Biopsy results confusing

• I'm sorry to hear this and I hope you get some answers soon. Not quite the same but my husband had a suspicious polyp found during a colonoscopy following a positive FIT test. The biopsy came back showing high grade dysplasia (ie precancerous)but not cancer so we were initially told it would most likely be removed via EMR. Following the complex polyp team meeting we were contacted by a surgeon and told that despite the biopsy results it was now being treated as cancer. He is now booked in for surgery. I am grateful they have acted quickly so I can only imagine your frustration. Have you a named nurse or someone you can discuss this with? 

They told us that biopsies only take samples from the outer edge of the polyp and often cancer can be deeper inside so the needle biopsy may give them a better sample.  

Hello, I'm so sorry to hear that happened to you and your husband. It can all be so confusing, frustrating and scary.

We do have a specific cancer nurse, yes. And after emailing her about concerns they have at least expedited the colonoscopy.

And they also explained this to us - that biopsies may not go deep enough first time.

So they are doing a second colonoscopy today and a needle biopsy into his abdomen next Friday - so we should have the results back for both in 2 weeks.

SO much good luck for your husband's surgery - it is feels good that they are at least acting fast and going with a more risk averse option.

Thank you. Confusing and scary definitely sums it up! Its curious that our team went directly to surgery without any further tests whereas yours want more tests but every case is different I guess. The wait for results feels long but hopefully you will then have a clearer picture of next steps. Best wishes to you all. Keep us updated. 

I thought that, but I suspect it's because in my brother's case they suspect advanced cancer that has also metastasised - when they did a CT scan they can see growth in his peritoneal lining. Which can often come with a poorer prognosis.

So I suppose surgery may not be the first choice, maybe they will do chemo (HIPEC specifically), to see if they can tackle the peritoneal spread?

I'm not sure, but I will certainly keep you updated - please do the same with your husband.

Slightly different story but maybe it will help. 

My tumor was found via CT scan for something else. It was so massive that there was no question of whether or not I cancer, the only questions were what kind of cancer and had it spread. 

Once they got a biopsy vaginally, they canceled my colonoscopy! (They didn't believe it was a colorectal cancer.) It took a month to get the scans needed to check for spread and only then did they get the colonoscopy scheduled. 

In all, it was 6 weeks before I was able to start treatment. I nearly lost my mind waiting. 

But it didn't impact my outcome. We were still able to shrink it with radiation and chemo. Surgery was successful and I am currently considered cancer free and in surveillance. Even if my cancer recurs, it won't be because of the time needed to get me on the right treatment path. 

As best you can, try to take a deep breath and trust the system. 

Wow Susan, I can't even imagine - what a horrible experience to have to wait so long for answers and treatment! But I am so happy to hear you are now cancer free.

Everyone who has shared their stories has really helped me and my family understand that - as you say - we need to trust the system.

We are mainly terrified because of this peritoneal spread they can see on the CT scan. But yeah, 2 more weeks and then at least we'll have results from a 2nd colonoscopy and a needle biopsy and we will know for sure.