New to group and Cancer

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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  

    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  

    I read your post and felt unable to offer any advice - you seem incredibly knowledgeable about your situation and options available.  

    I just finished, yesterday, my 28 days of radiotherapy and chemotherapy for 55 mm tumour that's attached to my internal sphincter, the cancer had spread also to my groin and pelvic lymph nodes - it will be six months before I know if the treatment has worked it's magic or not.  I was originally informed that they would need to whip it all out and I'd have a stoma - and maybe that could still be the case.  

    I am now in the "healing phase" and expect the next two weeks to be rather challenging.  I also found the last 10 days very tough, however the pain medication helped and I'm pleased to have finished with the daily hospital visits and chemo.  This treatment plan was at times brutal but bearable. 

    I'm sorry not to be able to offer any help or advice in relation to the situation that you now find yourself... I hope you get the answers you are seeking and I wish you the best of luck with your journey to wellness.

    Ali 

  • Hi  

    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.

    Stoma Support forum

    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


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  • Hello GabaMis

    Millibob was right in answering your email to bump it up to the top of the forum, thank you Millibob.  I did read your post shortly after it came in but as a lot of it was different to anything I had experienced I didn't answer at the time as I needed to do more Googling, so I am really sorry about that.

    I have read through again and can only say what I would do in your shoes.  I would not forego treatment.  At one point in my treatment there was doubt as to whether or not I would have the chemo/radiotherapy and I was so relieved when they decided to go ahead.  It is a tough path, there is no doubt about that, but the constant surveillance can be really tough too, especially on your mental health.  There is quite a lot of fear about colostomies and ileostomies that really is unfounded. (I am taking the view that if your J-pouch is compromised).  I had an elective colostomy seven months ago and I have never looked back.  I had a couple of hiccups but nothing I couldn't cope with.  I realise that an ileostomy can be more erratic than a colostomy so Sarah's advice to visit the Stoma support forum is a really good idea; I did when I couldn't decide whether to have the op or not and everyone was really helpful.

    I suffered severe anal stenosis following the standard treatment and short of manually stretching my anus regularly (scar tissue would make it contract again) and my quality of life was really affected.  But I am taking the worst view. Many on this forum go back to normal (perhaps a new normal) after treatment and don't have to take the steps that I did and you may well be one of those.  So you may have the treatment, be in the clear, and can get on with your life.  You will still be checked regularly, most people are, but perhaps with a bit more peace of mind.

    I am sorry if my answer is somewhat garbled, I am answering in a hurry as I didn't want you to feel people on the forum don't care - you already have answers which show they do.  But I am in over my head (as I am sure you can tell!)

    And I stress, it is only what I would do.  The decision is yours, and we will support you whatever you decide.

    Irene xx

  • Hi GabaMis

    I can't answer your post, but just wanted to say hi and send you a hug. Xx

  • Hi  ,

    Firstly welcome to the MacMillan Online Community & apologies it’s taken so long to get back to you (thanks  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  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