am I getting the correct treatment???

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oncology12345
oncology12345 Member Posts: 41

I've posted here before about the removal of a perianal squamous cell carcinoma in situ which I had done last August. It was between 1 and 2 cm in size. That's over with and went well thank goodness. My doctor- a colorectal surgeon- wanted to do a procedure called 'anal mapping' which meant taking 20 or so random biopsies down there to check I guess for dysplasia,  however I decided against this and haver decided to watch and wait instead. Since then he has never looked down there at all and my next meeting with him is in May or June when he will look up there with a camera. I guess I'm asking if this sounds like proper follow up? What kind of follow up should I be getting?  I seem to be constantly worried about it and every itch I think 'Oh my God it's something'

Any advice welcome

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  • qv62
    qv62 Member Posts: 434 Member
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    oncology12345

    Prior to being diagnosed with invasive anal cancer I was insitu for five years, I was seen by a colo-rectal surgeon for 2 years, then seen by a colo-rectal surgical oncologist for the next three years being seen every three months (but usually sooner due to symptoms) the journey also included many scopes, OR biopsies and exams depending on what my symptoms were. Hope this helps

  • oncology12345
    oncology12345 Member Posts: 41
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    qv62 said:

    oncology12345

    Prior to being diagnosed with invasive anal cancer I was insitu for five years, I was seen by a colo-rectal surgeon for 2 years, then seen by a colo-rectal surgical oncologist for the next three years being seen every three months (but usually sooner due to symptoms) the journey also included many scopes, OR biopsies and exams depending on what my symptoms were. Hope this helps

    Yes it does help, I feel I

    Yes it does help, I feel I should be looked at every three months and that once after 10 months isn't enough at all.

  • oncology12345
    oncology12345 Member Posts: 41
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    Yes it does help, I feel I

    Yes it does help, I feel I should be looked at every three months and that once after 10 months isn't enough at all.

    Do you mind if I ask - you

    Do you mind if I ask - you were in situ for 5 years, was this perianal like me or in the anal canal??

  • qv62
    qv62 Member Posts: 434 Member
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    Do you mind if I ask - you

    Do you mind if I ask - you were in situ for 5 years, was this perianal like me or in the anal canal??

    oncology12345

    I had numerous biopsies with the growths being on the sphincter, I am not sure of what the procedure for anal mapping is exactly but I had a major surgery taking out lots of growth area and having a plastic surgeon in the OR with the colo-rectal doctor to perform skin graghing over the removed areas. The recovery was long and painful with a week long stay in the hospital and not being allowed to sit for six weeks per doctors orders. I don't know if this is similar but if so I can fill you in more on the procedure.

  • oncology12345
    oncology12345 Member Posts: 41
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    qv62 said:

    oncology12345

    I had numerous biopsies with the growths being on the sphincter, I am not sure of what the procedure for anal mapping is exactly but I had a major surgery taking out lots of growth area and having a plastic surgeon in the OR with the colo-rectal doctor to perform skin graghing over the removed areas. The recovery was long and painful with a week long stay in the hospital and not being allowed to sit for six weeks per doctors orders. I don't know if this is similar but if so I can fill you in more on the procedure.

    my growth was just near anal

    my growth was just near anal opening so we are a bit alike I guess. My surgery was very painful too however I could sitSmile   To look there now it looks perfectly normal to me however I do have a little itch lately and I'm worried about it. I'mnot sure what to do but I'm not feeling safe. When you said you were sometimes seen sooner by your doctor due to symptoms what did you mean? What kind of symptoms had you that necessitated going sooner?

    Also my doctor did mention plastics to me when he mentioned the biopsies, I'd like to know more about this and why it was done exactly. Thanks very much

  • qv62
    qv62 Member Posts: 434 Member
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    my growth was just near anal

    my growth was just near anal opening so we are a bit alike I guess. My surgery was very painful too however I could sitSmile   To look there now it looks perfectly normal to me however I do have a little itch lately and I'm worried about it. I'mnot sure what to do but I'm not feeling safe. When you said you were sometimes seen sooner by your doctor due to symptoms what did you mean? What kind of symptoms had you that necessitated going sooner?

    Also my doctor did mention plastics to me when he mentioned the biopsies, I'd like to know more about this and why it was done exactly. Thanks very much

    oncology12345

    The "non sitting" recovery was after the plastics. I think the just of doing that was to go deeper into the tissue since I had so many recurrences and they weren't getting clear margins. I guess they thought this would get to the root of the problem so to speak. They also took extra biopsies at that time so this may be what your doctor is talking about. I would ask them about the recovery and we can compare notes to see if it is the same procedure. I had high hopes afterwards that this would be the end of all the growths however that was in 2011 and I had many more OR biopsies after that as well as treatment in 2014 (my first biopsy was 2009). What I meant about being seen sooner is that after a good scope the colo-rectal doctor would say "ok see you in three months" before three months were up I was calling and asking to be seen due to itching, bleeding, discomfort, seeing ridges in my stool etc.. They would take me in earlier than my scheduled appointment, do a scope, not like what they saw, do a biopsy in the OR and remove the growth. This happened to me a few times so I would always know when something wasn't quite right. I hope the info helps, I'd be happy to answer whatever else I can, I do think though that if you are having itching you should call and get it checked out.

  • oncology12345
    oncology12345 Member Posts: 41
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    qv62 said:

    oncology12345

    The "non sitting" recovery was after the plastics. I think the just of doing that was to go deeper into the tissue since I had so many recurrences and they weren't getting clear margins. I guess they thought this would get to the root of the problem so to speak. They also took extra biopsies at that time so this may be what your doctor is talking about. I would ask them about the recovery and we can compare notes to see if it is the same procedure. I had high hopes afterwards that this would be the end of all the growths however that was in 2011 and I had many more OR biopsies after that as well as treatment in 2014 (my first biopsy was 2009). What I meant about being seen sooner is that after a good scope the colo-rectal doctor would say "ok see you in three months" before three months were up I was calling and asking to be seen due to itching, bleeding, discomfort, seeing ridges in my stool etc.. They would take me in earlier than my scheduled appointment, do a scope, not like what they saw, do a biopsy in the OR and remove the growth. This happened to me a few times so I would always know when something wasn't quite right. I hope the info helps, I'd be happy to answer whatever else I can, I do think though that if you are having itching you should call and get it checked out.

    Thanks so much for your

    Thanks so much for your reply, it really helps. You're right I do need to be seen sooner and I'm going to phone and try and make that happen. My doctor is a colo-rectal surgeon and I hope he's the right person to be dealing with this! 

    I'm curious where are you at now in regards to your cancer ? bowel function - if you don't mind me asking?

  • qv62
    qv62 Member Posts: 434 Member
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    Thanks so much for your

    Thanks so much for your reply, it really helps. You're right I do need to be seen sooner and I'm going to phone and try and make that happen. My doctor is a colo-rectal surgeon and I hope he's the right person to be dealing with this! 

    I'm curious where are you at now in regards to your cancer ? bowel function - if you don't mind me asking?

    oncology12345

    So glad to hear you are making an appointment, I certainly don't want to alarm you as it could just be inflamation or a fissure, however best to get it checked out. I always knew when I had a new growth and my doctor was amazed at my detection. As for the doctor is he ia colo-rectal surgical oncologist or a colo-rectal surgeon ? My first 2 years I saw a colo-rectal surgeon and since 2009 I have been with a colo-rectal surgical oncologist, I finished treatment 8 and a half months ago and I'm just getting my energy back, I've been working since September. As for the bathroom issues, no worries on asking, that's what we are all here for to pass on info. Prior to treatment I avereraged 3-4 movements now it's about 5-6 however I had many OR biopsies on my sphichter as well as the surgeries. I hope you get an appointment without any trouble.

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
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    I'm glad you're okay as I've wondered from time to time how you were doing. As we discussed in the past, a high resolution anoscopy (HRA) may be something to ask about again, as long as you're being scoped anyway. Or does the doctor plan to do a sigmoidoscopy? With the HRA, the colposcope is like a microscope. The doc takes an anal pap smear and then coats the inner surfaces with a vinegar solution and examines them under magnification. He needs only to biopsy any suspicious areas, should any appear. Info for the procedure is on the UCSF site.

    I had stage 3a-or-b (inguinal nodes never biopsied, but treated as if 3-b). Following treatment, the colo-rectal has scoped me twice at 3 month intervals. He took biopsies each time (4, then 2) as I am AIN-1. And I'm not going to lie: IT HURT!

  • oncology12345
    oncology12345 Member Posts: 41
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    I'm glad you're okay as I've wondered from time to time how you were doing. As we discussed in the past, a high resolution anoscopy (HRA) may be something to ask about again, as long as you're being scoped anyway. Or does the doctor plan to do a sigmoidoscopy? With the HRA, the colposcope is like a microscope. The doc takes an anal pap smear and then coats the inner surfaces with a vinegar solution and examines them under magnification. He needs only to biopsy any suspicious areas, should any appear. Info for the procedure is on the UCSF site.

    I had stage 3a-or-b (inguinal nodes never biopsied, but treated as if 3-b). Following treatment, the colo-rectal has scoped me twice at 3 month intervals. He took biopsies each time (4, then 2) as I am AIN-1. And I'm not going to lie: IT HURT!

    Hi Ouch-Ouch-Ouch , thanks

    Hi Ouch-Ouch-Ouch , thanks for your good wishes and I hope you're doing well yourself. I'd LOVE to do a HRA but no one seems to do them here so I just have to take what the doctor gives. After my growth was removed I went for a second opinion on what to do and he recommended close observation ( every three months) but my doc isn't seeing me 'till May or June!!! That's 9/10 months after the removal and as I've this little itch that worries me. I'm going to phone after Easter and see if he'll see me sooner - hopefully it's nothing. I've myself driven mad with worry and as I've never told anyone I come on here fairly regularly to see other peoples stories which helps a little.Frown