anal squamous cell carcinoma in situ in perianal area

oncology12345

Hi, I am new here and am looking for advice. I have just been diagnosed with the above carcinoma in situ and would like to know if others have had this, what kind of treatment you had and what the outcome was for you? Any other advice also appreciated. I had a growth for about three years- ignoring it - and was really was shocked when I finally dealt with it and heard this. I've had a biopsy and am awaiting a scan and then my doctor is going to do surgery to excise it. I am very anxious about it all and having to wait for scans etc. is making me worse.

K8M

Hi
So sorry to hear that you

Hi

So sorry to hear that you find yourself in this situation.

See my posts under  "Newbie from the UK. Diagnosed with AIN iii this afternoon" which describes my journey so far. Page 2 of this section of the forum I think.

I am recovering well after my latest excision.

Let me know once you have had a read through if you have any specific questions not covered and if I can help, I will surely try.

Remember that this is an early diagnosis and it is debatable as to whether this is or isn't the beginnings of cancer. It is certainly microscopic disease but prognosis is good. The hardest thing so far for me is realising I will never be entirely free of the worry of it returning, but that is surely the case for anyone touched by disease.

You will also see that during my diagnosis, I was also diagnosed with Sarcoidosis, I strongly believe that this auto-immune disorder is connected and would be interested in learning if you had any similar medical history of this kind.

Best regards

K8M 

oncology12345

K8M said:

Hi
So sorry to hear that you

Hi

So sorry to hear that you find yourself in this situation.

See my posts under  "Newbie from the UK. Diagnosed with AIN iii this afternoon" which describes my journey so far. Page 2 of this section of the forum I think.

I am recovering well after my latest excision.

Let me know once you have had a read through if you have any specific questions not covered and if I can help, I will surely try.

Remember that this is an early diagnosis and it is debatable as to whether this is or isn't the beginnings of cancer. It is certainly microscopic disease but prognosis is good. The hardest thing so far for me is realising I will never be entirely free of the worry of it returning, but that is surely the case for anyone touched by disease.

You will also see that during my diagnosis, I was also diagnosed with Sarcoidosis, I strongly believe that this auto-immune disorder is connected and would be interested in learning if you had any similar medical history of this kind.

Best regards

K8M 

Thanks for your reply. I feel

Thanks for your reply. I feel really alone with this disease and haven't told anyone yet as I feel too embarassed. I don't know what I'll say when I eventually go into hospital to have it removed but I guess I'll come up with something. I've spent another night tossing and turning last night and worrying. I am interested to see that ain3 seems to be the same as carcinoma in situ - I didn't realise that. I knew before I went to the doctor that I had HPV but never expected what he said. I thought it was a skin tag or a pile or something else. I have been worrying about the mri and having it excised. How did the healing go with having it excised?? Did it heal normally and does it look ok? Did you get any infections?  The doctor seems to think it will be fine as it's quite small but I don't feel so confident. How long was it between having it diagnosed and having it excised. I've been getting diarrohea in the last few weeks - I think due to stress but am worried maybe it's spreading. How long was recovery? 

Im sorry for the barrage of questions but there are very few to ask. I am doing normal things daily but feel totally abnormal. Life feels turned upside down. I read all your posts and they were great. This website is great, there are so few places to get information.

qv62

oncology12345

Sorry you have to go through this, I was diagnosed in 2009 with the same and went through countless surgeries for 5 years before treatment. After the excision ask them if you have packing before you leave the hospital. I wasn't told about it the first time and thought parts of my insides came out during a bm. Words of advice post excision, take your stool softeners and pain meds, use the sitz bath often and take it easy. Wishing you the best, let me know if I can answer anything else for you.

K8M

Hi
Carcinoma In Situ, AIN3 or

Hi

Carcinoma In Situ, AIN3 or AINiii also High-grade squamous intraepithelial lesions are referred to or HSIL

It sounds as if your surgery will be very manageable.

Your surgeon will explain this to you. They should give you details about any packing but if it is perianal I doubt you will have any. My surgeon stated that it would be "difficult" for 10 days. By day 9 I was thinking, ok I have had enough now and by day 10, I was feeling so much better.

Straight after surgery, I didnt have a bowel movement for fear for about 2 days. It stings when you do, but you must. Jump straight in to a hand held shower and rinse off - do not use soap.

Go at least once a day, so that your body remembers how.

I use blue gauze for the first few days as was dripping a little blood. After a few days I was down to 5 cm x 5 cm gauze changing about 5 -10 times a day but with very little show. It is important to keep clean. I used a anti-microbial wash after about the first week / two weeks - around the area.

They gave me codeine etc. but I didnt take it as it makes you constipated. Paracetomol doesnt and I took this and ibuprofen one hour before a bowel movement. For me it was important to start to understand where I was in the healing process and I had no pain between bowel movements just discomfort during and a bit of stinging afterwards.

It will be longer before you feel 100% but I was back at work after 10 days (it was a bit tricky, if you can take 15 days do.)

Take it one step at a time. i.e. just deal with each day.

I am now back swimming and am planning to try rock climbing in a couple of weeks.

Everyone's story is different and whilst you cannot necessarily influence the outcome, you will feel better and more able to cope if you get fit and healthy before the surgery. It does help the speed of recovery. Also look at your diet for afterwards - you need a soft poo. Stool softeners again every day without fail and also drink lots and lots of water between meals. I get up now as a rule and drink 75cl before I even get out of bed.

I didnt eat meat for 3 months, eating soft fish, fruit and veg.

Let me know if there is anything else you would like to know

You will be fine and looked after....

K8M

oncology12345

K8M said:

Hi
Carcinoma In Situ, AIN3 or

Hi

Carcinoma In Situ, AIN3 or AINiii also High-grade squamous intraepithelial lesions are referred to or HSIL

It sounds as if your surgery will be very manageable.

Your surgeon will explain this to you. They should give you details about any packing but if it is perianal I doubt you will have any. My surgeon stated that it would be "difficult" for 10 days. By day 9 I was thinking, ok I have had enough now and by day 10, I was feeling so much better.

Straight after surgery, I didnt have a bowel movement for fear for about 2 days. It stings when you do, but you must. Jump straight in to a hand held shower and rinse off - do not use soap.

Go at least once a day, so that your body remembers how.

I use blue gauze for the first few days as was dripping a little blood. After a few days I was down to 5 cm x 5 cm gauze changing about 5 -10 times a day but with very little show. It is important to keep clean. I used a anti-microbial wash after about the first week / two weeks - around the area.

They gave me codeine etc. but I didnt take it as it makes you constipated. Paracetomol doesnt and I took this and ibuprofen one hour before a bowel movement. For me it was important to start to understand where I was in the healing process and I had no pain between bowel movements just discomfort during and a bit of stinging afterwards.

It will be longer before you feel 100% but I was back at work after 10 days (it was a bit tricky, if you can take 15 days do.)

Take it one step at a time. i.e. just deal with each day.

I am now back swimming and am planning to try rock climbing in a couple of weeks.

Everyone's story is different and whilst you cannot necessarily influence the outcome, you will feel better and more able to cope if you get fit and healthy before the surgery. It does help the speed of recovery. Also look at your diet for afterwards - you need a soft poo. Stool softeners again every day without fail and also drink lots and lots of water between meals. I get up now as a rule and drink 75cl before I even get out of bed.

I didnt eat meat for 3 months, eating soft fish, fruit and veg.

Let me know if there is anything else you would like to know

You will be fine and looked after....

K8M

Thanks for the replies, I

Thanks for the replies, I just feel so worried. Scans are now done and I'll be getting the result this week coming. I've googled an awful lot to see if surgery is the only option for this and as far as I can see it is.Im so afraid of doing damage and something going wrong. I imagine having a bowel movement and the stitches breaking or getting an infection. I'm curious why would a person need packing???

7243

oncology12345 said:

Thanks for the replies, I

Thanks for the replies, I just feel so worried. Scans are now done and I'll be getting the result this week coming. I've googled an awful lot to see if surgery is the only option for this and as far as I can see it is.Im so afraid of doing damage and something going wrong. I imagine having a bowel movement and the stitches breaking or getting an infection. I'm curious why would a person need packing???

Colorectal surgeon with experience I hope

Hello dear one ... Be certain your surgeon is a board certified colo-rectal surgeon with experience in this disease.  A reminder ... I'm sure you've looked at this already!  Find a surgeon you trust 100 %.  

 

Best wishes ... Looks like great experience and input from other friends here on the site.  Worry is so normal ... I'm sorry for your sense of being alone ... I struggled with that too.  Find good and loving friends , tell them and let them support you.  No need to tell all...this is your life.  But be sure to find those special friends ... Support so important.  

Take care ... One step at a time. 

 

Check this out if u have not seen ... UCSF leads the way

http://www.ucsfhealth.org/clinics/dysplasia/index.html

This gentleman has done much research and many publications ... Perhaps a second opinion here at UCSF?  Just a thought ... Don't rush into surgery if not ready ... Ck all options. I only suggest ... Follow mefical advice.  But once cut ... You cannot undo.  Look at 20 plus publications ... and He is the founder and president of the International Anal Neoplasia Society and president-elect of the International Papillomavirus Society. 

http://www.ucsfhealth.org/joel.palefsky

 

 

mp327

7243 said:

Colorectal surgeon with experience I hope

Hello dear one ... Be certain your surgeon is a board certified colo-rectal surgeon with experience in this disease.  A reminder ... I'm sure you've looked at this already!  Find a surgeon you trust 100 %.  

 

Best wishes ... Looks like great experience and input from other friends here on the site.  Worry is so normal ... I'm sorry for your sense of being alone ... I struggled with that too.  Find good and loving friends , tell them and let them support you.  No need to tell all...this is your life.  But be sure to find those special friends ... Support so important.  

Take care ... One step at a time. 

 

Check this out if u have not seen ... UCSF leads the way

http://www.ucsfhealth.org/clinics/dysplasia/index.html

This gentleman has done much research and many publications ... Perhaps a second opinion here at UCSF?  Just a thought ... Don't rush into surgery if not ready ... Ck all options. I only suggest ... Follow mefical advice.  But once cut ... You cannot undo.  Look at 20 plus publications ... and He is the founder and president of the International Anal Neoplasia Society and president-elect of the International Papillomavirus Society. 

http://www.ucsfhealth.org/joel.palefsky

 

 

7243

Thanks for posting the links to UCSF and also Dr. Palefsky.  UCSF would be my first choice if I were diagnosed with anal dysplasia.  I virtually know two people who have been treated for dysplasia and follow-up for anal cancer by Dr. Berry at the UCSF Dysplasia Clinic.  They think he is wonderful.

AJKK

Detection?

Hi, I have yet to be seen but hoping to find out from those who have had rectal or anal squamous cells how they were screened? Where did you go? Can the ER do any of the testing or does it require a specific field of doctor(s)? Signs and symptoms? I was diagnosed with cervical displaysia level 4, 2 years ago. I had no idea that you could contract HPV rectally. I am fearful it was missed and have constant discomfort, a burning sensation, and constant nausea. I am also beside myself with worry and fear. Any advice or words of wisdom would be beyond appreciated.

mp327

AJKK said:

Detection?

Hi, I have yet to be seen but hoping to find out from those who have had rectal or anal squamous cells how they were screened? Where did you go? Can the ER do any of the testing or does it require a specific field of doctor(s)? Signs and symptoms? I was diagnosed with cervical displaysia level 4, 2 years ago. I had no idea that you could contract HPV rectally. I am fearful it was missed and have constant discomfort, a burning sensation, and constant nausea. I am also beside myself with worry and fear. Any advice or words of wisdom would be beyond appreciated.

AJKK

I'm sorry to hear that you have already dealt with cervical dysplasia and I hope you are doing well in that regard now.  As for anal dysplasia or cancer, IMO the best specialist to consult would be a colorectal doctor.  Do not go to the ER!  Colorectal doctors can perform a digital rectal exam and an anoscope, which is a short scope used to view the anal canal.  They can also do a thorough exam of the perianal area, looking for any external lesions.  If you are having discomfort and burning, you should definitely get checked.  Itching is also a common symptom.

At the time of my diagnosis of anal cancer Stage 1-2 in 2008, I had been experiencing bleeding with BM's, chronic constipation, a feeling of never being completely emptied out after a BM, abdominal discomfort and bloating, fatigue and weight loss.  I was completely shocked when I went to a colorectal doctor for a consult visit prior to her doing my first colonoscopy when she stated she wanted to examine me that day after taking my history and hearing my symptoms.  After the exam (DRE & anoscope), she told me she was 99% sure I had cancer.  I had the colonoscopy 2 days later, at which time she did a biopsy, which came back a few days later showing squamous cell cancer.  

Unfortunately, the general belief of most people is that unless you have had anal sex, you are not at risk for anal dysplasia/cancer.  However, this is SO not true, as many of us have learned.  Due to the design of the female anatomy, things being close together down there, it is quite possible.  Anal dysplasia can lead to anal cancer, so I hope you will get thoroughly checked out by a colorectal specialist who can do the appropriate exams and has experience in dealing with these two.  I wish you all the best and hope that you will get the all clear. 

sandysp

AJKK said:

Detection?

Hi, I have yet to be seen but hoping to find out from those who have had rectal or anal squamous cells how they were screened? Where did you go? Can the ER do any of the testing or does it require a specific field of doctor(s)? Signs and symptoms? I was diagnosed with cervical displaysia level 4, 2 years ago. I had no idea that you could contract HPV rectally. I am fearful it was missed and have constant discomfort, a burning sensation, and constant nausea. I am also beside myself with worry and fear. Any advice or words of wisdom would be beyond appreciated.

symptoms

So sorry to hear you have found your self in this unhappy development. I just have this thought to add:  Your nauseau may be caused from nerves related to being stressed out about this development.

Please make sure you tell your doctor about your nausea and don't hesitate to ask for something to calm you.

I have another friend that was diagnosed with cancer and couldn't even keep the stuff they give you to drink for a CT scan or PET Scan. Later a psychiatrist who specializes in lung cancer (which is what she has at stage IV) prescribed Adavan, and her nausea left. She gave up earlier on when taking chemo because of the nausea which no anti nausea medicine helped, but the adavan may have nelped her with.  She is now refusing treatment, taking Adavan and of course whatever else they give her for pain on hospice. But I can only wonder if they had treated her nausea with adding Adavan sooner, if she could have at least seen the scan to see if the chemo that she took which affected her so badly had any effect on the tumor(s).

I tend to get diarreah when I am nervous about stuff and queasy feelings in my stomach but not full fledged nausea. I don't think the nausea is a symptom coming directly from your carcinoma but from your reaction to the carcinoma which is perfectly natural. In these situations, sometimes we have to do things we would not ordinarily do, like take a tranquilizer.

We will all be here for you through these days ahead.

Do listen to Martha. She is "right on" as usual.

All the best,

Sandy

jcruz

sandysp said:

symptoms

So sorry to hear you have found your self in this unhappy development. I just have this thought to add:  Your nauseau may be caused from nerves related to being stressed out about this development.

Please make sure you tell your doctor about your nausea and don't hesitate to ask for something to calm you.

I have another friend that was diagnosed with cancer and couldn't even keep the stuff they give you to drink for a CT scan or PET Scan. Later a psychiatrist who specializes in lung cancer (which is what she has at stage IV) prescribed Adavan, and her nausea left. She gave up earlier on when taking chemo because of the nausea which no anti nausea medicine helped, but the adavan may have nelped her with.  She is now refusing treatment, taking Adavan and of course whatever else they give her for pain on hospice. But I can only wonder if they had treated her nausea with adding Adavan sooner, if she could have at least seen the scan to see if the chemo that she took which affected her so badly had any effect on the tumor(s).

I tend to get diarreah when I am nervous about stuff and queasy feelings in my stomach but not full fledged nausea. I don't think the nausea is a symptom coming directly from your carcinoma but from your reaction to the carcinoma which is perfectly natural. In these situations, sometimes we have to do things we would not ordinarily do, like take a tranquilizer.

We will all be here for you through these days ahead.

Do listen to Martha. She is "right on" as usual.

All the best,

Sandy

nausea, anxiety and ativan

Interesting that you mentioned ativan.  It was one of the three drugs prescribed to me to try for nausea during my treatment.  And the nurse practioner doing my patient education session also said "and use it for anxiety anytime you need it".  It definitely helped at that time and I still take it as I need.  My anxiety and panic pre-existed the cancer and have re-emerged as symptoms of depression.

Janet