Hello all in the TN thread. I’m recently diagnosed grade 3 multifocal Idc with lymphovascular invasion but 4 clear nodes. Found out yesterday I am er and pr neg. told I am likely tnbc or her2 but find out in 2 weeks. I’m only 43 and have a 12 year old boy and I’m petrified after reading about tnbc. Absolutely beside myself. I had my surgery one month ago and not even seeing the onc until 11th April - is this an ok timeframe ?? Means I might not start chemo for another 6 weeks - is 10 weeks ok with a high grade aggressive cancer. I’ve had backache since Jan so fearing the worst - hope someone can help me out here and give me some positive news. I’ve read things have been better with chemo for tnbc is this true - I’ve read a lot of women on here that haven’t made it. Thanks in advance x
Hi lilneenz. So sorry you’ve had to join us here but dont despair. Thats easier said than done I know. 10 weeks does seem a long wait. I started chemo 7 weeks after mastectomy. After chemo i had lymph nodes cleared followed by rads. I finished active treatment last july and went back to work in sept 15. I was in a state like you but as weeks went on i stopped the googling and only read the positive stuff. It does get easier and you will start to feel more settled. Speak to your breast nurse regarding your concerns as thats what she is there for. Remember also there are lots of long term tnbc survivors out there and you and I will be amongst. Try to read about the benefits of turmeric and supps like vit D3. Im in a trial at the moment for aspirin as they think it kills cancer stem cells. Numerous studies have found it works in mice and now its being tested on us. Keep your chin up. Xxx
Hi again lilneenz forgot to say if you post on the any triple neg survivors out there thread you will get great support and just ask anything you want to know. Xxx
Hi lilneenz, I also think 10 weeks seems a long time to wait.
I can only relay my experience - I was diagnosed July with TN idc, mastectomy on 7th Aug, cancer found in sentinel node so back to theatre for axillary clearance on 13th Aug. 1st dose of chemo 10th Sept.
That was in 2013, I’ve had a checkup with consultant today & pleased to report ‘no evidence of disease’ ?
It certainly wouldn’t hurt for you to question the timeframe with your BCN
Best of luck x
Hi Nikki I’ve tried asking about timeframes and they just keep telling me it’s waiting lists !! Unbelievable. I’m trying to get seen at elsewhere and waiting to hear. It’s just so scary waiting and knowing it’s grade 3 and could be multiplying etc. I had lymphovascular invasion on my path report and that frightens me. But it’s positive to see ladies on her a few years out !! I’ve been sitting here thinking that this is it !!! X
Hi sorry to hear about your diagnosis. I’m 44 Mum of 3 and diagnosed initially on Dec 20th, with Grade 3 invasive ductal carcinoma with metastases in lymphs (main tumour in left breast plus 9 smaller satellite ones/nodes) . It seems like forever when you’re waiting. I’ve started the chemo first but was 5 weeks from diagnosis to starting chemo. Felt like forever but they were constantly doing scans biopsies etc etc during that time. I think maybe if you’ve had your surgery already maybe it’s ok? Do you have a BCN who you could ask? It’s mad isn’t it how hospitals do things so differently? I’m sure you’re consultants know what they’re doing. It’s so scary isn’t it? Big (((hugs))) Vicki
Great news about your check up ?? I look forward to that day ??
Thank you Vicky I’ve only just seen your post - I’ve now been asked to have a ct and bone scan dud you have these ?
Nina x
Hi Nina,
Yes I had CT of body, breast MRI and bone (MUGA) scan. This is after the initial ultrasound and mammogram.
I had another breast MRI after 2 chemos and will have another after the next which is round 4. They need a baseline I think which all these give before starting more treatment so they have something to compare to.
Bone and CT scans are straightforward and painless except you often have to have a cannula in for a contrast die before or during scan. HTH
Vicki xx
Hi girls - just thought I’d update - I switched hospitals - I’m very pleased with new team - sent referral Monday and was accepted, got seen Thursday - scans all booked next Tuesday, seeing consultant and chemo team Thursday, then chemo starts Monday 10th April !!! So it will be approx 6 1/2 weeks after op altogether so much better and all before I would have even had the first appt with local onc !! X
Thank you !!! Yes it’s better news - I’m just filled with scanxiety now - it never ends - yes have been out in the sunshine today and trying my hardest to relax xxx enjoy the rest of your weekend x
Yes I’m startImg to enjoy my new garden, I’ve been feeling really disconnected to my new home as we moved the day before diagnosis. But I’m slowly starting to appreciate it and know I am lucky to have such a lovely little haven to rest in during chemo. Good luck with going back to work xxxxx