My partner and I attended a consultant where they told us my partner had a gastric mass, a week later we'd received a review letter of what happened in the meeting and it did say histology was to be reviewed, laporoscopy planned.
He'd had a ct scan and endoscopy previously. At this stage they'd told us it was T2N1M0. Consultant told my partner chemo then surgery then chemo and said was curable. He needed a staging laporoscopy which was done three weeks later with another consultation with the surgeon who went through everything why they needed the laporoscopy etc....
My partner got a phone all two weeks later from the macmillan nurse that said they'd had the meeting that morning and christies were being contacted for chemo no mention of increase in stage nothing.
This weekend we received a copy of the letter that had been sent to christies and were just in disbelief. It says that he was found to have linitus plastica at ct scan. Further down letter microspically described at T4a. There was insufficient sampling from biopsies...
The consensus was to treat for linitus plasticus and referred for neoadjuvant chemotherapy prior to contemplating surgery.
I've googled the linitus plastica and it is described as rare and prognosis not good.
I rang macmillan nurse yesterday who I have to say didnt explain much ... and I'd explained wed not received any results as such from laporoscopy just this letter that was too medical termed for us to understand. I ended up ringing the specialist nurse we spoke to at his preop and consultation before laporoscopy and was brilliant explained a bit better than the nurse but apologised we'd got that letter and said we should have a consultation about the results from.the laporoscopy. I can't help but think we should have had an appt and we've slipped through and we've found out by this letter that it is worse than initially told. She's calling me today once she's sorted an appt for us. I am absolutely petrified and struggling to hold it together but have to for my partner. Surely at the consultation they should have told us. So sorry for this long post my world just seems to be crumbling around me and there's nothing in my power to stop it.....
Thankyou
Hi Lj76 and welcome to our community though so sorry to hear about your partner.
Although any cancer diagnosis is a massive shock a rare cancer can be a little more challenging in that treatment options might be less well understood and survival statistics are next to useless. My wife has Leiomyosarcoma and we were told that it did not often respond well to chemotherapy - but in her case it did - her cancer is stable and we have been living with cancer for 6 years now.
If we look at Looking after someone with cancer it is very easy to think - yes just like me. I did a living with less stress course that was really helpful in keeping me grounded in the here and now.
<<hugs>>
Steve
