Need hope for recurrent anal cancer.

NYCer
NYCer Member Posts: 1
edited March 2014 in Anal Cancer #1
Hi All - I'm a 47y/o white male in NYC with recurrent anal cancer. My orignal diagnosis was in Feb '09 with stage II. I then underwent surgery and completed chemo + radiation treatment in April '09.

After a recent pet scan (23 Sep) my oncologist advised of the recurrence and that the tumor is localised. Now consulting with oncologist and surgeon on next steps.

Can anyone please provide any advice, success and reference on their own anal cancer recurrence? I am worried and looking for some hope.

Comments

  • TJ30
    TJ30 Member Posts: 11
    #2
    NYCer
    I can't speak on my own experience as I have only posted here with questions on symptoms. But I will say that I have searched the internet on anal cancer every day for the past 5 months. And have read so many great storys of survival. Some with cancer that have spread all over and then later went on to be completely clear in all scans and follow up scans 5 years later. One man was told he had "full blown aids and stage 4 anal cancer". He went thru all the treatments and was cleared he was DX in 2002!

    There are great storys on this websight also. The word localised is good! It must be hard to have a recurrence but many people on here have had it come up in other places and have been successful in getting rid of it!

    If you are at all interested in alternative approaches to complement what your oncologist and surgeon decide you can watch the following people on youtube, "Kim Tinkham ph miracle"
    or Thomas Lodi videos on how people can stop makeing cancer in their bodys.

    Good luck and God bless.
  • mp327
    mp327 Member Posts: 4,440 Member
    #3
    NYCer
    I'm sorry to hear that not only did you undergo surgery and treatment, but are now facing recurrence. As you probably already know, the standard treatment for recurrent anal cancer is APR with permanent colostomy. However, I would not agree to that surgery unless and until I got a second or third opinion. If the tumor is localized and small, I would definitely ask about the possibility of successful excision. I recently had 3 small benign anal warts removed and am still healing from that, which is one of the main concerns with doing surgery in the anal canal after radiation. Radiated tissue does not heal well, as I am finding out. I underwent chemo/rad for anal cancer in Aug./Sept. 08.

    I think all of us are aware that our cancer could come back and that the treatment is typically APR with colostomy. However, medical treatments have come a long way and perhaps there is a less-radical treatment out there. Dr. Catherine Eng at MD Anderson in Houston is doing lots of research on the treatment of recurrent anal cancer. Even if you can not get an appt. with her, your doctor(s) may be able to consult with her to see if there's any other options.

    I wish you all the best and hope that you will keep us updated on what you find out.

    Martha
  • nonichol
    nonichol Member Posts: 170
    #4
    mp327 said:

    NYCer
    I'm sorry to hear that not only did you undergo surgery and treatment, but are now facing recurrence. As you probably already know, the standard treatment for recurrent anal cancer is APR with permanent colostomy. However, I would not agree to that surgery unless and until I got a second or third opinion. If the tumor is localized and small, I would definitely ask about the possibility of successful excision. I recently had 3 small benign anal warts removed and am still healing from that, which is one of the main concerns with doing surgery in the anal canal after radiation. Radiated tissue does not heal well, as I am finding out. I underwent chemo/rad for anal cancer in Aug./Sept. 08.

    I think all of us are aware that our cancer could come back and that the treatment is typically APR with colostomy. However, medical treatments have come a long way and perhaps there is a less-radical treatment out there. Dr. Catherine Eng at MD Anderson in Houston is doing lots of research on the treatment of recurrent anal cancer. Even if you can not get an appt. with her, your doctor(s) may be able to consult with her to see if there's any other options.

    I wish you all the best and hope that you will keep us updated on what you find out.

    Martha

    APR
    Martha,
    What is APR?
    Norma
  • nonichol
    nonichol Member Posts: 170
    #5
    mp327 said:

    NYCer
    I'm sorry to hear that not only did you undergo surgery and treatment, but are now facing recurrence. As you probably already know, the standard treatment for recurrent anal cancer is APR with permanent colostomy. However, I would not agree to that surgery unless and until I got a second or third opinion. If the tumor is localized and small, I would definitely ask about the possibility of successful excision. I recently had 3 small benign anal warts removed and am still healing from that, which is one of the main concerns with doing surgery in the anal canal after radiation. Radiated tissue does not heal well, as I am finding out. I underwent chemo/rad for anal cancer in Aug./Sept. 08.

    I think all of us are aware that our cancer could come back and that the treatment is typically APR with colostomy. However, medical treatments have come a long way and perhaps there is a less-radical treatment out there. Dr. Catherine Eng at MD Anderson in Houston is doing lots of research on the treatment of recurrent anal cancer. Even if you can not get an appt. with her, your doctor(s) may be able to consult with her to see if there's any other options.

    I wish you all the best and hope that you will keep us updated on what you find out.

    Martha

    APR
    Martha,
    What is APR?
    Norma
  • z
    z Member Posts: 1,414 Member
    #6
    mp327 said:

    NYCer
    I'm sorry to hear that not only did you undergo surgery and treatment, but are now facing recurrence. As you probably already know, the standard treatment for recurrent anal cancer is APR with permanent colostomy. However, I would not agree to that surgery unless and until I got a second or third opinion. If the tumor is localized and small, I would definitely ask about the possibility of successful excision. I recently had 3 small benign anal warts removed and am still healing from that, which is one of the main concerns with doing surgery in the anal canal after radiation. Radiated tissue does not heal well, as I am finding out. I underwent chemo/rad for anal cancer in Aug./Sept. 08.

    I think all of us are aware that our cancer could come back and that the treatment is typically APR with colostomy. However, medical treatments have come a long way and perhaps there is a less-radical treatment out there. Dr. Catherine Eng at MD Anderson in Houston is doing lots of research on the treatment of recurrent anal cancer. Even if you can not get an appt. with her, your doctor(s) may be able to consult with her to see if there's any other options.

    I wish you all the best and hope that you will keep us updated on what you find out.

    Martha

    NYCer
    Hi NYCer,

    I am sorry you have had a recurrance, I have asked my onco about recurrance and he told me it would not recur in the same area if it were to recur. I have thought about if it did recur, and because we are constantly being scanned for recurrance it is caught so early, that if that happend to me, I would want any type of surgery before permanant colostomy. I have wondered if they have ever used the MOHS surgery on an anal cancer patient, as the tissue is slowly removed and examined in the OR until there are clear margins. I would want to explore that option with my correctol surgeon, who is a well know professor at Tampa General Hospital in Florida. I would trust him to use me as a test specimen, although I don't know that the insurance companys would allow the MOHS, as I don't believe its ever been used on an anal cancer patient. I suppose the more we learn, hopefully a second surgery would be considered curative, before proceeding to the permanant colostomy.
    I wish you well, and keep us updated.
  • mp327
    mp327 Member Posts: 4,440 Member
    #7
    nonichol said:

    APR
    Martha,
    What is APR?
    Norma

    Norma
    APR stands for abdominoperineal resection, which is the surgery performed to remove the anus, rectum and lower portion of the colon, during which a stoma is created for a permanent colostomy.

    Martha
  • z
    z Member Posts: 1,414 Member
    #8
    z said:

    NYCer
    Hi NYCer,

    I am sorry you have had a recurrance, I have asked my onco about recurrance and he told me it would not recur in the same area if it were to recur. I have thought about if it did recur, and because we are constantly being scanned for recurrance it is caught so early, that if that happend to me, I would want any type of surgery before permanant colostomy. I have wondered if they have ever used the MOHS surgery on an anal cancer patient, as the tissue is slowly removed and examined in the OR until there are clear margins. I would want to explore that option with my correctol surgeon, who is a well know professor at Tampa General Hospital in Florida. I would trust him to use me as a test specimen, although I don't know that the insurance companys would allow the MOHS, as I don't believe its ever been used on an anal cancer patient. I suppose the more we learn, hopefully a second surgery would be considered curative, before proceeding to the permanant colostomy.
    I wish you well, and keep us updated.

    NYCer
    Hi NYCer,

    I had a follow up with the professor correctol surgeon today, and asked if I had recurrance could they do other treatments beside the permanant colostomy and he said if it were small and localized yes they could remove it. Other options would be to use radiation, and last but not least chemo. Now it is reassuring that there are other options to examine before going to permanant colostomy. Let us know what you will be doing, and I have you in my thoughts and prayers. Lori
  • nlada
    nlada Member Posts: 3
    #9
    z said:

    NYCer
    Hi NYCer,

    I am sorry you have had a recurrance, I have asked my onco about recurrance and he told me it would not recur in the same area if it were to recur. I have thought about if it did recur, and because we are constantly being scanned for recurrance it is caught so early, that if that happend to me, I would want any type of surgery before permanant colostomy. I have wondered if they have ever used the MOHS surgery on an anal cancer patient, as the tissue is slowly removed and examined in the OR until there are clear margins. I would want to explore that option with my correctol surgeon, who is a well know professor at Tampa General Hospital in Florida. I would trust him to use me as a test specimen, although I don't know that the insurance companys would allow the MOHS, as I don't believe its ever been used on an anal cancer patient. I suppose the more we learn, hopefully a second surgery would be considered curative, before proceeding to the permanant colostomy.
    I wish you well, and keep us updated.

    It can return to the original area.

    "he told me it would not recur in the same area if it were to recur. I have thought about if it did recur, and because we are constantly being scanned for recurrance it is caught so early, that if that happend to me, I would want any type of surgery before permanant colostomy"

     

     

    Sorry but not true! I was originally diagnoised in'99 and had surgery that removed the tumor before going through chemo (5-FU and Mitomycin C) and 30 days of radiation plus 7 boosters. I was folled for 5 years and had no re occurance. Last yesr it came back with a vengenance in the same anal area. I had a APR and colonostomy. To get clear margins he had to remove so much tissue he was unable to close. Since Dec 2012 I have been on a wound vac to try to heal the wound and we were making great progress till I started developing the warts in the wound bed. Surgery was done to remove them but biopsy of that tissue shows my cancer has returned.

  • nlada
    nlada Member Posts: 3
    #10
    z said:

    NYCer
    Hi NYCer,

    I am sorry you have had a recurrance, I have asked my onco about recurrance and he told me it would not recur in the same area if it were to recur. I have thought about if it did recur, and because we are constantly being scanned for recurrance it is caught so early, that if that happend to me, I would want any type of surgery before permanant colostomy. I have wondered if they have ever used the MOHS surgery on an anal cancer patient, as the tissue is slowly removed and examined in the OR until there are clear margins. I would want to explore that option with my correctol surgeon, who is a well know professor at Tampa General Hospital in Florida. I would trust him to use me as a test specimen, although I don't know that the insurance companys would allow the MOHS, as I don't believe its ever been used on an anal cancer patient. I suppose the more we learn, hopefully a second surgery would be considered curative, before proceeding to the permanant colostomy.
    I wish you well, and keep us updated.

    It can return to the original area.

    "he told me it would not recur in the same area if it were to recur. I have thought about if it did recur, and because we are constantly being scanned for recurrance it is caught so early, that if that happend to me, I would want any type of surgery before permanant colostomy"

     

     

    Sorry but not true! I was originally diagnoised in'99 and had surgery that removed the tumor before going through chemo (5-FU and Mitomycin C) and 30 days of radiation plus 7 boosters. I was folled for 5 years and had no re occurance. Last yesr it came back with a vengenance in the same anal area. I had a APR and colonostomy. To get clear margins he had to remove so much tissue he was unable to close. Since Dec 2012 I have been on a wound vac to try to heal the wound and we were making great progress till I started developing the warts in the wound bed. Surgery was done to remove them but biopsy of that tissue shows my cancer has returned.

  • mp327
    mp327 Member Posts: 4,440 Member
    #11
    nlada said:

    It can return to the original area.

    "he told me it would not recur in the same area if it were to recur. I have thought about if it did recur, and because we are constantly being scanned for recurrance it is caught so early, that if that happend to me, I would want any type of surgery before permanant colostomy"

     

     

    Sorry but not true! I was originally diagnoised in'99 and had surgery that removed the tumor before going through chemo (5-FU and Mitomycin C) and 30 days of radiation plus 7 boosters. I was folled for 5 years and had no re occurance. Last yesr it came back with a vengenance in the same anal area. I had a APR and colonostomy. To get clear margins he had to remove so much tissue he was unable to close. Since Dec 2012 I have been on a wound vac to try to heal the wound and we were making great progress till I started developing the warts in the wound bed. Surgery was done to remove them but biopsy of that tissue shows my cancer has returned.

    nlada

    I'm so sorry that your cancer has returned after so many years and for all that you are currently going through.  I am now a 5-year survivor, but have fears that mine will return at some point also.  It doesn't seem logical to me that this cancer could NOT return to the area of the original tumor.  When it comes to this disease, I don't think there are any guarantees that it won't come back.  I'm so sorry that your case proves this.  I send you best wishes and prayers.

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