Hi Daysie I actually posted a bit in the november Chemo thread about TNBC… But basically triple negative means it has no hormone receptors ( oestrogen and progesterone) so hormone treatment doesn’t have any effect on the prevention of recurrence, it is also negative for her2 receptors so perception has no effect either… Chemo is very effective and is actually more effective for TNBC… FEC-T is a very common Chemo regime for bothe TNBC and non TNBC, but there are others that can be given too.
Other positives about being negative is that if you have no recurrence within 5 years then they will actually say you are cured as the risk of getting a recurrence of TNBC after this time is almost nonexistent… Hormone positive cancers have a lifetime risk of recurrence.
And also as you won’t need hormone tablets or injections you won’t have to put up with the side effects that some women have to endure or the next 5 years.
Yes it has a poorer average outcomes at round 75% survival to 10 years compared with 90% survival for hormone positive cancers but I think 75% chance of still being here in 10 years time is pretty good odds.
I’ve calmed down a bit now, went into the negative zone for a while, not a good place to be. I guess the odds against 25% of us not being here in 10 years, for other medical reasons, could work out the same for us, in the grand scheme of things. I wouldn’t expect to be here at all in 40 years time :o( so 10 not too bad. It’s just that I don’t usually ‘win’ the lottery either. Will perk myself up tomorrow, in the words of Daniel Bedingfield “I’ve gotta get through this!” LoL
Think I was also traumatised today following my pre-chemo tour of the chemo unit - it all feels so real now.
Another thing - I hate being out of control of my own life, the consultants are like our Gods, they have to tell people bad news every day as part of their jobs - then they say “right I’ve finished with you now - next please”. I’m finding it soooo hard to be pink and positive…
…tomorrow is another day, will rally the troops and be stronger!
As well as the support you receive from the other users if you would like to talk things through with someone please don’t hesitate to give the BCC helpline a call. Here you can share your concerns with a trained member of staff who will offer you emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.
Hi Daysie,
I have triple negative breast cancer too. It is quite confusing and initially it seems like a scarier ride. I have just had my first chemo. Do you have any lymph nodes involved? hope you’re ok Chloe xxx
to all you girlies worrried about TN read again what Lulu said and take heart, it’s true what you say daisy that there are no guaruntees in life…and to cement what Lulu said I had BC 15 years ago and was succesfully treated in was ER+ and now after all that time I am back on the roller coaster again!!! I will never be free of the worry! treat yourself to a 5 year diary and tear apage out each day rip it up into shreds!!! that’s to you BC!!! We are all unique individuals on a unique and different journey we can’t control where the ride takes us but we can get support and comfort from all those who are riding or have ridden this rollercoaster!JX
Slightly confused! Have triple negative, however, they did the surgery, mastectomy and removal of lymph nodes BEFORE chemo, which is due to start with the month. Every case I read about, the chemo was done first. Was it because my tumour was less than 2cm? I decided on the mastectomy as I have small breasts and by the time they removed a reasonable margin, there would not have been much left anyway.
Hi ,just to add that my op was done first also.I have big breasts and my lump was about 1.4cm ,2.2 with pre canc cells margins so i had a lumpectomy and 3 nodes removed to be tested xx
I was also TN with 2cm invasive and an extra 1cm non-invasive with 4/19 nodes affected, so grade 2 and stage 2. I had Mastectomy early January, followed by FECx3 and Tx3. Rad finished end July. I was told my recurrence rate is as high as 30% to 40% after all these treatments. I am very concerned with such high recurrence rates. Has anybody got a similar prognosis? Even with TN and nodes affected, I am hoping that my onc is wrong in the statistics.
I heard that TN secondary is very difficult to treat, which scares me as well.
I can’t be positive about it, but I am trying my best to reduce the recurrence rates as follows:
Walk/run for 30min. or 3km on a treadmill every day. My pulse has improved.
Take about 1000 cc of fruits/vegitable juice; homemade fresh one to drink within an hour after juicing. The large consumption of vitamins through fruits/veg improve your immune system, which is important to beat the cancer occurence. In particular, carrots/apple juice is very good.
I take very little red meat nowadays, no processed meat. The main protein comes from chicken, egg, soybeans and fish. I feel healthy.
Take 41 degree water hot bath to increase your body temp. My temp has increased from 35.4 to above 36. Cancer likes a low temp body.
The immediate effect was that my white blood cell counts came back to within a normal range; my blood circulation has also improved; I used to have a difficulty in taking blood from veins, as some were damanged due to chemo, but now surprisingly the veins are coming back.
Just noticed your post, sorry sometimes miss where I have posted lol. To answer your question, no I don’t have any lymphys affected, all my scans were clear. I should have my first chemo this week.
How did you get on with your 1st chemo? was it FEC?
Hi there I was diagnosed in October with triple negative breast cancer. They don’t think any of my lymph nodes are affected (from ultrasound scan). I too was a bit confused as to the implications of TNBC but reading these posts does help. I have started chemotherapy TAX +Avastin x 3 then FEC x3. I ended up being hospitalised with neutropaenia after first cycle of chemo but my oncologist reduced my 2nd dose by 10% and I’ve been injecting myself with G-CSF (bone marrow stimulating) injections to avoid the same happening again. I thought I was dying there and then!
Feeling more optomistic this time round although the pain and fatigue I find really frustrating. I’m also a bit confused about diet. I’ve been advised to eat a clean diet and avoid vegetables and fruit except bananas or oranges, eggs, and dairy products. I’ve only just got to grips with a healthy diet and was steadily loosing weight before my diagnosis. Obviously my taste buds have changed dramatically and I’m suffering with indigestion which doesn’t make me feel much like eating although I do in order to feel more energetic. Does anyone have any dietary advice?
Hi all its nice to find others diagnosed with the same as me as everyone seems to have the hormone one. I was diagnosed two weeks after the birth of my second son in April, had two ops 6 lots of FEC and just coming to the end of radiotherapy but feel worried about the future now treatment ending and no drugs out there.
Hi Adele, just read your post and wanted to share some of my experiences with you. I too was diagnosed shortly after giving birth (5 weeks) with TNBC, I had WLE and SNB and then 6 x EC chemo and 20 rads, all my treatment is finished now (end in Sept) and like you I fretted about the future especially when you have two young children. I have even been to London to see a guy who specialises is TNBC and he put my mind at rest, it was great just talking to him as no-one in the North East has a special interest in TNBC. Woman can be cured of this disease, that’s what he kept reiterating to me, and like others have said its highly unlikely that it’ll come back after we get to year 5, I know it seems like a lifetime waiting for “year 5” but we all have to stay postive (bet you’re sick of hearing that!) and remain strong for our kids, wishing you good luck Jo x
Jo love it when doctors do ac what a great thing to read. Like everyone else with TNBC I too have been worried even though I have been told that I have a 10 year survival rate of 89% (and of course these figures are out of date).
I love it when doctors use the word cure, my doctor does.
Lulu thankyou for your input ,it shows that although we can’t have hormone therepy, there are actually positives about being TNBC .
Happy Christmas to all of you .
xxxx
Sarah xxxx
Hi Darlojo,
I have just been diagnosed with breast cancer, had SN biopsy yesterday and having a mastectomy and reconstruction in January.
My cancer is triple negative which I am finding very hard to take in. I live in the North and was wondering who you saw in London who specialises in triple negative cancer.
Thanks
Jayne
