I was diagnosed in August this year with a small breast tumor with no node involvement or vascular invasion. I am 55 and post menopausal. However when I learned that my tumor was not hormone or HER2 receptive, I began to carry out as much research as possible on the “Tripple Negative” Breast Cancer.
I have recently learned from several sources that regardless of size and node involvment that all TNBC should be treated with chemo as these tumors tend to be more aggressive in their behaviour and a much higher reoccurance rate.
Although chemo was offered to me I was advised by the oncologist that given size of tumor etc., that surgery and radio would be sufficient. She began to quote survival rates with and without chemo and the difference was less than 1%.
I have asked for a second opinion but I do not feel that I am taken seriously by the medical team… They tend not to be too concerned about the hormone status of this particular breast cancer which I feel is the poor relation when it comes to research etc.,
I had triple negitive tumour- my tumour was 1.9 cm, grade 3. No nodes involved. I was offered chemo and having it at the moment. The reason being it was a grade 3 tumor and my oncologist think chemo could add 10% more survival chance to me.
My chemo is FEC by the way and it is given as an insurance.
Hope this helps and understand that is is not an easy decision. My main concern of having chemo is the side effects- i am 31- the biggest concern is fertility
Hi ladies
I too am triple negative.
I was diagnosed in Aug 08. I have Inflammatory BC ,grade 3 and my tumor is now 10cm plus. I have 3 nodes under my armpit which are 2/3cm each. I am 37.
I have had 2 AC chemos which failed to shrink the tumor. I then had 2 Taxotare chemos which failed to shrink the tumor,my oncologist wanted me to try rads then surgery but i was not keen as rads before surgery holds lots of risks.
I asked my GP to refer me to The Marsden in London and i saw professor Smith who suggested i try a platinum based chemo. Volrelabine and Carboplatin. Drugs that are used mainly in Lung,Liver and Ovarian cancer.
I am due my second lot of my new chemo on Boxing day, i do think there are subtle changes happening so i am glad i sought out a second opinion.
Pencil- stick by your guns and tell the GP your concerns, they cannot refuse you a second opinion and you can have it anywhere you choose.
Sorry you are feeling frustrated with your medical team. I think if you feel unsure then yes get a second opinion…as Shell says you are entitled to this… your hospital consultant or your GP can refer you to anywhere you choose. The Marsden or Christies in Manchester are probably the most well known cancer centres of excellence.
5 years ago when I was first diagnosed the term ‘triple negative’ breast cancer was not used…it has become a shorthand term for any breast cancers which are er- pr- and her2- (negative). However there is not one kind of triple negative breast cancer…the term covers several (or many) kinds of breast cancer. Other factors, as well as er pr and her2 status determine the aggressiveness or not of your cancer…vascular invasion, grade of cancer, nodes involved for example. Not all triple negative breast cancers are more likely to recur than other kinds of breast cancer. The statistics your oncologist has quoted may apply in your particular case…
But the important thing is that you are not feeling confident in your present medical team…so its probably a good idea for you to get a second opinion.
I have triple negative breast cancer which has recurred but my cancer had spread to 23 nodes at diagnosis. As I said…there are many different kinds of ‘triple negative’ breast cancer.
I have triple neg bc dx Oct 2006.grade 2 idc 2cm no nodes involved and no vascular invasion.With chemo and rads my prognosis for 10 year survival improved by 10%.My onc recommended chemo ‘because ot triple neg status’.I would ask for a second opinion unless your tumour was less than 1cm.
A big hello and hugs to you all. Hope you had a fab xmas.
Thank you so much for your comments, they are greatly valued. My tumor was less than 1cm (7.5m) which is why I think I was offered rads after surgery and no chemo. I must say that although I was relieved at the time at not having to have chemo, the more information I read on tnbc the more uneasy I feel.
I take on board what you say Jane about not all tnbc are the same, however, I did read an article recently that woman diagnosed with small breast tumors such as Her2 or tripple negative should always be offered chemo regardless of node or vascular involvment. After the xmas break I will request a second opinion, I know my GP will not refer me as he says it will be up to the specialist who is currently treating me. Since I do not feel entirly comfortable speaking to her about this, I am considering the possibility of self referal. Cheers.
Your onc will have a very sophisticated computer programme which works out the difference chemo will make to your prognosis. If she says 1% then that is such a tiny difference, and given some of the horrendous side effects of chemo - some permanent - she was probably right to say don’t have it. I was told chemo would make a 2.3% difference and as I am 64 I decided not to have it and my onc said he fully supported that decision. Of course you have a right to a second opinion and that might put your mind at rest. I am not triple negative as I am Her2 receptive, but as that at present is only given after or with chemo I have not had anything other than lumpectomy and 5 weeks of rads and I am quite happy with that.
Hi pencil
It is your GP that you get the referral from not your oncologist that is treating you.
I had no problems getting my second opinion at the Marsden and as my tumor is now very large my oncologist has even suggested i now see a plastic surgeon at the Marsden as the breast surgeon i have seen can not do a mastectomy with extensive surgery. I have had to go back to see my GP again for another referral.
You shouldn’t have any problems as every one is entitled to a second opinion.
I don’t think it is possible to self refer. Your GP had a professional responsibility to refer you if you wish…this is your right and a GP who refuses to do so is in breach of their professional code of conduct.
HI ALL,
I AM TRIPPLE NEGATIVE AS WELL DX 3-07 WITH STAGE 3-C MEANING IT WAS IN THE LYMPH NODES ABOVE THE COLLAR BONE. I HAD CHEMO,A LUMPECTOMY,HYSTERECTOMY (BRCA-2 +) ALONG WITH AN OOPHERECTOMY. EVERY LUMP AND BUMP IN MY BREAST WAS THE CANCER RETURNING. SINCE I COULDN’T LIVE THAT WAY I DECIDED ON A DOUBLE MASECTOMY THAT WAS COMPLETED 7-08. I STARTED HAVING CRUSHING HEADACHES IN THE BASE OF MY SKULL WHEN I STOOD UP OR SAT DOWN AND FINALLY A LITTLE DIZZYNESS A WEEK OR TWO LATER. IT TURNED OUT TO BE A BRAIN MET. I AM DUE FOR RADIATION IN A WEEK OR TWO. I AM HAPPY WITH MY DECISIONS. I HAVE TRADED IN ONE ONC FOR A BREAST ONC. GO FIGURE, THE ONE I TRADED IN WAS A WOMAN WHOM I INITAILLY FELT MORE COMFY WITH AS SHE COULD RELATE TO ME AS A WOMAN. THE NEW ONE , THE BOOB GOD, IS A MAN.
LADIES BEWARE, OUR CANCER IS ONLY SECOND TO HER 2 + FOR BRAIN METS. THE BOOB GOD SAID HE HAS OFTEN MADE UP SYMPTOMS TO GET INS COS TO PAY FOR BRAIN SCANS FOR THE HER 2’S AND SAID THEY ARE CONSIDERING THE SAME FOR THE TRIPPLE-'S.
Sorry to hear you have been diagnosed with brain mets. I was diagnosed with tripple negative breast cancer in August 08 (last year). My tumour was 7.5mm less than one centimeter. The medical team said it should be a good prognosis as the tumour was small and no evidence of spread to nodes or vascular invasion. However, like you I have recently been suffering from headaches at base of skull. Specialist is sending me for a scan and I am terrified. I was never offered chemo because of size of tumour etc., however, the surgeon told me that he attended a conference on tripple negative bc in Paris recently and said that there are different sub types of tripple negative and that there was no way of telling which one I have. Although I am preparing for the worse case scenario, I will be devastated because I have been holding on to the initial diagnosis which was supposed to be good.