Newbie from the UK. Diagnosed with AIN iii this afternoon

Marynb

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.

Clm
I can't add much to what Martha has said, but I just want to Lend my support. My daughter had to watch me go through treatment and I know it must have been hard to watch your Mom battle this.

I am so glad that they caught this early and I do hope that the treatment works! It might be good for you to start a new thread on AIN, because there are others on this board being treated for this. It sounds like you found some good doctors to treat you with the new techniques!

I am sure this is stressful for you, so be sure to take extra good care of yourself now. Pay close attention to your diet, get plenty of sleep, drink clean water, and don't stop exercising. Give your immune system the fuel it needs to kill those abnormal cells!

Stay strong and well!

Mary

K8M

Hi Clm83
Thanks for sharing

Hi Clm83

Thanks for sharing your story. It is really useful to be able to share info openiy for all AIN sufferers who may not feel comfortable posting.

The treatment options were indeed narrow for me over here in the UK. What have your treatment experiences been like and how have the results been?

I am mindful that I have only had one surgery and would like to be ready with more information on what treatments are available in the states (and most importantly the patients experience of them in terms of recovery and improvement in symptoms).

Recovery for me has been manageable and I only have bleeding when I have a fairly large or difficult BM now. Things are so much better than before surgery and my life is back to being (mostly) enjoyable. I am also not due to see my consultant again until March which can only be a good sign that he is confident that things are going well.

I will keep my post short today as it's Christmas morning and everyone is wondering what I am doing! But please keep sharing your thoughts and I will do my best to share mine.

Much love

K8

 

 

K8M

AINiii is back

I knew it was, but it is upsetting to have it confirmed. Watch and wait for 2 months; then most likely the same surgery as last time. Initial surgery healed perfectly and i had clear margins, but 1/4 to 1/3 of the area has returned. For now, it is the waiting game again; so back to getting healthy, kicking the champagne lifestyle into touch and hitting the gym while I can before the Op.

K8

pializ

K8M said:

AINiii is back

I knew it was, but it is upsetting to have it confirmed. Watch and wait for 2 months; then most likely the same surgery as last time. Initial surgery healed perfectly and i had clear margins, but 1/4 to 1/3 of the area has returned. For now, it is the waiting game again; so back to getting healthy, kicking the champagne lifestyle into touch and hitting the gym while I can before the Op.

K8

K8

Hi K8. I too am in the UK. 

I am sorry to hear your news.  I have seen another person posting a similar experience & it seems so frustrating & painful. 

I hope they get it all again & that it doesn't return. 

Meanwhile, enjoy each day, including the gym. 

Take care

Liz x

TraceyUSA

K8M said:

AINiii is back

I knew it was, but it is upsetting to have it confirmed. Watch and wait for 2 months; then most likely the same surgery as last time. Initial surgery healed perfectly and i had clear margins, but 1/4 to 1/3 of the area has returned. For now, it is the waiting game again; so back to getting healthy, kicking the champagne lifestyle into touch and hitting the gym while I can before the Op.

K8

Sorry

Sorry to hear your news.  I had similar experiences years ago for cervical dysplasia.  I took a couple of procedures and many 3 month PAPs before I got good results.  I took vitamins to boost my immune system to help my body rid itself of the abnormal cells.  My thoughts & prayers go out to you.

mp327

K8M said:

AINiii is back

I knew it was, but it is upsetting to have it confirmed. Watch and wait for 2 months; then most likely the same surgery as last time. Initial surgery healed perfectly and i had clear margins, but 1/4 to 1/3 of the area has returned. For now, it is the waiting game again; so back to getting healthy, kicking the champagne lifestyle into touch and hitting the gym while I can before the Op.

K8

K8M

I am sorry to hear this.  It's good that you are working on your fitness though!  Thanks for keeping us posted.

oncology12345

Hi, K8M can you update on

Hi, K8M can you update on what happened to you?   How did youknow the AIN was back? What did the skin look like?

Ouch_Ouch_Ouch

News?

Hello, K8M:

I didn't know that you proper and practical Brits indulged in champagne lifestyles .^_^.  I hope that you quickly returned to it, nonetheless. After all, one can sip champagne while walking on a treadmill, you know!

Please tell us how things went and what the procedure was like. I have AIN-1, but just in case, I like to know what might be in my future.

Jolly holidays!

K8M

6 month follow up was all

6 month follow up was all clear - great news... strongly recommend staying healthy and strong during pre and post surgery periods. Good diet and exercise promote rapid healing.

A little bleeding post-BM today which always makes me nervous but that is probably the Christmas diet.

For interest my surgeon was debating the merits of HRA for early detection and treatment for AIN with a consultant from Italy and another from another London hospital in Dec. I will ask him at my March appointment how that goes.

Keeping up from time to time with all of the posts by the brave and amazing people on this site. 

Merry Christmas to you all.

mp327

K8M said:

6 month follow up was all

6 month follow up was all clear - great news... strongly recommend staying healthy and strong during pre and post surgery periods. Good diet and exercise promote rapid healing.

A little bleeding post-BM today which always makes me nervous but that is probably the Christmas diet.

For interest my surgeon was debating the merits of HRA for early detection and treatment for AIN with a consultant from Italy and another from another London hospital in Dec. I will ask him at my March appointment how that goes.

Keeping up from time to time with all of the posts by the brave and amazing people on this site. 

Merry Christmas to you all.

K8M

Wonderful news--thank you for sharing!  I wish you a Merry Christmas and a Happy New Year!

Martha

Ouch_Ouch_Ouch

K8M said:

6 month follow up was all

6 month follow up was all clear - great news... strongly recommend staying healthy and strong during pre and post surgery periods. Good diet and exercise promote rapid healing.

A little bleeding post-BM today which always makes me nervous but that is probably the Christmas diet.

For interest my surgeon was debating the merits of HRA for early detection and treatment for AIN with a consultant from Italy and another from another London hospital in Dec. I will ask him at my March appointment how that goes.

Keeping up from time to time with all of the posts by the brave and amazing people on this site. 

Merry Christmas to you all.

Hooray!

According to the University of California at San Francisco (UCSF), HRA was invented by the English. It's good that your MD wants to follow in the developers foot steps. http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/examination.html

oncology12345

update please?

Could you update on what happened to you??  My situation is very similiar to yours. I;ve had a carcinoma in situ removed, two high grade AIN and a polyp all ll in the past few years so Im feeling very worried and unsure what to do. I'd love to hear your story since?

K8M

Update

Hi

 

Happy to update, particularly if it helps others.

 

I never really fully recovered from the last excision, in that the skin never returned to normal and was a bit weepy. It’s as if the skin is trying to heal but can’t complete the process. I guess that is because ainiii is the full skin layer malformed at a molecular level.

Lower grade Aini and ainii can spontaneously heal but I have ainiii which doesn’t. That’s why it is called carcinoma in situ. 

 

It’s been liveable with, and I managed to disguise it through a short but happy relationship earlier this year; it was great to be (back in the *ahem* saddle) able to feel vaguely normal for a while. 

 

I can now feel a slight indent/ weakness under the skin where they excised the tissue which was mostly perianal. 

The lesions are back and I now have a half moon of lesions all across the top section rather than just  to one side and noticed a small lumpy sort of papule which I was concerned about.

 

So, I’m going in again for another wide area local excision and removal of this and a biopsy. 

This will be the same fornight of difficulty post surgery with 3 months to full fitness.

Histology should be available about 10 days after the tissue is removed. 

 

I’ve had another warning about stenosis, my only wobble about this is that my consult is on holiday and cannot complete the procedure himself but a colleague will perform it. 

 

If biopsy is not good news then it will be radiotherapy; but we are not there yet! 

 

What is interesting from recent discussions, is that my consultant is now wondering whether my Sarcoidosis is indeed a trigger.

Sarcoidosis is an auto-immune disease and affects the ability of macrophages to complete their normal processes. 

 

My case and presentation of ainiii and recurrence rate is v rare, but my surgeon has another female patient also with both Sarcoidosis and ainiii. I have always been convinced that they are connected.

Unfortunately, she has not had a very happy journey and has now had everything removed and a bag rather than battle through such ongoing discomfort and difficulty. 

 

The NHS in the UK is amazing but it is being sold off / commercialised by our current government. Many of us are campaigning hard against this, but the wheels appear to be in motion. I’m worried about what this will mean long term. 

 

This is now year 5 and we soldier on. I am grateful for the support I receive and remind myself often how lucky I am compared to so many others. 

 

Unfortunately  I am currently unemployed, thus is therefore a setback financially, as interviewing will not be possible until I am well enough to perform. 

 

Fingers crossed, I will be in surgery within the next fortnight, so that I can get beyond this setback

 

love to you all

 

mp327

K8M said:

Update

Hi

 

Happy to update, particularly if it helps others.

 

I never really fully recovered from the last excision, in that the skin never returned to normal and was a bit weepy. It’s as if the skin is trying to heal but can’t complete the process. I guess that is because ainiii is the full skin layer malformed at a molecular level.

Lower grade Aini and ainii can spontaneously heal but I have ainiii which doesn’t. That’s why it is called carcinoma in situ. 

 

It’s been liveable with, and I managed to disguise it through a short but happy relationship earlier this year; it was great to be (back in the *ahem* saddle) able to feel vaguely normal for a while. 

 

I can now feel a slight indent/ weakness under the skin where they excised the tissue which was mostly perianal. 

The lesions are back and I now have a half moon of lesions all across the top section rather than just  to one side and noticed a small lumpy sort of papule which I was concerned about.

 

So, I’m going in again for another wide area local excision and removal of this and a biopsy. 

This will be the same fornight of difficulty post surgery with 3 months to full fitness.

Histology should be available about 10 days after the tissue is removed. 

 

I’ve had another warning about stenosis, my only wobble about this is that my consult is on holiday and cannot complete the procedure himself but a colleague will perform it. 

 

If biopsy is not good news then it will be radiotherapy; but we are not there yet! 

 

What is interesting from recent discussions, is that my consultant is now wondering whether my Sarcoidosis is indeed a trigger.

Sarcoidosis is an auto-immune disease and affects the ability of macrophages to complete their normal processes. 

 

My case and presentation of ainiii and recurrence rate is v rare, but my surgeon has another female patient also with both Sarcoidosis and ainiii. I have always been convinced that they are connected.

Unfortunately, she has not had a very happy journey and has now had everything removed and a bag rather than battle through such ongoing discomfort and difficulty. 

 

The NHS in the UK is amazing but it is being sold off / commercialised by our current government. Many of us are campaigning hard against this, but the wheels appear to be in motion. I’m worried about what this will mean long term. 

 

This is now year 5 and we soldier on. I am grateful for the support I receive and remind myself often how lucky I am compared to so many others. 

 

Unfortunately  I am currently unemployed, thus is therefore a setback financially, as interviewing will not be possible until I am well enough to perform. 

 

Fingers crossed, I will be in surgery within the next fortnight, so that I can get beyond this setback

 

love to you all

 

K8M

OMG, I almost fell off my chair when I saw you had posted, as it's been quite awhile.  I'm so glad you checked in here, but so sorry to hear that your issues with AINIII continue and that you are about to undergo another procedure.  That is quite interesting about the sarcoidosis, especially since there is another similar case.  I agree that the connection between that and the AIN is probably there.  I hope that despite these ongoing issues, you are otherwise healthy and that your upcoming surgery will go well.  May the biopsy show no cancer.  I must say you are quite a trooper.  I'm sure many people, probably including myself, would have waived the white flag and given in to APR with colostomy.  I admire your determination to keep going, despite the setbacks.  I wish you all the very best and hope you will come back after your procedure when you feel up to giving us an update.  Take good care. 

K8M

Thanks Martha

Thanks Martha

Surgery went according to plan. Day 5 of recovery. One painful awkward BM so far (day 3 after a laxative) and am awake this morning having promoted another with a laxative. Will be glad when it is over, but grateful to have control and indications of possible full functionality. The first time I have not been itchy in Many many months. I anticipate another week of difficulty before a slight improvement, then a very long slow crawl of improvements. Grateful that my flatmate is away for a few days and I can get on top of things and hopefully into a routine of BMS and washing.

i had a look - I have three holes / open wounds this time. It does amaze me how little follow there is on wound care. My experience and refresh on google will get me through, along with a soft veg food diet and gallons of water. 

I’m nervous about histology as I felt a thickening under the skin this time, alongside normal itching and bleeding. i kept myself extremely busy with manual labour before the surgery and have a mountain of paperwork to distract me now. Distractions are good! 

mp327

K8M said:

Thanks Martha

Thanks Martha

Surgery went according to plan. Day 5 of recovery. One painful awkward BM so far (day 3 after a laxative) and am awake this morning having promoted another with a laxative. Will be glad when it is over, but grateful to have control and indications of possible full functionality. The first time I have not been itchy in Many many months. I anticipate another week of difficulty before a slight improvement, then a very long slow crawl of improvements. Grateful that my flatmate is away for a few days and I can get on top of things and hopefully into a routine of BMS and washing.

i had a look - I have three holes / open wounds this time. It does amaze me how little follow there is on wound care. My experience and refresh on google will get me through, along with a soft veg food diet and gallons of water. 

I’m nervous about histology as I felt a thickening under the skin this time, alongside normal itching and bleeding. i kept myself extremely busy with manual labour before the surgery and have a mountain of paperwork to distract me now. Distractions are good! 

K8M

Thank you so much for the update.  It sounds like recovery is a bit slow, but glad you are already seeing some improvements.  I hope that your research will give you the right information to take care of the wound.  May you get all good news when the path report comes back.  Please let me know how things go for you.  I am thinking all good thoughts and sending prayers your way!

oncology12345

Thanks for the update, I had

Thanks for the update, I had a AIN 111 POLYP REMOVED FROM MY BACK PASSAGE about 6 months ago and will soon be going for another check up - fingers crossed I might be clear for once.   I started out with a perianal growth in 2014 and have had a few procedures since then.    It seems to be very difficult to get rid of. years ago i had an abnormal smear and went to colposcopy clinic and never had a problem since. I wish it could be so simple. 

K8M

update On my journey for early stage newbies.

I have symptoms again. This time nearer my Coccyx which is interesting as I’m pretty sure my surgeon said he built up some tissue there during one of my previous ops. I’ve emailed him and await an exam.

i remembered the support here, and how important hearing the journeys of others was to me, so thought to drop out a little post.

im a little nervous as I have some weird other systems that are not localised (general malaise, rashes and some dizzy spells).

I have Sarcoidosis and thought I may be in a sarc flare: an inflammatory disease that I’m not altogether sure is not my true root cause.

if it’s more surgery (is this no. 4 or 5?) then sobeit. Hopefully healing will be quicker / should be easier in location.

Important to stay vigilant and not take anything for granted

K8M

MrsC82

I can see this is from ages ago but just wondering how you're doing? I am being treated at Homerton London for AIN2 with aldara and possible surgery and looking for fellow travellers! Hope you're well, love MrsC x

K8M

Hi MrsC82

Hope your treatment is going well. It would be good to understand it better.

A little bump in the road and the situation is a little unclear. I had a check up 2 weeks ago and during this my surgery scar tissue was mentioned but I was then told, all fine off you go, we will see you in a year.

I skipped off to celebrate but it seems my normal consultant then had a chat with the chap who had seen me that day and said that I didn’t have any scar tissue in that area. So I’ve now been booked in for a precautionary MRI.

bit of an emotional rollercoaster but I will stay positive and be grateful that it was caught and that I could still be fine.

I’ll seek to update you, when I know more.

…much love to all brave souls here who are fighting on… keep sharing the knowledge