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

7243
Posts: 242
Joined: Feb 2011

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

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
mp327
Posts: 4007
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. 

7243
Posts: 242
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

TraceyUSA
Posts: 308
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.

 

Marynb
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
bamaje
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

K8M
Posts: 46
Joined: Jun 2013

Hi

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....

http://www.isa-pharma.com/2013/09/isa-pharmaceuticals-initiates-phase-iii-clinical-trial-isa101-patients-anal-intraepithelial-neoplasia-ain/

sfcharm
Posts: 11
Joined: Jun 2017

Hi everyone, new to this forum. Hoping to get some answers as I was just diagnosed with a High Grade intrepithelial lesion after a colonoscopy. I have suffered with anal pain, itching, for over two years. I live in San Francisco, am a woman in my sixties. I have seen two colorectal surgeons in the last two years and had an anoscope done four different times only being told, you just have inflammation and some scar tissue. The pain has gotten to the point where I have to take oxycodone at times. I am not HIV positive and was never told I had HPV, not even sure I was ever even tested for HPV. I have been referred to Dr. Berry at UCSF, my understanding is his clinic is as good as it gets. Thank you in advance for any light you can shed on this subject. I appreciate your taking the time to read this.

Salsify's picture
Salsify
Posts: 30
Joined: Nov 2015

From: https://www.cancer.gov/publications/dictionaries/cancer-terms?cdrid=44762

 "high-grade squamous intraepithelial lesion  (... SKWAY-mus IN-truh-eh-pih-THEE-lee-ul LEE-zhun) 

A growth on the surface of the cervix with moderately or severely abnormal cells. High-grade squamous intraepithelial lesions are usually caused by certain types of human papillomavirus (HPV) and are found when a Pap test is done. If not treated, these abnormal cells may become cancer and spread to nearby normal tissue. A high-grade squamous intraepithelial lesion is sometimes called moderate or severe dysplasia. Also called HSIL."

So the location in your case is a couple of inches away, but the principle would remain the same. Over 30 years ago after repeated abnormal PAP results, the offending tissue was removed. I figure it was HPV which hung around to create the squamous cell anal cancer tumor discovered over a year & a half ago which was successfully treated. Yours has not developed that far :-)

sally

mp327's picture
mp327
Posts: 4007
Joined: Jan 2010

Welcome, but sorry you have a reason to search out this site.  Salsify has explained HSIL very well, so I will not try to add to that.  However, I am SO glad you have a referral to see Dr. Berry at UCSF!  He is one of the best, based on connections I have with some of his patients.  I have also had the pleasure of meeting him at a conference a couple of years ago.  You will be in excellent hands!  Try to remain calm and continue to learn as much as you can about this type of lesion.  Please keep us posted on how things go for you after you see Dr. Berry.  I wish you all the best!

Mollymaude
Posts: 206
Joined: Nov 2016

I wanted to know if my cancer was caused by HPV or just a random fluke. Since I was asking those questions my pathology was sent out to another lab at a nearby university.Mine was caused by HPV. This was a relief in a way because I can protect my kids with an HPV vaccine, I can't protect them from my genetic weaknesses or tendencies. It did kind of suck to find out I had cancer from an STD but oh well. I try to remind myself about the 80% of all of us infected but STD stigma is deeply ingrained. 

sfcharm
Posts: 11
Joined: Jun 2017

Thank you for your responses, it is very much appreciated. I am glad to be a part of this support forum. I am one of those people who reach out in support groups. In the short period since I was told about the Lesion I've read alot about it. I do however feel a sense of shame about it. I am hoping with treatment and therapy I can get past all of this. I know it's normal to feel this way. 

Wisteria83's picture
Wisteria83
Posts: 94
Joined: Feb 2017

I asked first thing if my cancer was HPV related and was told twice, by two different doctors that it was not.  There was no evidence that it was.  I was treated for Cervical Dysplasia 30 years ago, along with a few suspected areas in my vagina.  It was done with laser and a "Top Hat" conization.  I was told at the time that they believed it was because my mom took DES while pregnant with me.

Fast forward to the present and I get anal cancer.  Long past the dysplasia period, because I had no symptoms and no one ever looked in my anus, There was no reason to look.   By the time the cancer was found, I had a 5 cm. tumor.  I don't know if anything would have shown up if I'd had the colonoscopy when I turned 50 as per the guidelines.  It wasn't even found when I did have the colonoscopy last November.   l I also had a hysterectomy about 15 years ago, but prior to that all my PAP tests were normal after the treatment that I had for the dysplasia.

About halfway through my treatment, I asked my rad onc about HPV, and he looked at the biopsy records and said yes, HPV 16 was found.  I didn't have any of the risk factors.  No HIV, no anal sex.  So where did it come from?  I'll never know.  I wonder though now, since my husband of 24 years and I have always have had unprotected intercourse, does that mean he may have it too?  How would I even find out?  And if he doesn't yet, is there still a risk for him?  It's my understanding that it doesn't go away, so will any further sexual contact between he and I be risky?

 

Mollymaude
Posts: 206
Joined: Nov 2016

I don't think anyone has those answers. Best guesses, maybe. If you've had HPV long enough to get anal cancer, it's pretty likely your husband has been exposed already and also likely he's one of the majority of people who either clear the virus or live with it without any problems. So I really wouldn't worry about that part of it. The doctor I went to who helped create the HPV vaccine (Dr Ault at KU med center) says radiation treatment probably kills all the HPV you carry. Probably, maybe. And I agree with a previous post that said a lot of us on here don't have the risk factors of HIV or history of anal sex- probably will take a generation of doctors for that misconception to go away. 

Closer to home and more painful is all through this my husband keeps (to my embarrassment) asking different doctors if I could have gotten HPV from a toilet seat!! Geez! NO! Then his next theory is that I got it many years ago from a gyn exam from dirty instruments. Uh, pretty doubtful. I guess he can't tolerate that I either got it from someone else besides him before we met or that he gave it to me. Anyway it makes me feel like he's trying to convince himself I'm not slutty which makes me feel, well, slutty and ashamed. Let's be honest, probably most of us were brought up being taught that nice girls don't get STDs. 

Wisteria83's picture
Wisteria83
Posts: 94
Joined: Feb 2017

I was certainly raised that way.  In fact, "Nice Girls" didn't have sex until marriage either!  I guess I wasn't a nice girl.  Have you told your husband how his questions to the docs makes you feel?  At first I was reluctant to tell my grown children the type of cancer that I had, knowing that it would raise eyebrows and questions, but then I figured...they already know I'm not a saint...and neither are they!  It's a different world now than it was back then.  My daughter has HPV and has had some cervical dysplasia, she wasn't shy about telling me and I don't judge her.  All three of my boys are hardly virgins, and I wouldn't judge them either.  I expect the same respect from them.  As for what other people think...I just don't care.  Not anymore.  I'm lucky that my husband, ("bless his heart") hasn't questioned my diagnosis.  Maybe he feels some guilt, but we haven't really talked about it much.  Not since I told him the stats of people who are sexually active and have been exposed to HPV.  Of course this is the same man who asked his daughter if he could catch it...when I had an ovarian cyst rupture.  LOL!  We will never let him live that down.

At this point in life, it truly doesn't matter how you got HPV.  What matters is dealing with the present...and the future, which of course, cannot be predicted.  Since I made the choice to be honest about the type of cancer I have, I've also used the opportunity to raise awareness of HPV.  I've found that most everyone I've spoken with is just as ignorant about it as I was before I was diagnosed.  I like to think I've opened their eyes and minds just a bit and that they won't be so quick to judge when they hear about someone elso who has anal cancer.  My husband, on the other hand has only told people that I have a "female type" of cancer.  So wrong, but then again...that's just him, and I think he's trying to protect me.  You have to admit, that even on this board there are far more women than men.  I'm not sure why that is, except than men generally don't reach out for help with much of anything.

~Wis

mp327's picture
mp327
Posts: 4007
Joined: Jan 2010

One reason there may be more women than men on this board is because in reality more women are diagnosed with this disease than men, according to the stats put out by National Cancer Institute, although the difference per 100,000 people may seem insignificant.  I also believe that women seek support more than men by nature.  Just my opinion.

https://seer.cancer.gov/statfacts/html/anus.html

tanda
Posts: 83
Joined: Jan 2015

totally agree on both points...the statistics and the fact that women are more open about medical and health details and are more likely to seek support

Mollymaude
Posts: 206
Joined: Nov 2016

Thanks for your reply Wis. No I haven't talked to my husband much about how it makes me feel when he asks those questions. Everytime he asks or brings it up I think surely this is the last time he's going to do it! He hasn't for awhile so maybe he is done now. Especially since no one has endorsed his theories. Weird thing is that I have very matter of factly told my two teenagers that HPV caused my anal cancer- they know the 80% statistic. I didn't feel judged by them at all. And if course I don't feel judgemental at all about others who have it.

 My kids both got the guardasil vaccine for four types of HPV and they are now in the process of getting the new vaccine series that protects against 9 types. They are not complaining one bit and if you knew what a huge deal shots were for my daughter (true phobia of shots) you would be truly impressed. I guess watching someone go thru the treatment for cancer makes a shot to prevent it seem like small potatoes. By the way, I was shocked and pleasantly surprised that insurance is covering them getting the new 9 valent vaccine. 

sfcharm
Posts: 11
Joined: Jun 2017

Hi again,

Thank you again for all your input, support and very welcoming response to my joining this forum. I have an appt. this week at the UCSF Anal dysplasia clinic for an evaluation for the High Grade Anal dysplasia. I was diagnosed last week after a colonoscopy showed a High Grade epithelial lesion in my anus. I have been complaining for over two years of pain and rectal bleeding. As I said I have seen two colorectal surgeons who did anoscopy exams but found nothing alarming. I continued to push my primary Dr. to get me in for another colonoscopy as I was convinced something was very wrong down there.. The GI Dr. who did the colonoscopy said that the lesion was very difficult to see even with the colonoscopy. She felt that both colorectal surgeons could have easily missed it during the anoscope exams they did. I saw one Colorectal surgeon at the University of Pennsylvania while visiting on the east coast. The second one was at UCSF in SanFrancisco, where i live. I was told that I will be having an anoscope test done and that biopsies will be taken. My understanding is that the results will be back within a week. If anyone has any further input, thoughts or advice, I'd love to hear from you.

 

Mollymaude
Posts: 206
Joined: Nov 2016

I think you sound like a person who knows their body and can advocate for themself! I really admire that you kept at your doctors until you got an answer. As for colorectal surgeons even if it was easy to miss it doesn't inspire confidence. The anal dysplasia clinic sounds like it should be a place you should get great care. I think that's the one Martha talks about. I know what it's like waiting to meet another doctor and hoping they will listen, be kind and empathic, and be competent! Nerve racking. Glad you could get in this week, let us know how it goes.

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