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Research anal cancer, dysplasia .... A place to learn and thought provoking

Posts: 241
Joined: Feb 2011


see link here re; UCSF physician renowned in area of anal dysplasia and infectious disease ... See his long list of publications ... i found this interesting.  He deals with a "high risk" group ... So risk factors are real and to be considered.   

Ucsf deals with dysplasia ... In men an women ... 

I believe anal PAP in standard prevention should be considered and HPV vaccine.  

What do u think?  

I was never diagnosed with HPV in the 28 years I was tested ... PAP and dual test for hi risk HPV ... Yet the (I hate to say my) tumor was strongly positive for HPV 16.   So ... To say "never positive" means nothing to me ... 80 % of all sexually active have HPV .... 

Opening this is for your thoughts And discussion ... 


I am am a survivor - thriver ... 3 years post diagnosis high grade tumor anal cancer ... Standard 5FU - mitomycin combined Radiation therapy.  

Im iall but convinced in the link between anal cancer and HPV.  Most all cervical dysplasia and squamous cell CA of the cervix is due to HPV.  

As a point,   And I never had anal sex ... It's not necessary to inoculate the hinner with the virus!  Transmitted skin to skin ... Through secretions and menses ... Fingers and hands ...

what do u think?  the recent post re; Sloan Kettering got me going on this .... It matters for the future ... Don't u think?

although I will say ... When I was in treatment and still getting my head back together after treatment ... Causality was not what I was focused on.   So many here may not be ready to talk causal relationships and prevention in others yet ... Or ever.

what do u think?

mp327's picture
Posts: 3916
Joined: Jan 2010

First of all, Dr. Palefsky is one of the leading experts in this country when it comes to anal cancer and anal dysplasia.  I have often given out the link to newbies for UCSF.  They have a dysplasia clinic and another excellent doctor there named Dr. Berry.  I have heard all good things about him and have communicated with at least 3 people who have seen him. 

As for anal paps, I doubt that they will be standard testing anytime soon, except perhaps in high-risk groups.  I asked my colorectal doc about one and she said they don't do them and that there are very few labs in the country that will test the smears.  As for the HPV vaccine, I am all for it.  Many people think it will promote promiscuity in teens, but I think teens had passed that point many years ago, so I say protect them.  I must follow that statement, however, by saying that I am not a parent.  Many people are concerned about the safety of the vaccine and I guess that's valid, but there is risk with any type of vaccine.  With the rise in HPV-related cancers, I personally think the benefits outweigh the risks.

In all the years I have been getting pap smears/HPV testing, I have never tested positive for the virus.  Also, my tumor was not tested, which I think needs to change and become standard protocol, due to the fact that HPV causes other diseases, not just anal cancer.  I believe we have a right to know if we carry the virus so we can be sure to have our doctor include HPV testing with our paps and be vigilant when it comes to being checked for any things that concern us.  However, it's important to note that the test will most likely come back negative if the virus is not active at the time the test is done. 

I do not believe that most anal cancer patients/survivors have ever had anal sex.  The majority of people diagnosed with this disease are women and my view is that most of these women have been infected in the anal area due to the reasons you have mentioned above, not anal sex.  I have never had anal sex, which is why it was such a shock to be diagnosed and find out that that was a risk factor.  Unfortunately, the female anatomy makes it easy for this virus to be transferred from one cavity to another. 

All the above said, I have really had to put aside the big questions of how and why I got this disease.  Instead, I have focused on helping others and taking care of myself.  Some things just can't be explained. 

Posts: 241
Joined: Feb 2011

Many thanks for the dialogue Martha ... I'm 2.5 years post treatment and cancer-free as if my last CT, DRE, and anoscope.  Good news here ... I want to give back in some way now that I'm starting to believe I likely will survive this part if my journey.  


Be well dear woman!  Xo

Posts: 301
Joined: May 2013

I have been asking HPV questions since I got diagnosised in Dec. 2012 and the tumor tested positive for HPV 16.  None of the doctors seem to give me definitive answsers.  They give me the general most peoples body's clear it on it's own which is not the case for me.  I was treated for cervical dysplasia 15 years ago (they were just beginning to learn about HPV & the cervical cancer connection at that time, so I do not believe I was tested for HPV at that time)  and have had normal PAP since a year after that surgery.  I was shocked when I got the anal cancer diagnosis since I never know this was a risk for me. 

I had an appointment with the PCP yesterday and asked her about the anal PAP as a preventative measure and she said that the issue is not with a lab since they can send samples anywhere to be tested.  The issue lies in knowing the correct procedure to obtain the sample.   Don't you think we should be getting routine anal PAPs to detect pre-cancerous cells instead of PETs, CTs or MRIs that are only going to show after it's progressed to cancer?

I've said it many times, this HPV really scares me ... I don't know what answer I'm looking for....I guess I'd would like to know that this isn't a time bomb ticking inside of me while I wait for something else materialize from it.


Posts: 1122
Joined: Aug 2012

Tracey, I share your concerns and have gotten no answers. This tells me there is much that they don't know. I wonder if this is due to lack of funding for research? I know this is a relatively rare cancer and there really needs to be much more awareness and research...which probably means more fundraising.

bamaje's picture
Posts: 4
Joined: Oct 2013

I would think if 80% of a population (sexually active) has come across in their lives and anal cancer is still pretty rare percentage wise in all colon/rectal cases, that then the benefits of across the board pap testing there is not supported.  Unfortunately bad things happen to good people and has always been the case.  I do know there are more links to HPV in oral cancers too (for obvious reasons) and perhaps less unobvious ones.  In a study I'm in they do a mouthwash rinse that tests for certain cells (I'm assuming cancer cells etc)..  and as most medical journals and Doctor's say most healthy adults clear the virus on there own within a few years of acquiring such.  Cervical cancer is one of the slowest growing cancers out there and I'm assuming the same is true of any HPV cancer growths...screening is pretty important for all of these.  Many women have cervical dysplasia and treatment in their twenties/thirties so I'm assuming perhaps it's a fluke that your tumor presented with HPV or did he definitely say that it was the cause solely of the cancer?  I try not to worry about things so much even being diagnosed with signmond cancer as I think the more you worry and dwell on things it allows our bodies to weaken and things can take over at this point.  I was diagnosed this year at 48 with a cancer that my biological dad had in his early fifties (and probably longer it's just diagnosis didn't take place before 50)...so I'm inclined to believe despite the 20/80 rule that 20% are inherited disorders and 80% random...I'm inclined to believe many of these things have a biological/genetic component that otherwise healthy individuals with no family history would have exposure and do not get cancer.  Hope all works out for you.  You will be in my thoughts/prayers that all gets better.  Debbie

Posts: 46
Joined: Jun 2013


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....


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