Any triple negative survivors out there?

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701

Hi, I am 33 and last week was diagnosed with grade 3 triple negative breast cancer. I have my surgery booked in for April with chemo after and have my fertility app next week. My consultant didn’t seem concerned about being triple negative but after reading up about it I am more concerned as I didn’t realise that it was rare. Does chemo work as well on this type of cancer as it seems like they don’t know as much about it? Is the only treatment difference that they don’t offer hormone therapy?

Really new to this and all happening very quickly so was just after some guidance and advice from people who have experienced this beforemail

Thanks x

702

change.org/p/nhs-england-and-nice-don-t-delay-funding-for-vital-drugs-and-treatments?recruiter=697096928&utm_source=share_petition&utm_medium=copylink

 

Its about NICE holing back approval for expensive drugs which some of us may need at some point.

 

please circulate to as many people you know,  we need some big numbers on this. 

 

pam 

703

I’ve signed it too, Pam. Glad your lump is just a cyst. X

704

Petition sign

705

Just signed it.

706

I’ve just signed the petition too.  I am now 3 years post treatment and just had a clear mammogram ? Did have a scare in the autumn but the lump was a fat necrosis from the lipomodelling.  I am trying to get on with life but do read the posts and keep up with news.  Love to all

707

Hello Williams500, I too am TN but older than you. TN is nearly always stage 3, or more, because it is considered agressive. I found my lump & had lumpectomy then chemo 4 x EC 4 x T. After about 2 sessions I found more lumps with inconclusive biopsy results so they decided to continue to end of chemo before removing them. Once out they confirmed they were cancerous so had to be operated again for clear margins. Luckily nodes were clear. Oncologist could not explain to me how they grew during chemo.
After doing a lot of research on Internet I decided not to do radiation. I have changed my diet to help my body recover from the chemo and strengthen my immune system. There is a lot of info out there on how you can help your body.
Don’t worry as it doesn’t help ( easier said than done I know) and you will always have our support here.
Marina

708

Hi all. This is the first time on this site as recently diagnosed with TNBC. As far as they can tell it hasn’t spread which is good and I had my first lot of FEC chemo this morning. I am hoping as others have said on here that the tumour will respond well to the treatment. I couldn’t believe it when I found the lump as I have only just finished recovering from bowel cancer that I was diagnosed with 3 years ago. They don’t think it is connected just bad luck or bad genes. I am having a telephone appointment with a genetics counsellor on Friday. Feeling ok at the moment just a bit woozy but will have to see how I go. I have come home with lots of different tablets and injections so will try and remember to take them all at the right time! It’s good to hear that others have come through this and although we may have a difficult road ahead there are better times to come. Hugs to all out there who are embarking on this journey at the same time as me. Keep smiling. Hugs x

709

Are there any long term survivors here xx

710

Yes! 15 years & no recurrences or new b c. Only reason I came back on this site was cos I found out I was a brca carrier so recently had preventative surgery. I imagine most long term survivors are no longer on this site & just getting on with their lives! X

711

Wow 15 years how positive !! How old were you on diagnosis and did you have nodes affected etc. I’m 43 and just waiting to hear if I am triple neg or her2. I have grade 3 multifocal invasvive (2cm) no nodes xx

712

Hi,

Looking for something positive. Diagnosed in December with TNBC. Tumour was about 3.5cms. Considered grade 2 and not in lymph glands. So they did chemo. First chemo was 31st Jan. Had 3 further cycles (all of AC). Recent ultrasound has shown little/no response to chemo and now in lymph glands. So stopping chemo and going to surgery. Have to wait a while for surgery, as they say the wound won’t heal due to chemo. So a further wait, while it spreads. Trying to be positive, but difficult when just waiting. Anyone had similar experience?

713

Hi Lilneez,
I was 31, & mine was grade 3 with no nodes but with vascular invasion (i.e. had started to move towards nodes). I was triple neg.
good luck! Xx

714

Hi Orange, I’ve never understood how they say cancer takes 10 yrs to develop and then we see it spread so quickly once there is a tumour. In my case I had lumpectomy & during chemo 3 more lumps appeared which turned out to me cancer. However no nodes affected. In June it will be 2 years since finding cancer and apart from chemo brain and achey joints I’m well.
I do think all cases are individual but on this site we can support each other and be encouraged by positive stories like Bels. Thanks for sharing once again Bel.
M xxx

715

Wow bel that’s so positive to hear, sounds like my diagnosis with vascular invasion. Mines grade 3 no nodes but multifocal little tumors adding up to 2cm hiding in DCIS.youve really helped me today xx have you changed your diet and taken supplements etc xx

716

Hi Orange. Sorry to hear that. How long do they want you to wait after chemo before you can have op? Hang on in there. Hugs x

717

Thanks. Have to wait 3 to 4 weeks for surgery, as due to chemo, they’re concerned that wound won’t heal.

718

Thanks Pam. That sounds hopeful. Think I was having a down day when I wrote x

719

Hi sorry to hear you’ve been suffering with the nausea I do too (had 3 chemos now) ondansetron hasn’t been effective for me but Cyclizine helps and if desperate Levomapromazine.
The longer you get from having the chemo hopefully the better you’ll feel ??
All the best Vicki
(TNBC diagnosed Dec. 2016)

720

Ok great will do ??