Any triple negative survivors out there?

[Whitfield]

Bel - stories like yours do help us belwive we will get through this nightmare. Thanks for posting.

Pam x

[bel]

Hello ladies,
Yesterday was 13 years to the day that I was diagnosed with triple neg BC. In fact it was the first year I didn't even notice that the "big day" had come round again. Oh how I remember initially counting the months, then the years...And of course I will never ever forget Monday May 13th 2002 - those three words "you have cancer" and, aged 31, life as I knew it instantly collapsed. Forever I feared, at the time. If someone had told me back then that 13 years on I'd be fine, and would have gone on experience many lovely things in my life since the cancer I'd have found it hard to believe them. But it can be done and if I can do it so can all of you.
Best of luck to everyone.
Bel x

[CathyB]

I was diganosed grade 3, triple negative, stage 1 in Dec 2007 and had all my treatment in 2008.  I had a lumpectomy and the sentinel node test which showed it hadn't spread, 8 rounds of chemo every 2 weeks and then radiotherapy.  I was 36 and my son had his third birthday the day my chemo started.  I also had to consider harvesting my eggs as we were still trying for a second baby, but because we had one child already and the cost of fertility treatment so high, we decided to hedge our bets and instead I had a separate drug during chemo that was intended to "protect" my eggs, Neulasta.  Combined with the effects of the chemo drugs Cyclophosphamide, Epirubicin, Paxitaxel and Zoladex, I had the full enforced effect of menopause.  I can't say how that differs from not taking Neulasta as well, but hot flushes and mood swings were interesting!  I am now nearly 7 years on from my first diagnosis, 43 years old but without any additions to the family and now perimenopausal so the roller coaster of hot flushes and mood swings is back!

Finding others who were triple negative is very comforting as all the other ladies I have met had no idea what triple neg meant and were confused as to why Herceptin or Tamoxifen were not things on my list of drugs. On top of that my Oncologist never told me at the time I was triple neg, I actually had to ask after reading my notes and searching online, he thought the truth would be too scary in the early weeks. 

Good luck to everyone who is going through treatment, hang in there, there is a light at the end of the tunnel xx

[sarah222]

Hi Gilwernbowls,

Just wanted to thank you for coming into this thread. It makes me so happy whenever I hear of someone who has passed the two, three, five year mark. I was diagnosed 19 months ago ( I never know if the years should be counted from when one was diagnosed, or when the treatment finished, if the latter, it's been 10 months). 

Hope is a wonderful thing, and I hold on to it firmly.

Bel's advice has also been super helpful and I continue to try to improve my daily lifestyle with a nice diet and just looking after myself in any way I can. Is there anything you do in particular, which you think has helped you stay away from a recurrence?

Thank you again for sharing your experience x

[suzanne2]

Hi thank u for that comment, did u have node involvement too x

[zee66]

Hi bel 

Thank u 

Zee66 xxx

[bel]

Hi zee66,
The only chemo I was given was fec - no-one ever mentioned taxotere. Anyway, I've been clear ever since - and that was 13 years ago.
Best of luck.
Bel x

[zee66]

Hi gilwernbowls thank u been out of my mind with worry and I pray u stay well forever thank u so much

[June_BCC]

Hello Gilwembowls

Welcome to the forums.

As well as the forums we also have a support helpline where the staff can offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

Best wishes,

June moderator

[suzanne2]

Lucy will my comments show today as they don't seem to be, thanks x

[suzanne2]

Pam how do u get through the day cos at the moment I can't drag myself out of bed, I'm crying all the time, girls please give me some ideas to help with this. I keep telling myself they have taken all the cancer away, my scans were clear but the thought of it returning is driving me insane, I'm a mess at the moment x

[gilwernbowls]

I was diagnosed in 2010 with TNBC stage 3, and am here to telll the tale despite not being able to have my full chemo treatment! I only had 2 full FEC then 4 reduced doses of FEC and no Taxotere as I should have had.  23 radiotherapy sessions and despite the problems I have now been told I don't need further follow up because Wales only do follow up for 5 years after diagnosis!    However I am well, so perhaps I will stay well forever, 3 cheers!

[suzanne2]

Woke up feeling worse today this feeling is awful isn't it, worried out of my mind x

[suzanne2]

Aww I wish I could switch off and not have this constant feeling in the pit of my stomach, it's awful I think I'm gonna drive myself insane with all this worrying x

[suzanne2]

Is anyone else having trouble sleeping, I haven't had an undisturbed nights sleep in months, waking at least 3 times a night, any suggestions to help with this x

[suzanne2]

Thank u have been a mess, been so positive up until I realised it was triple negative.

[Lucy_BCC]

Hi Suzanne and welcome to the BCC forums
Along with the support and shared experiences you have found here, our helpliners are on hand with practical and emotional support so please feel free to call on 0808 800 6000 and talk any concerns or queries through. Lines are open 9-5 weekdays and 10-2 Saturdays .

I am posting a link to further support and information from BCC on the treatments area of this site which I hope you will find helpful:

https://www.breastcancercare.org.uk/treatment

Take care
Lucy BCC

[Whitfield]

Zee66

Treatment is assessed by the grade and stage of your cancer. Speak with your oncologist if you're worried. It may be you don't need rads, or surgery but as we're not the experts do ask the doctors. Maybe they want to roll you through a bit at a time as its a lot to think about in one go.

Pam x

[Brewster]

As far as I understand Zee, taxol is very effective for TNBC when combined with EC or FEC. It's is very confusing as everyone gets slightly different treatment. I had 3 x EC and then 9 x weekly paclitaxol. You could always ask your oncologist again to put your mind at rest. I had bilateral mastectomies pre chemo too but no rads

[zee66]

Hi a bit worried has anyone just had fec75 for tnbc

[Whitfield]

Hello Suzanne2, Your cancer sounds similar to mine, I'm 55 but 56 in a few weeks. I had TNBC grade three with four nodes involved diagnoses August 14. Has eight chemo sessions four EC and four Taxol which reduced the tumour to nothing, then I had surgery, lump removal and full nose clearance and now doing 20 sessions of rads. I know it's hard to be positive but steer clear of stats and try to focus on your treatment. We are all different some make it and some don't. We are here if you need to chat or ask anything.

Pam x

Ps. My mood is often down but we do get moments of cheer. Stay positive and do the treatment then you have a good chance.

[suzanne2]

Hello everyone I'm new to this I have TNBC stage 3 and have been finding it difficult to function because of the worry about it I have read on the net, be nice to speak to others in the same position as me xxx

[suzanne2]

Hi please excuse me writing a comment I'm new to this site and don't really know how to make a comment. I have TNBC state 3, 5 lymph nodes involved, have been reading up on prognosis and have frightened myself so much, have been terrified. I had a lumpectomy and total node clearance, ct and bone scans were clear, my surgeon said cancer has gone and having chemo and radiotherapy as a precaution. But reading the net has scared me so much, I'm due to have my 3rd fec Friday then 3 tax then 20 sessions of radiotherapy, xx

[Joanne1973]

I couldn't watch it either, was close to tears just knowing it was on. Far too close to home.
😞

[Amanda10]

I didn't watch it either Pam . Every time I turn the tv on or open a magazine there is something about it ....when you are going through it yourself I do t think it's helpful. Going for my op Tom hope they still do it with my chest infection. After that I'm going to ask for a scan on my painful shoulder ..... It seems never ending xx

[Delphinium]

I have just watched it, on my own. It was raw, challenging and yes close to home - but I feel it's helped me. I'm worried too. In fact I'm realising this whole cancer thing is sinking in drip by drip.

[Whitfield]

Can't watch the C word tonight. Much too close to home. So worried it will come back...

Hope you are all well.

Px

[Delphinium]

Thanks Pam
I'm Barbara but feeling shy first time on forum I chose my dads favorouite flower, delphinium, as my user name. Thanks so much for your encouragement! You're quite far ahead of me.. What's it like having radiotherapy- I've been told same as you 8 chemo plus lumpectomy then rads. Thx Barbara

[Whitfield]

Hello Delphinium, Pam here. You are similar to me in that I'm 55 TNBC, tumour 31 mm by 21mm. Hospital gave me chemo first 4 EC then 4 Taxol which strunk tumour. Then lumpectomy, then surgery and now in rads. Yes, it's hard but you can do it. I had a PIC line and was offered Emend which is a great antisickness drug.

You are not alone.

Pam x

[Delphinium]

I've just joined the site and you ladies are so brave.
I'm 54 next month- diagnosis TNBC, grade 3, size 35mm x 27mm nodes removed
Just started chemo - FEC-T x 8 cycles.
It's very hard isn't it? Just kind of not knowing what teats will reveal and prognosis etc. but sharing worries and feelings is good! Wishing you well x

[Joanne1973]

I'm not eligible for testing and am over 12 mths post treatment now so no good for me but absolutely brilliant that there are trials and hope out there!

I had a 12 mths check up recently and my doctor did say that the first 2-3 years are critical for our special club of tnbc and after that the risk of recurrence dramatically drops. She was very reassuring.
It's difficult for us all but you just have to live your life and enjoy it because who knows what is round the corner for any of us.
Xx

[Whitfield]

Thanks for this Joanne1973 - I think you are right in you need to have gene mutation but others do check. It's good to see that there is some work on TNBC being done.

I don't have the gene so not eligible. Not sure if that's good or bad! Bad to have the gene but I'd this PARP drug works then this is good progress.

Pam x

[Joanne1973]

Hi ladies, found out today there is a trial for tnbc called Olympia, looks like only available to those who are brca positive. Looks like it is an oral drug given straight after standard treatment for those of you going through treatment at the moment. Worth an ask when you see your doctors xx

[Dee1945]

Thanks Bel, I really appreciate your support. Tracy will be 48 in November. She is a strong, savy, positive women that has had to make some very hard decisions the last few years. She will be having the double mastectomy next month and expanders put in in prep for reconstruction later. We are fortunate we have a large supportive family and she has the greatest friends and co-workers.

  Wishing you and all the ladies on here the best. I have you all in my prayer box along with my darling daughter. Live well.

[bel]

Fantastic news Dee! Wishing her all the very best with surgery & treatment. Bel x

[Whitfield]

This is lottery none of us wanted to win and didn't even ourselves forward for. It's so unfair. I don't think TNBC is getting the same sort of publicity as hormone driven BCs. Most people I tell about TNCB don't seem to know it exists but they do seem to know about hormone driven cancers. More research is needed.

I'm goinig to speak with my hospital to see if there are trials I can take part in.

Good luck everyone with treatment. We can do it....

Px

[Gymnut]

Hello Ladies

It has been a while since I came on the forum but see there has been lots of activity recently.

I am 54 and was diagnosed with TNBC in Dec 13.  The tumour was small but Grade 3 and no nodes involved.  I had lumpectomy then further surgery to remove a small area of DCIS followed by radiotherapy. I was offered chemo but declined as the percentage gain was small and after lots of discussions with oncologist, GP and breast care nurses I felt the possible benefits of chemo just weren't worth it weighed up against the awful side effects especially given there was no evidence of spread.

I had my first annual check in February and the mammogram was clear.  Next week I am going to have some reconstruction - lipomodelling - to (hopefully) fill in the shrinkage caused by surgery and rads.

Like everyone I have had an up and down year.  Despite being a fit and healthy person everything seems to have 'gone to rats' ..... I've developed a bad back (nothing serious but annoying), terrible mood swings and at one point was convinced I had endometrial cancer but after lots of tests the docs are putting everything down to the sudden stopping of HRT and the menopause!  Although I try not to worry about every little niggle you just can't help it.  I have also lost a good friend and colleague to lymphoma - she was diagnosed at the same time as me and seeing what she went through has almost made me ashamed that so far I have got off lightly (I know that sounds wierd but hope you understand what I mean).

My experience is that TNBC is not widely understood except for us poor souls who have found out about it the hard way.  There have been many advances in breast cancer treatment over the years but we are all in that difficult situation where there is nothing concrete we can do to protect ourselves.  Even the experts do not really know - they just throw the standard treatment at it and hope it works.  When I read Tolliebelle's post it really made me sad - how awful to have a clear mammogram and then 4 months later find out the cancer has returned.  

I feel angry sometimes and refuse to get hung up on every theory going.  I try to eat a healthy and varied diet and keep up with the exercise I love however, I won't stop enjoying a glass of wine or switch from my shampoo and shower gel to paraben free varieties in the vague hope it may have some effect!   TNBC is a lottery and we ladies have drawn the short straw. 

I wish all you all well in your treatment.

Julie 

[Whitfield]

Tolliebelle, I'm so sorry you are back here. How can a mammogram be clear in Jan and four months later you have cancer again! So unfair. We are here to support you.

What was your original do and treatment and did you get clear margins? Where are you being treated?

I'm 55 TN and had grade 3 invasive 31mm tumour and node involvement. Had chemo first which seemed to wipe the cancer out, 4 EC and 4 Taxol, then surgery for lump removal and am now on 20 rads.

Sending you love.

Pam x

[Tolliebelle]

Morning ladies I have posted on this thread a couple of years ago after having TN in both boobs. Am back now as just been dx with TN again in original breast. Now 3 times in . 4 years! Had lumpectomy chemo and rads first two times. Have had ct scan and bone scan last week and assuming they are clear am having bilateral mastectomy. Have been told that may need chemo again. Am just about getting my head around another diagnosis so quickly especially as had clear mammogram in January . 

[Dee1945]

Tracy's PET scan came back and only the known breast tumor showed. Very relieved.

[Dee1945]

Thank you Amanda10 I will check it out. We will be praying for you on your journey to health. Tracy's PET showed only the spot in the breast. Wonderful news.

[Dee1945]

Thank you Bel, I will check out Amazon for the book. I hope others who have many years clear would check back in too. I think it would be sooo helpful to those who are going through it now. As for me I am especially appreciative of you doing so.

[Amanda10]

Hi Pam sorry you are feeling low at the moment. Don't feel alone we are all going through this together same thing same feelings. I'm sure you have a lovely family and friends as well. Have a look on breast cancer.org there are alot of positive stories on there . Hope your rads go ok. Off to hospital at 10.30 for pre op assessment and still in bed , so got to dash. Pm me if it helps. Hope everyone else is doing ok 😘

[Whitfield]

Thanks Amanada - I'm feeling a bit alone but I'm sure we all get that. Sorry you have been unwell but the birthday seems to have helped your mood.

Siting here day after day fighting this thing is a hard call and I think other ailments and the risk of reoccurrence is in my mind a lot it's causing me to be blue. I'm having counselling but am thinking a percentage of suffers will get this again and I'm gonna probably be one of them. I'm know this is not a good way to think but am struggling with it all.

Pam x

[Amanda10]

Hi everyone
Had a tummy bug so not been on here for a few days.
Sorry you feeling a bit low Pam I was like that last week. Picked myself up a bit today as it was my daughters birthday and we had a lovely day. Not too long to go now Pam x
Hope everyone else doing ok 😘

[Whitfield]

Feeling a little down today but still trying to drink enough to water. 7 rads tomorrow.

Hope you are all well.

P x

[Whitfield]

Going for rad 6 in a few moments. Am trying to drink 2 litres of water per day to help skin. Many other advice out there?

Hope you are all doing well.

Pam x

[Amanda10]

Dee I was feeling quite low yesterday after my hospital visit. I went on breastcancer.org last night there is a section on triple negative ... Long term survivor examples . It give me a little boost .... Hope this helps xxx

[bel]

Hi Dee,
Thinking back, I now recall that at the time of my diagnosis I wasn't made aware that triple neg BC was any different from any other kind of BC. (I still don't really know quite why it's said to be or what the statistics are as maybe I preferred not to know.) But what I did seek out - through googling, through various books I bought (this was years ago so I'm afraid I can't remember any details now) was stories of people (especially younger women) who'd been clear of BC per se for many years (on which there is plenty of stuff), but my search was not focused on triple neg I'm afraid. Out of curiosity I just googled 'surviving triple negative breast cancer' and a book with that very title came up, so maybe that's worth you looking into (can get it on amazon). The other thing to remember is that most long term survivors are probably not going to be on sites like this anymore, as they are busy getting on with their lives! For years I didn't visit this site at all, and only came back on last year when I went through my BRCA gene testing, so I keep getting people's posts (which I'm very happy to keep answering, if it helps). Best of luck. Bel x

[Amanda10]

Morning everyone
Another lovely day. Had my appointment with surgeon yesterday, he said there are three tumours. I was originally told one. For this reason it has to be a Masectomy . He said I can have immediate reconstruction with implant but the rads may change its shape. I have decided to go with this just wondered if anyone else has had reconstruction with implants before having radiotherapy xx