Community

We run a Facebook (Private) support group for all those affected by Lynch Syndrome. I have inherited one of the predisposition Genes (MSH2) and know how hard it can be to find information and navigate the medical system. We are also aware that the current system is far from perfect and can be confusing. When you are trying to understand your inheritance or potential inheritance and navigate the medical system we believe speaking to others in the same boat who really understand can make all the difference . We are a caring group of people there to listen and offer support . Anyone can find us by following the link below or entering Lynch Syndrome Ireland you will be directed to our open Facebook page. https://www.facebook.com/lynchsyndromeirl/

Hi 👋🏻 My dad finished his treatment 3 days ago and is in agony with trying to go to the toilet. He feels pressure to go (poo)but it’s like he can’t. He’s in movicol, microlax etc. He is wearing a pad as there are bouts of very watery stools with blood. He’s very distressed. Is this normal? Unfortunately gp or nurse in the hospital he attends wasn’t much help 😔

Hi I’m just wondering how long you be waiting to meet with your oncologist? I had my surgery (lumpectomy) on 28th July and my follow up appointment on the 12th August and was told I’d be meeting with my oncologist to discuss starting chemotherapy but i haven’t received any appointments yet. I’m just eager to get started.

Hello...first post! My wife is in the middle of phase 1 chemo for Leukaemia. She is six weeks into the treatment. I was doing well initially, occupying myself with housework etc., But last weekend, I hit a wall......it just crept up on me. I went from sleeping well to having a lot of difficulty.... I've tried sleeping tablets or relaxants, but no joy so far.... Plenty of pain/stomach aches etc., and feeling very anxious... Just wondering if anyone else here has had these symptoms, and any suggestions to break this cycle.... Many thanks for any help that can be offered Andy

Hello, This is my first time posting. I had a biopsy done just over 3 weeks ago and the consultants secretary has asked me to come in this Friday for results. I wasn't advised to bring a friend with me for results. Is this generally a positive sign or could I potentially still receive bad news? This whole journey for me started in early June. The waiting for appointments, biopsy, results etc has been incredibly stressful. Any guidance you can give would be greatly appreciated. Thank you.

Hello I finished treatment for Breast Cancer last April 2021. I had Chemotherapy and Radiation. I still have a lot of tiredness. I would really appreciate it if anybody who has gone through the same thing could give me advise about this.

Hi I recently had a D&C and polypectomy due to symptoms which coincided with a positive hpv and abnormal (low grade) smear. Turns out the results of the D&C were not good and doc was also surprised. It’s Adenocarcinoma and after that I haven’t a clue. I’m just scared to be honest. I don’t know what’s in my body. Where it is or how far it’s spread. Google has me written off and i don’t know how I’ll cope between now and my appointment in the mater which I don’t have yet. I only found this out today. Im trying to stay sane and away from Google. If you could point me in the direction of what to do I would be so grateful Thanks

Hi, I have received an appointment to go for a prostate biopsy. Any advice on the procedure or what to expect? Feeling very anxious about it.

Had radiotherapy last April had problems breathing last week sent to A&e we’re I was diagnosed with pulmonary fibrosis caused by radiotherapy.. I am very distressed as information doesn’t seem to be available and what I’m reading on internet is awful

Hi, I'm 95% vegan and am trying to increase my protein. I started putting tofu into soup. I take 1mg of Amidex tablet every day. Is it ok to eat tofu when taking this tablet? Is there any food I should avoid? Many thanks, Elaine