I have been experiencing almost constant pelvic pain so was referred by my GP for blood tests. The only test to suggest a problem was the CA125 with a level of 40 units (above the normal threshold of 35 units). I was referred for an urgent ultrasound. No abnormalities were detected in my ovaries but it is possible that I have adenomyosis (which probably explains the pain). I was referred for a non urgent appointment with the gynaecologist. Whilst my concerns about having ovarian cancer were reduced I read the Airedale General Hospital research on CA125 levels in which approx 9% of the patients with raised CA125 were found to have other cancers. My GP suggested they couldn't test me for everything but I agreed to repeat the blood test in three months time.
The second CA125 test showed an increase to 44 units. I still haven't see the gynaecologist. As the result wasn't going in the right direction and I had mentioned a family history of bowel cancer, a different GP agreed to submit a referral for an urgent 2 week appointment and suggested that gynaecology may do a referral to another department thereafter to look at other possible causes. The 'urgent' gynaecology appointment has been arranged for just over a month's time and can't be brought forward because that is their earliest available urgent appointment. Now I have plenty of time to think of what questions to ask and to loose sleep. I suffer with painful bloating but had thought this was normal and just exacerbated by lockdown weight gain but now I am starting to worry that bowel cancer might be the cause.
Does anyone have any recommendations of questions to ask? Are there any additional tests I should request?
Additionally, my relatives who died with bowel cancer are my grandfather and uncle on my mother's side of the family. Would I only be considered at greater risk of bowel cancer if a closer relative had bowel cancer?
Hi and welcome to the Online Community. I am so sorry to read about your ongoing diagnosis but I do hope you will find the support available in the community helpful at this difficult and challenging time.
Talking with others who are walking the same path will help you navigate this unwanted journey and help you understand the questions you should be asking.
The New to Community is like the Community Reception area and as there are many cancer types and experiences so likewise the Community has many dedicated support groups to connect into and I see you have joined our Ovarian cancer group, this would be a good place to start as you can connect with other folks who may have been on the same pathway.
Navigating the community will depend on the device you are using. To go to the group just click on the green link above then introduce yourself by putting up a post by clicking on ‘New Thread’ or ‘New here, say hello’ then hit the box with the X on the top right (phones).
You could just copy and paste the text from this your first post and you can also join in with existing ‘Discussions’ by clicking on 'reply'.
It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section.
All the very best ((hugs))
