Worried

hi  and a warm welcome to our spot in the Online Community. You'll find a lovely group of supportive ladies here and one of us should be able to answer your questions.

Hopefully your Ultrasound will show up something and they'll get more tests done.

I've attached a link to some details about Lynch syndrome for you to take a look at, just click on the link. You can also type Lynch Syndrome into the search bar at the top of the page to find out more details.

Come back if you've got any questions, someone should be able to help.

Sending welcoming hugs, Barb xx

Forgot to mention it’s always helpful to others if you write a little something (or a lot) about yourself and how you came to find yourself here. Why not take a few moments to update your profile. It's always helpful for us to read if we want to ask you questions and you also won't end up repeating yourself. You can enter it into your profile (click on your username and select “Profile”) . You can amend or update it at any time. If you’re not sure what to write, just click on my username.

If you want to ask any of us any questions please come back and do so. There's always someone around and we can offer a shoulder to cry on, a hand to hold or listen to a rant, we’re here for you.

It might also be a good idea to download this booklet Understanding Womb (Endometrial) Cancer. I found it invaluable on my journey. 

Click on the link I’ve created to find out more information covering diagnosis and treatments for Womb cancer.

You might also find this link to what to take in my overnight bag useful for if/when you have surgery.

You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

There is also an Ask an Expert section, but you should allow two to three working days for replies from our expert team.

Hugs, Barb xx 

Hi Cheekydeeky, welcome! Are you absolutely sure about the NHS wait times in your area? In most parts of the UK, wait times where cancer is a possibility are typically not long at all - and if you do require further tests, surgery, treatment or testing it might be more beneficial to stay within the NHS as everything will be properly documented and linked/synchronised. I saw my GP in Sep 2021, was diagnosed in November, and had a hysterectomy in January. I had genetic counselling and preliminary testing for Lynch syndrome but that was negative. I’ve also had a BRCA test and am awaiting the result. I did consider going private early on but my CNS nurse advised me against it.

Hi Cheekydeeky,

I had a hysterectomy at the end of May last year. The results showed that I may have Lynch Syndrome as it came back with loss of MSH6 expression in my tumour (sorry for the technical term). It is a genetic inherited condition which you have a 50/50 chance of inheriting if your mother or father have the gene.

I was seen at a specialist clinic  in March this year and I had to give a history of my close relatives. This was Mum, Dad, Brothers and Sisters, Aunts and Uncles and Grandparents. As there is a strong family history of Cancer in my family they suggested a blood test and I am awaiting the results which are due any time soon. The cancers they were interested in were Pancreatic, Bowel and Stomach. I also had an uncle who passed with lung cancer but this was not relevant to testing for Lynch Syndrome. I was also told that if they do not find Lynch Syndrome they may try to look into other reasons for me having had cancer. Not sure what they will look at but have to wait for the results from this test first.

The lovely ladies on this forum are so supportive and will try to answer any questions you may have. It is impossible not to worry about what is happening with you but there is support via phone or online.  I found talking to people on this forum helped me a lot.

Maybe try asking the consultant at your appointment and see if he can give you any more information. I wish you all the very best with your tests.  Take Care.  xx

Oh thank you so much for the link Barb! I didn’t even think to search on this site about it. 
i appreciate your reply and will trying about doing the profile info.

i guess you queries though are based on more personal experiences than leaflets - I mean my mum having lung cancer at 45 is certainly not the norm At 45, so it’s looking for similarities and for what I’m experiencing, in the same vein. 

thanks again xx 

Thanks for your reply. I waited a month for my gynae referral appt and no reply so called them and was told it was 17 week wait (I’m in Bucks), I guess I’m not classed as high enough priority from the gp perspective (perhaps 43 is youngish against guidelines?)  but I feel worried nonetheless. I’m really glad you were seen so quickly, that speed is amazing and I hope you are doing well?  May I ask, did they test you because of family history or did you ask for it? 
Thanks x x

Thanks for your reply, sounds like you have lots of investigations going on to you help you so I hope all is well with your results. Do you know if I can ask for the test you had or does it have to be offered? 
i just have such a feeling of dread and it’s hard to not put aside my mum and dads cancer and look at it just for what this is, unknown at this point.
i have a long list of info and questions for my consultant!
Thanks for your reply Xx

Thanks ladies for all your replies, it does help with not feeling so lost. I do wonder though if you wouldn’t if you could share your initial symptoms or what made you get checked out in the first place? Anything at all. Thanks xx 

I had my test because my of being diagnosed with cancer after originally being told I had fibroids. Luckily I opted to have a hysterectomy anyway because of problems I thought were to do with menopause.  (I am 57, so was told that I was past that!) I had  bleeding and spotting almost every day for 13 months before deciding to see my GP and in the last couple of months before seeing them a pink discharge intermittently.

My cancer was Grade1 Stage 1a so no further treatment needed. My trust (I am in Hampshire) automatically tested me when I had my op.  I did not know this until I was called back to be told my results. They had only been testing for 9 months before my result was found for possible Lynch syndrome and in saying that I was the 1st person to have come back with a possible positive result.

I think you can talk to your GP about genetic testing but I am not sure how it works. Cancer Research UK have 'Genetic testing for cancer risk' info on their website which explains things better than I can. I hope this gives you some useful information. xx

Hi Cheekydeeky, I had a hysterectomy due to being diagnosed with endometrial cancer probable grade 1 stage 1a, and my   Trust (Hampshire) automatically did Lynch pre-testing as part of the histology. The speed of being seen was because my GP requested the two week pathway.