Secondary breast cancer

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My mum (62 now) had breast cancer back in 2013, she had mastectomy, fec chemo and radiotherapy and finished her treatment in 2014. The cancer was then estrogen positive and something along the lines of carcinoma (can't remember exactly)

Everything was amazing for 7 years and we never imagined it would come back!

In October 2021, my mum began experiencing stomach issues such as nausea, constipation, being sick, feeling full very quickly and stomach ache. Also sometimes rib pain, indigestion and heartburn.

Mum was referred for several tests (blood tests showed her ca125 levels were slightly high but only slightly). Ovarian scan was clear. Colonscopy showed lower part of bowel was OK, just slightly inflamed but biopsies came back clear. She had to have a ct scan of her abdomen as there was a stricture in her colon so they couldn't see everything in colonscopy. Ct scan showed swollen lymph nodes in left collar bone and all through out abdomen. Biopsy of collar bone node confirmed secondary breast cancer.

Whilst waiting for the appointment to discuss treatment, my mum ended up with a bowel blockage and had to have emergency surgery to have a stoma fitted. They found cancer in her intestines, on the outside of bowel and in her peritoneal and omentum area. She also has two small suspicious areas in her left lung.

We already know the cancer is unlikely to ever be actually cured and that the aim of the treatment is to control and shrink the cancer. I hate how they use the word palliative when you could actually have years left.

We found out that the cancer is the same cancer as before but it has mutated to lobular and is now estrogen negative and her2 negative. Does this mean its triple negative?

Mum started capecitabine on Thursday and is doing 2 weeks on, 1 week off and having 3 weekly blood tests and 6/8 weekly (not 100% sure yet) scans to see how well the capecitabine is working.

My mum seems so well in herself that it doesn't feel like she actually has cancer!

I'm just looking for anyone else who has any experience of cancer in the same areas (think in the stomach is quite unusual?), anyone who has experience of cancer changing type and anyone with experience of capecitabine.

Thank you xxx

Meiard over 3 years ago

Hi Galaxyripple,

sorry your mum is having such a rubbish time! Lobular cancer is notorious for coming back in unusual places as it tends to be fibrous rather than lumpy. It is also usually hormone positive so it is unfortunate that your mum has LBC and a negative hormone response. I hope her chemo keeps working. There is a drug trial for LBC at royal Marsden called ROLO which might be worth exploring.
I have been LBC from the beginning, and although I know have widespread mets, I am also hormone positive. There is a secondary bc group which focuses on this.

GreyCats over 3 years ago

Triple negative means also progestreron negative.

There is a secondary breast cancer forum here, where people will know more about all of this, and there will be more people there on the same medication too. You may also want to take a look at the family and friend forum for advice, should you need it.

Good that your mother seems well in herself, and I hope her treatment results in many more years of happiness for all of you.

kateandbiz over 3 years ago

I don't have the same cancer as your mum, but I do have experience of the cancer changing type and I have just finished 7 cycles of capecetabine, which is likely to be my last - oncologist is talking about putting me on something else.

My story is that after 4 years of being on Anastrozole it stopped working and I developed what I thought was sciatica, followed by pain in my hip/leg which meant it was too painful to walk. Eventually my chiropractor "ordered" me to get an MRI scan which showed that I had developed secondary cancer, in spine, hip and pelvis. Had radiotherapy which sorted out "sciatic" pain, and I do not now have pain from that. For 2 years I was treated with medication (Tamoxifen/letrozole/exemestane et al) which assumed the cancer was the same type as before, but each CT scan showed the cancer slowly spreading. After asking if another biopsy might help I had several (very painful ) biopsies which showed the cancer had changed type. Since then I've been on paclitaxel (ugh - slept most of the day on this) and then capecetabine. I've been better on this than other chemotherapy, less tired although I do rest a lot. Got red, intermittently painful feet with skin peeling (not bad enough to incapacitate me), and I'm really short of breath which at the moment is spoiling my attempts to increase the amount of time I can walk without having to sit down. CT showed no blood clot on lung, so I'm putting it down to Capecetabine side effect and anxiety.

Hope your mum has few side effects on Capecetabine and that those she does get are relatively mild.

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