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HPV and the guilt/blame game HPV and the guilt/blame game

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  #41  
Unread 01-05-2004, 08:56 AM
Feelings of Guilt

Hi everyone,

It is so great to see so many women willing to talk about this and share their feelings.

I was diagnosed with a primary vaginal cancer last year. They had trouble identifying what type of cancer I had. It turns out it is very rare, in fact only 2 other cases in the literature. But even before I knew what type I had, I was on the internet looking for information. I came across the info that vaginal cancer is caused by HPV. That was like a baseball bat to the gut.

I was more worried about what may have caused my cancer, than the cancer itself. All I could think about was that I may die because of decisions I made as a very young adult.

Like many other people who came of age in the 70's, I went through a period as a young adult when I flaunted the conventions about sex. And now I was going to pay the ultimate price. I was very ashamed. I am working through those feelings. Sometimes I am afraid others will find the info on vaginal cancer and judge me. You know things like, well you reap what you sow kind of thinking.

I think more and more that cancer is going to be linked to viruses in general. The kind of cancer I had has been linked to the Epstein Barr virus in other parts of the body. That was not the case with me but a couple of years before I was diagnosed with cancer, my GP found lots of antibodies for a virus called CMV. CMV is very similar to the Epstein Barr virus so who knows. Ok I a getting off topic here.

I just wanted to say thanks for the opportunity to talk about my feelings. Also for helping me to work through them.

Sharon
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  #42  
Unread 01-05-2004, 09:54 AM
HPV and the guilt/blame game

Sharon,

I am glad you shared about the other findings. I have to admit all of this has made me very aware and interested in learning more. I have gotten past my initial struggles at least for now and am ready to move forward as my recovery weeks end and I start back to work. I do feel a bit "older and wiser" at my young age of 46 -- LOL. It probably helps that my friend came through with better understanding as he adjusted to the news and though we are dealing with each others as friends at the moment, it is a friendship that is supportive. I agree with you also that having others willing to talk about this has been a help. Glad you shared also.

Linda
  #43  
Unread 01-05-2004, 10:12 AM
HPV and the guilt/blame game

Hi Linda,

Thanks for the reply. Luckily, I have been married to a great quy for 26 years. When confronted with the idea that my cancer may have been caused by an std, his attitude was that neither one of us were virgins when we got married. If we had HPV there was no way of knowing where it came from. So there was no blame or anything from him.

I am glad you and your friend have come to an understanding. With so many in the population carrying HPV, there really is no cause for the stigma some of us feel. Mentally that is easy to say, emotionally is another story.

I have two beautiful teenage neices. I worry so about them. The oldest is 19 and just announced that she is pregnant. She is not married and probably does not want to marry the father. My biggest concern is not that she is pregnant. But that she is having unprotected sex. Our young women need to learn to protect themselves. There are too many dangers out there today. At least they have the benefit of knowing before hand. We did not.

Take care,
Sharon
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  #44  
Unread 01-05-2004, 11:52 AM
HPV and the guilt/blame game

Holy cow!

I've been gone for two weeks w/out access to a computer and was shocked to find this thread with so many responses!

I have CIS of the cervix and am having my TVH next week. My DNA test for HPV had come back positive last year after an atypical pap. I was shocked to get that diagnosis and find out what HPV was! I'd had 5 paps and 2 colpos over 15 months. Unfortunately it only took 5 months for my pap to go from atypical to severe. My poor husband feels guilty- he's convinced that he's the reason I'm going through this. I hadn't been with anyone else willingly up until I had met him, but I was raped when I was 19. Very few people know about it, and that's the way it should be. My hubby knows, but feels like he's to blame anyway. I haven't discussed all of it with many people, but just last week we were visiting some old friends and my husband spilled the beans about my surgery and diagnosis. The friend's mom confronted me and said something about my "uterine cancer". When I corrected her and told her it was cervical she was shocked. Her daughter, who is an alcoholic and drug addict who sleeps with guys to get a fix, had the same thing and she said she "knew all about it". She was obviously judging me and I didn't know what to say, so I just changed the subject.

It's hard enough to deal with the outcome- why dwell on what may have caused it? I've been with my husband for 14 years and while I've had my moments of "what did I do to deserve this?", I know that no one "deserves" it. I don't blame my husband, certainly. When I have my moments I blame the creep that violated me, although that's not very productive either. What's done is done. It's just too bad that people are so judgemental.

Best of luck to everyone in dealing with the diagnosis and all that comes with it!

Colleen
  #45  
Unread 01-05-2004, 02:15 PM
HPV and the guilt/blame game

Hi Colleen,

I am sorry to read that you had been raped. I would be angry with the creep too. As far as the friend's mother, she may think she knows something but she doesn't.

You have a great attitude. Good luck with your surgery. You and your hubby will have a long happy life together.

Take Care,
Sharon
  #46  
Unread 03-06-2004, 09:35 AM
Statistics and HPV

HPV is the only know "cause" of cervical cancer. In studies 99.7% of all cervical cancer cases can be linked to HPV. It is not so much how much sex you have but rather how strong is you immune system to fight off the virus. As AIDS activists have been claiming for years, "A virus has no morals."

I remember reading this article in the New Yorker in 1999 before I had my first abnormal PAP smear. It scared me and my friends and I had no idea it was to become a big issue. I remember how the article stressed that the girl who died of cancer had only one or two sexual partners in her life and I guess the point Groopman was trying to make was having sex put you at risk.

From the New Yorker:
http://www.jeromegroopman.com/pap.html

An interesting account of one womans experience from Nerve online:
An http://twist.lib.uiowa.edu/webclass/.../tracingimage/
  #47  
Unread 03-06-2004, 11:42 AM
HPV and the guilt/blame game

My dh also feels guilty, although with this virus guilt is useless --it just gets in the way. What I would like to know is this:

HPV is a virus. Can you ever really eliminate it from your system? If so, how?
  #48  
Unread 03-06-2004, 11:57 AM
HPV and the guilt/blame game

HPV is a virus. Can you ever really eliminate it from your system? If so, how?

Hi Stella,

With regard to this question, you can eliminate it from your system. The most recent studies show that there seem to be two "grades" of HPV infection. The first is where it is present in the body, but the virus not yet incorporated itself into host's genetic material. The second grade would be where it is incorporated.

It is not yet clear how the virus goes from unincorporated to incorporated, but it seems that the immune system has a role in preventing incorporation.

So, if the virus is unincorporated, it can be "shed" or fought off by the immune system. This has been shown in studies of women who are thoroughly tested for HPV, found positive, and then later test negative repeatedly.

Oddly, I never tested positive for HPV, though I'm "positive" that I had it, due to my history of abnormal paps.

Hope this helps.
Beth
  #49  
Unread 03-06-2004, 12:16 PM
HPV and the guilt/blame game

Beth, let me ask--since I know I have "high risk" HPV, and I assume that is what caused my cancer, what happens next? Do you assume that it is localized and leaves with the uterus? Would that mean that I have, still, unincorporated HPV and could use immune-stimulating vitamins, for instance, to keep it from becoming incorporated? (I'm beginning to see myself as a kind of cellular level CEO here...) Where did you get your info? I'd love to have a reference work.
  #50  
Unread 03-06-2004, 02:07 PM
HPV and the guilt/blame game

Hi Again Stella,

CEO of Cells I love it! Anyway, I'm not sure if this will fully answer your question but if the cervix and uterus are removed, I think the HPV goes with it. Here's why: HPV preferentially attacks cervical epithelium (and, in some rarer cases vaginal epithelium). It does not seem to like uterine tissue, ovaries, etc. So once the preferred host tissue is gone, I would think that the HPV would be gone as well--generally speaking. Then it would follow that unincorporated HPV would be conquered by the immune system.

So yes, I would say continuing with immune system boosting agents would always be a great idea!!

Anyways, I'm a scientist so I get an email once a week with the latest in cervical cancer publications from PubMed. If you search on PubMed you will get the same info that I do!!

Good luck!
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