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The Waiting

southernhound
Posts: 14
Joined: Jul 2012

A "newbie" also. Approximately 2 yrs ago, after having my gallbladder removed, it became visibly obvious that I had a rectal prolapse. Since that time I have had many ups and downs with this condition and about 3 months ago decided to have it evaulated for treatment by a colorectal surgeon.

Prior to my appointment, I had been receiving treatment from my GYN physician for what we at first thought was a yeast infection. Later after that, it was diagnosed as Lichen Planus and I used a steroid cream with negative results. Eventually, after a few biopsies, I was diagnosed with Vulvar lesions, VIN 2 and 3 and also an Anal Lesion, an AIN3. The doctor was able to biopsy this lesion without doing an anoscopy exam because the prolapse made this area accessible without the need for an instrument.

Now, I am using Iquimod (3 weeks) for the Vulvar lesions and am scheduled for an anoscopy and rectal exam by a colorectal surgeon in conjunction with the evaluation for surgery on the prolapse. My doctor says that there are other visible lesions in the anal canal that and that because of the prolapse there is more or different tissue exposed than would normally be there. Will the colorectal surgeon do more biopsies at this time or schedule surgery and biopsy more of this area at that time? Does anyone here have any experience with AIN3 and the progression from pre-cancer to cancer?

I am having a difficult time with the wait, not much longer to go though, Aug 6 is my appt. I would love to hear from anyone who has dealt with either the AIN3 or the prolapse.
Thanks

southernhound
Posts: 14
Joined: Jul 2012

I was so in hopes that I would hear from someone about the AIN3 and the anoscopy. Is it reasonable to expect that the other lesions will be precancerous or not? I am so anxious about finding out exactly what I am facing and you all seem to be so brave and confident. I can tell from reading your posts that you have been through so much, yet seem so strong. That has given me a great deal of encouragement. One minute I am calm and confident and the next I am frightened and confused. Please share your experiences at this stage.

torrance
Posts: 118
Joined: Jan 2012

I do not know anything about AIN3, but, no pun intended...I do know ALOT about anoscopes! I am sure your colorectal surgeon will do a preliminary exam and then if necessary schedule you for an exam or biopsy under anesthesia. I had the exam and biopsy under anesthesia prior to my treatment for anal cancer. It was not difficult for me and I needed no time for recovery. Like you the waiting for confirmation was the worst. I will keep you in my thoughts and prayers as you tough out this waiting period. If there is anything else I can share that might help you, just ask.

Joanne

southernhound
Posts: 14
Joined: Jul 2012

Joanne,
It was such a joy to see that someone had left me a message this morning. I am fortunate in that I have great husband, several close friends and a sister, but sometimes I find it difficult to talk with them because they don't want me to worry and I don't want them to worry. At the same time, the uncertainty is making me more than a little crazy.

I didn't realize that additional biopsies would require anesthesia. Thanks for telling me that, I will add that into my list of probable trips. The AIN3 is the term used for precancerous anal lesions. My GYN was able to biopsy a lesion due to the rectal prolapse and that was the result. I have others that need biopsies and she says that I need to find out how much tissue is affected by the abnormal cells, anal and/or rectal?
Thanks again,

Angela_K
Posts: 370
Joined: Jan 2011

A blog post from the blog I kept while on this journey. You will appreciate "The Wait."

http://assdiaries.blogspot.com/2010/11/wait.html

southernhound
Posts: 14
Joined: Jul 2012

I have been reading your Blog for over an hour, listening to music, laughing, crying. Thanks for helping me to feel something other than fear.

RoseC's picture
RoseC
Posts: 502
Joined: Jun 2011

Sorry, I don't know much about AIN3 as I was diagnosed at Stage 2. I did find a website with some information on treatment, if it will help.
http://www.aininfo.co.uk/about.htm

I guess in a way you're lucky (if it can be called lucky?) that the rectal prolapse allowed the doctors to find the precancerous lesions before they progressed to stage 1 or 2. That might be really looking on the optimistic side of things but then again, optimism helps a lot.

Yes, Angela's blog is great huh? I read it a while ago but just now went back and read it again. Thanks Angela - such a great sense of humor with honesty spread throughout.

I had biopsies twice, once after my first visit with colorectal and then later at 6 months post treatment. Both were done under anesthesia.

Sorry to not be of much help, but I surely wish you all the best and hope you'll keep us informed as to what happens.

southernhound
Posts: 14
Joined: Jul 2012

I agree with you, if I had not had this prolapse, I would know nothing about any of this. It sounds like all of you went straight to a diagnosis of cancer and right now mine is precancerous. I am still anxious to have the other lesions bisopsied and hopefully they will still be in this precancerous stage as well. I will be sure to post how things go next Monday. It sounds pretty certain that I will have to make a separate trip for the biopsies. I am so glad that you sent me a response and it means so much to hear from all of you. Thanks for the link.

RoseC's picture
RoseC
Posts: 502
Joined: Jun 2011

I wish you all the best and yes, please let us know how it goes next Monday. Whatever happens, you've come to the right place. There are so many wonderful people on this forum and they will help with advice no matter what your outcome is.

torrance
Posts: 118
Joined: Jan 2012

I know what you mean about your support system not wanting you to worry and you not wanting them to worry. Who wouldn't for goodness sake. One of the things that just kept reinforcing itself on this journey is NOT worry about the things you have NO control over. Like if it is cancer, you can't change that, what you can focus on is right now, this moment, don't waste it on worry. Focus on everything you CAN control, family, friends and yourself. Try as hard as you can to enjoy so that you will not regret time spent on worry. Focus on scheduling those appointments and keeping healthy. Don't get yourself overloaded with the whole story, focus on one phase at a time.

Hope this gives you a laugh...some one liners that go along with what we all having going on...

"Everyone wants to save the boobies, NO one wants to save an *******!"

since I now am plagued with anal stenosis from the radiation, does the make me a "tight-ass?"

Joanne

southernhound
Posts: 14
Joined: Jul 2012

Stay focused
I keep telling myself not to get ahead of things, I think that the only way I can do that is to make sure I stay busy with other things, so much so that I don't have time to dwell on the what "may be".
I am beginning to realize that anal cancer and other medical problems like rectal prolapse don't get talked about very much. I have found one person locally who has been through prolapse surgery. Before now the only time I ever used the word anal was to describe someone as being "anal retentive". I wish!
Thanks Joanne.

mp327's picture
mp327
Posts: 2851
Joined: Jan 2010

I am trying to catch up after being gone a few days, so I'm a little late in wishing you all the best with your upcoming procedure(s). I am not familiar with the protocol in treating AIN3 or even if there is a treatment. However, I do know of someone in the San Francisco area who has been seen for precancerous anal lesions at the University of California/San Francisco Dysplasia Clinic. By chance, are you anywhere near there? Dr. Barry is the leading expert in this diagnosis at that facility. I'm sorry I don't have more information for you. They have a website though, so check it out. There's lots of very good information there. http://www.ucsfhealth.org/clinics/dysplasia/index.html

southernhound
Posts: 14
Joined: Jul 2012

They are precancerous lesions. do you know what they had done? Mine are stage 3, which is just before cancer, will turn to cancer if nothing is done. I go for an anoscopy next Monday and will probably have more biopsies set up. There are more that have not been biopsied yet. Also have vulver lesions, same stage. Looked at website, but I am on the other side of hte country.

mp327's picture
mp327
Posts: 2851
Joined: Jan 2010

I'm sorry you are not in California. I know the dysplasia clinic at UCSF is very good. I'm not sure what type of procedures or treatments my acquaintance out there is getting.

southernhound
Posts: 14
Joined: Jul 2012

Scheduled for surgery one week from Friday. They plan to repair the rectal prolapse and surgically remove the anal lesions. I have only had one of the lesions biopsied and it was AIN3, precancerous. There are others that have been seen by my OB-GYN doctor and the colo-rectal surgeon. I am yet to talk with the surgeon about this part of the surgery. Do any of you know, if she will definitely biopsy the other lesions and will they have results and determine treatment plan at that time? Based on what I have read here, if the biopsies should come back with results that are cancer, they will not remove them, but stop and change to chemo and radiation. Has anyone on here had this experience with AIN3 turning into cancer. I was diagnosed with these lesions in June of this year. The surgeon is suppose to call me next week prior to the surgery. Do you have any questions that I should cover prior to surgery? No one has recommended that I see a gyn-oncologist but I understand that the lesions I have, which are caused by HPV are the type that can or do turn into cancer. Should I be consulting with an oncologist at this stage? I am feeling pretty strong right now but would just like more information. Thanks and thinking about all of you and what you are going through or have been through.
Take care,
SH

mp327's picture
mp327
Posts: 2851
Joined: Jan 2010

Your doctor should definitely have any and all removed lesions biopsied. If any come back as cancerous, then I believe the next step would be to get you set up wtih an oncologist. I think it's a little early for that until you are definitely diagnosed with cancer, as they will not treat AIN3 with chemo/radiation, at least that's my understanding. As for questions to ask your doctor, I would ask the same ones you have asked of us in your post. I hope your surgery goes well and you get some definite answers.

southernhound
Posts: 14
Joined: Jul 2012

Thank you for going over this with me. That makes sense and you have may have told me this before. I didn't know whether they would be able to biopsy these lesions while she was repairing the prolapse or not but I guess from what you are saying that it will be later before I know the results. I will ask her these questions when she calls. As others have mentioned, right now it sounds like I am one of the lucky ones to have had a prolapse so that these lesions were noticed when they were. I also have vulvar lesions and they have been treating those with Aldara cream. We have temporarily stopped that treatment because of the breakdown of the tissues prior to surgery. Will start back in a few weeks and then have additional biopsies.

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

seems to me that it is a great thing that they see these areas.. seems to me that they would try to excise all of them and try to get clear margins so they would send them all off to pathology but i do not really know ---just my opinion. ask the surgeon if he is going to excise all of them and send them off. i never have had anesthesia for anoscopes or proctoscopes but they do put lidocaine in the lubricant.. and they used to be more painful before tx but could stand it. mine was misdiagnosed for over year so too late to be precancerous. but i am still here after 3 years and feeling better and better each month. take care, sephie

southernhound
Posts: 14
Joined: Jul 2012

It is a great thing they saw these areas early in this precancerous stage and also that I will be under anesthesia. Thanks for responding about the biopsies and sharing your experience. Hope you will continue to feel better. Take care, SH

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