Newbie from the UK. Diagnosed with AIN iii this afternoon

24

Comments

  • K8M
    K8M Member Posts: 55 Member
    #22
    Thank you. The findings were

    Thank you. The findings were somewhat unexpected! More questions and fewer answers.

    My consultant was really surprised to find me looking so fit and healthy.

    AIN stands for Anal Intraepithelial Neoplasia, it is graded as Carcinoma In Situ and aslo called High Grade Intraepithelial Dysplasia.AIN iii is the grade where the dysplasia is evident in the full thickness of the skins layers. It means effectively that all of the relevant skin in that area is abnormal and damaged, but it is not cancer at this stage.

    I'm going to start looking into some breathing exercises whilst I wait for my next referral.

  • Marynb
    Marynb Member Posts: 1,118
    #23
    K8M said:

    Thank you. The findings were

    Thank you. The findings were somewhat unexpected! More questions and fewer answers.

    My consultant was really surprised to find me looking so fit and healthy.

    AIN stands for Anal Intraepithelial Neoplasia, it is graded as Carcinoma In Situ and aslo called High Grade Intraepithelial Dysplasia.AIN iii is the grade where the dysplasia is evident in the full thickness of the skins layers. It means effectively that all of the relevant skin in that area is abnormal and damaged, but it is not cancer at this stage.

    I'm going to start looking into some breathing exercises whilst I wait for my next referral.

    K8M
    Well, that is terrific news!! I am so glad you don't have cancer. I am hoping they can treat you and get you back to normal very soon! I think liver cysts are pretty common. I do have them and they do MRI's for monitoring. I have seen all of my scans and at this point, I almost have too much information about all the ticking time bombs inside me!

    I ljust love that you are having champagne and strawberries in preparation of Wimbledon! Here, across the Pond, I used to throw breakfast at Wimbledon parties! Enjoy! Try not to worry. All will be well!
  • qv62
    qv62 Member Posts: 434 Member
    #24
    K8M said:

    Thank you. The findings were

    Thank you. The findings were somewhat unexpected! More questions and fewer answers.

    My consultant was really surprised to find me looking so fit and healthy.

    AIN stands for Anal Intraepithelial Neoplasia, it is graded as Carcinoma In Situ and aslo called High Grade Intraepithelial Dysplasia.AIN iii is the grade where the dysplasia is evident in the full thickness of the skins layers. It means effectively that all of the relevant skin in that area is abnormal and damaged, but it is not cancer at this stage.

    I'm going to start looking into some breathing exercises whilst I wait for my next referral.

    K8M

    I just read through your thread and want to wish yu all the best in your journey, I have been battling carcinoma insitu for over 4 years, many biopsies and multiple surgeries, it becomes difficult at times but keep the faith, this board has been a wonderful source for me, I hope it will be for you too. I'm told my case is somewhat unique as to the amount of recurrences and how quickly they occur, my latest biopsies show micro invasion, this is a long road but here you will not travel it alone.

  • K8M
    K8M Member Posts: 55 Member
    #25
    Thanks QV62. Sorry to hear

    Thanks QV62. Sorry to hear that you have been suffering this for some time. I had a bit of a wobble this morning because it is quite difficult just getting on with a normal day. Whenever I think the itching or pain (mostly itching with me) might go away, its then time for another BM (which varies in degree of pain). It's also difficult trying to make sure I am having BM's at home (because of work). Thankfully control is good at the moment.

    I haven't heard from either Guys or St Thomas' in respect of my referrals. MRI is tomorrow though so, I guess that they think that examination of the liver / spleen is the priority.

    Do you have any tips for dealing with the irritation? They have given me Instillagel (Lidocaine Hydrochloride 2g/Chlorhexidine Gluconate Solution .25g/Methyl Hydroxybenzonate 0.06g/Propyl Hydroxybenzonate 0.025g) but they hardly come in handbag sized syringes!

    In all seriousness, though I do wonder whether it is not better to let my body work it out / find its balance? Whats your opinion?  

    Also, any tips on diet? I started off being very good and eating lots of soft veggies etc. but quickly got bored and it is tricky to always have time to prepare fresh veg etc. I'm back on it this weekend though. Courgettes in garlic with sundried toms and mixed grains, and I've also made aubergines in onion & tomato.

    The waiting is hard. I'd really like to know where / how much of the canal is affected. The perianal I can see for myself (with a bit of gymnastics!) but I think it would help to have some understanding of widespread the problem is internally. Certainly I don't seem to have healed properly since they took the polyp back in May; symptoms have been worse, and not better.

    The share sale has completed at work and I met the MD who I will be working with. Really need to be getting on with treatment and getting fit again as he seems like a tyrant. I wont have much exposure to him until Aug. I wonder whether I can get the NHS moving by then!!

    Have you had surgery and/or ablation?

     

  • TraceyUSA
    TraceyUSA Member Posts: 316
    #26
    K8M said:

    Thanks QV62. Sorry to hear

    Thanks QV62. Sorry to hear that you have been suffering this for some time. I had a bit of a wobble this morning because it is quite difficult just getting on with a normal day. Whenever I think the itching or pain (mostly itching with me) might go away, its then time for another BM (which varies in degree of pain). It's also difficult trying to make sure I am having BM's at home (because of work). Thankfully control is good at the moment.

    I haven't heard from either Guys or St Thomas' in respect of my referrals. MRI is tomorrow though so, I guess that they think that examination of the liver / spleen is the priority.

    Do you have any tips for dealing with the irritation? They have given me Instillagel (Lidocaine Hydrochloride 2g/Chlorhexidine Gluconate Solution .25g/Methyl Hydroxybenzonate 0.06g/Propyl Hydroxybenzonate 0.025g) but they hardly come in handbag sized syringes!

    In all seriousness, though I do wonder whether it is not better to let my body work it out / find its balance? Whats your opinion?  

    Also, any tips on diet? I started off being very good and eating lots of soft veggies etc. but quickly got bored and it is tricky to always have time to prepare fresh veg etc. I'm back on it this weekend though. Courgettes in garlic with sundried toms and mixed grains, and I've also made aubergines in onion & tomato.

    The waiting is hard. I'd really like to know where / how much of the canal is affected. The perianal I can see for myself (with a bit of gymnastics!) but I think it would help to have some understanding of widespread the problem is internally. Certainly I don't seem to have healed properly since they took the polyp back in May; symptoms have been worse, and not better.

    The share sale has completed at work and I met the MD who I will be working with. Really need to be getting on with treatment and getting fit again as he seems like a tyrant. I wont have much exposure to him until Aug. I wonder whether I can get the NHS moving by then!!

    Have you had surgery and/or ablation?

     

    K8

    I've been following your posts and am sorry to hear all that's going on with you but I'm glad you don't have an anal cancer diagnosis.  After I had surgery, I have painful BM's and found that a sitz bath really helped.  (Sitting is a warm bathtub also provided great relief.) I use baby wipes (unscented, sensitive type) instead of toilet paper.  Hydrocortisone cream (which is over the counter in the US) may help the itching.  My doctor also told me that applying a thin layer of Vaseline (petroleum jelly) on prior to BM would help.  

  • Marynb
    Marynb Member Posts: 1,118
    #27
    K8M said:

    Thanks QV62. Sorry to hear

    Thanks QV62. Sorry to hear that you have been suffering this for some time. I had a bit of a wobble this morning because it is quite difficult just getting on with a normal day. Whenever I think the itching or pain (mostly itching with me) might go away, its then time for another BM (which varies in degree of pain). It's also difficult trying to make sure I am having BM's at home (because of work). Thankfully control is good at the moment.

    I haven't heard from either Guys or St Thomas' in respect of my referrals. MRI is tomorrow though so, I guess that they think that examination of the liver / spleen is the priority.

    Do you have any tips for dealing with the irritation? They have given me Instillagel (Lidocaine Hydrochloride 2g/Chlorhexidine Gluconate Solution .25g/Methyl Hydroxybenzonate 0.06g/Propyl Hydroxybenzonate 0.025g) but they hardly come in handbag sized syringes!

    In all seriousness, though I do wonder whether it is not better to let my body work it out / find its balance? Whats your opinion?  

    Also, any tips on diet? I started off being very good and eating lots of soft veggies etc. but quickly got bored and it is tricky to always have time to prepare fresh veg etc. I'm back on it this weekend though. Courgettes in garlic with sundried toms and mixed grains, and I've also made aubergines in onion & tomato.

    The waiting is hard. I'd really like to know where / how much of the canal is affected. The perianal I can see for myself (with a bit of gymnastics!) but I think it would help to have some understanding of widespread the problem is internally. Certainly I don't seem to have healed properly since they took the polyp back in May; symptoms have been worse, and not better.

    The share sale has completed at work and I met the MD who I will be working with. Really need to be getting on with treatment and getting fit again as he seems like a tyrant. I wont have much exposure to him until Aug. I wonder whether I can get the NHS moving by then!!

    Have you had surgery and/or ablation?

     

    K8
    Dealing with uncertainty is very difficult. I have had cancer twice now and seems I may have more cancer to battle, but waiting for test results again. What I have decided to do is live each day, live the life you have been given. Sounds like you feel pretty well, so go ahead and do what you want to do. Today is today. What may be ahead, none of us ever really know. You might ask the doctor for some meds to deal with the itching. Some here have taken Benadryl with good results. It makes me sleepy, so I can't take it. Maybe a topical cream? I hope that there is a treatment protocol that is effective for your diagnosis. It seems that you could be in it for the long haul. I really wonder how precancer cells can be treated so they don't turn cancerous? Do they remove them? Do they treat with chemo and radiation? What is the plan?
  • qv62
    qv62 Member Posts: 434 Member
    #28
    Hi K8 sorry for the delayed

    Hi K8 sorry for the delayed response, I just got back from vacation yesterday, I hope you are doing somewhat better by now, as mentioned by other posters the sitz baths are wonderful I have the plastic insert that goes into the toilet seat  (one in each bathroom) I also use the lidocane periodically, and desitin when things get raw, I went for months of physical therapy due to loss of sphincter control from all the surgeries, I have had resectoins and skin graphing, tumors removed, biopsies etc. lost count but did not deny myself of pain meds, I know some will tell you to avoid them but I neede to avoid the pain, I take Konsyl daily and mix lots of veggies in my vitamix, stool softners are also part of my routine post surgery, right now I am classified as micro invasive, pretty much just waiting for this ugly disease to become more agressive before I take on the chemo/radiation, feel free to message me at anytime, I am rooting for you !!!

     

  • K8M
    K8M Member Posts: 55 Member
    #29
    Good (ish) News (more than one health condition)

    The MRI scan has revealed “good” news in that the lesions appear suggestive of Granulomas involving liver and spleen. The registrar explained that granulomas are benign tumours, affecting youngish people (!)

    MRI still not being a firm diagnosis, but the most likely diagnosis is a condition called Sarcoidosis. The lung team will establish this as I think in respect of Sarcoidosis the lungs are the biggest issue. I asked also about Tuberculosis and this cannot be ruled out either. Granuloma conditions, include TB, but then my exposure risk to TB makes this unlikely.

    Likely Procedure – Fine Needle inserted into granulomas to obtain a sample and have a look under a microscope. In respect of the procedure they will take a risk based approach by selecting one of the Granulomas posing the least invasive risk but with the highest chance of a successful sample being taken (and deciding whether this should be Spleen, liver or lung or more than one). This does still not give a 100% specific diagnosis but is a much better indicator.

    The procedure is not without some risks (bleeding / discomfort) but this would be the only way to confirm the diagnosis. The procedure is usually carried out by a specialist radiologist and they will decide on the sample to be taken as they would be the person carrying out the procedure.

    I  will be discussed again at the next MDT (tpmprrow, Monday 29th)

     

    This suggested diagnosis is completely separate to the AIN3 diagnosis – AIN3 is not related to the Sarcoidosis. For interest he said it is very unusual to have a precancerous condition, and metastatic cancer.

    Whilst medical science is rarely exact and so it is important not to rule anything out at too early a stage, this is really the best news I could have hoped for in respect of the liver and spleen.

    They are going to chase up my referrals to the lung team at Guys and St Thomas’. I asked as to whether it was likely that they were waiting for the results of the MRI before booking me in and the answer was that yes this was likely.

    We discussed history again (Heartburn / TMJ). Sarcoidosis can cause a sort of arthritic type condition / inflammation that can affect the jaw.

    They may consider a PET scan (the one with the sugar water and the hour-long lie down!) but he thinks this unlikely and that I have had all of the imaging that they think is necessary at this time. They will give me a “Safety” follow up appointment in 2 weeks’ time to make sure referrals have happened.

     

  • pializ
    pializ Member Posts: 508 Member
    #30
    K8M said:

    Good (ish) News (more than one health condition)

    The MRI scan has revealed “good” news in that the lesions appear suggestive of Granulomas involving liver and spleen. The registrar explained that granulomas are benign tumours, affecting youngish people (!)

    MRI still not being a firm diagnosis, but the most likely diagnosis is a condition called Sarcoidosis. The lung team will establish this as I think in respect of Sarcoidosis the lungs are the biggest issue. I asked also about Tuberculosis and this cannot be ruled out either. Granuloma conditions, include TB, but then my exposure risk to TB makes this unlikely.

    Likely Procedure – Fine Needle inserted into granulomas to obtain a sample and have a look under a microscope. In respect of the procedure they will take a risk based approach by selecting one of the Granulomas posing the least invasive risk but with the highest chance of a successful sample being taken (and deciding whether this should be Spleen, liver or lung or more than one). This does still not give a 100% specific diagnosis but is a much better indicator.

    The procedure is not without some risks (bleeding / discomfort) but this would be the only way to confirm the diagnosis. The procedure is usually carried out by a specialist radiologist and they will decide on the sample to be taken as they would be the person carrying out the procedure.

    I  will be discussed again at the next MDT (tpmprrow, Monday 29th)

     

    This suggested diagnosis is completely separate to the AIN3 diagnosis – AIN3 is not related to the Sarcoidosis. For interest he said it is very unusual to have a precancerous condition, and metastatic cancer.

    Whilst medical science is rarely exact and so it is important not to rule anything out at too early a stage, this is really the best news I could have hoped for in respect of the liver and spleen.

    They are going to chase up my referrals to the lung team at Guys and St Thomas’. I asked as to whether it was likely that they were waiting for the results of the MRI before booking me in and the answer was that yes this was likely.

    We discussed history again (Heartburn / TMJ). Sarcoidosis can cause a sort of arthritic type condition / inflammation that can affect the jaw.

    They may consider a PET scan (the one with the sugar water and the hour-long lie down!) but he thinks this unlikely and that I have had all of the imaging that they think is necessary at this time. They will give me a “Safety” follow up appointment in 2 weeks’ time to make sure referrals have happened.

     

    Good news

    All looking good so far for you. I have heard of sarcoidosis but don't know much about it. Maybe more info on patient.co.uk? Hope that helps, although I guess you have done your research already.  Wishing you all the best, Liz

  • mp327
    mp327 Member Posts: 4,440 Member
    #31
    K8M said:

    Good (ish) News (more than one health condition)

    The MRI scan has revealed “good” news in that the lesions appear suggestive of Granulomas involving liver and spleen. The registrar explained that granulomas are benign tumours, affecting youngish people (!)

    MRI still not being a firm diagnosis, but the most likely diagnosis is a condition called Sarcoidosis. The lung team will establish this as I think in respect of Sarcoidosis the lungs are the biggest issue. I asked also about Tuberculosis and this cannot be ruled out either. Granuloma conditions, include TB, but then my exposure risk to TB makes this unlikely.

    Likely Procedure – Fine Needle inserted into granulomas to obtain a sample and have a look under a microscope. In respect of the procedure they will take a risk based approach by selecting one of the Granulomas posing the least invasive risk but with the highest chance of a successful sample being taken (and deciding whether this should be Spleen, liver or lung or more than one). This does still not give a 100% specific diagnosis but is a much better indicator.

    The procedure is not without some risks (bleeding / discomfort) but this would be the only way to confirm the diagnosis. The procedure is usually carried out by a specialist radiologist and they will decide on the sample to be taken as they would be the person carrying out the procedure.

    I  will be discussed again at the next MDT (tpmprrow, Monday 29th)

     

    This suggested diagnosis is completely separate to the AIN3 diagnosis – AIN3 is not related to the Sarcoidosis. For interest he said it is very unusual to have a precancerous condition, and metastatic cancer.

    Whilst medical science is rarely exact and so it is important not to rule anything out at too early a stage, this is really the best news I could have hoped for in respect of the liver and spleen.

    They are going to chase up my referrals to the lung team at Guys and St Thomas’. I asked as to whether it was likely that they were waiting for the results of the MRI before booking me in and the answer was that yes this was likely.

    We discussed history again (Heartburn / TMJ). Sarcoidosis can cause a sort of arthritic type condition / inflammation that can affect the jaw.

    They may consider a PET scan (the one with the sugar water and the hour-long lie down!) but he thinks this unlikely and that I have had all of the imaging that they think is necessary at this time. They will give me a “Safety” follow up appointment in 2 weeks’ time to make sure referrals have happened.

     

    K8M

    I, too, have granulomas in my lungs and also a benign spot on my liver.  My lung granulomas are thought to be a result of a history of histoplasmosis, which I never even knew I had.  This is a condition that is caused by inhaling spores in the soil when the dirt is tilled up for planting.  People who live or grew up in agricultural areas, such as myself, are more at risk.  It is a benign condition, at least in my case, and no longer active, as my granulomas are calcified (or old).  Perhaps this could also be a factor in your condition, perhaps not, but I thought I would mention it.  I hope that the FNB will be successful and provide the answers you and your doctors are seeking.  May it be benign and nothing sinister.  Please let us know.

  • K8M
    K8M Member Posts: 55 Member
    #32
    Day Surgery 2

    Hi all

    So after a few administrative challenges, I am now booked in to have local excision of the AINiii in the perianal region and am set for surgery on 10th under the care of the regional anal cancer specialist who I met this week and who was fabulous. I only hope he carries out the procedure personally.

    I was offered the next stage operation i.e. wide circular complete excision and skin grafts replacing all of the skin up to the dentate line but thankfully this was thought to extensive for me at this stage. I was shown what the scars from this would look like and was pleased to see that this demonstrated what looks like truly excellent surgical work.

    I know it sounds vain and ingrateful but I hate the fact that I have to elect for surgery knowing that I will probably never have a "pretty" bottom anymore. I am still nervous that post surgery will be worse than before and that I will end up worse and not better off. I suppose I havent come to terms with the fact that the skin is effectively inrecoverable.

    I also don't really understand how the healing process is going to work. They are making a wide local excision but wont use stitches? Confused as if my skin is not prone to good healing,,,it just doesnt make sense to me. I need to get hold of the nurses.

    I seem to have developed a small tear / suspected fissure which is possibly why it a BM seems to be more uncomfortable now than it did 2 weeks post surgery.

    On the Sarcoidosis, my lung function tests seemed to go well but I did have a chance to see my scans and the ground glass opacity is everywhere which is a bit scary. I assume I must be in full "flare". Negative here is that if they put me on steroids this will impact my immune system and potentially mean the AINiii is more likely to return. I'm hoping therefore  I can avoid prednisone.

    Doing all I can now to stay fit and healthy as I wasnt expecting the surgery to be booked so quickly. Good news but scary. 7-10 days recovery or so I am told. 3 months back to normal.

    I emailed Dr Berry's details to my consultant (Thanks MP327) - I thought it wouldnt hurt. I noted that UHSF are doing clinical study on Chinese Medicine which is interesting.

    QVC62 - for your interest:

    Arnebia Indigo Jade Pearl

    1/4 teaspoon of the cream twice daily for 48 weeks

    weekly acupuncture and moxibustion

     


     

    Four out of nine participants have experienced complete or partial regression of their lesions

     

  • mp327
    mp327 Member Posts: 4,440 Member
    #33
    K8M said:

    Day Surgery 2

    Hi all

    So after a few administrative challenges, I am now booked in to have local excision of the AINiii in the perianal region and am set for surgery on 10th under the care of the regional anal cancer specialist who I met this week and who was fabulous. I only hope he carries out the procedure personally.

    I was offered the next stage operation i.e. wide circular complete excision and skin grafts replacing all of the skin up to the dentate line but thankfully this was thought to extensive for me at this stage. I was shown what the scars from this would look like and was pleased to see that this demonstrated what looks like truly excellent surgical work.

    I know it sounds vain and ingrateful but I hate the fact that I have to elect for surgery knowing that I will probably never have a "pretty" bottom anymore. I am still nervous that post surgery will be worse than before and that I will end up worse and not better off. I suppose I havent come to terms with the fact that the skin is effectively inrecoverable.

    I also don't really understand how the healing process is going to work. They are making a wide local excision but wont use stitches? Confused as if my skin is not prone to good healing,,,it just doesnt make sense to me. I need to get hold of the nurses.

    I seem to have developed a small tear / suspected fissure which is possibly why it a BM seems to be more uncomfortable now than it did 2 weeks post surgery.

    On the Sarcoidosis, my lung function tests seemed to go well but I did have a chance to see my scans and the ground glass opacity is everywhere which is a bit scary. I assume I must be in full "flare". Negative here is that if they put me on steroids this will impact my immune system and potentially mean the AINiii is more likely to return. I'm hoping therefore  I can avoid prednisone.

    Doing all I can now to stay fit and healthy as I wasnt expecting the surgery to be booked so quickly. Good news but scary. 7-10 days recovery or so I am told. 3 months back to normal.

    I emailed Dr Berry's details to my consultant (Thanks MP327) - I thought it wouldnt hurt. I noted that UHSF are doing clinical study on Chinese Medicine which is interesting.

    QVC62 - for your interest:

    Arnebia Indigo Jade Pearl

    1/4 teaspoon of the cream twice daily for 48 weeks

    weekly acupuncture and moxibustion

     


     

    Four out of nine participants have experienced complete or partial regression of their lesions

     

    K8M

    No one looks forward to surgery and I'm sure I would feel the same way as you do--anxious.  I hope the doctor who is the specialist in this field will, indeed, be the one who performs your surgery.  I know the thought of having a bottom that might not look as pretty as it once did is a worry, but the way I see it, function is the main concern.  From what you've stated, the recovery period seems relatively short. 

    I hope Dr. Berry will provide some information to your medical team if needed.  I have heard nothing but good things about him and his expertise.  I have given his name to quite a few people on different support sites. 

    I wish you all the best with the surgery and hope you'll let us know how it went as soon as you are up to it.  I will be very interested in knowing how internal skin grafts such as are planned for you will work, as this is a procedure I've not heard of.  Know that I will be thinking all good thoughts for you! 

  • Marynb
    Marynb Member Posts: 1,118
    #34
    K8M said:

    Day Surgery 2

    Hi all

    So after a few administrative challenges, I am now booked in to have local excision of the AINiii in the perianal region and am set for surgery on 10th under the care of the regional anal cancer specialist who I met this week and who was fabulous. I only hope he carries out the procedure personally.

    I was offered the next stage operation i.e. wide circular complete excision and skin grafts replacing all of the skin up to the dentate line but thankfully this was thought to extensive for me at this stage. I was shown what the scars from this would look like and was pleased to see that this demonstrated what looks like truly excellent surgical work.

    I know it sounds vain and ingrateful but I hate the fact that I have to elect for surgery knowing that I will probably never have a "pretty" bottom anymore. I am still nervous that post surgery will be worse than before and that I will end up worse and not better off. I suppose I havent come to terms with the fact that the skin is effectively inrecoverable.

    I also don't really understand how the healing process is going to work. They are making a wide local excision but wont use stitches? Confused as if my skin is not prone to good healing,,,it just doesnt make sense to me. I need to get hold of the nurses.

    I seem to have developed a small tear / suspected fissure which is possibly why it a BM seems to be more uncomfortable now than it did 2 weeks post surgery.

    On the Sarcoidosis, my lung function tests seemed to go well but I did have a chance to see my scans and the ground glass opacity is everywhere which is a bit scary. I assume I must be in full "flare". Negative here is that if they put me on steroids this will impact my immune system and potentially mean the AINiii is more likely to return. I'm hoping therefore  I can avoid prednisone.

    Doing all I can now to stay fit and healthy as I wasnt expecting the surgery to be booked so quickly. Good news but scary. 7-10 days recovery or so I am told. 3 months back to normal.

    I emailed Dr Berry's details to my consultant (Thanks MP327) - I thought it wouldnt hurt. I noted that UHSF are doing clinical study on Chinese Medicine which is interesting.

    QVC62 - for your interest:

    Arnebia Indigo Jade Pearl

    1/4 teaspoon of the cream twice daily for 48 weeks

    weekly acupuncture and moxibustion

     


     

    Four out of nine participants have experienced complete or partial regression of their lesions

     

    K8
    I don't know anything about this procedure at all. I do hope that you have skilled doctors. It sounds like you have some good confidence in the surgeon.

    Sounds like you won't have the standard radiation and chemo regimen? Or is that in addition?

    Stay strong and take very good care of yourself now. I hope you have supportive family nearby to help you recover. You will be in my thoughts and prayers on the 10th!

    Hang in there!
  • qv62
    qv62 Member Posts: 434 Member
    #35
    K8M said:

    Day Surgery 2

    Hi all

    So after a few administrative challenges, I am now booked in to have local excision of the AINiii in the perianal region and am set for surgery on 10th under the care of the regional anal cancer specialist who I met this week and who was fabulous. I only hope he carries out the procedure personally.

    I was offered the next stage operation i.e. wide circular complete excision and skin grafts replacing all of the skin up to the dentate line but thankfully this was thought to extensive for me at this stage. I was shown what the scars from this would look like and was pleased to see that this demonstrated what looks like truly excellent surgical work.

    I know it sounds vain and ingrateful but I hate the fact that I have to elect for surgery knowing that I will probably never have a "pretty" bottom anymore. I am still nervous that post surgery will be worse than before and that I will end up worse and not better off. I suppose I havent come to terms with the fact that the skin is effectively inrecoverable.

    I also don't really understand how the healing process is going to work. They are making a wide local excision but wont use stitches? Confused as if my skin is not prone to good healing,,,it just doesnt make sense to me. I need to get hold of the nurses.

    I seem to have developed a small tear / suspected fissure which is possibly why it a BM seems to be more uncomfortable now than it did 2 weeks post surgery.

    On the Sarcoidosis, my lung function tests seemed to go well but I did have a chance to see my scans and the ground glass opacity is everywhere which is a bit scary. I assume I must be in full "flare". Negative here is that if they put me on steroids this will impact my immune system and potentially mean the AINiii is more likely to return. I'm hoping therefore  I can avoid prednisone.

    Doing all I can now to stay fit and healthy as I wasnt expecting the surgery to be booked so quickly. Good news but scary. 7-10 days recovery or so I am told. 3 months back to normal.

    I emailed Dr Berry's details to my consultant (Thanks MP327) - I thought it wouldnt hurt. I noted that UHSF are doing clinical study on Chinese Medicine which is interesting.

    QVC62 - for your interest:

    Arnebia Indigo Jade Pearl

    1/4 teaspoon of the cream twice daily for 48 weeks

    weekly acupuncture and moxibustion

     


     

    Four out of nine participants have experienced complete or partial regression of their lesions

     

    interesting

    K8M, thanks for the info and links, I just checked them out, very interesting, I see my oncologist on Wed and will question her, the last topical they put me on was the Aldera, I had a horrible experience I did not tolerate it well and it was clearly unsuccessful, not only did it make me very sick I was in extreme pain as well. I will look further into your info and see what she has to say. As for your surgery, I wish you all the best, please keep us posted, I am amazed they can do this without stitches, that is wonderful, I had a wide excision with skin grafting, and flaps however I had nearly 100 stitches (or so it seemed) they were quite painful to be taken out, I remember nearly fainting, my hospital stay was a week and I was not allowed to sit for six weeks, it seems your procedure will be much more streamlined with a quicker recovery, I am happy to hear that for you, best wishes, please keep us posted

  • K8M
    K8M Member Posts: 55 Member
    #36
    Hopefully not as extensive surgery

    Hi

    I think my post must have been a little misleading. But although I am having a more localised procedure wihtout grafts, I'm still not sure how the healing is going to work without stitches and just leaving an open wound. I need to get in touch with the hospital so I can prepare accordingly as I am worried about infection. It always seems very odd to me how little information you get about surgical procedures. Some scribbled notes on a hand written file about what they are planning to do that you don't get a copy of. I did receive a copy of a letter sent to my GP but it was written in haste and gives more about the historical background than the procedure proper.

    The good news is that my (I hope) surgeon is giving a talk on AIN in November and so is clearly very interested currently in the subject.

    Im still confused about whether the Sarcoid could have caused this. I don't know whether I will ever know but it makes me worry that surgery is the wrong option. But then AINiii is not reversible but sarcoid skin lesions are so I guess this is just wishful thinking on my part.

     

    The only problem I can see with trialling the Chinese Medicine option is that you seem to need to be stable for a whole year. Intersting to see whether they can develop this further though and ID any active ingredients. If I thought I could go on with my present symptoms without surgery then I would try this over Aldara as Imiquimod seems like something from some sort of medieval torture garden. It has been suggested that I may have to use it post surgery for small areas later on if they dont manage to remove everything and if it comes back.

     

     

  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    #37
    K8M said:

    Hopefully not as extensive surgery

    Hi

    I think my post must have been a little misleading. But although I am having a more localised procedure wihtout grafts, I'm still not sure how the healing is going to work without stitches and just leaving an open wound. I need to get in touch with the hospital so I can prepare accordingly as I am worried about infection. It always seems very odd to me how little information you get about surgical procedures. Some scribbled notes on a hand written file about what they are planning to do that you don't get a copy of. I did receive a copy of a letter sent to my GP but it was written in haste and gives more about the historical background than the procedure proper.

    The good news is that my (I hope) surgeon is giving a talk on AIN in November and so is clearly very interested currently in the subject.

    Im still confused about whether the Sarcoid could have caused this. I don't know whether I will ever know but it makes me worry that surgery is the wrong option. But then AINiii is not reversible but sarcoid skin lesions are so I guess this is just wishful thinking on my part.

     

    The only problem I can see with trialling the Chinese Medicine option is that you seem to need to be stable for a whole year. Intersting to see whether they can develop this further though and ID any active ingredients. If I thought I could go on with my present symptoms without surgery then I would try this over Aldara as Imiquimod seems like something from some sort of medieval torture garden. It has been suggested that I may have to use it post surgery for small areas later on if they dont manage to remove everything and if it comes back.

     

     

    Ain

    I don't even know how to say what I want to say.    When I hear these stories of people caught early in diagnosis, I wonder what is worse, to have full blown cancer and the tx and the side effects or being dragged thru these procedures over over and over again.  My heart goes out to all of you.  I pray that it works for all of you.

  • K8M
    K8M Member Posts: 55 Member
    #38
    Post Surgery Update - AIN iii

    Surgery Date - 12/09/2103

    Healing at this stage post surgery is “Amazing”.

    There is no evidence at all of Stenosis

    Before and After Pictures of pre and post surgery made very clear why healing is slow going! It is still painful but now manageable, although I still really need to be at home to "go". I dare not try anything other.

    I am advised that repeat Cervical Smears are not necessary. Field change relates to Vulval Cancer and not to Cervical (VIN not CIN)

    All of the tissue that was removed was, as expected, confirmed as AINiii. Histology to be re-checked in respect of HPV 16 & 18 as not stated on notes. Frustrating as I was verbally told that I was negative at the initial clinic but it seems to me to be important to reconfirm this.

    Consultant was lovely as always: “You can go swimming – you can do whatever you like. “ Amen to that - so grateful!

    And the most important reason for re-posting (sorry if this has already been discussed):

    There is some talk of a new Vaccination that has had a positive effect on people who have similar conditions (VIN) that has caused not only prevention but regression of lesions. It is likely that it may have the same effect on AIN. Don’t get too excited but there is hope for the future....see link....

    http://www.isa-pharma.com/2013/09/isa-pharmaceuticals-initiates-phase-iii-clinical-trial-isa101-patients-anal-intraepithelial-neoplasia-ain/

  • mitchelsdaly
    mitchelsdaly Member Posts: 13
    #39
    anal cancer

    Hi, I'm hoping this message reaches the newbie from Britain. First off you've come to the right place.  I have been cancer free for a year now from stage 2/3 anal cancer.  I don't have a lot to say other than your life as you know it is going to change, but I will tell you this.  As strange as it sounds there are gifts that come with experiencing a life altering diagnosis.  

      You sound like a very intelligent woman.  Do not concern yourself with what people think.  If they respond with any sense of judgement it says much more about them then it does you.  I am a gay man  who is hiv positive, as well as hpv positive, hence the anal cancer.  I, thankfully, have experienced very little what I perceived to be ignorance on the part of those I've had to deal with.  Strangely the only person that did not respond correctly, or with any sense of appropriateness was, and I do say do say was, as in past tense, was my proctologist.

      I wish you all the best during this holiday season.  Know that there are alot of people out there, myself included that wish you the best during your journey.  Do not forget that one of the best things about the diagnosis of anal cancer, is that it is one of the most treatable forms of cancer. Upwards of 85 percent success rate.  So put that in your stocking this Christmas................................Sincerely, Mitch

  • Clm83
    Clm83 Member Posts: 1
    #40
    mitchelsdaly said:

    anal cancer

    Hi, I'm hoping this message reaches the newbie from Britain. First off you've come to the right place.  I have been cancer free for a year now from stage 2/3 anal cancer.  I don't have a lot to say other than your life as you know it is going to change, but I will tell you this.  As strange as it sounds there are gifts that come with experiencing a life altering diagnosis.  

      You sound like a very intelligent woman.  Do not concern yourself with what people think.  If they respond with any sense of judgement it says much more about them then it does you.  I am a gay man  who is hiv positive, as well as hpv positive, hence the anal cancer.  I, thankfully, have experienced very little what I perceived to be ignorance on the part of those I've had to deal with.  Strangely the only person that did not respond correctly, or with any sense of appropriateness was, and I do say do say was, as in past tense, was my proctologist.

      I wish you all the best during this holiday season.  Know that there are alot of people out there, myself included that wish you the best during your journey.  Do not forget that one of the best things about the diagnosis of anal cancer, is that it is one of the most treatable forms of cancer. Upwards of 85 percent success rate.  So put that in your stocking this Christmas................................Sincerely, Mitch

    AIN iii also

    I am a 30 yr old female recently diagnosed with AIN iii. My symptoms started in July 2013 when I had uncontrollable anal itching. I went so far as to have my boyfriend shine a flashlight to check for pin worms.  Twice I was misdiagnosed as having hemorrhoids since I had a skin tag. Finally, after many nights of poor sleep I decided to just see a colon rectal specialist. After a month of trying a cream he did some biopsies. 3 of the 4 punch biopsies came back AIN iii. The crazy thing is that I never have anal sex, I was vaccinated with gardisil at 23, I do not smoke, all of my paps were negative until 3 mos ago, I did a FDA STD screening in May which came back negative for everything, and a year ago my mother underwent treatment for stage 2 anal cancer caused by HPV. I do not see how these doctors cannot see some type of correlation between my mother and I basically having the same disease...but that's beside the point.

    On the positive side I am so happy that this was found before I had to under chemo and radiation like my Mother. It was so hard to watch her go through that. The strange thing is that my mother had abnormal paps from the time that she was 24. She neglected paps for several yrs before her age 50 colonoscopy and the doctor found the anal tumor just inside her anus During the colonoscopy. We are all so lucky that she is cancer free at this time. However, I am scared to death of all of the waiting and uncertainty For her as well as myself.

    K8, I am surprised infrared coagulation and CO2 laser ablation were not offered as treatments for you. I was referred to a specialist( I will see him on 12/17) to have the anal version of a colposcopy and one or both of these treatments. Background info-Supposedly, these are the new treatments being used but it is difficult to find someone trained in them. I live by Johns Hopkins and only 2 doctors in my state actually offer this procedure. Since GYN's have been treating CIN for years the colon rectal doctors actually have to be trained by a GYN to learn how to perform these procedures. K8, It was explained to me what you had was the more extreme approach. How are you healing? Did they get all of the lesions? Do you need anymore follow-up? I just really want to get this taken care of so that I do not have to go through what my mother went through.

    I guess it feels good to talk to someone who might have an idea what I am going through. It just feels like I am waiting to get cancer. I go about my day and I am fine, then I realize "Wow! I have this thing going on in my body!" I feel like I am becoming a hyperchondriac... Every little ache pain and I think the worst! The google searches are killing me, too. The stigma and shame around this. I really do not feel comfortable telling people about my diagnosis and HPV. Do NOT get me wrong I am so happy that this was found so early, but it's as if when you tell people that you have late stage precancer they have this you will be fine attitude. Part of me feels a little alone through all of this....like no one understands that I need some type of support. 

    K8, I wish you all of the love and healing thoughts that I have! We are in such a strange place and yet we are so lucky that they did not find cancer.

  • mp327
    mp327 Member Posts: 4,440 Member
    #41
    Clm83 said:

    AIN iii also

    I am a 30 yr old female recently diagnosed with AIN iii. My symptoms started in July 2013 when I had uncontrollable anal itching. I went so far as to have my boyfriend shine a flashlight to check for pin worms.  Twice I was misdiagnosed as having hemorrhoids since I had a skin tag. Finally, after many nights of poor sleep I decided to just see a colon rectal specialist. After a month of trying a cream he did some biopsies. 3 of the 4 punch biopsies came back AIN iii. The crazy thing is that I never have anal sex, I was vaccinated with gardisil at 23, I do not smoke, all of my paps were negative until 3 mos ago, I did a FDA STD screening in May which came back negative for everything, and a year ago my mother underwent treatment for stage 2 anal cancer caused by HPV. I do not see how these doctors cannot see some type of correlation between my mother and I basically having the same disease...but that's beside the point.

    On the positive side I am so happy that this was found before I had to under chemo and radiation like my Mother. It was so hard to watch her go through that. The strange thing is that my mother had abnormal paps from the time that she was 24. She neglected paps for several yrs before her age 50 colonoscopy and the doctor found the anal tumor just inside her anus During the colonoscopy. We are all so lucky that she is cancer free at this time. However, I am scared to death of all of the waiting and uncertainty For her as well as myself.

    K8, I am surprised infrared coagulation and CO2 laser ablation were not offered as treatments for you. I was referred to a specialist( I will see him on 12/17) to have the anal version of a colposcopy and one or both of these treatments. Background info-Supposedly, these are the new treatments being used but it is difficult to find someone trained in them. I live by Johns Hopkins and only 2 doctors in my state actually offer this procedure. Since GYN's have been treating CIN for years the colon rectal doctors actually have to be trained by a GYN to learn how to perform these procedures. K8, It was explained to me what you had was the more extreme approach. How are you healing? Did they get all of the lesions? Do you need anymore follow-up? I just really want to get this taken care of so that I do not have to go through what my mother went through.

    I guess it feels good to talk to someone who might have an idea what I am going through. It just feels like I am waiting to get cancer. I go about my day and I am fine, then I realize "Wow! I have this thing going on in my body!" I feel like I am becoming a hyperchondriac... Every little ache pain and I think the worst! The google searches are killing me, too. The stigma and shame around this. I really do not feel comfortable telling people about my diagnosis and HPV. Do NOT get me wrong I am so happy that this was found so early, but it's as if when you tell people that you have late stage precancer they have this you will be fine attitude. Part of me feels a little alone through all of this....like no one understands that I need some type of support. 

    K8, I wish you all of the love and healing thoughts that I have! We are in such a strange place and yet we are so lucky that they did not find cancer.

    Clm83

    I am so happy you have found this site for support.  The people here are great and will virtually hold your hand through this ordeal.  I'm so glad you have found a doctor who uses cutting-edge treatment for AIN.  It certainly is a hard place to be, like you say, sort of waiting for cancer to develop.  But I hope your doctor can get you through this without you having to undergo the treatment that most of us have had and also your mother.  I'm so sorry she had to go through chemo/rad--it is no easy journey.  And I'm sure it is hard to watch a loved one suffer through the pain.  I hope she is doing well and that her cancer-free status continues for the rest of her life.

    There is much comfort in being able to communicate with someone else who is dealing with this same condition, so I hope you and K8M can share information.  I, myself, have undergone coagulation for anal condyloma--lesions that were benign, but have the potential of turning cancerous--back in September 2010.  It was not as bad as I had anticipated and I healed very quickly.  However, I was a little worried about healing, since I have had radiation.  Since that time, there has been no return of these lesions to date and I hope they never return.  Even though I am over 5 years out of treatment, I am still getting checked by my colorectal doctor every 6 months with DRE and anoscope.

    As for the connection between HPV and anal cancer, I think that has been proven by now.  However, and I can only speak for myself, I do get quite angry when people presume that you have to have had anal sex in order to get this disease.  It is so not true.  I never did and I would guess that most women who get this disease never did either.  Unfortunately, the female anatomy lends itself to being vulnerable to this virus in the anal area.  Even during normal sex, it is quite easy to pass this virus onto the anal area.  Still, there is such a stigma that surrounds this disease, which means there needs to be more education and public awareness.  Any woman who has had sex with a partner who has previously had sex with someone else is at risk, plain and simple.  Over 80% of people, both male and female, will have acquired one or more strains of HPV by the time they are age 50.  It is nearly unavoidable.  For most people, it causes no problems, but for those of us who are not so lucky, here we are.  So, I tell you all of this to remind you not to be hard on yourself about this.  

    Please keep us posted on how you are doing.  I wish you all the best and if you need support, we're here for you! 

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