Coping with being told you're high risk for cancer

[pathetic98]

Struggling to cope and feeling very alone.

Have recently had a cancer scare where they originally told me to expect a cancer diagnosis when the biopsy results came back. I was in pieces after that conversation (couldn't eat, couldn't sleep, couldn't think straight) but by the time I had my results appointment I had started to feel accepting and prepared for what was going to come next. (Scared as hell, but prepared.)

At the appointment, instead of getting a diagnosis or an all clear, I was told the biopsy was negative this time but I'm very high risk for cancer and I have to repeat this process in another 6 months. They were talking like it's just a matter of time before I get a positive biopsy result - but we don't know when so we have to keep me under surveillance long term.

Everyone said that the uncertainty of waiting for results was the worst part and it would be easier once there was a diagnosis and plan. That was really comforting when I was waiting because I thought if I could just get to the results appointment, even if it was bad news there would be a plan for what came next. And if I needed some time to "fall apart" and process things after the appointment that would be okay. So I put my head down and kept going.

But now I feel like I've just been left in an indefinite limbo with all the fear and uncertainty I had whilst waiting for the biopsy results. Except this time there is no end date and there isn't any support. And it's definitely not acceptable to take time out to process this kind of news.

I can't concentrate on anything, I keep dissolving into tears, and I can't talk to anyone about it. The few people who knew what was happening just told me what good news this is and don't understand why I'm scared or upset. So now I feel ashamed and alone as well as scared and upset.

I'm very grateful this biopsy result was negative, but being told that I'm very high risk for cancer and need to be tested again every 6 months for the rest of my life doesn't feel good. It feels terrifying and unbearable.

I know there is nothing anybody can do to change this, but I'm just feeling very alone and hopeless right now.

I’m sorry to hear this. I have a very high risk of bowel cancer because all of my close relatives have died of it. There is little I can do except monitor myself closely and get checked out regularly.

What type of cancer are you at risk of? Is there anything you can do to prevent it - ie mastectomy etc? Is that something you’d consider if an option?

Thank you for replying. I'm so sorry you're in that position, that sounds incredibly difficult. I lost one close relative to cancer and that was hard enough, I can't imagine what you've been through. My situation seems trivial next to yours.

It's bowel cancer that's my highest risk and then higher risk for some related ones. So like you, it's basically just regular surveillance on the table.

If it's any consolation, bowel cancer is generally slow growing and very treatable if detected early, so if you are being monitored on a regular basis then that's probably all they need to do at the moment.

In your shoes, I think I would ask the consultant to quantify exactly what they mean by 'very high risk' - can they put a percentage figure on it ?

Is it by any chance Lynch syndrome that they've detected ?

I sympathise @pathetic98 . I am at very high risk of breast and ovarian cancer. It's a difficult thing to get your head around.
There's a Macmillan forum which might be useful for talking to people in the same boat as you. It can be very isolating dealing with something like this.

Thank you @P00hsticks . Yes I think it would be helpful if it was quantified better. They were a bit euphemistic when they talked to me and I had to ask them a few times to clarify what they meant as they were being vague. I don't know if they were trying to make sure I took it seriously but without scaring me too much? If so, I don't think that worked because it's just left me unsure about what I'm dealing with or how bad it is.

I've already had another appointment letter arrive, which is less than a fortnight away from the last one. One of the related cancers that they said they wanted to monitor me for has really poor survival rates. This letter has panicked me that they haven't been entirely honest about how concerned they are, otherwise why would it be so soon. I fell apart all over again when I opened it.

I feel so confused and yes, isolated. Trying to put on a happy face is a bit lonely and draining. I will go and look for the Macmillan forum. Thank you, I'm really sorry you're in a similar situation @WhereAreWeNow , it's horrible.

Oh and that is more reassuring to hear that bowel cancer at least is usually slow growing - they didn't tell me that!

I don't think I asked the right questions. I wasn't prepared for the type of conversation they ended up having with me. It wasn't what I expected after everything that had gone before.