The Colon Club

I'm working as a patient advocate with a doctor who has received a grant to study survivorship in early onset CRC. Drs are so focused on saving our lives that sometimes (as we often discuss) other things are not (like finances) which may have a big impact on your life. My question is how do you feel about being asked in a survey about a sensitive topic such as your sex life and the possible changes in that area? Would you be offended and would it make you NOT want to participate in the study? Is there a specific way that you would want the question asked? Would you want it to be an optional section? Please let me know your thoughts. Thank you!

Once I found MSK and Dr. Kemeny, I agreed to do just about anything they asked. I was in a clinical run by Dr. K, I was in a study of pain levels during and after chemo, I did a study while in the hospital for my liver resection regarding walking and strength, and a quality of life study that asked some very personal questions - some of which were on the topic you mention.

I have no problem sharing if that info could be used to help others. I figure if I let strangers put tubes and hoses in every orifice of my body, there's not much to be kept secret.

hiker

Phuong, I'd have no problem answering questions about my sex life during treatment or post-treatment if it was posed in the context of a medical survey.

You're right that it isn't something discussed by oncologists and yet it is a vital part of a person's life. I don't think it needs to be an optional section, but it could be in case someone was squeamish about sharing personal details. Like I said, though, I'd have no problem answering the questions.

Hope this helps!
Juliej

I'd have no problem with answering a questionnaire about sex life and other things in the context of a medical survey. I'm definitely getting into menopause and it's hard for me to know if some of the things happening are menopause-related (which I assume to be the case) or if they're chemo-related. And I should probably ask my oncologist about that. Not that I'm embarrassed to discuss it, but other things tend to be higher on my list when I see her. Really, it's much easier to talk about when the Dr. asks *me* about it, rather than it having to be the other way around.

As a non practicing lesbian, when I was finished with treatment I remember the doc telling me it was ok to resume sexual relations (assuming I WAS having that) and all I could think was a penis MIGHT go up there butt that lesbian sex was going to be next to impossible. So ask away!

Personally, I like knowing that my answers are confidential so if I could do them online and not have to hand a paper in, and if it was anonymous with a number so that people wouldn’t trace it back to me then I’d be comfortable answering. I’ve had one or two questions asked on paper among other health questions but that one is marked optional and there is a box to check if you aren’t comfortable answering.

Thanks for these thoughtful answers. If there is anyone else that would like to chime in but would rather not post, please PM me. The more answers I have, the better position I will be to share and the better the questions on the survey will be. Much appreciated!

No probs answering anything TBH,and would love to actually see replies as previously mentioned
It's an off topic with the hospitals

"Here a few dialators and off u go"( females)
Pretty lame TBH

There is a lot of damage done in there and we need to b aware of the consequences and possible avoidance of any further damage
ADELE X

I have no problems discussing or answering any personal questions. Thanks to surgery ,chemo ect that part of my life ceased to exist over twenty years ago so I would probably be a poor subject for a study. Ron.