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
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
Hi gilwernbowls thank u been out of my mind with worry and I pray u stay well forever thank u so much
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.
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!
Hi a bit worried has anyone just had fec75 for tnbc
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.
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.
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 .
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.