hi
i am two years free so keep positive. you have no choice but to be positive keep on fightening.
jo xx
hi
i am two years free so keep positive. you have no choice but to be positive keep on fightening.
jo xx
Hi all, iām triple negative and finished trestment last June.
Iāve read that the following things can help prevent a recurrance but you might want to check with your doctor firstā¦
Vitamin D3, blueberries, camu camu berry (i have it in powder form mixed in a flavoured yoghurt), turmeric, black pepper.
At least 30 mins of exercise a day. Cut down on sugar. Lose weight if overweight.
Iām not sure if any of it works but itās good to feel iām doing something. The camu camu berry is recommended by Olivia Newton John who is 20 post cancer (not sure what cancer she had). Itās full of vit c and is an anti oxident
love Chris xx
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Thanks for the tips Giddy. I think youāre right itās good to feel weāre doing all we can. Iāve just finished chemo and am about to start rads on the supremo trial. I chose to have a mx first so like Morwenna will never know if my tn responded.
Is it really worse being tn?
Mx
I donāt think its worse Mandy, but its obviously not the same as being hormone or her2 receptor positive.
To me it is āswings and roundaboutsā, ie lose on the swings but gain on the roundabouts or vice versa!
Ok, we have a high risk of recurrence in the first 5 years, and that is why we accept all this sucky treatment, but down the line, if it hasnāt recurred early, it is much less likely to come back, and we can move on with more confidence than those hormone people!
Thatās my theory, and Iām sticking with it!!!
April 2011 at age 49 found small lump, did not show up on mammogram but did on ultrasound. My dr and ultrasound confirmed a begnin dcis. went ahead to camver center for another mammo and ultrasound but with needle biopsy. All confirmed no cancer, DCIS. I decided I wanted it out, May 30 had it removed and turned out to be TNBC. He did not clean margins so I asked for an MRI and there was an additional tumor behind it. Double mastectomy, 6 out of 19 nodes positive, stage 3. Did the Adriamycin Cytoxan every other week for 4 cycles, 12 Taxol and 23 radiation. After it was finished in Feb 2012, I asked for a scan. had not had one since right before the mastectomy but was told it was not neccessary, I was in remission. 3 months later found a small lump at incision site under arm. very small. Needle aspiration showed it was a lymph node with TNBC. Pet scan showed 6 areas of activity with mets on chest wall, collarbone and under the arm. I did 3 1/2 mothns daily Xelodaā¦ went to 11 tumors. Did 8 cycles of Ixempraā¦some new growth and tumors increased in size. Just started carbo/gem Gemcarbo today for 8 cycles. I have been very aggressive in my treatment but to no avail yet. Brac1 and Brac2 negative. I have mets in lungs also. My tumor markers have always been in the normal range, according to them, I have never had cancer. Surgery is out of the question and just continuing the fight. After this only clinical trials exist and I am not interested. This May will be 2 years battling. In the mean time i missed both of my childrens weddings, the birth of my only grandson. 1 year after me my dad was diagnosed with stage for metastic pancreatic cancer and lived 5 month. 6 days before my dad passed, my only broterh committed suicide because he could not deal with the stress of our cancers. BUT I live each day as fully as I can, love love life here and donāt want to go. That is not up to me and honestly nobody is promised tomorrow. God is so good and I could not do this with the Grace he provides. I have lost 6 friends to cancer, diagnosed since me. 4 were TNBC and under 32 years old. i had a friend in year 5, and was celebrating byt pulled something in her back. Found out 2 large tumors had grown in her spine and broke the vertbrae. It was also in liver, lung and brain. She was convinced she was ok because her tumor marker test were normal. Had not been scanned in 3 years. They are trying to remove the tumor marker tests. please get scans.
Hi Mistyr123,
Welcome to the BCC discussion forums where I am sure you will find good support from others treading a similar path to yourself. To help you I have put below links to a couple of BCCās publications which you might like to read. Our helpline team are at hand if you find you would like to talk to someone in person away from family and friends. Calls are free 0808 800 6000 lines open Mon -Fri 9-5 and Sat 10-2. We also offer a āSecondary Live Chatā service where you can ātalkā to others in a similar situation in real time via the computer each Tuesday evening between 8.30pm and 9.30pm, just follow the links to Live Chat if you are interested.
I hope you find this helpful. Take care,
Jo, Facilitator
hi Im a two year and three month survivor from tn bilateral breast cancer which was grade three but thankfully hadnt spread to my lymph glands.I was finally diagnosed properly when I was twenty four and nine months pregnant after initially being diagnosed as having a fibrodenoma in one breast nine months before!Unfortunetly I have a strong family history of breast cancer as my mother and aunty both passed away from breast cancer in their early thirties.I had genetic testing last year and discovered not very surprisingly that I carry the faulty BRCA 1 gene.I always worried that I did so wasnt too much of an issue for me but a huge worry for my two young daughters, who are only five and two.
A week after my baby girl was born i started eight cycles of chemo , sentinel biopsy, double masectomy with imed recon using tissue expanders and twenty five rads in 2011.Talk about a busy year!Mentally and physically I feel like Im only getting back to ānormalā lately as Ive had a few scares along the way.
Hi there fellow triple negs
. I was diagnosed last may. Grade 3 4/12 lymph nodes positive 
had fec t treatment 15 rads 4 boost. Really chuffed to get through all my treatment And felt really happy as hair growing back. felt better so treated my self and partner to new york trip but theday I got back a letter arrived from the hospital asking me to have a ct scan again, abdomen, thorax and pelvic contrast( had one before chemo last July) this was out of the blue, not mentioned previously as I would have prepared my tortured mind for another one. This has totally thrown me. I phoned the hospital to get some tips of explanation but nobody rang me back so now I fear the worst. Has anyone else been for ct scan before and after treatment? Iām under salford royal/ Christie. Donāt know if thatās just their standard practice. Would really like to hear anyone elseās post treatment stories please.
Big hugs to everyone in the pink army
Deb
Xx
hi eat more cake,
I know exactly how you feel. The fear of reoccurance and spread is overwhelming most times of the day. I am now taking anti anxiety tablets which have helped me a little, the doc said itās 20% tablet, the rest is up to me.
I try and say every day is a blessing and instead of thinking about the worse scenario (which we have no control over), we should embrace the miracle of a new day and make the most of it. None of us know the future.
Its really difficult to cope some days and they are just a blur, I am nearly 1 year since diagnosis and the ride has been really difficult, I have come a long way though since then, had surgery, axilliary clearance and lumpectomy (4/12nodes affected) chemo Fec T and rads x15 plus 4 boost. When I think of how far Ive come I am proud of myself.
I do try and get out for a walk most days, that clears my head
Just try and think of the new day as a blessing and try not to worry about the future, as none of us are able to see that. We are all survivors. Take care and post to me if you wish.
big hugs
Debbie
xx
Everyones comments on here are amazing, some scarily honest but still admirable.
My mum has just been diagnosed with TNBC at 48, she is only on her 2nd lot of Chemo - FEC. she has 3 of those then 3 of a different kind, but the cancer has already got a lot smaller so feeling positive. Although they say she will definitely still be having a masectomy and radiotherapy. As soon as she is ready i will definitely point her in the direction of this thread just so she can see all of your amazing stories and know that she isnāt on her own. She isnāt quite at that point yet though as really struggling with treatment and getting her head around the whole thing. This site is certainly helping me understand more of what she is going through.
You are all fantastic women and I wish you all very happy futures 
Deb,
Try not to be anxious about the scans. If anything it should set your mind at rest that they are checking you out. Likely it is just routine follow up as you donāt say that you were having any symptoms that would suggest recurrence?
I am just over halfway through my chemo, but I had to have a spiral CT recently because I developed dvt (thrombosis) in my leg and they were seeing if the clots had spread to my lungs. They had, which did not surprise me, but I was very relieved to see on the report that there was no sign of mets, and the nodule on my lung (which was spotted on my pre-treatment scan, but of undetermined nature) was unchanged in size and appearance, so I am hopeful that means it is B9!!
Not been on here for a long time but I wa s diagnosed with Triple neg in December,2010. Had wle no node involvement. N
Had 3 fec 3 Tax and 18 radiotherapy. treatment finished 2 years ago next month. My cousin is now 7 years finished treatment after same treatment but with mastectomy.
Iāve been absolutely fine but since retired not having young family or having to get back to work it is much easier for me.
In fact we formed a group locally and still meet for lunch regularly in Glasgow. We now have to go to a larger restaurant there are so many of us - some newly diagnosed and some old hands- not old in age necessarily!
Good luck with your journey everyone,
Margaret xxxxxx
Hi Kat.
Yes I was diagnosed triple neg bc in 2005. Grade 3 but no node involvement. 2.9cm tumour. Clear margins. I had lumpectomy followed by 6 x chemo and rads. Everything was fine until Aug 2009 when my mammogram picked up another 1cm tumour in same breast under my lumpectomy scar! But this was a new primary which also turned out to be ER+ this time.
I had mastectomy and then started on Tamoxifen and have been absolutely fine since.Have since had reconstruction with nipple tattoo in Feb 2011.
Iām 8 years on from the first and almost 4 years from this second oneā¦so a twice survivor! Donāt be too pertubed by what you read on the net about triple negative cancers. Everyone is dfifferent.
Iām sure youāll do fine. I also have 2 friends who were triple negative. One is now 10 years on and the other 12!
Good luck with everything
Bev xx
I was dx 2 yrs ago with TNBC - underwent MX with node clearance - 11 out of 25 removed were cancerous. I had 6 chemos 5 x fec and 1 x tax (couldnāt take tax, ended up in hospital) followed by 25 radiation. I am still here, obviously but very depressed. Cannot get out of my head the dire warnings I was given during treatment - you are at high risk of it returning in 1-2 years.
I am seeing a rhuematologist tomorrow to see he can get to the bottom of the extreme bone/joint pain that I have had since finishing treatment 16 months ago.
It is good to read such positive stories - I thought by now I would be 6ft under.
Hey ladies, wow! Here I am, after months I have finally plucked up the courage to get my sorry ass on here and what a breath of fresh air it is!
So my story, initial dx May 2011 after losing my my lovely mum to the b*tard disease (she was her+ not TN) 8mm lump grade 2 TN, no lymph involvement, lumpectomy, 3 x FEC 3 x TAX 18 Rads - all good, them boom, August last year it came backā¦local recurrance, what the hell!!!
So I got rid of the booberella, after all, it tried to kill meā¦twice!!! Pet / CT scan followed to check it wasnāt anywhere else, phew it wasnāt & again no lymph involvement. Sent it off on a long flight to the US to see if there was any other treatment I could try - at this point my onc was scratching his head, he couldnāt believe it had come back.
The general concencous was I had had the best of the best and to go and live my lifeā¦which I am doing but with a brief break for the BRCA testing - everyone was fairly sure I would be positive given my age (34 at initial dx) mums history and the fact that I was TN. Turns out it was negative.
I also dropped in to see Proffesor in December of last year. This is the guy who specialises in BRCA positive BC and all things TN, he is based near London Bridge and also sorted Michelle Heaton (z list celebā¦ha!) who had a bilateral mx after finding out she was BRCA1 + . He had just returned from a conference in St Antonio where they had discovered that CMF chemo is beneficial is TN BC in particular where there had a been a local recurrence. So, there I was with the prospect of more chemo what a Christmas Present!
So, I am 5 sessions in with just one more to go in June - itās been one hell of a rideā¦physically & emotionally but Iām here for a good time and long timeā¦these have merely been blips and will be erased from my timeline in no time.
Ladies, at the risk of sounding like the many people who tell you you are āsoooooooo braveā on a daily basis when all you really want to do is tell them, āI werenāt so great when I woke this morning resembling a little Britain character, looking like I had been dug up, folically challenged & constipatedāā¦ I will tell you, because I feel i can, you are all amazing xxxx
Hiya
I am just 60 years old. I was diagnosed with triple negative breast cancer in December 2012 but only got a definite diagnosis in April 2013 when one of the oncologists happened to mention it, though the medical team knew about it in December. Due to the fact that I had at least one heart attack in 2012 and the drugs I am on because of it, I have not been able to have either surgery or chemotherapy. I finished 20 days of radiatherapy including 5 booster sessions in March 2013.
Does anyone know of anyone else in this situation? My oncologist cannot even give me a prognosis as in 17 years he has not had like this! I am still off work at the moment as I donāt feel like working as I canāt concentrate.
However, I am a very cheerful person who apparently looks incredibly well - long may that continue! As a friend of mine said, I have not used up my nuisance value yet!
Hi all
I posted on this thread in the early days stating was 2 years from dx and still clear! Unfortunately not any more!
Have just been dx with tumour in other breast so far ER PR negative no HER staus yet. Have op tomorrow to remove it although they THINK it is only DCIS.
I went to GP with new lump who sent me away saying to come back in 6 weeks if still worried!! He wrote in my notes āno lump visibleā Went back to see another GP 5 weeks later and was referred to BC as non urgent as she thought it was a cyst!
I had WLE E- CMF chemo and rads 2 years ago and only had small tumour so really not expecting this. Also had clear! Mammo in Jan so it really is important to be vigilant!!!
Goodness thatās awful for you, sounds like as its in the other breast it is a new primary rather than anything related to your previous tumour though. Hoping it is DCIS and surgery will cut the little bugger out xx
Iām now waiting on an ultrasound as I felt lumps in my remaining breast, and I have not even finished chemo yet! Started Jan 9th, and still have three more weekly Taxol to go.
I told the oncologist on Monday, and she didnāt tell me she couldnāt feel anything and there was nothing to worry about, which was what I half expected/feared. She thinks it is just fibrocystic changes, but when she said that I broke down and told her that that was what I thought when I discovered the lump in the left!
I just want it checked out and to know that nothing looks different on imaging. I think I can feel a pea sized lump in the axilla, same side.
If a new cancer is growing in the right breast while Iāve been having all this poison, what hope is there?