Addressing Long-Term Side Effects After Treatment for Anal Cancer - Support Meeting

Marynb said:

Edn
It is great to see the Anal Cancer Foundation heading this up! Will there be a recording of this session so those of us who do not live in the area can watch it?

Also, I am wondering whether there has been an effort by the Foundation to raise awareness in the public and among doctors? Most of those who post here were misdiagnosed, sometimes for years! Doctors and the public need to know the symptoms of anal cancer. Lives could be saved.

The other issue that needs to be addressed is the misperception that anal cancer is the result of gay sex or anal sex. The public needs to be made aware of HPV and the link with anal cancer. Often, it is this misperception that keeps anal cancer patients from speaking openly about the disease, so we stay in the closet, so to speak. Many of us have been in long term marriages and had no high risk behaviors.

I wonder if you could educate us about the efforts of the Foundation and how we can help to raise awareness to prevent this dreadful cancer?

Thank you for all you are doing.

I second what Marynb has said.  It would be great if these types of seminars could be held regionally at some point, as those of us on this board are scattered across the country and are unable to be in NYC. 

Thank you to everyone, including yourself, who is involved with the Foundation.

Thank you for the oppurtunity to attend the seminar, I am so looking foward to it, I registered when I first saw it on the MSKCC site and posted the link here back in mid Sept for others to hopefully join us, so far there are 3 of us here on the boarn now attending, maybe four if all goes well. Do you know approx how many people in general are now registerred ? I saw there was a location change since I first signed up, was wondering if it was moved in regards to needing a bigger space ? I hope it is well attended

edn said:

The hospital does not allow

The hospital does not allow the sessions to be recorded but representatives from the charity will be taking notes which will be posted on our website after the event. (www.analcancerfoundation.org) We are also hoping to live tweet from the event so that those that can’t make it can ask questions and join the discussion. In the future, we hope to roll out these sessions so that they are accessible to more people both in the UK and the US whether this is through webinars or more meetings.

Our latest campaign NOMAN is an Island: Race to End HPV (www.nomanisanisland.co.uk) was designed to raise awareness of the prevalence of HPV and its link to many cancers. The campaign gained national and international press including Bloomberg and the Chicago Tribune so we are making in headway in getting people talking about this often stigmatised disease.  In terms of awareness amongst doctors and the medical community, our charity seeded and helped create the International Anal Neoplasia Society (IANS). IANS is devoted to prevention and treatment of AIN and anal cancer and one of the goals is to educate clinicians. Our hope is that they will be able to generate a clinical consensus about who is at risk for anal cancer and how we can use more preventative strategies to prevent anal cancer cancer from developing in the first place. IANS is having it's inaugural meeting on November 22  in San Fransisco. We have a strong portfolio of projects we're announcing in the next few weeks. Some are preventative, others are more related to developing therapeutic tools, some are designed to end the isolation many anal cancer patients feel. Stay tuned!

Back to the event, we now have over 40 people registered which is incredible. We've had to upgrade to a bigger room! 

I hope you will continue to come back to this board with updates on the projects that are in the works.  Thank you!

sephie said:

thanks----important

thanks for doing this.... and please do understand( and you probably do) that who is at risk is almost every and anyone...  many of us here did not have multiple partners or engage in anal intercourse....( i am not saying that it is bad to do either one of those, just making a statement ).... thanks   again and keep us informed......sephie

People like to identify risk factors because it gives a feeling of control. "If I eliminate this thing, then that thing won't happen, if this risk factor goes, then the risk of cancer goes (or goes down) with it." Living with uncertainty can be uncomfortable, but unfortunately, that's often the condition under which we live, whether its recognized or not. Insofar as known risk factors for this tumor are concerned, I had none of them. Not one. Don't drink or smoke, don't eat meat or processed food, am not overweight. Have never tested positive for HPV, not now, not ever. Sometimes, answers aren't known and never will be. Sometimes, all one can do is deal with the problem without knowing the "whys" of it.

Marynb said:

Exactly!
Well stated, LaCh. It is not enough to educate doctors and the public about risk factors, because it leads to misdiagnosis. It is important that doctors and the public know the symptoms of anal cancer. I complained for years about what my doctor told me was a mere hemmorhoid. I was referred to a gastrointestinal specialist and he asked me my symptoms and never even examined me! I finally got myself to the right doctor after years of doctors telling me it was nothing to worry about! There is no excuse for this. Anal cancer should not be hard to diagnose! It is usually pretty easily visible, if a doctor knows what to look for. I did not know the symptoms and so I had no reason to suspect cancer at all. I was stunned, to say the least! I do not fit into any of the risk categories and I never thought of HPV after I learned that my husband of 20 years had been having sex outside the marriage. I did have test for HIV, but no doctor suggested I be tested for HPV.

I think every roll of toilet paper and every package of Preparation H should describe anal cancer symptoms so the public can be aware of what to look for. That would be an inexpensive way to save lives! I would love to see the Anal Cancer Foundation launch a public awareness campaign so that the general public would know that anyone can get this cancer. There is widespread misinformation about this cancer. That has to be corrected so lives can be saved!!!

What you have said is so true.  There is SO much misinformation about anal cancer.  I can understand the public's lack of knowledge, given that this cancer is rarely talked about.  What I don't understand is the number of doctors who dismiss symptoms and automatically give the old "it's only a hemorrhoid" diagnosis.  That's what my internist did.  Had I not been overdue for my first screening colonoscopy, for which she referred me to a colorectal doctor, I would have gone for who knows how long believing that my bleeding was just a hemorrhoid.  One look up my bum by the colorectal surgeon during my consultation appt. prior to scheduling the colonoscopy was all it took for her to tell me I had cancer.  It makes a huge difference as to what type of doctor and that doctor's experience with anal cancer when it comes to getting a correct diagnosis.  I always tell people on the websites on which I'm active that a diagnosis of hemorrhoids for bleeding symptoms with a simple DRE should ALWAYS be followed up by a colorectal specialist for a more thorough exam, including anoscopy, for confirmation of that diagnosis.  Many times, as in your case and mine, the first diagnosis is wrong.

sephie said:

misdiagnosis

yes, well said  Lach, marynb, martha::::;   I went to a proctologist for my symptoms and he kept saying for 10  months,  i see bleeding but it is not cancer like farrah fawcetts.... i had a visible sore on the outside.... he also did muptiple DRE;s and anoscopes and STILL did NOT recognize what it was or send me to a colorectal surgeon... finally ,  i was in soooooo much pain that my hubby insisted i go to a larger town for 2nd opinion.... the colorectal surgeon took one look and new what it was,,,, thanks to him ,, it was caught at stage 2.......misdiagnosis by the one doc  who goes to school to study the anus and rectum..... what a mess...... no HPV either...... sephie

I was misdiagnosed for a couple of years at least. On reflection, not even a proper examination, but again considered to be a haemorrhoid. By the time I was diagnosed by a colorectal surgeon,  a lymph node was involved. No evidence of hpv either, & none of the other risk factors except my age (I was 59 when diagnosed). On initial examination, he though it was rectal, but confirmed to be anal scc when examined under anaesthetic plus biopsy.

I live in the UK, & when an urgent suspected cancer referral is made, the patient should be seen within 2 weeks. However, when I hadn't heard anything after 2 weeks, I checked only to discover the referral had been downgraded to 'urgent' with a 26 week wait. No, you didn't misread that, a 26 week wait for urgent. I saw surgeon privately. Thank goodness I was able to!

Marynb said:

LaCh
Sorry, I seem to have offended you, though I had no intent to. You know your case, and it is possible that you had hemmorhoids before the tumor developed. In that case it was certainly a lucky coincidence for you that you had the hemmorhoid treatments, so they found the anal cancer at a very early stage. That was not the case for me, and for many others here.

In my case, and in many other cases here, the doctors mistakenly diagnosed the tumor as an internal hemmorhoid and treated us for hemmorhoids when we had a cancerous tumor. For me, that went on for years and I was at a later stage when I was finally correctly diagnosed.

I am glad that you had doctors that were on top of things!

No, as I said, I had bleeding, it was evaluated, diagnosed as a hemorroid and treated (ablated) and the bleeding stopped. It started again several months later and was ablated again.  Each time the location of the 'roid was different, just as the site of the tumor was different from both hemorroid sites. The bleeding stopped and resumed six months after the second ablation and the third event of bleeding was the tumor. Each episode was independent of the others, was evaluated and treated independently of the others. To say that the hemorroids were misdiagnosed is not the case; they were diagnosed correctly and treated appropriately. Even a layman can see the difference between the two, so to say that a board certified gastroenterologist would mistake them upon visual exam stretches credibility. When an anal tumor is misdiagnosed as a hemorroid, it's generally because someone didn't look, didn't evaluate it, didn't do anything beyond take a history of rectal bleeding. In other words, it's often (not always, but often) not because something was done poorly, it's because nothing was done at all. That's not what happened to me. When I returned for what I assumed was another hemorroid ablation, the tumor was palpated under anesthesia (as I'm told) and then visualized with the scope, and it was immediately evident (to the gastroenterologist) that contrary to what we both assumed, this wasn't another hemorroid. A biopsy was performed and the diagnosis made.  What I had was a gastroenterologist who was willing to treat a third incidence of rectal bleeding, despite the potential of being lulled into a false sense of complacency based on a previous history of two hemorroids, was astute enough to recognize that the third time was something all together different from the first two, who had pulled strings to make it possible for me to even go there a third time (remember, there were rules at that time that demanded someone to accompany home anyone receiving anesthesia, and I had no one; without those rules being lifted by her, I'd either be dead by now or well on my way. ) So I've been crazy lucky in many ways, but as far as being misdiagnosed... no.  Not in this.  As a matter of fact, ironically, I have been misdiagnosed in my life, so I know the immeasurable frustration involved in that, but this wasn't one of those times. When I really needed someone to get it right, she did. Spot on.  Luck is hard to fathom, good luck and bad; I've been very lucky in many ways in my life, and not a day goes by that I don't know it. Don't know why.... just know that I am.  It was an adventure, a bump in the road, I saw it, passed it and now it's behind me, and in that, I'm lucky as well. Not everyone is able to say that, and I'm aware of that too.