are we being selfish about farrah's death?

i'm reading alot of posts by people who fell betrayed that more wasn't made of bringing awareness to the destructive ways of hpv, in the death of farrah fawcet.
the day that she dies is not the day that we should expect anything to be made of her type of cancer; the kind; the cause; how much funding and education are going towards treatment etc.
this never has been the correct time to soap box a cause, as much as we all selfishly wished for that. the day she died was a day for celebrating her life, as nbc did last evening with a special.
as for not stating that she died specifically from anal cancer, my word, in this society who of us would want that as the last memory of you, i wouldn't. i think if the media had emphasised anal cancer it would have been tacky since 98% of the public would likely have snickered since she was known for being a sexy actress, and maybe 2% would be interested in finding more out about hpv. i'm afraid we are all selfishly choosing to not understand why last night wasn't all about hpv or more likely all about us. it was,as it should have been about remembering farrahs life.

By jamiegirl
Posted July 1, 2009 at 8:38 am
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the link seems to be broken right now so you can google ucsf anal neoplasia and it will come up with the website with the list of providers

By jamiegirl
Posted July 1, 2009 at 8:34 am
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mobilis - as Martha said, most people don't even think of it, but I'll tell you one thing...at least since I started on this board and mentioned about myself getting an anal pap and anal hpv test, a lot of women here have made comments about not ever realizing that there is a risk there and inquiring how to find out about hpv there. Again, anal cancer is rare now, but it IS on the rise. I like to be proactive about my health so I will do what I can do to prevent something from happening, rather than wait for it to happen. If only poor Farrah knew about the risk back then, maybe she would still be alive today.

Once again, for anyone's benefit, here's a link to find a doc who does the anal pap/hpv test:

http://www.analcancerinfo.edu/resources/index.html

By mp327
Posted July 1, 2009 at 8:08 am
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I think part of the problem here lies within the medical community. Let's face it, in general, doctors are still pretty uninformed about HPV and HPV related cancers. They are either uninformed or uncomfortable bringing it up because of the stigma we are all too familiar with. As an example, I went to my med onc for my first consult and my husband was with me. When I asked him if my cancer was HPV-related he flat out said "no." However, he printed out some info for me to read from the National Cancer Institute's website on anal cancer and it clearly stated that anal cancer is HPV-related in the majority of cases. I think he was uncomfortable telling me the truth since my husband was sitting there. I saw him a couple of weeks ago for a follow-up visit. I went by myself and when I asked him if my anal cancer was HPV-related, he said "most of them are." This was a totally different answer than he gave me the first time. So, I still do not know whether or not my anal tissue had HPV--biopsy samples from anal tissue are not routinely tested for it. Another example: I saw my gynecologist in December for the first time since being dx'd and undergoing chemo/rad. I asked her about the HPV connection and she said "no" and changed the subject!

There needs to be a lot more education in the medical community. I believe, at the very least, if a woman tests positive for cervical HPV, then her doctor has an obligation to explain to her what that means and what follow-up needs to be done. The doctor should also give her information about what other diseases HPV can cause and what tests can be done to rule out HPV in other areas of the body. I believe women are very intelligent and able to digest this information and make informed decisions about their healthcare. If I had ever tested positive for cervical HPV and known about its potential to be in my anus, oral cavity, etc., I would have at least had the information and choice to get additional testing. Anal paps are not being widely done at this time. However, I do believe they will become a more commonly done test when indicated. I think any woman who has tested positive for cervical HPV should consider getting an anal pap. It's too late for me to take this course of action--I've already been dx'd with anal cancer and had that part of my anatomy fried to the max.

And just one more thought about Farrah. I still do not believe it was her responsibility to educate us about HPV. She had every right to keep her disease completely private, but shared much more with us than most people would have done. I still view her as a very courageous person for having done so. And also, I just had to turn my TV off because every morning news program is still obsessed with Michael Jackson's death. Let it go! He was a strange person with a $48,000 a month drug habit--why are we idolizing someone like that?

Martha

Martha

By mobilis
Posted June 30, 2009 at 11:17 am
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With respect, how many people even on this board have started anal screening, even though the vast majority already have either high risk HPV or cervical cancer.

The general population are NOT going to go and make an appointment for an anal pap after hearing about a celebrity dying of a rare cancer that affects 5000 people a year.

By jamiegirl
Posted June 30, 2009 at 9:42 am
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mobilis - to me the benefit of connecting to hpv to anal cancer is that anal cancer IS on the rise, and if people know that they should be screening for it, they will hopefully catch it in time, just as cervical screening usually does. It's amazing how many people even reading this board have said that they never thought of anal cancer when thinking about their hpv. More awareness=more screening=more saved lives.

By mobilis
Posted June 30, 2009 at 9:35 am
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Ariel, I agree with you - it's so easy for us, hiding behind our nicknames and our privacy settings, to say that Farrah (or the mysterious "they") should have done more to publicise HPV. I think we should acknowledge that Farrah more than did her bit just by raising awareness of anal cancer, without championing the HPV cause too.

I also have to ask - even if Farrah had pushed the connection between HPV and anal cancer - what really would have been achieved? It is still a rare cancer, and there are many rare conditions out there - I don't think that people really internalise the risk factors for rare diseases. After all, they don't really internalise the risk factors for relatively common ones - smoking, obesity, etc.

I have to be honest, I still haven't experienced much in the way of a stigma associated with cervical cancer or HPV. I've been very open about it with everyone from my family to my in-laws to my employer. My boss's first comment was "Oh my wife had laser treatment for that too." My sister-in-law (the mother of two teenage daughters said "Isn't it fantastic that there's a vaccine now." My father mentioned a dear cousin of his who had died of cervical cancer, and several other family members and acquaintances generally quite openly discussed their own abnormal paps, cone biopsies, etc. I think that people's response to the issue depends a lot on your own attitude to it.

By ariel1
Posted June 29, 2009 at 8:58 pm
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hi together, my question never had anything to do with micheal vs farrah, it was in response to so many posts insinuating that farrah should have made much more public statements relating that her anal cancer was probably caused by hpv, and that we should all be doing more to stop hpv, etc, but she didn't voice any of that and i think thats why alot of previous posts were sadden about what she or her people did not say. i disagreed with anyone here feeling farrah had a responsibility to anyone other than herself .

By together-we-stand
Posted June 29, 2009 at 8:09 pm
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to answer your question yes i do feel that those who are upset about Farrah being overshadowed by michael is coming from a selfish position and that's perfectly normal, because like myself i'm sure there's a number of persons here who only really knew of HPV was when the found out they had it and decided to research it, and stumbled across this site.

By corellin
Posted June 28, 2009 at 11:07 am
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I've tried to spread the word about HPV whenever possible (and pushed through some amount of discomfort to do so). I was just so angry that I hadn't heard of HPV BEFORE my first abnormal pap. No fair!! So I've tried to be as vocal as possible. I was dating on-line and had the HPV discussion with at least 1/2 the men I dated -- even though I had no intention of getting physical with them. Those conversations went very well. And I've also spoken to family members and neighbors who had teenage girls -- initiating the conversation by asking whether their daughters were planning to be vaccinated and then sharing my personal experience. Those conversations have gone fairly well also. And I also was very vocal with some top people at work (I worked in a hospital) as I was trying to understand why HPV is treated the way it is -- a basic acceptance that women will be infected and no emphasis on basic infection control. It was interesting, but difficult, to have some of those conversations, and I did feel a bit exposed and embarrassed afterwards (but only as it relates to the work people).

By chamomile
Posted June 28, 2009 at 3:04 am
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That is very true. I am guilty of the same. I wish I were stronger. I'm more comfortable sharing (with close people), but not initiating this conversations.

I have a few acquaintances with young daughters. At least of their mom's (who works in my office) talked with me about hpv when she found out about my cancer. She was genuinely concerned and not judgmental. I encouraged her to have her daughters vaccinated. I don't know if she has though. There are other people that I'd like to talk with about this but part of me is afraid of them rejecting the idea and with the self-serving notion that their daughters will never be sluts so this won't affect them. I'm not sure I'm strong enough yet to deal with that from people who are not close friends.

My sister-in-law has already dismissed my advice that she take a break from her long term use of the pill (she previously had abnormal paps...not sure of her hpv status) b/c her ancient ob/gyn told her it "prevents" cervical cancer....which is NOT true (some cancers but not CC). However, her doc is also from the same area as my dentist (if anyone remembers the awkward conversation I posted a few weeks ago), so I'm not surprised that her doctor isn't educated about this. Nevertheless, she chooses to believe her guy over my oncologist!

By ariel1
Posted June 27, 2009 at 10:47 pm
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exactly my point daphne75, if you or we can't shout about our std, hpv virus from the rooftop, why on earth should we expect a dieing movie star to do so.
thank you for being so honest.

By Daphne75
Posted June 27, 2009 at 2:23 pm
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While I'm on the side of wishing that more were done to educate about hpv in Farrah's case, I have to ask, how many of us have educated OUR friends and family on this virus? Though I've told close friends about my situation, I haven't let it out in my broader social circle and refuse to tell my family, being from a very Catholic background. I would love to get the word out, but am guilty of not wanting to deal with the gossip and disappointment I know I would experience if everyone knew. I really wish that wasn't the case.

By flowershoplady
Posted June 27, 2009 at 11:34 am
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i agree, martha! and, excellent points, chamomile. somehow this discussion became a bit of a debate of right and wrong, and i'm sorry if i contributed to that....because i really think we're all saying the same thing.

By mp327
Posted June 27, 2009 at 9:44 am
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This has certainly been an interesting discussion. Here's my take.
1) Farrah was an extremely brave person for sharing her cancer journey with us and not cutting out the unpleasant parts (vomiting, painful liver ablation, her reaction to more bad news).
2) She deserves to die with dignity and it was not her responsibility to educate the rest of us about HPV. HPV causes approximately 85% of anal cancers, so who are we to say that hers was caused by this virus?
3) My disappointment with "Farrah's Story" was that there was no public service announcement or website given that would let people know where they could learn more about anal cancer. I'm not saying they were obligated to make the HPV connection in such an announcement--just give people information to help educate themselves. I think a short PSA at the end of the program stating how many cases were dx'd in 2008 (5,070) and how many deaths (680) occurred, the percentage of cases in men vs women, and common symptoms which may be signs of anal cancer would have been great. It seems a great opportunity to give people valuable info was missed.

I have told my story several times on this forum and get questions from others concerning similar symptoms they are having, which tells me that there is more awareness of this cancer now--thanks to Farrah. Had I known several years ago that some of the symptoms I was having were more serious than I believed, perhaps my anal cancer would have been dx'd earlier.

Martha

By scgirl76
Posted June 27, 2009 at 9:41 am
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I don't think there is a 'right' or 'wrong' here. I do know that before my diagnosis my dad was diagnosed with multiple myeloma and amyloidosis. Only like 2000 cases of amyloidosis are diagnosed every year in the US! This is because there is NO funding, no one knows about it. For all we know thousands could be dying of it yearly. Anyways, people who have it are getting angry and speaking up. Farrah and Ryan chose to give us a glimpse into their world...her battle with cancer. People have been celebrating her for a long time..not just in death. If they choose to reveal that it was HPV related and the truth about HPV gets out there then maybe that's what it takes.
I asked my gyno about HPV because I was embarrassed, angry etc. and she said 99-100% of women (and obviously men) that have had unprotected (and some protected) sex at least 1x in their lives will get some strain of HPV. I asked my PCP and a gyno friend and they agreed.
I know in my town I am shouting it from the rooftops and also educating my children (teenagers) and have had a discussion w/my 16 year olds health teacher. My thinking w/the kids is if they are scared maybe there will be more talk, less partners, and hopefully, eventually more awareness.
I hope this all made sense - you are all always in my thoughts!
Hugs~
A

By chamomile
Posted June 26, 2009 at 11:38 pm
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I wish there was recognition that hpv is not a sexually transmitted disease, as much as it a human disease. It is so common, and yet no one wants to think this could happen to them. This "no way, not me" attitude is certainly not helped by the risk factors for these diseases being described as, "having a high number of sexual partners". Why can't they just say that a risk factor is "having sexual contact with another who has had sexual contact with someone else in their life"? I know that statistically your chances of expose increase with each partner, but considering the huge number of women that are infected on their very first encounter, this risk factor isn't very accurate (in my humble opinion).

Also, not that it should matter but.....the fact that Farrah was such a beautiful icon who was afflicted with this kind of cancer (that does have an uncomfortable/embarrassing factor like colon cancer once did) I think helps to personalize and desensitize the disease. (If it would have been a gay porn star, then I'm afraid that it may have further stigmatized it). So, whether or not her cancer was hpv-related, the fact that she shared her personal story is a beginning.

I don't remember a time when breast cancer wasn't talked about, but it is a good example. So, perhaps we pick up the torch and keep going to educate others.

Ariel, thank you for your kind words. I thought of something after I was reading through the last few posts. I had a PET scan on Wednesday and when I was finished and getting dressed I overheard a couple of ladies talking who were waiting for their scans. From what I could tell either one or both had breast cancer. They were complaining that when Oprah featured Christina Applegate that she did not disclose her stage of cancer and more specifics on her type which may have affected her treatment and options and how the treatment can vary greatly. I guess my point is that we all would like to see our individual causes portrayed better /different than they are....and we're never happy ; )

By flowershoplady
Posted June 26, 2009 at 10:52 pm
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ariel, i'm agreeing with you about what farrah did or didn't say about her illness. maybe i wasn't clear about that. and yes, colon cancer isn't caused by an std....i was trying to use an example of an awareness campaign for something people don't like to discuss.

as for aids/hiv, the names that come to mind are magic johnson who shared publicly that he has aids, and rock hudson, before he died, said that he had aids (which he died from). personally, i don't think that aids can compare to hpv because so many people have hpv and because most people with hpv do not develop cancer.

By ariel1
Posted June 26, 2009 at 10:09 pm
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flowershoplady, you stated that you thought farrah was 'allowed to be selfish' by not chosing to discuss her std connection to her cancer. i don't think its for us to judge what she should or shouldn't say or whether she was being selfish when she was dieing.

By ariel1
Posted June 26, 2009 at 9:52 pm
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katie couric's husband didn't die of a sexually transmitted disease! if we must compare we must find someone who became a spokesperson for a sexually transmitted disease that they are going to die from. think of all the many performers and artists who died of aids, another std, oh yea, i can't think of a one that came forward about it before they died. in fact i don't believe that any person in the public eye has ever come forward to discuss or admit that they have an std. its a deal breaker. everyone see's them differently after admitting 'i have a sexually transmitted disease.' no one to my knowledge has ever publicly admitted to having an std so why on earth would we be so naive to think that farrah fawcet would be the first one in the world to do so? please correct me if there is anyone in the public eye that discusses his or her std's.

By flowershoplady
Posted June 26, 2009 at 9:17 pm
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oh, and, i agree, ariel, that it was her decision on which she shared or didn't share. i have no problems with that. she was allowed to be selfish too!

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