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Helping to get the word out . . .part 2

Angela_K
Posts: 370
Joined: Jan 2011

I don't know about you all, but I've hit a brick wall when trying to secure speaking engagements regarding anal cancer. Even the local Cancer Society is hesitant to allow me to speak and I feel it's because it's not a 'popular' cancer such as breast or cervical. Although I gained created community awareness when interviewed by local television for the local ACS's 'Relay for Life,' overall support for anal cancer is minimal.

A thought: In addition to increasing awareness on local levels, let's try to bring it to the mass audiences. More bang for the buck? And I feel we can do this by joining in on a e-mailing campaign, say, to the Dr. Oz show. It's certainly a start. And if enough of us reach out, we just may be heard.

http://www.doctoroz.com/contact

Join me this week in bombarding the show with short and sweet e-mails letting them know the quick stats regarding anal cancer and how we think a segment in his show would raise needed awareness of this 'taboo' cancer that is increasing each year.

We can be that grass roots movement!

Angela

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Lorikat
Posts: 551
Joined: Jul 2011

Will do! Tired of hearing "huh?". When I say Anal cancer....?Lorie

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mp327
Posts: 2823
Joined: Jan 2010

I think this is a great idea! Given that HPV will eventually affect such a large percentage of the population, people need to know what kind of havoc it can wreck. As hard as it is for me to imagine how terrible it would be to lose my breast(s), it's even harder for me to imagine losing my anus, rectum and lower colon and living with a colostomy for the rest of my life. People need to know that that's what happens when anal cancer is not detected at an early stage. They need to know of the symptoms and that it is easily missed on colonoscopies, so getting a clean colonoscopy doesn't necessarily rule out AC.

I rarely watch the show "The Doctors," but happened to see an episode with a segment where a woman had been having some bleeding and consented to having a DRE right there on the show. Fortunately, the DRE was with no findings, but that woman should have been referred to a CR specialist for further exam. My first exam was a DRE by my internist and she declared that it was a hemorrhoid. Needless to say, she is no longer my doctor.

Okay, I will do this. I'm not saying I would ever agree to appear on his show, but I will send an e-mail. We might also want to do the same to "The Doctors."

Martha

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sephie
Posts: 514
Joined: Apr 2009

will do . great idea. sephie

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Pattie13
Posts: 47
Joined: Mar 2012

I went to the site and posted under Idea for a segment.
Here is what I wrote. Hope it gets some attention from them.

"I was diagnosed in March with a T4 anal cancer tumor. My doctor said it was as big as his fist. Thank God I got the doctor I did though because with his radiation treatment and chemo the tumor shrunk and I believe it is all gone. I have an appointment in July to confirm this.
I had been told for the past few years that what I had was bleeding hemorrhoids and there was really nothing I could do about. Sure they are messy….but there is nothing we can do…said my doctor. I was bleeding each and every day and with each bowel movement. About November it really started hurting and around January I could feel a bump when I put hemorrhoid cream on the area. Told my doctor about it and she examined me and told me it was a thrombosed hemorrhoid and sent me to see the General surgeon. He examined me but did not touch the area because he was already pretty certain what it was. He got me in for a scope and biopsy under anesthesia and a few days later came back with a confirmed diagnosis of Anal Cancer.
Please consider doing a show on this overlooked cancer. I know there are probably plenty of people like me that just think they have a messy hemorrhoid problem and really should get checked."

jane marie
Posts: 5
Joined: Apr 2011

Pattie,
Your treatment sounds soooo familiar! I went to three gastro doctors, the first two saying I just had hemorrhoids and the third said it was thrombosed and referred me to a surgeon. He did the biopsy in the office and then all hell broke loose with my life! I agree we need to get the word out. Even the doctors are so quick to say its just a hemorrhoid and go away! I was diagnosed three years ago this September and am still having so many side effects from the radiation. Thank you to all of you for speaking so bluntly about the subject and getting the word out. I know we are all going through our own hell but it is really nice to get the support from other people who have gone through it.
Jane

eihtak
Posts: 809
Joined: Oct 2011

....and I am one of those unfortunate cases living with a colostomy bag. I will be happy to talk to anyone anytime regarding more discussion about this. In my area (Wisconsin) residents recenly did receive in the mail a flyer from UW Health with a section on "Tummy Troubles" that ended with a recomendation to rule out more serious issues than hemmorhoids if bleeding and itching persist. They had a blurp on all sections of the digestive system, but that was it for the Anus. At least it was mentioned, but would love to see public become more aware and comfortable with the topic.

jane marie
Posts: 5
Joined: Apr 2011

Angela,
Thanks for such a great idea! I just sent both the Doctor Oz show and the Doctors show an email. How many of us are misdiagnosed out there? So many doctors just brush off the symptoms of anal cancer. Even the reported symptoms given by the American Cancer Society say that anal cancer presents itself as a painless lump. So many of us experienced extremely painful lumps and cysts and were misdiagnosed for months if not years.
Thanks again for getting the word out.

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mp327
Posts: 2823
Joined: Jan 2010

I was diagnosed in 2008 with Squamous Cell Anal Cancer, a rare disease that affects less than 6000 people each year, and is the same disease that took the life of Farrah Fawcett. Awareness of this disease seems to be lacking, both in the public sector, as well as the medical profession, as many people, such as myself, are misdiagnosed initially with bleeding hemorrhoids. With the increase in cases of HPV-related diseases, I feel it is very important to increase public awareness and remove the stigma associated with anal cancer and other such cancers. These diseases can happen to anyone, regardless of sexual orientation or practices. Anal cancer is a terrible disease and the treatment for it is brutal, leaving many patients with lifelong side effects. Others do not survive the treatment or succumb to spread of the disease to vital organs, such as the liver or lungs.

I ask that you consider doing a segment on this disease and invite some of the leading experts in the treatment of anal cancer to appear on your show, such as Dr. Catherine Eng of MD Anderson, and Dr. Joel Palefsky from UCSF. I sincerely appreciate any consideration you may give to this request. Thank you.

Angela_K
Posts: 370
Joined: Jan 2011

http://www.thedoctorstv.com/main/faq

http://www.thedoctorstv.com/main/ask_our_doctors

I think we're on a roll! Keep it up!

Angela

mp327's picture
mp327
Posts: 2823
Joined: Jan 2010

I also sent the same letter to "The Doctors" show.

eihtak
Posts: 809
Joined: Oct 2011

Don't know what I'm doing wrong but am having a problem with my e-mail going through to doctor oz, any ideas?????

Dog Girl
Posts: 100
Joined: Sep 2010

Here is my "treatise" on Anal cancer going to Dr. Oz. (I will change and customize and send it to "The Doctors" as well.) I took a little different approach in that I first couched the idea of talking about HPV related cancers since that would possibly have a broader appeal, but then I zeroed in on anal cancer. I also sucked up to him, but I do think he could be instumental in getting the word out. Great idea Angela!

Dr. Oz:

Because of your large audience reach and your ability to educate the public, I urge you to do a program on the various cancers that are associated with HPV and what can be done to prevent those cancers.

As you know, HPV is very prevalent in today’s society. Since the majority of the time someone with HPV is asymptomatic, and condom use will not necessarily prevent its spread even if they are aware that they have it, it is likely that its incidence will only continue to increase exponentially. Because of the link between HPV 16 & 18 in particular to cervical, anal, vulva, and throat area cancers, I would like to see two approaches to this growing problem; an Awareness; Education; and Screening campaign as well as info on Prevention.

I would particularly like to see an emphasis on an “unmentionable” cancer - Anal cancer. I myself am a three year survivor of Stage II anal cancer and except for when Farrah Fawcett was dying, you never hear anything about this growing disease, but more and more people, both men and women, are being diagnosed on a daily basis.

Awareness; Education; and Screening

First, I am old enough to remember when breast cancer was talked about in shushed tones and
certainly not in “polite” company much less in public. First Betty Ford, then many others over the years, have done wonders in raising the public’s awareness about breast cancer and now there are many resources dedicated to its eradication. Heck there are even bumper stickers that say “Save the Ta-tas!” and this is a good thing. Unfortunately that is not the case with Anal Cancer.

There are still many stigmas associated with Anal cancer. Some believe it can only be caused by indulging in anal sex, and while that is one of the risk factors, the other risk factors have nothing to do with participating in anal sex. Even some doctors are misinformed and think that anal cancer is a “gay man’s disease.” Because of this stigma and the thought that that area is “dirty” many times people feel embarrassed to discuss problems “down there” with their doctor. Even more unfortunate, many times once issues are brought to the attention of a medical professional, the problem is misdiagnosed as hemorrhoids and valuable time is lost in treating the actual cancer.

To paraphrase an old commercial, I believe that “parts are parts” and that your anus/anal canal is simply another body part and unfortunately you can come down with cancer in any part of your body. Heck dare I say that with the exception of breast feeding, your anal canal/anus is a more important body part than breasts in that they are actually physically used on a more regular (no pun intended) basis.

As far as screening, some anal tumors are diagnosed during a routine colonoscopy, but they can grow between the usual five year interval between tests as well. In my case a 4 cm tumor had grown just barely three years after a clean colonoscopy. I really don’t know whom was more shocked; my gastro doctor (whom had done the colonoscopy) or me. It is important that people with ongoing symptoms be checked out by a doctor whom is familiar with anal cancer and the most routine test, which uses an anascope, aka anal speculum, is not painful and can be done in the doctor’s office without sedation. (I will admit it is
an uncomfortable/weird sensation, especially the air blowing in to expand the anal canal, but it is not painful.)

The good news is that if caught early there is an excellent chance of survival. The treatment is very intense, but relatively short (5-6 weeks of concurrent chemo and radiation), but in order to survive this winnable fight, people must first be Aware; Educated; and Screened.

Prevention

There are two vaccines out on the market now, Gardasil and Cervarix, that when given to teenagers, or to younger adults before much sexual activity has taken place, is very effective in the prevention of HPV 16&18. (Gardasil also guards against HPV 6 & 11 which is tied to genital warts.) It needs to be stressed that giving these vaccines does not promote sexual permissiveness, but that unless one takes a vow of celibacy, or unless two virgins are together and remain faithful for their lifetime (certainly a lofty, if not
statistically realistic goal), the odds of picking up HPV during one’s lifetime is astronomical. These vaccines can stop the cancers that can affect a woman’s fertility (cervical cancer) as well as other debilitating cancers such as Anal, Vulva, Vagina, Penis and Oropharnyx. (While Anal cancer is survivable, but we do tend to deal with unpleasant side effects after we have won the battle.)

http://www.cancer.gov/cancertopics/factsheet/prevention/HPV-vaccine

Sadly a bill to require this vaccine (which I understand would mandate insurance companies to cover the cost or would have required the state to pay for the vaccine for uninsured students) was just vetoed by Governor Nikki Haley of South Carolina in what appeared to be a politically versus medically based decision, so this issue is currently in the public’s eye.

http://www.independentmail.com/news/2012/jun/20/gov-nikki-haley-vetoes-hpv-vaccination-bill-aimed/

Dr. Oz, your no nonsense approach and tell it like it is/don’t sugar coat or ignore the facts presentation style is exactly what is needed in order to discuss Anal cancer. Your attention to this matter will lead your audience (and yes even the Medical community), and the American people to Awareness, Education; and Screening; and hopefully Prevention of Anal cancer as well as other HPV linked cancers. I urge you to do an entire program on this important health issue that affects both men and women and for which we do not have a public voice. If you will become our voice, for just one day, I assure you it will have a far reaching ripple effect in the successful diagnosis, successful treatment, and successful prevention of these types of cancers.

Thank you for your consideration for this show topic.

Angela_K
Posts: 370
Joined: Jan 2011

Thank you for such a well thought out plea to this show.

I have been reading a LOT about that vaccine(s), and now the verdict for a blanket vaccination is still out for me. We don't know long term effects of these vaccinations for one. An MD friend sent the following link to me just last night. I found it to be a very thought-provoking read. Keep in mind that drug companies are in it for the profit first and foremost. For now, I think this vaccine should be given on a case-by-case basis dependent upon a variety of factors. But that is just my opinion.

http://www.naturalhealthmag.com/health/infection-protection

Peace and blessings.
Angela

shirlann54
Posts: 161
Joined: Aug 2011

I will sent a E-MAIL to Dr OZ too.IHope he will do a segment on anal cancer.

shirlann54
Posts: 161
Joined: Aug 2011

I did send a e-mail to Dr Oz and they sent me a e-mail back saying recived it.But i forgot to make a copy of what i wrote him lol.I ask him if he could please do a segment on anal cancer .And that people are being misdiagnosed for hemorhoids .And there's people out there thinking they have hemorhoids and not going to the Dr .And i told him the story how i was misdiagnosed.....Shirley

rds711
Posts: 113
Joined: Dec 2011

Angela this is a fantastic idea! The following is my submission to Dr Oz:

"Dr Oz,

I am a 51 yo man and was diagnosed with T2 anal cancer in December 2011. I had had small amounts of bleeding with bowel movements for over a year. I saw my primary care physician at onset and was told it was likely an internal hemorrhoid. The bleeding became more frequent so I saw my MD again in November of 2011 and she performed a DRE. She told me she felt something irregular and encouraged me to see a surgeon. The next 5 months became a surreal nightmare with specialists, second opinions, scans, biopsies and fear like I have never known. I am a registered nurse so my mind immediately took me to worse case scenario over and over. The treatment caused me to have burns in my groin and anal area. The pain was unbeleivable for 9 days after treatment stopped then I healed very rapidly.

I was able to find tremendous support via the Amercian Cancer Society Anal Cancer forum. As you know this cancer is rare, though numbers are increasing annually, and most often HPV related. It also carries a stigma because of its location and relation to HPV. I have seen many peoples faces change from concerned to uncomfortable as I told them I had anal cancer. I am sure there are people who are having symptoms but will not go to their MD, or have went and have been misdiagnosed with hemorrhoids.

I believe as health care professionals that we have a responsibility to educate. This cancer has been kept in the shadows for far too long! It is one type of cancer that has a high cure rate if caught early, 80%. Please use your voice to shine some light on anal cancer, the symptoms, the treament, and the unfair stigma.

I had my first post treatment PET Scan last week and it showed NED, please help us to ensure others will get the same result."

Thanks for the great idea Angela!

Randy

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sephie
Posts: 514
Joined: Apr 2009

i am surprised that the ACS would not let you speak .... where are u in texas. sephie

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

did not specify to whom. sephie

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