Concerns with recurrence

pjs62
pjs62 Member Posts: 95
in Anal Cancer #1
As some of you may have read previously, I am planning on getting a second opinion for my recurrence. My big concern at this time is I'm not sure what stage my cancer is or how far its spread. (so I know a 'time frame'). My colon dr won't let me know until he does the surgery. Is this normal? I see many of you describing your cancer/tumor & its 'foreign' to me. Any suggestions how to get more information or should I wait for my 2nd opinion?
Also do any of you have experience with IU Goshen in Indiana or Cancer Centers of America in Illinois? I've talked with both & am waiting for additional info being mailed to me. I'm getting scared waiting for this 2nd opinion, like maybe I'm wasting time & should just have the surgery....but I feel there must be another option my dr isn't looking at.

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    Concerns with recurrence
    How was your recurrence detected? PET scan? If so, obtain a copy of the narrative report, along with a CD of the actual films. Be sure to take these with you to any appt. for a 2nd. opinion. Your doctors should be able to give you answers to your questions regarding staging before you have the surgery. I would insist on knowing! I would get that information from your current docs before you go for that 2nd. opinion consult. You need to be as well-informed on your status as you possibly can. I can not give you any information on IU Goshen, but I used to live in Indianapolis and I know the IU hospital there is a very good teaching hospital. I believe that's where Lance Armstrong was treated for his cancer. I'm sure Cancer Treatment Centers of America have saved many lives, but I would not go to one for the simple reason that they are run like a business more than a healthcare facility. I know of one person who was treated for stage III anal cancer at the one in Chicago and sadly, she did not beat her disease. If I were in your shoes, my first choice would be Dr. Eng at MDA in Houston--no doubts.
  • 7243
    7243 Member Posts: 249 Member
    #3
    Second Opinion
    I'm not sure how your recurrence was found, PET CT, Biopsy, How? Nonetheless, you absolutely should be told the location of recurrence, such as local/anal canal, inguinal nodes, etc. Treatment is based on the area of recurrence. You should know the stage of the disease based on diagnostic and pathological studies prior to any surgery.

    Get a copy of the NCCN guideline for the treatment of anal cancer on this website: www.NCCN.org ... it outlines treatment of the disease and treatment of recurrence. See my response to your other discussion item similar topic.

    I suggest you get a copy of your entire medical record to include all physician notes and summary of your medical oncology and radiation oncology treatment provided. You should have a copy of all lab results, scans, x-rays and have copies of PET, PET CT, CTs and x-rays on a disc or DVD. I keep a copy of my entire medical record at all times ... to include the DVDs/discs. This is just a good idea and your record is your property, although you'll likely have to pay for some portions of it if not all of it.

    The facility where you'll have a second opinion will or should request all of your medical records, pathology slides and scans from your doctors and/or cancer center, however I would hand-carry your entire medical record with you to include your scans and reports to your appointment.

    It is a good idea to seek a second or third opinion from a center who deals very specifically with anal cancer.

    I hope this is helpful in some way ...
  • pjs62
    pjs62 Member Posts: 95
    #4
    mp327 said:

    Concerns with recurrence
    How was your recurrence detected? PET scan? If so, obtain a copy of the narrative report, along with a CD of the actual films. Be sure to take these with you to any appt. for a 2nd. opinion. Your doctors should be able to give you answers to your questions regarding staging before you have the surgery. I would insist on knowing! I would get that information from your current docs before you go for that 2nd. opinion consult. You need to be as well-informed on your status as you possibly can. I can not give you any information on IU Goshen, but I used to live in Indianapolis and I know the IU hospital there is a very good teaching hospital. I believe that's where Lance Armstrong was treated for his cancer. I'm sure Cancer Treatment Centers of America have saved many lives, but I would not go to one for the simple reason that they are run like a business more than a healthcare facility. I know of one person who was treated for stage III anal cancer at the one in Chicago and sadly, she did not beat her disease. If I were in your shoes, my first choice would be Dr. Eng at MDA in Houston--no doubts.

    concerns...
    I had a colonoscopy with biopsy & that's how my recurrence was found. My PET didn't show anything else. I'll be checking with my chemo & radiology docs for complete reports from past & present to keep with me.
    I read thru info from CTCA & seen tehy have state of the art treatments even if recurrence. But not sure about going yet. I have checked into MDA but waiting until I hear back from Goshen since their just over an hr away (similar to Indi but has Intagrated Medical team similar to CTCA but Indi doesn't have yet). I have Goshen getting my records then will let me know if they can help me.
  • 7243
    7243 Member Posts: 249 Member
    #5
    pjs62 said:

    concerns...
    I had a colonoscopy with biopsy & that's how my recurrence was found. My PET didn't show anything else. I'll be checking with my chemo & radiology docs for complete reports from past & present to keep with me.
    I read thru info from CTCA & seen tehy have state of the art treatments even if recurrence. But not sure about going yet. I have checked into MDA but waiting until I hear back from Goshen since their just over an hr away (similar to Indi but has Intagrated Medical team similar to CTCA but Indi doesn't have yet). I have Goshen getting my records then will let me know if they can help me.

    clinical trials - evidence based practice
    Check out this site re; recurrent anal cancer ... http://www.uchospitals.edu/specialties/cancer/patient-stories/lena-lower-gi.html

    As a reminder, APR has been the standard of care for "slavage" therapy for recurrent anal cancer, so that's why they are leaning that way. This is based on Dr. Nigro's research done in the 70's. Unfortunately there has been little research in the area of anal cancer treatment given it is rare and in such low numbers. Clinical trials are also something to consider.

    The university of Chicago cancer center is doing some interesting things with recurrent anal cancer. copy and paste the link. This is a story of a female with recurrent anal cancer.

    Can I ask how large was your initial tumor, what was the grade of your tumor and did they tell you your stage? When were you first treated?

    Take good care.
  • mp327
    mp327 Member Posts: 4,440 Member
    #6
    7243 said:

    clinical trials - evidence based practice
    Check out this site re; recurrent anal cancer ... http://www.uchospitals.edu/specialties/cancer/patient-stories/lena-lower-gi.html

    As a reminder, APR has been the standard of care for "slavage" therapy for recurrent anal cancer, so that's why they are leaning that way. This is based on Dr. Nigro's research done in the 70's. Unfortunately there has been little research in the area of anal cancer treatment given it is rare and in such low numbers. Clinical trials are also something to consider.

    The university of Chicago cancer center is doing some interesting things with recurrent anal cancer. copy and paste the link. This is a story of a female with recurrent anal cancer.

    Can I ask how large was your initial tumor, what was the grade of your tumor and did they tell you your stage? When were you first treated?

    Take good care.

    Link
    7243, Thanks for posting this link. I'm going to check it out!
  • mp327
    mp327 Member Posts: 4,440 Member
    #7
    7243 said:

    clinical trials - evidence based practice
    Check out this site re; recurrent anal cancer ... http://www.uchospitals.edu/specialties/cancer/patient-stories/lena-lower-gi.html

    As a reminder, APR has been the standard of care for "slavage" therapy for recurrent anal cancer, so that's why they are leaning that way. This is based on Dr. Nigro's research done in the 70's. Unfortunately there has been little research in the area of anal cancer treatment given it is rare and in such low numbers. Clinical trials are also something to consider.

    The university of Chicago cancer center is doing some interesting things with recurrent anal cancer. copy and paste the link. This is a story of a female with recurrent anal cancer.

    Can I ask how large was your initial tumor, what was the grade of your tumor and did they tell you your stage? When were you first treated?

    Take good care.

    7243
    I found this article very interesting. However, I'm not sure this patient had recurrent anal cancer. It sounds to me like she had residual cancer that the chemo/rad did not dissolve. However, this same surgical technique might be successful in cases of recurrence as well. Thanks again for posting.
  • pjs62
    pjs62 Member Posts: 95
    #8
    7243 said:

    Second Opinion
    I'm not sure how your recurrence was found, PET CT, Biopsy, How? Nonetheless, you absolutely should be told the location of recurrence, such as local/anal canal, inguinal nodes, etc. Treatment is based on the area of recurrence. You should know the stage of the disease based on diagnostic and pathological studies prior to any surgery.

    Get a copy of the NCCN guideline for the treatment of anal cancer on this website: www.NCCN.org ... it outlines treatment of the disease and treatment of recurrence. See my response to your other discussion item similar topic.

    I suggest you get a copy of your entire medical record to include all physician notes and summary of your medical oncology and radiation oncology treatment provided. You should have a copy of all lab results, scans, x-rays and have copies of PET, PET CT, CTs and x-rays on a disc or DVD. I keep a copy of my entire medical record at all times ... to include the DVDs/discs. This is just a good idea and your record is your property, although you'll likely have to pay for some portions of it if not all of it.

    The facility where you'll have a second opinion will or should request all of your medical records, pathology slides and scans from your doctors and/or cancer center, however I would hand-carry your entire medical record with you to include your scans and reports to your appointment.

    It is a good idea to seek a second or third opinion from a center who deals very specifically with anal cancer.

    I hope this is helpful in some way ...

    concerns
    Thank you for this information. Although I was diagnosed in 2010 & went thru treatment, we still had no idea what information/records to get from the doctors. We just trusted the doctors & cancer center because my 3 doctors were in agreement & things happened so fast from being diagnosed to treatment. This time after being 'blindsided' by a recurrence (or was there residual left over?) we are researching & asking alot more questions. (I had a colonoscopy/biopsy show the cancer & PET didn't show any spread)
    At this time, my records are being sent to IU Goshen Hospital for a 2nd opinion. If they can't do anything different then the surgery already recommended by my colon dr then we'll check on MD Anderson. I am also getting copies of records to carry with me.
  • pjs62
    pjs62 Member Posts: 95
    #9
    mp327 said:

    7243
    I found this article very interesting. However, I'm not sure this patient had recurrent anal cancer. It sounds to me like she had residual cancer that the chemo/rad did not dissolve. However, this same surgical technique might be successful in cases of recurrence as well. Thanks again for posting.

    mp327
    I'm not sure if its recurrent or residual cancer either. I am hoping another cancer center/doctors will be more help & give us more answers. I've discovered more radiation techniques that we'll be checking into. I refuse to give in to surgery without checking into 2nd or even 3rd opinions first.
  • mp327
    mp327 Member Posts: 4,440 Member
    #10
    pjs62 said:

    mp327
    I'm not sure if its recurrent or residual cancer either. I am hoping another cancer center/doctors will be more help & give us more answers. I've discovered more radiation techniques that we'll be checking into. I refuse to give in to surgery without checking into 2nd or even 3rd opinions first.

    Yes to 2nd. & 3rd. opinions
    I agree, you should check out all possible options before consenting to surgery. Please keep us posted as things unfold.
  • 7243
    7243 Member Posts: 249 Member
    #11
    mp327 said:

    7243
    I found this article very interesting. However, I'm not sure this patient had recurrent anal cancer. It sounds to me like she had residual cancer that the chemo/rad did not dissolve. However, this same surgical technique might be successful in cases of recurrence as well. Thanks again for posting.

    yes, martha ... you're right re; residual vs recurrent. I know there are clinical trials going on re; recurrent anal cancer sponsored by the NCI. Trials are always important to ask physicians about.

    I so appreciate this discussion board.
  • lizdeli
    lizdeli Member Posts: 569 Member
    #12
    pjs62 said:

    concerns
    Thank you for this information. Although I was diagnosed in 2010 & went thru treatment, we still had no idea what information/records to get from the doctors. We just trusted the doctors & cancer center because my 3 doctors were in agreement & things happened so fast from being diagnosed to treatment. This time after being 'blindsided' by a recurrence (or was there residual left over?) we are researching & asking alot more questions. (I had a colonoscopy/biopsy show the cancer & PET didn't show any spread)
    At this time, my records are being sent to IU Goshen Hospital for a 2nd opinion. If they can't do anything different then the surgery already recommended by my colon dr then we'll check on MD Anderson. I am also getting copies of records to carry with me.

    Second opinion at MDA
    pjs62
    Chances are that MDA will want to see you before they make any determination about next course of action. They tend to want to run their own tests first then evaluate and set out the course of action. It could take awhile to get into MDA so if you are seriously considering it I would have your doctor reach out for the referral. It can be done online. Just wanted to share this in case you are considering MDA for another opinion.
    Wishing you the best,
    Liz

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