Four biopsies since 2016!?

Mollymaude

I finished treatment in January of 2016. A few months later I got a colonoscopy with biopsy by the original GI doctor who found my cancer. I really wasn’t impressed with this doctor as he was not aggressive about scheduling work up and referrals for my cancer and I ended up doing all that myself. He was quite young and didn’t have a clue about anal cancer- told me that since my cancer was squamous cell it had a bad prognosis which is just not true. But my oncologist felt since he was the one who found the cancer and actually saw it he should be the one to do the follow up. 

Then I had my gallbladder out later that year, got constipated with pain meds, and got rectal spasms from the pain of passing those stools. I happened to have my rectal exam the week after the gallbladder and my oncologist “felt something” and sent me over ASAP to the general surgeon who also “felt something” and did an  anoscopy and biopsy. I now believe that the “something “ they were feeling was  a rectal spasm - after weeks of suffering severe but intermittent pain I stumbled upon the solution for the pain- cyclobenzaprine- a muscle relaxer.

Fast forward another year and I’m due for my anoscopy again. I don’t want to go back to the first GI guy for obvious reasons, the general surgeon had moved away, so I opted to go to a tertiary medical center farther away from home but where I could get the anoscope done by oncology colorectal surgeon and also get my scarred in IUD removed by a gynecologist during the same surgery. So biopsy number three happened because his was the first time this doctor had scoped me and he saw scar tissue. 

Ok now the present- I went back to colorectal surgeon for scope last week. When he came to see me before taking me to OR (he does scope under general anesthesia) I asked that he please not do a biopsy unless really necessary because they are painful and take about six weeks to heal. He told me that if he sees scar tissue he is going to biopsy it and that the biopsy shouldn’t cause that much pain or take that long to heal. So I had biopsy number four. Got results today and benign like all the rest. 

So now what? Do I look for a different provider to do my scopes because I don’t want the biopsies? This provider flat out said if he sees scar tissue he is going to biopsy and that did not seem negotiable. I wonder if I’m being too critical and picky about my doctors? Not sure I have the energy to find a different provider to scope me or figure out who else to go to. Thanks to everyone who read this long post, just feel kind of frustrated and confused.

 

eihtak

Mollymaude...

Hi,

You certainly have reason for frustration!! So sorry for that.

It seems illogical to think there would "NOT" be scar tissue, and even more illogical to think that that warrants multiple biopsies without other reason?????

My diagnosis and treatment took a different path so hopefully someone else will chime in with an opinion here...

The only anal biopsy I got was at my initial dx. I had ostomy surgery then began chemo and radiation. Follow-ups included scans, blood work, scopes, dre's (my ostomy is a loop ostomy which means I still have my anus and recum but they are not connected to my colon so basically out of commission) but never a biopsy. I've had thus far no local area concerns and my mets have been to my lung of which I have had a biopsy.

You have every right to be critical, picky, or any thing else along those lines when choosing who will provide important health care such as this. Some people have luck with going through a patient advocate to get what they want...don't know if your clinic/hospital has that option but may be worth a try.

Good luck...please let us know how things turn out and I will keep you in my thoughts for quick healing from your recent biopsy and continued wellness.

katheryn

mp327

Mollymaude

I can understand you not wanting to have more biopsies, especially since they have come back as benign, with the exception of the initial one for diagnosis.  I sometimes wonder if doctors order these strictly to cover their own arse, afraid that should they miss something on visual exam, that they will be sued.  It seems crazy to put the patient through this painful procedure with possible healing issues, when the patient is not having any symptoms of recurrence, such as bleeding.  The only biopsy I have had post-treatment was when I had surgery to remove 3 anal condylomas, which my colorectal surgeon found on my anoscopy exam.  She said they needed to come out because it was possible for them to turn cancerous.  Thankfully, my biopsy came back negative and I did not have any problems with healing.  My colorectal surgeon does not do routine follow-up biopsies and only does them in cases like mine, where something is seen upon exam.  I do not know where you are located, but if I were you, I would search for another doctor, rather than go through this again and again.  I wish you all the best as you sort this all out.

Mollymaude

Thanks

Thanks for the feedback. As I write this I’m having another episode of those darn rectal spasms so it definitely does not feel worth it to have had the biopsy. And I realized I didn’t count the initial biopsy for the cancer diagnosis so I’ve actually had five biopsies. It is hard to know what the motivation is for the biopsies is- I do think it is partly to cover their own arse and maybe being unfamiliar with anal cancer. I guess I do need to find someone who doesn’t feel the need to biopsy every time I have a scope done. I‘m in Kansas if anyone has any suggestions.

tanda

Mollymaude

The latest NCN Guidelines for anal cancer surveillance/followup:https://www.nccn.org/professionals/physician_gls/pdf/anal

I don't know if you can open this but it states  DRE every 3-6 months for 5 yrs,,,,anoscopy every 6-12 months x 3 yrs.

I don't know whether your initial stage makes a difference.

As Kathryn says, everyone has scar tissue; my understanding is that biopsies are not routine, unless there are some real concerns as radiated tissue is very delicate.

The fact that HE he says biopsies are not negotiable ,(not mentioned in the guidelines) and everyone has scar tissue would give me pause.  

Are you having a HRA ? is that the reason for anaesthesia.

 

If you are still being followed by your radiation oncologist, you might discuss this issue with him/her.

Mollymaude

TandaI’m

My initial stage was just a large tumor the size of a chicken egg with no lymph node involvement. I don’t think it is high resolution scope but I’m beginning to wonder if there is a difference in some of the regular scopes. They do general anesthetic because of the discomfort of the scope and I suppose the biopsy. The surgeon said that the pain is probably due to all the stretching not the biopsy. But it hurts more where I know he took the biopsy on the left where the cancer was and where the scar tissue is now. They expect it to hurt enough that they discharge you with oxycodone. It sure doesn’t sound like what others have described on this forum where they go and it’s an in office procedure with no anesthesia. And my radiation oncologist changed practices so I don’t have any follow up with him anymore. On the other hand if the scopes are just for the first three years post cancer then I would only have to get one more scope anyway since I am 2 1/2 years out now.