it seems the best treatment for triple negative is chemo and am now worried that i haven’t had the best treatment. I have my 1st check up in a few weeks nearly a year since diagnosis and am scared in case the cancer is still there or has come back.
Would appreciate any comments.
Ruthy x
I’m not triple neg but ER+, but I do know a lady (the mum of a good friend of mine ) who was diagnosed triple neg 8 years and she’s absolutely fine now (NED). She says she barely thinks about it anymore! She had WLE and 5 weeks rads but no chemo. Thought this might give you a bit of hope.
There’s a lot of information in the press right now about triple negative disease. some of it a bit misleading. Being triple negative is just one factor which detemrines prognosis. Having no lymph nodes with cancer and a very small tumour are both good prognostic indicators.
The purpose of radiotherapy is to deal with any cancer cells which have been left behind at the site of your surgery. So it is standard treatment for anoyone who has had WLE, irrespective of their er and pr stautus. Chemotherapy is a ‘systemic’ treatment which means it targets any micro cells which have travelled to other parts of your body. In your case your onclogist made a judgement that your tumour was unlikely to have done this and that chemotherapy was unnecessary.
I hope your check up goes well. Why not voice your concerns to your oncologist because I am sure s/he will be able to reassure you that you had the optimum treatment for your cancer.
Hi there Ruth and anyone else who’s triple negative!!
I was dx on Jan 2nd with a grade 3 triple neg, 13mm tumour no nodes or lymphvascular involvement, my appointment for the onc is the 20th March - like you I’m under the empression I need chemo from what my surgeons understudy suggested, but I’ll wait and see! I’ll keep in touch with my news, good to hear from you.
I’m in a viry odd situation I think. I had 2 tumours, 1 in each breast.
both were grade 3, with no lymphatic involvement, or lymphvascular involvement so yippee I thought (and still do).
But then I find out that the right one (35mm size) was triple neg. and the left one (28mm) was only slightly er and pr +.
So I’m triple neg and I’m not triple neg, how confusing is that eh.
Am up and down over having chemo, part of me doesn’t want to do it and feels it’s not necessary and another part feels I should.
I’ll tell you one thing for certain though. I’ve had enough of this disease and am still getting married in September bald or not
I keep reading things and found myself last night having the oddest nightmares (I only found out I was triple neg yesterday) and have found myself totally preoccupied by whatever the onc is going to tell me is my chance of recurrence.
I won’t see my onc for at least another month so am just preparing myself for the chance I’ll need to do chemo. I really wish I had an idea what my so called odds are.
I say so called because things are moving so fast in the care people are getting and the stats are based on historical data so who knows. I see it as what ever prognosis you get is probably worst case as care is improving.
So please do share.
And JaneR, thanks for posting so much. I’ve been following your story. Wish this forum had a way to find all posts by a person.
Lots of love ladies, may we all have long and happy lives. Long can be a matter of perspective of course
Welcome Angie and so sorry you’ve had to join us here but I’m sure you will find lots of help and support, there are so many women with great inspiration.
I saw my onc yesterday, who was really easy to talk too and explained my cancer in a more “english” way. If a don’t have any treatment and just go off my surgery I have a 87% of being here in 10 yrs and a 94% chance if I have chemo and rads. I don’t like the 10 year thing but as my onc said they go of guidelines for time limits as they are improving all the time, he also said prognosis is a dated form of guidance too.
I have decided to do the chemo thing which if i’m honest scares be too bits, but I want to see my children grow up. And I also look at it, if I don’t give it my best shot now, if??? it was to return then I know it did tried best first time round.
He also said what JaneR has told us that triple neg is relativley new so they don’t really know how women who are great survivers 20 yrs post had triple neg disease.
Its not that triple negative disease is ‘new’…what’s new is the increase of research (and more publicity) on tumours which don’t have oestrogen receptors or her2 receptors.
Did they tell you how much of that extra 7% comes down to chemo or rads specifically.
I’m fascinated in how this statistical database works. I have so many questions regarding how the stats are used, eg what order the questions are asked in, if there’s weighting for newer data (eg how the 5 year stats looked 5 years ago from how they look now).
I’m a programmer with more than a little knowledge about statistical algorithms so need to know this stuff to trust the system if you like.
I wonder how much age group plays on it too. I’d rather not be having to deal with this but seeing as I do I intend to be informed to the hilt
