Author Topic: Anal Cancer (Read 5130 times)

newchapter · « **on:** December 30, 2011, 10:54:04 pm »

I was diagnosed with HIV back in '06. I've come to terms with my health status and have been trying to navigate through life with this condition. I was recently diagnosed with early signs of anal cancer and don't quite know how to handle the news or how to proceed. No one ever wants to hear the "C" word.

My doctors seem reluctant to level with me or tell me exactly what they're thinking. I know I'm not the only one out there dealing with this and I look forward to hearing from those who have traveled the same path.

gonzo · « **Reply #1 on:** December 30, 2011, 11:44:55 pm »

wow man, I'm really sorry to hear about your predicament, I can't imagine what your going thru at the moment, while I haven't been in your shoes, if you feel the need to vent feel free to pm me.

newchapter · « **Reply #2 on:** December 31, 2011, 08:57:38 am »

Thanks Gonzo....

I really don't know what to feel or think! So far I've just been in for observation and to take tissue samples. I'm told that at this point I just need to be monitored and checked every 6 months or so. I'm just not clear on what the next step should be.

Miss Philicia · « **Reply #3 on:** December 31, 2011, 09:11:11 am »

Quote from: newchapter on December 31, 2011, 08:57:38 am

Thanks Gonzo....

I really don't know what to feel or think! So far I've just been in for observation and to take tissue samples. I'm told that at this point I just need to be monitored and checked every 6 months or so. I'm just not clear on what the next step should be.

Sweetheart, that's not "anal cancer" -- that's just anal dysplasia and they took a biopsy. It sounds like the biopsy was of so little concern that they didn't even take it to the next step yet. Anyway, none of this is "early signs of anal cancer" it's just something that over the long term could possibly turn into cancer if you left it unmonitored and/or untreated. Did your doctor seriously not adequately explain this to you?

Birdie · « **Reply #4 on:** December 31, 2011, 09:38:45 am »

I guess that Miss Philicia is right. If they are just monitoring it,it' s probably Dysplasia. Read the info in the treatment section about HPV, under OIs. I was diagnosed with AIN2 a while back, after a biopsy. I was given Aldara cream and booked in for laser treatment 6 weeks later. When I went back for the treatment it had cleared up on its own. I was going through HepC treatment at the time. When you are down ,HPV can raise its ugly head and your body deals with it later on when you are in better shape. A bit like cold sores. Or it can get stuck and develop, eventually into anal cancer. Good that you are being monitored.

Birdie · « **Reply #5 on:** December 31, 2011, 09:42:16 am »

Sorry, the info is in the "About HIV/AIDS" section

newchapter · « **Reply #6 on:** December 31, 2011, 09:45:47 am »

Thanks Birdie........your info is much appreciated as is Miss Phillicas!!

Birdie · « **Reply #7 on:** December 31, 2011, 09:48:08 am »

Oooo,pleasure. That was my first post ever. Glad it helped.

newchapter · « **Reply #8 on:** December 31, 2011, 09:53:25 am »

It was a good post at that and thanks again!!
I'm told the main cause of this is through the HPV Virus so I urge everyone to get checked and vaccinated.

No I haven't had a serious sit down chat with the doctor yet but I intend to. More tissue samples were taken the other day and I have a follow up in a few weeks. At that point I'll have a discussion and will mention the Aldara cream.

Again, everyone get checked on HPV!

Birdie · « **Reply #9 on:** December 31, 2011, 10:07:29 am »

Once you have HPV it is too late to get vaccinated. Most adults have some strain already.That is why they are thinking of vaccinating all girls at the age of 12. There is an argument for vaccinating the boys as well. After all, we have sex too and sometimes no girls are involved. The vaccine was developed only a couple of years ago.

Miss Philicia · « **Reply #10 on:** December 31, 2011, 10:11:55 am »

Aldara is a topical cream and isn't (or shouldn't) be used for internal anal dysplasia. It is, however, used for external anal and genital warts. These are two separate issues, though both stem from the HPV virus.

Birdie · « **Reply #11 on:** December 31, 2011, 10:31:30 am »

It says that on the packet. i double checked with my doctor who is the anal cancer specialist in the UK. He said just to ignore that bit of the instructions. Newchapter's doctor may think about it differently. Warts and dysplasia are caused by the same virus. A wart is usually what triggers the investigation.

newchapter · « **Reply #12 on:** December 31, 2011, 10:36:18 am »

So much to ponder over.........a bit overwhelming at times!
Every bit of advice is so appreciated and I thank you and anyone who has something to add.

Miss Philicia · « **Reply #13 on:** December 31, 2011, 10:51:13 am »

Quote from: Birdie on December 31, 2011, 10:31:30 am

Warts and dysplasia are caused by the same virus.

Which is what I said -- caused by the same virus, but are not the same medical condition, and don't warrant similar treatments. AFAIK none of the top anal surgeons in NYC, Philadelphia or LA are doing what you describe for dysplasia. Personally I would get a second opinion, or does the lofty NHS not allow such cost expenditures?

newchapter · « **Reply #14 on:** December 31, 2011, 11:19:53 am »

I am considering getting a second opinion.......it's something I would suggest to anyone. I'm just not prepared for all that this could entail......as well as the potential costs.

Birdie · « **Reply #15 on:** January 01, 2012, 08:12:57 am »

You can also search for Imiquimod (the active ingredient in Aldara) on the main page. There is a lot of info on the latest research.

Miss Philicia · « **Reply #16 on:** January 01, 2012, 12:08:00 pm »

Quote from: Birdie on January 01, 2012, 08:12:57 am

You can also search for Imiquimod (the active ingredient in Aldara) on the main page. There is a lot of info on the latest research.

Could you link to it -- and please make sure the link is in conjunction with high-grade anal dysplasia, and also indicates any superiority to treatment with infrared coagulation. Also, going from the OP's older posts, I sense he's a US resident.

IIRC a UK study from last year on Imiquimod stated a lot of cavaets using the word "may help" for this treatment, and only involved 50 or so patients, because over half of them dropped out of the study. It involved sticking this topical cream 3 times a week for four months up their innards. I fail to see why this would be preferable to one treatment of infrared coagulation by a colon rectal surgeon done in his office.

Also, this thread is an earlier one here on the subject, and it's a subject that you'll find innumerable posts about if you utilize the search function here -- this post in that thread in particular is useful:

http://forums.poz.com/index.php?topic=36786.msg458070#msg458070

newchapter · « **Reply #17 on:** January 01, 2012, 08:26:05 pm »

All this info has been helpfull..........thanks to all for that.
I don't have "warts" and as previously stated, not sure just what the diagnosis is.
Going in for a check up, tissues samples taken, and then returning weeks later for a follow up is really getting on my nerves and taking far too long. I'm tempted to walk into the ER and if needed stay as long as I have to for some clear answers and a plan of treatment. The past few months of anxiety and the unknown have really taken a toll on me. The input from all of you have given me some direction.

I live in California and see that a few of you are in Europe.

buginme2 · « **Reply #18 on:** January 01, 2012, 11:26:55 pm »

Quote from: newchapter on January 01, 2012, 08:26:05 pm

All this info has been helpfull..........thanks to all for that.
I don't have "warts" and as previously stated, not sure just what the diagnosis is.
Going in for a check up, tissues samples taken, and then returning weeks later for a follow up is really getting on my nerves and taking far too long. I'm tempted to walk into the ER and if needed stay as long as I have to for some clear answers and a plan of treatment. The past few months of anxiety and the unknown have really taken a toll on me. The input from all of you have given me some direction.

I live in California and see that a few of you are in Europe.

Really just sounds like you need to start asking (and getting) answers from your own doctor. Your anxiety over this sounds heightened and a bit over the top. Maybe discussing it with your DR will calm your nerves.

Otherwise since your in Callifornia there is an anal dysplasia clinic at UCLA in LA and another at UCSF in San Fran. Go get your bumm looked at by another set of eyes.

Birdie · « **Reply #19 on:** January 02, 2012, 05:06:15 am »

Quite. Your doctor will advice you on the best course of action. This is a very slow developer and it sound like it was discovered early. Can I ask how it was discovered? Did you have a problem or was it part of a routine check?

newchapter · « **Reply #20 on:** January 02, 2012, 09:25:27 am »

Thanks for the info on UCLA buginme2......I will look into it!
Birdie it was discovered during a routine check up about 6 months ago.

newchapter · « **Reply #21 on:** January 03, 2012, 10:08:19 pm »

I did check with the UCLA Anal Dysplasia Clinic today here in L.A., and was told they're first available appointment was in Sept.......yes, September!!
Will now look into Cedars Sinai Clinic.

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Author Topic: Anal Cancer (Read 5130 times)