In 2008 I had invasive ductal BC, ER-, Pgr- & HER2 +. Had 6 rounds chemo, lumpectomy, radiotherapy & Herceptin
December 2022 mammogram - clear. This July I found a lump, saw my GP same day, referred to local fabulous breast clinic. 14 Aug 23 confirmed new primary, in same breast but not a recurrence. This time it’s ER+, Pgr+ & HER2-. I had genetic testing done, no dodgy gene, I’m just unlucky.
Next Friday 22 Sept having mastectomy with immediate DIEP reconstruction at Queen Victoria Hospital, East Grinsted.
I’ve been lurking on this forum since found lump & don’t really have a question, but was just hoping for reassurance that it’ll be ok & wondered if you have been in my position what would be your best advice for how to cope with it all.
You will be well looked after at the Queen Victoria. We specialize in reconstruction surgery and the staff and breast care nurses are lovely. I only had lumpectomy and lymph node removal so had that done elsewhere but that would have been my first choice if reconstruction needed. I will try to look out for you if you need a little hand holding x
Julie thank you so much for your supportive kind words. I’ve felt very well looked after so far by QVH.
Just gutted that I’m here again, BC had intruded into my life yet again.
But I know I’m lucky as the CT showed it hadn’t spread.
Hi there Looby
I have had two primary breast cancers one on the right in 2020 which was triple positive then one on the left in 2022 that was triple negative. I have no gene mutations and nobody can explain why it happened. I am just a freak of nature. It takes a lot of pondering to get your head round why you have been singled out for such bad luck. I’m almost through the second round of treatment now and all is going well but I will never trust my body!
Good luck xx
Nancy
Hi Nancy
That must have been tough having to deal with BC twice so close together.
Freak if nature is definitely one way of looking at it, I’d much prefer to be boring & normal!
My head is spinning with all the information, although I do prefer to understand what’s happening & going to happen.
L x
I had chemo first with FEC then Docetaxel Trastuzamab and pertuzamab. After surgery and radiotherapy I had Herceptin to complete the year of treatment as well as anastrozole and Zolendronic acid. I got a complete pathological response to treatment
I was diagnosed in 2021 Oct, I had a lumpectomy and radiation, I took the hormone for about 10 months, I couldn’t live with the side effects.
My IDC was 6mm but when I had the surgery it was gone with the biopsy, they found DCIS in situ in the same place, oncologist said no treatment of Herceptin no benefit at my age, I was 77 at the time, I go for mammograms every six months, so far so good.
How large was your tumor? I’m baffled because of all the treatments, how does this happen!!
No one seems to have any answers, it’s tragic, after all this time and money they haven’t a clue where it’s coming from.
I’m so sorry you have to go through this all over again.
Try and stay positive, all will be well!
Trish
So pleased you have come to the forum, I can already see from the reply’s you have had, there are so many caring people around.
I have had breast cancer twice was quite a shock, but taking one day at a time you will be able to deal with it. it such bad luck for anybody who gets cancer but unfortunately when it pokes its ugly head up again it becomes a little unfair.
Wishing you well, with your treatment together with health and happiness going forward.
Hi Tili
I think you’ve hit the nail on the head, to get cancer a 2nd time does seem very unfair.
I’ve got lovely friends, family & work colleagues supporting me but as much as they are great none of them (bar 1) have been through breast cancer.
Knowing all the lovely people on this forum have & really do understand is great.
Thanks all & I promise to keep you posted x x
Hi Looby,
Am so sorry you are having to face this twice. I has it first in 2009 (Er+, PR+, HEr2+) and had a mastectomy, reconstruction using the back muscle, chemo, radio, herceptin and 10 years tamoxifen. I was diagnosed in the other breast last year with a new primary (Er+,Pr+, Her2-). I had chemo, mastectomy, same reconstruction, radio and have now started letrozole, abemaciclib and zolendronic acid. On the one hand it’s great I’ve now got matching breasts, but really I feel a bit hard done by. Having it twice is a bit difficult on the mind! You know you can get through it, because you already have, but that doesn’t make it easy. Sometimes I think knowing what comes next makes it harder. Tips are just to accept help, realise that having it twice doesn’t mean you will get it a third time, and realise that you need to be extra kind on yourself. I’m a year on now and things are so much better. Wishing you all the best as you navigate the murky waters of cancer this time around lots of love Lisa xx
Bearcat / Lisa so true what you said about knowing what comes next - especially during the early days just before & after diagnosis. Things like the hospital checked I had someone with me before they broke the bad news!
I had chemo last time, really tough, will have to wait until 3 weeks after op to find out if it’s appropriate this time, my glimmer of hope is the consultant said it’s unlikely to be needed.
Last time was a lumpectomy & all lymph nodes removed, this time mastectomy & recon so quite different beasts
I’m sure I’ll be fine, I’ll do as you say & take all offers of help & try not to get frustrated with things I can’t do.
Thanks for your sound advice
L x
Hi everyone, I am also on my second time around. First diagnosis in 2021, IDC grade 1 ER, PR + HER2 -. Had therapeutic mammoplasty and sentinel lymph node biospy, one of which had traces, then radiotherapy and tamoxifen.
Then at this year’s annual screening they found another IDC in other breast. Such a shock, you worry about recurrence and secondaries but I didn’t expect another primary just two years later!
It’s been a surprise to find how many others have had the same, despite not having the gene.
What is IDC? In sept 21 at 76 I had a Oe7/8 Pr8/8 HER neg
2 foci 12mm and 2 mm DCIS no lymph node involvement, and no radio therapy, as I missed the window of opportunity, as asked for 2nd opinion. Given Letrozole for 5 years, but side effects awful. Now trying Aromasin, twice a week |(my decision). To my mind it’s quality of life not quantity now! Mammo’s every year. I’m in Bucks.
ah, I know DCIS is ductal carcinoma insitu, but not really sure of the difference! I assume it means the latter hasn’t spread but the former may have done? Thanks for that!
Yes that’s right @tappin DCIS stays in the ducts and doesn’t spread but if left untreated it can convert into IDC which is invasive and can spread round the body. That’s why they take it all out.
@bearcat and @Lisa65 you are so right about the unfairness of two cancers. I think of it as a roomful of people with the odds of two cancers and I got both of them! Like when one person cleans up with raffle prizes but not such fun. I honestly don’t know what I am frightened of next. There is no point trying to guess what will happen. Que sera sera!
Hi lovelies
I had my surgery Friday (2 days ago) & all went very well. I’ve been really well looked after by docs & nurses. Was in surgery nearly 9 hours!
Not had great sleep since but am moving around independently now which is better. My boob doesn’t hurt but tummy fairly uncomfortable, especially when moving in bed & getting out takes some deep breaths!
Docs said I could hopefully go home today which will be great if can.
Please ask questions if you have any
Laura (ps my hubby calls me Looby sometimes hence my username!)
22 years ago I had estrogen positive breast cancer, no lymph node involvement had lumpectomy 4 treatments radiation therapy 6 weeks and 5 years on Arimedx. 20 years later clean mammogram but found a hard lymph node under clavicle. Told it was nothing. I still had it removed. Diagnosis breast cancer not in breast but in lymph nodes, liver and bones. Triple negative. I am on my 3rd line of chemo. Otherwise very healthy!
Not sure if you are still on this site, but was wondering how you are doing now that some time has passed? I was just told I have IDC +± again after 13 years.
