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Lost biopsy

Tresia23's picture
Tresia23
Posts: 75
Joined: Dec 2010

Hi, I have not posted for a while. Recently had gastroscopy and colonoscopy after having GI symptoms since October 2011. Gastro talked about Lynch syndrome and the connection with endometrial cancer. Had procedure two weeks ago and report said I had gastritis and a small polyp in caecum which was sent for biopsy to pathology. When I went back to see gastro for report of findings, he could not find report and it seems the biopsy was lost when the endo nurse transferred specimen. Gastro told me it was small 1.5mm. Before I had the procedure I told him I already had specimens being retained following endometrial cancer and could they be tested for Lynch syndrome. He said he would talk to my gyn/onc. I do not think this occurred, but I will be asking when I see her in a month. I asked gastro since specimen was lost, what was likelihood of it being cancerous. He said it was tiny and it took several years for colorectal tumours to grow. I am scheduled for another colonoscopy in three years. He said I could have one sooner if I wished. I also asked was there a blood test I could have and he said no. On reflection, I think this was his opportunity to discuss having the endometrial cancer specimens examined. I am very disappointed and angry about what happened. I did a really thorough prep and was hoping for an unambiguous result one way or the other. I feel in limbo now. Have also noticed I am developed red, stinging raised growth between sternum and collarbone. Starting to wonder if this is a melanoma now! Seeing primary care doc in a few days and I plan to discuss with her.
I have been following posts and I hope everyone in treatment is feeling as good as can be expected. Feel like I know a few of you now even though we have not met. Kind thoughts to everyone, Georgia

debrajo's picture
debrajo
Posts: 796
Joined: Sep 2011

WOW! What a mess,dear! There must be some tissue somewhere or a blood test. If you suspect it's cancer(due to Lynch) Three years is three years too many! I have never heard of that many mistakes in one test! Get the test do ASAP,,,there maybe cells floating around the could do a wash and test. Wishing you the best with everthing including kicking tail about this! debrajo

Shell bug's picture
Shell bug
Posts: 68
Joined: Nov 2011

I have Lynch Syndrome. Everything I have read says a max of 2 years between colonoscopies. If you are over 40, they should be yearly.

I wouldn't wait on another one. I have my first one in May and I'm sure they are no fun. I am so sorry you have had this experience.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I'm sorry about this situation. It is nerve racking and pretty hard to believe that they could lose such a thing. Are they looking for your tissue or just giving up?

But my question is - if we are getting good surveillance of our uterine cancer with scans and bloodwork, wouldn't any cancer elsewhere in the body show up in the scans? Or do colonoscopies pick up problems sooner?

I have a family hx of colon cancer so I am concerned. I just had colonoscopy done (neg). I asked both my gyn-onc and gastroenterologist about connection between uterine and colon cancer and they both minimized it. I thought that was odd because of the Lynch Syndrome thing. I don't know if it makes any sense to get genetic testing at this point or just get another colonoscopy in a couple of years.

Sorry again, Georgia. Mary Ann

Tresia23's picture
Tresia23
Posts: 75
Joined: Dec 2010

I am so grateful to be able to talk about this stuff here. No-one at home would really get it. I haven't been diagnosed with Lynch syndrome, my gastro just raised it as something to investigate due to my new symptoms. This is why I am so disappointed that biopsy was lost. Have done some research yesterday and today and have found studies that recommend Lynch syndrome testing of endometrial cancer biopsy tissue, so this is what I am focussing on now. My gyn/onc appt is four weeks away. She referred me to the gastro so she has some involvement in the outcome. If I did have Lynch syndrome then I think I would go back to gastro for further discussions about colonoscopy sooner than three years.
What happened was that the nurse in endoscopy missed the container when she was transferring specimen. She said she thought it had gone into container when it had not. It would have gone out in waste disposal of materials following my procedure. The endoscopy unit is dimmed so surgeon can view tv monitor while scoping. They have done an incident report on what happened and will make a spotlight available in future for the assistant so they can see what they are doing. This does not help me however.
Mary Ann if you have a family history of colon cancer, they could maybe do tissue testing from your uterine surgery. I think genetic testing takes quite a while, but it can be done in addition to regular colonoscopy. There was some comment about this recently when Rachelle and some of the others were discussing Lynch syndrome networking. I think the scans and monitoring of uterine recurrence is as good as it can be. Tumours have to be a certain size before they can be detected as others have mentioned. Thank you again for comments and support. Loving thoughts to you, Georgia

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