I want to help with research so that others don’t have to experience anything like I have done in the last 14 years.

I was first diagnosed at 37 with stage 2 grade 3 invasive ductal carcinoma breast cancer in May 2010, then at the age of 43 in November 2016, I was diagnosed with stage 3c n2 adenocarcinoma of the oesophago-gastric junction. Most recently, in September 2019 shortly after renewing our vows in vegas with family and friends I was diagnosed with recurrent gastric cancer.

These were not related and are separate cancers.

When I found out I had breast cancer, my symptoms included finding a lump, but I had also been sweating at night. With my first diagnosis, I was so young, I automatically thought I was going to die at 37 years old and I was terrified I was going to leave my husband and 3 children on their own. Thankfully that didn’t happen, thanks to the treatment I received and the research being done on breast cancer.

With the gastric cancer, I was getting heart burn and a constant pain in the centre of my chest. I initially thought it was my acid reflux which I’d had from the age of 14. I also experienced pain in my side after eating and I was losing weight as I found it easier to just not to eat at all.

Barbara's Rare Cancer Story

I’d been going to the GP for 6 months but they said it was in my head due to me having breast cancer, and it was common as I’d just gone over my five year mark. Eventually one Doctor listened when I said food was getting stuck and an emergency endoscopy was arranged and this is when they found the tumour blocking where the oesophagus meets the stomach.

I was a lot more focused the second time around, but definitely thought my life was over as this is a very aggressive disease with a high mortality rate. I was given a 25% chance of survival. Apparently with having acid reflux I should have been getting regular endoscopies but I had never been offered one, this may have contributed to the cancer, but I don’t know for sure.

For my breast cancer I was treated with a lumpectomy, lymph node removal, chemotherapy, radiotherapy and herceptin (targeted therapy).

For my gastric cancer I had a removal of my whole stomach, the bottom third of oesophagus, spleen and lymph nodes removed – a 9 hour very complex operation with a very high chance of fatality. This was done at the Royal Victoria Infirmary hospital Newcastle and has one of the best success rates in the whole of the UK, Europe and North America. I also had pre op chemotherapy & post op chemotherapy and internal radiotherapy.

For the recurrence I have chemo and external radiotherapy. To live with stomach cancer is a challenge and I have lost 7 stone.

It scares me, as there doesn’t seem to be a lot of awareness or research around gastric cancer. I had never come across anyone with gastric cancer and when I did research, the end result was never positive.

I heard about RareCan through Facebook. I decided to join to try and raise awareness of what I had been through and be available if anyone wants to talk as that was the struggle I had. There were no support groups for gastric or oesophagus patients that I could find.

I like the fact that RareCan is listening to all people with all types of rare cancer and creating awareness of them, but more importantly, they are accelerating research and spending time finding people with the same rare cancers and matching them to trial opportunities.

I am really interested in being involved in focus groups as well as support groups because I want to help with research so that there is hope and somewhere to go for anyone else who finds themselves in a similar situation for me.

Ultimately, I would like to help eliminate these rare cancers, or at the very least, make them more treatable and survivable.