Just diagnosed with high grade dysplasia

warrenz1963
warrenz1963 Member Posts: 10
in Anal Cancer #1

Hello everyone, and thank you for being here.

I'm 53, male. Six weeks ago I had my first ever colonoscopy. Three polyps were found and removed, two of them were hyperplastic (?) so that's not a concern. The third turned out to be a condyloma, positive for HPV. I had a second procedure two weeks ago (flex sig) during which two more condyloma were removed. Got a call yesterday from the doc to tell me they were not cancerous but they do show "high grade dysplasia", so I'm now being referred to a colorectal surgeon for further evaluation and treatment.

While I'm waiting for the call to set up that appointment, I have of course been scouring the internet and my head is spinning with information about HPV, high grade dysplasia, and all the pursuant possibilities those diagnoses indicate.

I'm waiting for the colorectal doc appointment, and wondering what I should ask during that consultation. I tick a lot (but not all) of the risk factor boxes for anal cancer, and I'm trying not to think too far ahead, but what info should I start familiarizing myself with? Has anyone here had a similar progression to what I've had the last few weeks?

Any and all replies are greatly appreciated! Thank you!

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Comments

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    #2
    Warrenz

    Hi and welcome to the site. Sorry to hear about the dysplasia you have. My experience was at age 49 I started passing blood and my cancer was found at my colonoscopy- it was already 5cm in size. So I never had to worry about something turning in to cancer, I had had it from the get go so to speak. I don't have any specific advice or answers except to say I would be super vigalent about follow up- but it sounds like you will be. Keep us posted as you can.

  • mp327
    mp327 Member Posts: 4,440 Member
    #3
    warrenz1963

    Welcome here, but so sorry to hear about your high grade dysplasia.  I know you are searching for information and the link below will take you to an excellent site for University of California San Francisco that explains anal dysplasia, condyloma, HSIL and LSIL and the treatment.  I hope you'll find it helpful.  Hopefully, this will answer some of your questions and also prompt some questions to ask your doctor.

    http://analcancerinfo.ucsf.edu/

    In 2008, I went to a colorectal surgeon because of rectal bleeding and also to get my very first colonocsopy.  She found a tumor when she did a digital rectal exam and performed a colonoscopy two days later and took a biopsy.   I was diagnosed with anal cancer that was right on the fence between Stage 1 and Stage 2, for which I received 2 rounds of chemotherapy and 30 radiation treatments.  Two years after treatment, my colorectal surgeon found 3 very small anal condylomas during a routine 6-month exam, which were surgically removed and biopsied.  Thankfully, they were negative for cancer.  I do not know if my cancer diagnosed 2 years prior to the discovery of the condylomas started out as condyloma, but I presume so.  It is good that yours have been discovered pre-cancer and I hope that there will be some type of treatment so that they don't progress to cancer.  If you don't get satisfactory answers to your questions from the colorectal surgeon you are seeing, then if possible, I would suggest seeing Dr. Berry at UCSF.  There is a dysplasia clinic at that complex.  I have met Dr. Berry personally at a conference and he is, IMO, one of the top doctors in the country treating anal dysplasia.

    I hope you secure that appointment with the colorectal surgeon soon so you don't have to wait too long for some answers.  Please keep us posted.  The people on this site are very supportive and we will give you as much information as we can.  Take care and know that I wish you all the best.

    Martha

  • warrenz1963
    warrenz1963 Member Posts: 10
    edited June 2017 #4
    Mollymaude said:

    Warrenz

    Hi and welcome to the site. Sorry to hear about the dysplasia you have. My experience was at age 49 I started passing blood and my cancer was found at my colonoscopy- it was already 5cm in size. So I never had to worry about something turning in to cancer, I had had it from the get go so to speak. I don't have any specific advice or answers except to say I would be super vigalent about follow up- but it sounds like you will be. Keep us posted as you can.

    Thanks for reaching out! I

    Thanks for reaching out! I got an appt today with the colorectal surgeon referral, in two weeks. I'll post more as I learn more. Thanks again for being here.

  • warrenz1963
    warrenz1963 Member Posts: 10
    #5
    mp327 said:

    warrenz1963

    Welcome here, but so sorry to hear about your high grade dysplasia.  I know you are searching for information and the link below will take you to an excellent site for University of California San Francisco that explains anal dysplasia, condyloma, HSIL and LSIL and the treatment.  I hope you'll find it helpful.  Hopefully, this will answer some of your questions and also prompt some questions to ask your doctor.

    http://analcancerinfo.ucsf.edu/

    In 2008, I went to a colorectal surgeon because of rectal bleeding and also to get my very first colonocsopy.  She found a tumor when she did a digital rectal exam and performed a colonoscopy two days later and took a biopsy.   I was diagnosed with anal cancer that was right on the fence between Stage 1 and Stage 2, for which I received 2 rounds of chemotherapy and 30 radiation treatments.  Two years after treatment, my colorectal surgeon found 3 very small anal condylomas during a routine 6-month exam, which were surgically removed and biopsied.  Thankfully, they were negative for cancer.  I do not know if my cancer diagnosed 2 years prior to the discovery of the condylomas started out as condyloma, but I presume so.  It is good that yours have been discovered pre-cancer and I hope that there will be some type of treatment so that they don't progress to cancer.  If you don't get satisfactory answers to your questions from the colorectal surgeon you are seeing, then if possible, I would suggest seeing Dr. Berry at UCSF.  There is a dysplasia clinic at that complex.  I have met Dr. Berry personally at a conference and he is, IMO, one of the top doctors in the country treating anal dysplasia.

    I hope you secure that appointment with the colorectal surgeon soon so you don't have to wait too long for some answers.  Please keep us posted.  The people on this site are very supportive and we will give you as much information as we can.  Take care and know that I wish you all the best.

    Martha

    Thank you for reaching out! I

    Thank you for reaching out! I now have an appt with the colorectal surgeon two weeks from now. And thank you for the ucsf link, I'll give it a look. I'll pass along more info after my appt. Thanks again for being here.

  • mp327
    mp327 Member Posts: 4,440 Member
    #6
    warrenz1963 said:

    Thank you for reaching out! I

    Thank you for reaching out! I now have an appt with the colorectal surgeon two weeks from now. And thank you for the ucsf link, I'll give it a look. I'll pass along more info after my appt. Thanks again for being here.

    warrenz1963

    You are most welcome.  I hope your appointment with the CR surgeon goes well.  Please keep us posted.  I wish you all the very best!

  • mxperry220
    mxperry220 Member Posts: 496 Member
    #7
    Questions I Asked

    I was diagnosed with anal cancer in 2008.  Below is a list of questions I asked my doctors.

     

    What type of cancer do I have?

     

     

     

    Is this considered a type of anal cancer or rectal cancer?

     

     

     

    Is this a common type cancer?

     

     

     

    How much of tumor removed?

     

     

     

    How much of tumor remains?

     

     

     

    Will treatments begin after tumor removal heals?

     

     

     

    How many radiation treatments will I need?

     

     

     

    How much chemo will I need?

     

     

     

    What will be frequency of treatments?

     

     

     

    How long can I expect treatments to last?

     

     

     

    What is prognosis of my cancer condition?

     

     

     

    Is this a common type cancer?

     

     

     

    What stage is my cancer?

     

     

     

    How many cases like mine have you treated?

     

     

     

    Will treatments be painful?

     

     

     

    Will I have pain medication to control pain?

     

     

     

    Should I expect hair loss?

     

     

     

    What are next steps?

     

     

     

    Will I need assisted transportation?

     

     

     

    If so, do you have list of transportation providers?

    Hope this helps.

    Mike

  • warrenz1963
    warrenz1963 Member Posts: 10
    #8
    mxperry220 said:

    Questions I Asked

    I was diagnosed with anal cancer in 2008.  Below is a list of questions I asked my doctors.

     

    What type of cancer do I have?

     

     

     

    Is this considered a type of anal cancer or rectal cancer?

     

     

     

    Is this a common type cancer?

     

     

     

    How much of tumor removed?

     

     

     

    How much of tumor remains?

     

     

     

    Will treatments begin after tumor removal heals?

     

     

     

    How many radiation treatments will I need?

     

     

     

    How much chemo will I need?

     

     

     

    What will be frequency of treatments?

     

     

     

    How long can I expect treatments to last?

     

     

     

    What is prognosis of my cancer condition?

     

     

     

    Is this a common type cancer?

     

     

     

    What stage is my cancer?

     

     

     

    How many cases like mine have you treated?

     

     

     

    Will treatments be painful?

     

     

     

    Will I have pain medication to control pain?

     

     

     

    Should I expect hair loss?

     

     

     

    What are next steps?

     

     

     

    Will I need assisted transportation?

     

     

     

    If so, do you have list of transportation providers?

    Hope this helps.

    Mike

    Thank you for reaching out,

    Thank you for reaching out, Mike. My apologies for not replying sooner. This list is very helpful, thank you!

  • warrenz1963
    warrenz1963 Member Posts: 10
    #9
    Quick update:

    Quick update:

    I had a cnsultation with the colorectal surgeon this past Wednesday. I will see him again in three weeks time for a HRA and fulguration. Healing after recent flex sig and colonoscopy took much longer than expected, so I'm concerned that healing after these upcoming procedures will also take quite a bit longer than normal.

    I'm worried that colorectal surgeon will find more dysplasia than my gastroenterologist found during recent flex sig and colonoscopy. Surgeon says I'll have to return regularly because the HPV condyloma that exhibit the dysplasia are likely to return. He said as long as we stay on top of the condyloma/dysplasia it's likely I'll never develop cancer, but I'm still worried about constant probes and pokes and scrapes and biopsies.

    Has anyone here gone on to develop cancer despite vigilance with dysplasia?

  • warrenz1963
    warrenz1963 Member Posts: 10
    #10
    mp327 said:

    warren1963

    My colorectal doctor found 3 small anal condylomas 2 years after I completed my treatment for anal cancer.  I underwent fulguration under general anesthesia.  I had no problems with healing.  That said, if your healing has been compromised in the past after the exams you mentioned, then it may be a more difficult healing process for you than it was for me.  I certainly hope not though.  My fulguration procedure was done in 2010 and I have had many anoscopy exams since then and the condylomas, so far, have not returned.  I am approaching 9 years post radiation/chemo for anal cancer and, to the best of my knowledge at present, I continue to have no evidence of disease.  I don't know if I've answered your questions or not, but that is my history. 

    Thank you so much for sharing

    Thank you so much for sharing your experience. As it happens, healing after my colonoscopy and flex sig did take longer than expected, with some excess bleeding, pus, etc. I'm still uncomfortable actually. But I am pleased to hear that after fulguration your condyloma have not returned. If I may ask, how regularly do you have anoscopy done?

  • mp327
    mp327 Member Posts: 4,440 Member
    edited July 2017 #11
    warren1963

    My colorectal doctor found 3 small anal condylomas 2 years after I completed my treatment for anal cancer.  I underwent fulguration under general anesthesia.  I had no problems with healing.  That said, if your healing has been compromised in the past after the exams you mentioned, then it may be a more difficult healing process for you than it was for me.  I certainly hope not though.  My fulguration procedure was done in 2010 and I have had many anoscopy exams since then and the condylomas, so far, have not returned.  I am approaching 9 years post radiation/chemo for anal cancer and, to the best of my knowledge at present, I continue to have no evidence of disease.  I don't know if I've answered your questions or not, but that is my history. 

  • mp327
    mp327 Member Posts: 4,440 Member
    edited July 2017 #12
    warren1963

    I was having anoscopy exams every 3 months for the first several years, then my doctor had me come in every 6 months.  I asked her at the time of my last one if I could just do yearly from here on out and she agreed.  I am scheduled for my next one in September.  I think that every 3-6 months is the norm after treatment, until a certain point is reached.  The NCCN guidelines only follow people for 5 years, so I'm not sure there are any recommendations for frequency of exams after 5 years.  I wish you all the best with your upcoming procedure and hope that healing will not be compromised. 

  • warrenz1963
    warrenz1963 Member Posts: 10
    #13
    mp327 said:

    warren1963

    I was having anoscopy exams every 3 months for the first several years, then my doctor had me come in every 6 months.  I asked her at the time of my last one if I could just do yearly from here on out and she agreed.  I am scheduled for my next one in September.  I think that every 3-6 months is the norm after treatment, until a certain point is reached.  The NCCN guidelines only follow people for 5 years, so I'm not sure there are any recommendations for frequency of exams after 5 years.  I wish you all the best with your upcoming procedure and hope that healing will not be compromised. 

    Thank you again for reaching

    Thank you again for reaching out, and for sharing your experience. Many blessings to you!

  • mp327
    mp327 Member Posts: 4,440 Member
    edited July 2017 #14
    warrenz1963 said:

    Thank you again for reaching

    Thank you again for reaching out, and for sharing your experience. Many blessings to you!

    warrenz1963

    Thank you!

  • warrenz1963
    warrenz1963 Member Posts: 10
    #15
    Quick update

    I had an HRA and ablation last Thursday. The colorectal surgeon removed/ablated quite a bit of tissue. All biopsies have come back benign for cancer, so I am very pleased of course. I see the surgeon again in three weeks for a follow-up, and to create an ongoing monitoring plan. So I'm pretty happy, and also in a lot of pain from the surgery.

  • mp327
    mp327 Member Posts: 4,440 Member
    #16
    warrenz1963

    I'm very happy to hear that the news was good for you!  It's good that you are going to be followed closely in the future.  I hope you heal quickly!

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited July 2017 #17
    Warrenz

    I'm glad you don't have cancer! And I can certainly sympathize with a sore backside! Hopefully you will heal quickly!!

  • warrenz1963
    warrenz1963 Member Posts: 10
    edited July 2017 #18
    mp327 said:

    warrenz1963

    I'm very happy to hear that the news was good for you!  It's good that you are going to be followed closely in the future.  I hope you heal quickly!

    Thank you for yoour support

    Thank you for yoour support and encouragement!

  • warrenz1963
    warrenz1963 Member Posts: 10
    #19
    Mollymaude said:

    Warrenz

    I'm glad you don't have cancer! And I can certainly sympathize with a sore backside! Hopefully you will heal quickly!!

    Thank you for the kind words!

    Thank you for the kind words! The support means everything to me right now!

  • sfcharm
    sfcharm Member Posts: 16
    #20
    warrenz1963 said:

    Thank you for the kind words!

    Thank you for the kind words! The support means everything to me right now!

    High Grade Anal dysplasia Lesion

    I am also being treated for High grade anal dysplasia. I am scheduled for my surgery tomorrow morning. I wish you all the best in your journey. I will let you know how my day goes tomorrow and hopefully check in tomorrow evening. My best to you.

  • mp327
    mp327 Member Posts: 4,440 Member
    #21
    sfcharm

    I wish you all the very best for tomorrow's surgery.  Update us when you can.

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