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

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Unread 12-22-2003, 10:26 PM
HPV and the guilt/blame game

Why is there so much anger here? I thought this thread was to share information, not beat each other up about the decisions we've made. We all have opinions, and all have a right to express them.

Hopeseeker, you rock! I am thrilled to see you are concerned so much about the women in your family, and that you feel a responsibility to inform them about this VERY misunderstood issue.

Ladies, unless you and your partner were both virgins when you were married, NO ONE should be pointing fingers. There is not a test to scientifically identify who "gave it" to us.

If you were a virgin before you got married, and were at some point diagnosed with HPV, you shouldn't make your partner feel like a dog because he/she was intimate with someone else before you.

Cancer of the vagina, uterus and ovaries can spread to the cervix without the aid of HPV. Certain types of HPV's cause abnormal cell growth, which can lead to cancer of the cervix, but what about the other causes? Unless you have been properly tested for HPV, you can't assume you had it if you develop cervical cancer.
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Unread 12-23-2003, 12:33 AM
HPV and the guilt/blame game

You aren't be onery! I appreciate your posts. I'm just trying to figure this out. Knowledge is power, if we know what to do with the knowledge, and if the knowledge is of use to us.

Hopekeeper, I love your posts too. Keep 'em coming! I have paid extra, out of pocket, for thin prep tests for the last two years. They didn't pick up my cancer. How weird is that? I had TWO thin preps in 2002, both were fine. Six months later I began to have symptoms. Since the Paps were negative AND the HPV tests, it took months for them to even think that might be cancer. As my gyn/onc said I was 'burned' by pap tests, they failed to do what they were supposed to do. In 30 years they never showed anything. That's not how they are supposed to work. They should have shown something, years back. Oh well, water under the bridge, or over the dam, or somewhere!

Sandy, thank you also for posting. It was very helpful. I know my husband wasn't unfaithful and my doctors never thought I had HPV, and I have NO other risk factors. I think I was simply unlucky. But then isn't everyone who gets cancer unlucky?

Melanie, I guess I am rather thick skinned, or insensitive, or both, because I missed who is angry or attacking here. I'm not pointing any fingers. Neither my husband or I were virgins when we married. I'll only point fingers if he has been unfaithful SINCE we married because that wasn't the deal we made! But I am honestly not concerned about that either. Although the thought did cross my mind when I found out about what usually causes cervical cancer. I don't think anyone is holding their partner responsible for something that happened before they were married. That would be rather unfair!

Until this thread, I never knew there was any stigma attached to cervical cancer! I honestly didn't. I figured that most of it came from HPV, but since everyone has sex, and it is rare to be a virgin when married, what's the big deal? I had NO clue that doctors or nurses or anyone else would assume that I had an unfaithful husband or that I had an affair. I still don't think that happens, I just don't think people think about that when they know someone who has cervical cancer. I am sorry that anyone else feels such a stigma attached to this disease. They shouldn't!

Whew, my hands are tired.

Hugs and loves to all,
Unread 12-23-2003, 01:29 AM
HPV and the guilt/blame game

Janie, the pap is a screening for abnormal cells and cancerous or pre-cancerous changes of the cervix, not HPV. If abnormalities are found, the samples can now be tested for HPV. If HPV is found, then an HPV hybrid test is initiated to determine what type of HPV it is. If it is a oncologic type, a woman is at greater risk for developing cervical cancer.

In my case, that hybrid test was performed, but my former gyn never told me - I found out when I got the bill from some lab in Texas! I had to have a colposcopy and cryotherapy because I had lesions all over my cervix, and that biopsy showed moderate dysplasia. I didn't know about HPV until January when I had my colposcopy. After two more abnormal paps, I went to another gyn in October. He asked me if I ever had a hybrid test, and of course I didn't know what he was talking about. I called my former dr last month about the lab bill, and she explained it to me.

As I pointed out previously, there are other reasons women get cervical cancer. However, HPV is certainly a common cause - look at all the research that PROVES a link between HPV and cervical cancer! Many cancers spread from other areas of origin. Many gynecological cancers develop because of high estrogen levels too.

I think if you visit some of the websites listed in this thread you will get a good understand about the way the tests work and what preventative processes are available now.
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Unread 12-27-2003, 05:20 AM
HPV and the guilt/blame game

I find myself a bit angry at how many doctors are "assuming" a link to HPV based on a woman having cervical cancer. The reality is, assumptions may stop people from asking new questions as there may be other causes being missed because HPV has become the easy "diagnosis of cause".

Yes, I have specifically been diagnosed as being positive for HPV, but as I wrote in the post about when you were "diagnosed as having cervical cancer", in the years I was in my teens and early 20's, I couldn't even find HPV or its link to cervical cancer in my medical dictionary for my nursing course. It is like blaming a hit and run victim for not knowing a car was careening around the corner even if they didn't wait for the light before crossing. And it isn't well dealt with even in school sex ed courses today since research shows that the strains of HPV that causes sexual warts aren't even the same strains that cause cervical cancer.

I appreciated the person who answered me earlier and said that what I need to do now as a newly single person about sexual relationships in the future is no different than what anyone esle should do. We aren't the only ones who should know that condoms don't block 100% of sexually transmitted conditions or that hand to genital contact can also spread the conditions. I may have the opportunity in the future to use what I have learned to help others gain knowledge. We can't decide what people will do with it though.

I really have appreciated all the women who have struggled honestly with this issue on here as it is helping me to come to terms with what all this means in my life. I am going to be responsible with the knowledge I have and would be responsible even if I knew it was "assumed" that HPV is a cause for the cancer. But I am not going to stop living because of it. Nor am I going to close off the possibility of a future relationship based on this knowledge. Life will go on even though I will deal with it with a little more knowledge and wisdom than I had in the past.
Unread 12-27-2003, 08:10 AM
HPV and the guilt/blame game

Hello all, I have to have a cancer in situ on the vulva removed along with my hyst. I haven't seen many posts about this. I called for a copy of the path report from the biopsy to see if HPV is mentioned. I know that I had that years ago, but no recurrences and no abnormal paps in years. So not sure. Anyway, it just kicked by butt when she said "cancer in situ". Hopefully all will go well but this is a rough thing. All my husband heard was "cancer" even thought the doc referred to it as a "precancerous skin condition". I value my privacy and he's so spazzed out he's yacking way too much because he thinks people who care about me have a "right" to know. I just wrote a letter to my doc (havent' mailed it yet) asking, among other things, that she wait for me to wake up to discuss any unusual findings during my surgery with me prior to mentioning anything to my family. Maybe a little controlling but that's how I feel. She can tell them that it went well, etc. but no more......
Unread 12-28-2003, 12:31 AM
To: Who me

Your husband is telling people that HPV caused your cancer? Why would he do that? How it would be helpful to you, or anyone else, to know that? Sheeze. What difference could it possibly make HOW you got cancer? Isn't the fact that you have cancer enough for your friends to know? Isn't the point of telling them so that they can help you and your husband by offering their support? The question isn't who has the 'right' to know, but how that knowledge will help, or hurt, you or someone else. If telling other people isn't going to help you, the patient, what is the point? NO ONE, other than you, has any 'right' to know anything! They certainly have no right to know anything that you don't want them to know! Is your husband upset about HOW you got cancer? Or angry over something else? I just cannot imagine why someone who loves you would do this, unless you told him to, or he's angry about something. I sure hope that is not the case. We all need the support of those close to us, and not hurtful actions, of any kind. Please, tell your husband that you may have cancer and the focus should be on what is helpful to you, not hurtful, and his actions are being hurtful! He needs to deal with his own feelings, without doing something that you don't want him to do and violating your privacy. He has NO 'right' to do that!

You have every right to control what anyone says about your condition to anyone else, including your husband and your doctor. So write that letter to your doctor and CC your husband!

Lots of hugs, AND a zipped lips,
Unread 12-28-2003, 01:30 AM
HPV and the guilt/blame game

Hi Denton56,
n I think you're madder than I am! The husband isn't telling people HOW I got anything because none of us knows for sure. The doctor told him it's just bad luck, a bump in the road. I know that everyone needs support, I guess my point is that I should be able to pick who it is that I need and want support from. I'm not close to many people and so I don't feel the need for lots of people to know my business. I guess the rest of the story is, I don't HAVE cancer, yet he only heard the one word (as part of pre-cancerous) and it got him totally upset. I guess the moral of the story is, only let the cool heads in when you talk to the doctor, even if they're your family. For my money, it's just more stressful to feel that I have to filter all communications. Don't worry, he is fully aware of my feelings and has been told in no uncertain terms to stop it. I can't believe that we sat in the same room and heard the same thing and he came away with a totally different message.
Unread 12-28-2003, 02:18 AM
HPV and the guilt/blame game

Once it is termed "cancer in situ" it is on the line between cancer and pre-cancerous, sometimes termed a level 0 cancer. That simply means it hasn't become invasive so both of you are right. I do agree though that it is your right who knows.
Unread 12-28-2003, 05:13 PM
To Who Me

First, don't we all feel that way when we get this, "who, Me?" So that was a good choice for screen name!

I am glad to hear that your husband understands your feelings and has agreed to stop telling everyone. I have a friend who had breast cancer. She's married to a politician who is also a close friend. She's a very private person and he's the opposite. He immediately blabbed her diagnosis to everyone, much to her chagrin. Unlike your husband, he never stopped telling her story. When I got cancer I knew that telling them meant the whole world would know, despite his promises not to tell anyone. Sure enough, at every political function, meeting, community parade or gathering, someone, who I barely knew, would come up to give me a hug and tell me how sorry they were and, always, how wonderful I looked. (It's amazing how much a cancer diagnosis improves one's appearance!) I was less than thrilled, but the support of the couple meant so much to me that it was worth it, I guess. I do wish some people would learn to respect the privacy and wishes of others, but some people just aren't capable of doing that. But I agree with you, having to filter everything is also very difficult and stressful. There are no easy answers with this **** disease. EVERYTHING always seems to be more difficult than it should be. Sigh.........
Unread 01-04-2004, 01:52 PM
HPV and the guilt/blame game

Yes, it is an individual decision as to who knows. For me I told my family, my husbands family (immediate only) and 3 close friends.
My main reason for not telling a whole lot of people is because my diagnosis is still up in the air. I am awaiting the results of a cone for adenocarcinoma in situ. I did not want a lot of people knowing simply because then everyone is awaiting the results and that is all I would be talking about.
My husband and I desperately want children and unfortunately I am at the age where everyone is asking when we are going to have kids. I myself will never ask another person that question ever again!
The past few weeks I keep coming back to this thread to see how everyone is. I myself have made some breakthroughs. The night before my cone I was a mess, but right now I am at peace with this and the fact that it was most likely caused by HPV ( I have never been told I am HPV positive and my MD does not see the relevance of testing at this time - at this point I assume I did or do have it).
Happy new Year everyone.

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