Thank you. I liked the genetic counsellor and am hopeful they will be supportive - I'd just like to have an answer now but then I'm being impatient!
Jane, I've definitely found with a rare genetic condition there is not the straight forward pathway in place (like with breast cancer) and I've had to fight for someone to take an overview of things. When I got my diagnosis the genetic counsellor said she would be a point of contact if things weren't happening as they should but then I saw no evidence of any follow through on that.
Fingers crossed your results are fine or if they do show anything new then there is proper support in place x
thanks everyone, its incredibly touching to have people I've never met rooting for me - what a wonderful forum this is!
Jane - I waited about 3 months for genetic results although the consultant had said she thought it highly likely to be PJS because of various aspects (eg type of polyp) that had already been found. The bit I found difficult was that, after the diagnosis, no-one then seemed to be overseeing my care / surveillance, to the point where I put in a complaint (about that and other aspects) and I now have an appointment with a consultant this week - fingers crossed I'll feel like someone is actually looking after me from then on!
Thanks again to all you wonderful women for your support and good wishes 🙂 x
Hi lizred, just saw your post and wanted to say congratulations. I had an abnormal endometrial scan and biopsies a few months ago, and completely fell apart, so I really feel for you. Knowing you have a raised risk makes it even harder to wait for results, why can't hospitals understand? I found out that my biopsy results had been sent to my GP nearly three weeks before anyone sent them to me.
But that is fantastic news, I am really happy for you, hugs.
Quick update as its always good to have some positive news - I finally heard from the hospital re my results and all the biopsies came back fine so I'm back on the regular monitoring rather than needing any other tests or procedures for now. YIppee 🙂
Hi Janey, just had a quick google re Cowdens, lots of similarities with PJS so I'm guessing you may share some of the frustrations and fears about having something thats unfamiliar to most people. Not got the energy to write much now (just having a quick cuppa before bed) but will definitely stay in touch and swap info etc where helpful.
thanks for your replies and support xx
Feel really between support - its not breast cancer so not sure if appropriate for this forum; friends trying to be helpful saying things like 'oh its probably just to be on the safe side, I'm sure it will be fine' (are you? How?!), helplines only open through the day (and I'm trying to go into work etc to keep my mind off things). When I rang the GI consultant's sec to ask for an idea of how quickly I might be seen when biopsies are sent as a priority, she essentially said oh he'll write to you with the results or see you in outpatients at some point but he has 100's of patients. I know she is just giving a stock answer, and it doesn't help that PJS is pretty rare so people don't generally understand it but I feel like I'm screaming inside and no-one can hear me.
So grateful this forum is here and there's always someone out there who knows how it feels xx
Hi All, people who have been posting for a while may know I had BC (DCIS) last year dealt with through surgery - right mx and left small lump removed, thankfully now on yearly monitoring. However, I was also diagnosed with PJS (genetic condition which increases risk of a range of cancers) - I had a short hospital admission in Jan with digestive problems and a follow up gastroscopy last Sat where they found a new (as far as I know) small lump in my throat, biopsies x3 sent off as a priority and referral to MDT to discuss made without even waiting for the results.
As you can imagine I'm really anxious (ok terrified) and finding it difficult to carry on being normal (work, family etc) while all the time my head is going around what if what if. I know pretty much everyone here as been in that place so just posting for a bit of moral support x