I was recently diagnosed with invasive squamous cell carcinoma arising from a 9mm polyp (villous lesion) at pouch-anal anastomosis after undergoing a screening pouchoscopy/coloscopy. (I am a patient with F.A.P Disease) The Pathology report showed the lesion to be squamous cell carcinoma arising and P16 positive. Also noted were fragments of a tubulovillous adenoma with focal high-grade dysplasia/intramucosal carcinoma.
Pet Scan showed impressions of the following:
1). Radiotracer activity showed the anal canal slightly distal to the region of the pouch anastomosis and to be non-specific with reflection areas of residual malignancy versus intense physiologic activity.
2). Prominent perirectal lymph nodes are indeterminate and suspicious for areas of nodal metastatic disease.
3). Scattered hypermetabolic lymph nodes, the cervical external iliac chains are indeterminate and may be reactive/inflammatory. However, lymphoproliferative disorder versus nodal metastatic disease is c to exclude—attention should be w/follow-up examinations.
The standard care for any anal or rectal patient I have been hearing is to do chemo/radiation therapy which the medical oncologist stated radiation therapy typically delivered f 6 weeks 5400 cGy at 180 centigrade per fraction, along with chemotherapy to be mitomycin and 5-FU. However, this treatment is already a J-Pouch holder of 39 years, and I am afraid of any damage that could potentially arise from it, meaning I would, at some point later, need to revert to an ileostomy or possibly I could revert to a Kock pouch (continental ileostomy). My other option was to do a transanal excision followed by observation, which may compromise the treatment of her cancer. I did choose to have the transanal excision o with a path report showing the endoscopic impression of a mass lesion being noted. Though things may not entirely represent the targeted lesion, possibility of invasive carcinoma in deeper or unsampled tissue, it cannot be excluded. Clinicopathologic correlation is recommended.
So I am wondering if just doing the option of surveillance every 3 months for 2 years followed by t more years of 6-month surveillance by then a one time the last year is worth it considering this could return compared to the just treat and be done in a 6-8 week with possible risk of needing a revert to ileostomy or new pouch if needed. I have been advised that I may not even need to have my current J-Pouch revised if it were to withhold and stand up to the treatment. Right now,d been through enough. I just jumped to option 1 to watch, but now I'm losing more ground as I wonder if it's the best option and quality of life.
Any thoughts and advice are beneficial.
Hello GabaMis
I am Brian one of the Community Champions here at Macmillan. I have just noticed your post has gone unanswered. I can't answer it myself as I have a different cancer, however by me replying it will be "bumped up" to the top of the forum and I hope read and replied to by other members of the Anal cancer group.
Best wishes - Brian.
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Hi GabaMis
I don’t have the right experience personally to respond to the content of your post, but I wonder if you might find any relevant experiences in our Stoma Support forum? I am the community champion for the Stoma Support group and I’ll put the link here in case you are interested in taking a look at it.
I have a permanent colostomy and urostomy myself, and posts there tend to centre around those types of stomas and ileostomies/reversals. I do remember someone I spoke to in that group speaking about a J pouch, but it hasn’t been something I’ve seen mentioned often.
However, that’s not to say that there isn’t someone looking in who might have some experience which might be helpful for you. In that particular group we have experience of stomas for various different cancers, so you could try and post a question there specifically relating to your J pouch.
I myself wasn’t in a position to consider any watch and wait scenario, but I can appreciate it must be difficult when faced with different options. I think it’s helpful that you’ve been told that the standard chemoradiation for anal cancer might not require any future revision for you of your pouch, so I’d find that encouraging. Surveillance might be quite stressful for you considering the presence of the lesion being noted and the fact that something deeper in the tissue cannot be excluded, but your choice is a very personal one for you depending on how you might cope with the knowledge you have already.
It may be that your lack of replies has been the fact that there isn’t anyone who is going through the same experience as you, but there is certainly a lot of advice and knowledge in the anal cancer group about chemoradiation treatment which might help with your decision.
Sarah xx
Hi GabaMis ,
Firstly welcome to the MacMillan Online Community & apologies it’s taken so long to get back to you (thanks Millibob for bumping this post) as with everyone that has replied I don’t have any experience of you particular situation & I’m in awe of the details of your post. There seem to be many complications due to your ongoing FAP disease & already having & J pouch & I understand the conflict this must present you with concerning treatment options. I could tell you what my decision would be but I am not you & I don’t have the experience of living with the colon issues that you have, therefore I think this will be a very personal decision on how you move forward from here. Have I read your post correctly in that it’s undecided if there is metastatic disease also by way of lymph nodes being affected? This would be a deciding factor for me as if there’s a chance that the disease is on the move I’d want it stopping in its tracks.
As SarahH21 has suggested maybe popping over to the Ileostomy, colostomy and stoma support group also could clarify things a little for you.
Please let us know how things go.
Nicola
