Scared and confused - Borderline ovarian cyst now colon cancer

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Back in November I went to A&E with rectal bleeding, it was quite a large amount so I was naturally concerned. I was sent home as the doctor wasn’t concerned as I’d had no pain and he put it down to piles but to go back if it happened again, which it hasn’t. 
my go followed this up in January and wanted a face to face but as I’d had no reoccurrence and no pain she wasn’t concerned either. A few days later I started with the most horrendous pains across my bellybutton going towards my right hip. I was sent for a Ct scan, bloods and stool sample. Bloods and stool only showed slightly elevated inflammation markers but the Ct showed a 10cm mass on my ovary. I was shocked to say the least! I’d had no pain or that area prior. 
I was put on the 2ww but didn’t make it that far, I had to take myself off to A&E a few days later as the pain was becoming unbearable. I was put on the emergency surgery list for it to be taken out asap. My ca-125 levels were at 68 and my surgeon wasn’t overly concerned by that, she obviously couldn’t rule out cancer but said they could be elevated due to the inflammation caused by the mass. I had an internal scan and mri, both were inconclusive as to what it was but they were still saying they weren’t overly worried. I had my op 3 days later and I was told the mass had ruptured when they were taking it out and it had also adhered itself to my bowel but they managed to peel it away. I was home within 3 days and feeling a million times better than I had been. 
Recovery went brilliantly and I received a call from the gynae nurse about 4 weeks ago saying the biopsy report came back and it was a borderline cyst, possible precancer so it would be referred to the mdt team at the local women’s hospital. I also had a letter from my consultant saying the same and ended the letter by saying this is nothing to worry about. Brilliant, I was so happy! 
2 weeks later I got another call from the same nurse saying the mdt had looked at it and the histology showed it came from my bowel, cancer was never ever mentioned to me at this point, and I would need to be referred to the GI team. I asked should I be worried and was told no, it’s just belt and braces (her words). 
Then last Wednesday my world came crashing down!! The GI murder called me on my way to work to say I needed and up to date CT scan and I would be booked in clinic after that. I asked her should I be worried and was asked what had I been told. She seemed very vague after I had explained what the gynae nurse had said but she didn’t correct anything. A few hours later I was called back by gynae and was told mdt think it’s bowel cancer and disagreed with the original pathologist. I just couldn’t believe it, it had been over 8 weeks since my week stay in hospital were I had every blood test and scans done and they’d missed it. 
I had the Ct san last Friday and had an appointment with GI next Tuesday but nothing has been mentioned about oncology, surely if I’ve been left this long since my hospital stay and they now believe it to be cancer I should have at least had an appointment or something from them?!

I just so scared, angry and confused! I have no pain anywhere else and have had so many comments on well I’m looking. I’m 42 and have 3 kids, how do I get through this? 

  • Sorry to hear of your experience. It’s hard not to worry but try not to until you are told exactly what the situation is. As for the amount of weeks you’ve waited try not to worry about that I was diagnosed with recurrent bowel cancer last August and have had No treatment and I’m doing well I start chemo beginning of June. 
    The fact you’ve not got any symptoms is encouraging, keep positive I believe that goes a long way. Heart

    Cath

  • Thank you Cath, I’m trying to think positive thoughts but it’s very difficult. 
    My kids are my strength and I’ll be be fighting with everything I have for them but I feel so bad for them, they’re too young to have to deal with any of this. My eldest is 17 and she knows they think it’s cancer. I can’t bring myself to say anything to the younger two until we have to. My middle daughter who is 10 is so sensitive, she knows something is going on 

  • Hi Emma1878

    My experience for my sigmoid tumour was Gastro consultant first to review further investigations (colonoscopy or flexisigmoidoscopy), and then again to review findings and discuss surgery options.

    I only was connected to oncology team only after further Gastro review post surgery and post surgery pathology report was in.

    The order of things and your journey will all depend on what type of cancer they find and where. Mine was in sigmoid colon tumour.

    We can share a pathway document if you'd like to read more about bowel cancer journey options

  • Thank you, I think that would be really helpful x

  • Hi Emma, 

    You are right kids know when something isn’t right. My daughter was on holiday when I got the news. She kept phoning me which was unusual when she was away on holiday the amount of times she was phoning. I thought I was acting normal but she said she just new she was coming home to bad news. You will Know when the time is right to tell your 10 year old. I have 4 grandchildren and age 5-11. The 11 year old has been told but the 10 year old is like your daughter very sensitive. Her hair falls out when she’s stressed.

    You will be in my thoughts sending you a big hug Heart

    Cath

  • Hi Emma1878

    Sorry for delay in coming back to you.

    Here is the Pathway document that I mentioned:

    bowelcancerorguk.s3.amazonaws.com/.../YourPathway_BowelCancerUK.pdf