I was with the gynae team due to post menopausal bleeding and a cyst being detected. A few days before the surgery to remove the ovaries & cyst I spent a night in A&E due to a sudden pain that was suspected to be gall stones. The CT scan was a shocker - showing “suspicious nodes” on my lungs, one run and peritioneum. The pain that took me to A&E subsided completely a few days later and otherwise I would have had absolutely no clue there was anything wrong. This was a month ago. I am increasingly aware of a “weight” in my lower abdomen which my cancer nurse suggests is a thickening of the omentum. So far the primary source remains unknown and a CT guided Lung Biopsy didn’t bring any info. Tomorrow I’m having an ultrasound guided biopsy of cells from the omentum. CT scans of my chest and abdomen don’t show the primary and I myself have no clue as to what the primary source is. Everything seems to be in good working order. I have a good BMI, enjoy good health (well normally!), exercise most days and have a vegetarian diet. I’ve found looking at this forum to be slightly comforting to read about the experience of others but there are many dark moments for me when I face the fact that three secondary cancers are more than likely pointing towards words and phrases like “Stage 4” and “terminal”. I’m scared that the longer it takes to find the primary and agree treatment the more likely it is that my feeling of wellness could fall of a cliff and I could become in need of some urgent intervention as the horrible disease continues to do its damage. Most especially omentum and peritoneal cancers freak me out as to what they are doing to the otherwise healthy tissues and organs. Fingers crossed I’ll have a treatment plan in place within the next 10 days or so. Though on the bright side my partner and I have our wedding booked for 30th May - if I can stay well till then it would be a great relief.
Hi Eileenm and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
It sounds like a very difficult time for you right now, not knowing where the primary is.
The online community is divided into different support groups and you could have a look through this list to see which one/s might be appropriate for you.
Once you've joined a group you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your tests to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
