What does Triple Negative Mean...?

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.

Love and hugs xxxx

Hi Daysie

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.

Best wishes Sam, BCC Facilitator

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

hi wendya my op was also done first and i had a 5cm lump in small breast x

Hi, I had two WLE's then dose dense chemo for my metaplastic TNC cancer x

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:

1. Walk/run for 30min. or 3km on a treadmill every day. My pulse has improved.
2. 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.
3. I take very little red meat nowadays, no processed meat. The main protein comes from chicken, egg, soybeans and fish. I feel healthy.
4. 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.

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?

Thanks
Sharon

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

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

Hi All

Just to remind you that we are not allowed to name health professionals on the forum but you are welcome to share this information by private message.

Very best wishes

Janet
BCC Facilitator

Hi all just stopped by to wish you all a happy and healthier new year! I wanted to share some good news too. Just finished 3 cycles of taxotere and Avastin. Had an ultrasound scan and my tumour has shrunk dramatically from 3cms to 6mms! Best christmas present I got!

I had 4th cycle of Avastin + FEC last week and side effects have been much less this time. Still struggling with peripheral neuropathy, indigestion, constipation and fatigue but emotionally it's been the most difficult course for some reason. I feel like refusing more chemo, just want life to go back to normal. I know I've only got 2 more cycles to go and will do it, just saying it's tough!

Facing surgery is a bit daunting too. Got surgeon appt to look forward to at the end of this month.

I'm presuming that once I've had rest of chemo and the surgery, the chances of it coming back are very slim? What happens if it does come back? Has anyone else had to undergo genetic testing?

Well, hope you all stay as well as you can.
Sharon xx

Liz they are looking into other treatments like parp inhibitors for triple neg BC but they are still at early days with it.

Sharon that's great news about the shrinkage.

I am on 6 x carbo and tax and feeling pretty rubbish at the mo following no4.... Really dreadful indigestion tonight to go with scabby mouth, constipation and feeling weak and wobbly.
Lxxx

hi all, i was diagnosed with triple negative stage 3 breast cancer 22nd April 2011, had biopsy's, lump removed, 6 x fec, and 20 rads. All finished 7th Dec. Saw oncologist last week that just had quick feel asked how i felt and said they'd see me for a yearly mammogram. Have been fairly strong through the whole treatment but now its all finished i'm feeling abit down. I'm fairly angry with myself for not being over the moon but the way i'm seeing it is that the fight is only just starting. I'm back at work and trying to be normal, but looking different and clients seeing me before but didn't know why i was off is quite hard some days.
I'm hoping i've just got abit of the January blues and in time things will get better.
Totally understand where everyone is coming from though, tooo many negatives on having this type of cancer.
Good luck on all your SE's
Penny x

Hi Penny,

I have also put for you a couple of links to BCC publications regarding life after BC treatment.

http://www2.breastcancercare.org.uk/publications/moving-forward/moving-forward-support-people-living-beyond-breast-cancer-sm23

Moving forward resource pack:
http://www2.breastcancercare.org.uk/publications/about-breast-cancer-care/moving-forward-resource-pack-patients-living-beyond-breast-cancer-bcc197

I hope these also help. Take care,
Jo, Facilitator

Hi Penny,

Your post could have been me so I totally know where you are coming from. I too have TNBC Stage 3, diagnosed May 2011, had Mx and 6 x Tax. Cannot have rads as had them before for previous cancer, My chemo finished on 12th Dec and though I was delighted not to have to have any more of that particular poison, my mood has been incredibly low. I said to my sister that to me, the fight is just beginning, you almost feel protected when you are having treatment, then you are suddenly on your own. I am going back to work on Monday and am dreading it, I am still so emotional and will probably cry if anyone says anything insensitive! My poor husband must wonder where his wife has gone, I don't feel like me anymore. I saw the Oncologist last week too, and it was all so quick, I felt quite stunned after. Came out with a whole lot of pills I didn't really want, as I mentioned my fingers were numb and having hot flushes. These symptoms are bearable just thought I should mention them and now have millions of pills to take!
I am sure it will get easier, as Lulu says, I suppose it will take time to settle into this next phase of our lives, after 6 months or more of being a patient.
Good Luck!
Liz xx