Can we have a triple negative discussion thread on forum?

Annie,nothing like a diagnosis of BC to put us in touch with our own mortality! I’ve always managed to put myself in the ‘survivor’ percentage.Even with your10% chance- thats still a lot of lucky survivors and you’ve as much chance as any of them!.None of us really know who will be alive in 5 years time.I’ve always just plodded on as usual.Started renovating a house while on radiotheraphy,sold it the following year and am now in the middle of createing a 2 acre garden from scratch.I’m nearly 50 and hope to be around long enough to appreciate it!!

I think a forum for the triple neg ladies would be great. I was the one who asked for the forum waiting for results and it was granted. Its a well used forum.
We have threads on hormone treatment for us hormone pos ladies so why not a triple neg one.

Rx

Well done, Josyemarie! We have been tempted to move house, but have decided to put it off for a bit, but that garden thing sounds wonderful. I am sure you were enjoying working in it this weekend, with fab weather. My poor family are having to spend most of their time practising for Ribbon Walk next Saturday. I started it, then got lumbered with back problem, so I am now Team Motivator!! I think they hate me… I am always coming up with mad ideas, and not always so good at carrying them through, but it’s good fun, and keeps my brain occupied!

It is good to hear that your ides was taken up, R, so I look forward to our own thread soon!

Hello all

It’s been quite some time since I have used the forum and came on again this morning looking for other triple negs. I finished my treatment last October and life is getting back to some form of normal again now, but increasingly I have been feeling isolated as I have not met any other triple negs.

I am at the start of a huge life change. Selling my house (well, trying) I have lived in for 21 years, which in turn is forcing the kids (23 and 19) to be independant, and move in with my partner some 150 miles away. I keep thinking should I do this as I could die sooner rather than later, which would leave them with the house.

Prognosis 50/50 - mostly my cup is half full, but occassionally half empty (like today).

Have been reading about the TNT trial, so its good to know there are new treatments coming along for us. I think it was there that said that about 15% of breast cancers are triple neg.

Anyway, it’s reassuring to find this post

Thank you,
Anita

Hi Anita

I have also moved since triple negative diagnosis. Diagnosed in Oct 2003, moved out of London in July 2006, with a poor prognosis. Sure I got regional recurrence 9 months later but don’t regret the move.

best wishes

Jane

Hi fellow 3Ns,
It is good to talk to people in the same position. I do go on an American site, but its nice to be talking to people closer to home - I am in Dublin.
My diagnosis in Dec 2007 was, age 45, 2.6cm, stage 2a, no nodes (SNB x 2 nodes clear). Lumpectomy followed by 4 x TC, now almost finished 25 rads. It would be interesting to know what treatments other 3Ns got ? Is there any common trend?
As my mother had BC 20 years ago (aged 54) and was E neg (they didnt test for the others then) I think there is a good chance it is hereditary and I am going to get tested. If its positive I will have my ovaries removed. Its also important to my 15 year old daughter, as her paternal granny also died of BC.
The good news is that my mother is alive and well, though she only had radiotherapy and had a 4cm lump, she never had a recurrence and is now 75.
best wishes
Katie

Hi Katie

I was diagnosed aged 49 in Jan 2007, 35mm Grade 3 invasive ductal 6/11 nodes affected. Had mastectomy, LD recon, 3 x FEC, 3 x Taxotere, 30 rads. No breast cancer known in the family.

I had a hysterectomy in 2004, removing one ovary, and had just started getting menopausal symptoms before diagnosis.

I’m now 51 and feel quite well and back at work. I feel a bit limited physically with my recon boob - got to have corrective surgery and implant changed at the end of the year as rads has made my implant harden.

Take care
Anita

Hi Katie and Anita,
Good to hear from you. Like you I prefer this site to the American ones, but Thanks Jane for giving details of the other sites. It was interesting to visit them. Hopefully we can continue this dicussion tread on BCC site and maybe eventually get our own discussion site!!
I had the same treatment as you guys, FEC and Tax, followed by 25 rads. As I mentioned earlier, my mum died of BC five years ago, but it appears that our cancers were not related, just bad luck, but it is difficult for my girls to grasp this lottery, and understandably they are quite concerned for their own health, as well as being passionately worried about mine. It is difficult for them with young babies, and lots of hormones flying around, so I prefer to share most morbid thoughts with the two men in my life, husband and son, who are’nt quite so prone to floods of tears!!
Not that tears aren’t a good thing, but you know what I mean. If I have down times I hate to worry my girls with unfounded niggles, but sometimes you have to share those fears with someone.
Having severe problems with back pain, due to vertebrae degeneration, and on loads of morphine, but no real control of pain. I never had problems with my bones until all this. I don’t think it is just natural wear and tear, but I am sure that it is linked to Taxotere. Anyone else feel the same? Apart from the cancer, I was fit as a fiddle before the treament, with no hint of osteoporosis, arthritis etc, but now I am unable to sit, or walk without pain. My bike is gathering dust, and I was supposed to be doing the Ribbon Walk this Saturday. I’m gutted!

Taxotere certainly screwed up my fitness levels,probably permanently but I’m glad I had it.I had 4xFEC and 4xTaxotere followed by 15rads.3N 2cm Grade2 no node involvement WLE Oct 2006 finised rads a year ago today[anniversary].So many aches and pains etc but still hopeful,worst bit is peripheral neuropathy.Good luck to all 3Ns.bc in my family but +++ except for only long term survivor who was[is]3N and going strong after 6+years.others,an aunt and a cousin,sadly died.

I was pretty fit until the Taxol(had 4xFEC,4xTaxol)but for about 2yrs afterwards I had no end of joint problems and aches and pains.They did go eventually and I’m now very much my old self apart from my poor old feet- arthritis and peripheral neuropathy.I tend to get around it by wearing bigger shoes!

FWIW, there is currently an “ask the experts” specifically on triple negative on the American breastcancer.org site

Lyn

hi everyone - I am also a member of this club! - love FB xx