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

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  #1  
Unread 12-20-2003, 09:12 AM
HPV and the guilt/blame game

Hello, I recently was applying to another thread about cervical cancer and noticed some interesting trends in the answers. I guess I reacted to those trends since it was a topic still being resolved in me that the comments aroused. I am going to start a new thread for any of us that need or want to deal with the feelings of guilt and defensiveness about the factors informational sources contribute to our area of cancer. That way the other thread can get back to its intended purpose of collecting info.

I know I may be out on a limb since this seems to be a painful and hard to discuss issue for a lot of women dealing with this. It IS difficult reading the information written about cervical cancers. I wish there was a way to "make it all better". But whatever is said about it, what came through in what was written there is that many women come to this cancer without warning and without fitting all the risk factors, especially the ones that contribute to feelings of guilt/blame. The point is, don't blame yourself or your partner -- the statistics say it isn't worth it. And heal -- both physically -- and emotionally from the "wounds" of having this kind of cancer.

Hopefully, this thread will give a place for any who is struggling with the reality of HPV and some who are mystified by their diagnosis in terms of their own factors, to be able to deal with this important part of their overall healing. I don't know how many women will really respond to this since feelings of guilt and defensiveness are not always easy to deal with openly. It is just something I believe in that if a person understands the hurt of any event in life, a part of healing is doing what you can to help others deal with the same issues or experiences.

You see I was one of the women who DID find out a year earlier that my "lesion" of pre-cancerous cells, as my doctor called it then, were related to something I had never heard of before called HPV.

All I found out about the virus at that time was that it was thought to be prevalent in most of society with an increased likelihood if you or your partner had had more than one sexual partner. It can't even be accurately tested for in males because of the thickness of the skin on their penus. Papilloma viruses are not all sexually related, variations of this virus were responsible for anything from warts on the hand and the feet to warts on sexual organs to changes in the cells of the cervix. All of these are different strains of the virus and don't seem to cross over to other types of symptoms.

I also found out that the factor of having the high risk strains of HPV did not necessarily result in cervical cancer, nor did the absence of these strains mean that cancer would not occur. For the most part, HPV can be present with no symptoms at all and only 3% of women who have come into contact with it will show the abnormal changes on the cervix or end up with cancer.

I also found out that in many people the HPV virus tended to heal itself or could be removed with specific procedures so I got the laser surgery, got the report from my doctor that things looked good and I didn't have to come back to him in 3 months any more but could return to my regular doctor for a check in 6 months. I had every reason to hope it was over for me and the concern was in the past so began to move on in my life including beginning a new relationship.

Last July's pap smear concerned my doctor enough to have him return me to my gyn. The rest is history -- my gyn only got a mild reading but decided to do another laser because of my doctor's reading. When I alerted him to the fact that he had already done two other laser surgeries in the 3 years of reoccurences for me, he mentioned the hysterectomy as an option. That was too big of a leap for me so I ask for an alternative. I had my cone biopsy and D&C in October with good reason to believe excising the larger area could get all the abnormal cells and end this ordeal once and for all. In early November the results came back revealing that the surface dysplasia was mild but at deeper levels, endocarcinoma in situ, stage 0 cancer, was wide spread. There was also indications of changes going on in the uterine sample so I did have the hysterectomy at the end of November.

It was only in going over the pathology report to understand it that I came face to face with the HPV factor again and how prevalent is the belief that "all" cervical cancers are associated to HPV. It is no wonder there is so much defensiveness!

Peace to all the sisters who have or do not have HPV as part of their diagnosis for their cervical cancer. Our job in this now is healing and the stress of guilt and blame get in the way of that.

But if you can't get past it, read. Know what this is all about and realize that there are no hard and fast rules on this one. We just happen to be in the 3% of women who have shown these cervical cell changes because we MAY have one of the 30+ known strains of this virus that effect the sexual organs or any of the other strains they are still deciphering the biological code for. The doctors' don't have all the answers on this one yet and the virus itself is so prevalent in society that its origin is hard to trace even if we know we have that factor.

This is one of the links I found in my research on this. It is especially good because it contains a list of other well acclaimed organizational links to research this area.

http://www.asccp.org/pdfs/patient_ed...hould_know.pdf

Note: This write-up does talk about the "preventable" nature of cervical cancer but that prevention is in other hands than ours now as many of us only learned about the possibilty of this factor too late to "prevent" its results or may have had the factor "ruled out" for us with testing, but it does help to understand the virus in order to help us let got of the guilt/blame game.
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  #2  
Unread 12-20-2003, 09:24 AM
HPV and the guilt/blame game

Yes!!

I think the link you posted has lots of good information! The most important line was the one that said basically everyone who EVER has sex is at risk - the lifetime chance of getting a genital HPV is 75% - so sisters - we're all in this together and there's not much use in blaming people or feeling guilty. It's sort of the luck of the draw whether one picks up a virus that results in cervical cancer or not.

Dorrie
  #3  
Unread 12-20-2003, 11:31 AM
HPV and the guilt/blame game

Hello, thanks again hopeseeker for the link. OK so I have HPV, ( I don't know that for sure by testing but my MD feels it is the cause of all cervical dysplasia and cancers), the research indicates that I have probably had this for many years, so I am one of those women whose immune system did not fight the virus. Is there anything I can do to effectively fight the virus now? I have adenocarcinoma in situ and I go for a leep cone dec 23. I want to know if there is anything I can do to fight the virus and stop it from causing more problems. I do not feel that I am an unhealthy person, but I am trying to improve my lifestyle.
thanks
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  #4  
Unread 12-20-2003, 02:06 PM
HPV and the guilt/blame game

Hi All,

This topic packs such an emotional wallop that it has appeared here quite a few times before. Personally, I don't feel at all defensive about it---my tests turned up negative for HPV but nonetheless I'm 100% sure that I've had it due to my medical history. I work in the field of cancer research so maybe I'm just completely de-sensitized to the idea of HPV. As I posted in another thread, I don't think that having HPV is should be attached to some kind of stigma, especially since it's so very common (possibly upwards of 70% of the population infected). As someone pointed out earlier, were there not a stigma attached perhaps more women would know of the risk factors for dysplasia.

I think it will be especially interesting to see what will be recommended when the HPV vaccine is available (probably 5-10 years from now). Personally I think it should be a mandatory vaccination (for girls AND boys) for entering high school but once again I think the stigma will dictate who receives this vaccination.

Someone asked about the possible role of nutrition in cervical dysplasia. Some studies have shown that folate deficiency may contribute to the disease process, so taking 400 mcg/d of folate may be helpful. Otherwise, just eating well and keeping your immune system in good shape may help prevent dyplasia and cancer.

Anyway, here's a link to an earlier, lengthy discussion on the subject here at CC, just in case you want to check it out!

Beth

https://www.hystersisters.com/vb2/sho...threadid=90572
  #5  
Unread 12-20-2003, 03:09 PM
HPV and the guilt/blame game

I am so glad that you guided me to a prior thread on this topic. I feel better already. When discussing my diagnosis with my family, I want to be honest with them, but lets face it telling your mother that you may have cancer because a STD - that is not easy. Being able to share all of the statistics with her has been helpful.
thanks and Merry Christmas to all
This web site has given me so much.
Sandy
  #6  
Unread 12-20-2003, 04:27 PM
question on retesting

Hi all, have just read all 3 pages of recommended thread and there is so much info I may need to go back and reread it all just to absorb so many facts about HPV.

I had LAVH, cystocele, retocele, enterocele, Burch for enlarged uterus, anemia, back pain, heavy bleeding and prolapse. Surgery went well and ovaries left as they looked healthy. No real complications that lasted after surgery till recently (another tale!).

However, my path report of my uterus and cervix came back with CIN ll/HPV likely cause of dysplasia. MY earlier smear only 10 months previous was fine, so this dx came as a total shock. My gyn said that by removing the cervix and having clear margins means I have almost no future risk of dysplasia.

However, after reading threads and posts and knowing I had so much cutting and stitching done I wonder just where the HPV had a chance to get to or may strike next. I have had two vault smears and they are clear but was told if after 3 years and all clear I don't need any more. I don't think I agree with this now, and would like to hear what you think.

I worry about keeping stress levels down and immune system up. I felt so much better after my hyst I took on a primary teaching degree course part time so I could continue working as a teacher aide. I found my first year very hard going and fell sick with flu, sinus, and what I thought were kidney infections but now look like being caused by ovarian cyst and adhesions on my urether tube. Am going in for right ovary removal next month as I can't continue study and work with the pain from this cyst. Does this mean I am giving HPV a chance to reactivate?

I am 42, have 3 children, two sons just under 10 lbs, including my firstborn, and have a mum who went into menopause at 40 but as she had Grave's disease it wasn't accurately diagnosed for several years. I have my thyroid checked every two years and so far have gone slightly under a couple of times but then next reading is okay. Despite glowing with heat for past two months that have amazed my DH, my hormone levels don't indicate meno yet.

Would love to hear from anyone who has experience or more info, thank you, Linda
  #7  
Unread 12-20-2003, 06:59 PM
thanks for the links

Thanks for the link to the other thread and its links to other informational site. My intimate other and I have been having some serious discussions about this since I have begun learning more sobering realities about this virus in the past 24 hours of reopening research. The new information I found has had a very sobering effect on him and he is having to come to terms with it through learning more about it himself.

Since there is the likelihood that I contracted this virus before I ever married, I even sent my ex some of the sites found so he could be aware of this should he move on in the future. Not an easy thing to do but he handled it well for now.

I guess that is how I can do something positive about this. At least I can alert the men in my life of the problem -- the one present and the past -- so they can make aware decisions about their choices. It doesn't matter where the virus came from. What matters is raising awareness. God, it hurts though to know that this has such far reaching impacts.!

I also plan on talking to my 20 year old dd seriously about her risks since she has several risk factors in her lifestyle including smoking, a period of using birth control pills, anemia which decreases her immune system, and having had sexual contact before she was 21 with only 2 different partners but both who had had other partners. Now with my diagnosis of cervical cancer, another risk factor has been established. I don't know what choices she will make as she was on her own as a young adult for most of these choices. If I can stress to her the importance that she recieve annual pap smears because of these factors, maybe I can spare her from this.

I am glad my 17 year old dd has chosen no sex as her contraceptive of choice because of her awareness of the emotional impact having sex would have on her but will definately make sure she is aware of this issue. As to my ds, I will have to alert him too because I know he also has some at risk factors and so may be carrying the virus as well. I was not a lax mother, but when my kids became young adults there were decisions they made that took the reins out of my hands.

If only I had known what I know now, this information would have been within the informative talks that they seemed to accept and respect from me through these past years. Perhaps by not dealing with their choices as stigma in the past, the girls will hear me about the need to have regular pap smears starting now while they are young.

I may not be able to go back and change what has happened in the past, but I can go forward with more knowledge and empathy on this issue. Maybe I can make a small difference in the world I live in. Who knows what difference can be made if we all deal openly with this in the circles available to us.

Peace to all.
  #8  
Unread 12-20-2003, 07:43 PM
HPV and the guilt/blame game

HI just had radical hysterectomy on Oct 28 for cervical cancer. The doc even removed my lymph nodes in that area so the likelihood of recurrence would be low. I didn't have any symptoms, but an abnormal pap smear...I went from a leep, to cone, to hyster in span of 6 months. I was shocked to hear that my cancer was probably due to an STD. I hadn't been with a man in over 25 years. My sexual partners had been women. Later I found in talking with a few of them, that they had abnormal cells removed from the cervix. This got me to thinking about the possibilty that it can be spread in different ways. All women need to be concerned..Charm
  #9  
Unread 12-20-2003, 07:59 PM
HPV and the guilt/blame game

My abnormal pap was sent to a lab in TX, where it was checked for HPV. It came back an HPV39, CP141, which is one of the more oncologic (sp?). I love this thread because so many of us deal with the feelings that are associated with this virus. It is common, it is important information to be shared, and it is CRUCIAL for women with this to be supported, especially on this site. I didn't know ANYTHING about HPV, or WHY I got a pap smear in the first place! It was just "understood" I guess. I did the research, and found out things that my mom just never told me!
  #10  
Unread 12-21-2003, 01:28 AM
1Blackcat

Why would you need to explain this in such detail to your mother or anyone else? At this point why would it matter to any of them how you might have gotten cervical cancer? Why tell your mother that it might have been caused by at STD? What good does it do her to have that information? I don't believe in sharing information unless there is a reason to do so, particularly if the other person might find that information upsetting or painful. Why does anyone need to know HOW you got cancer? Isn't the fact that you have it enough information?
Hugs,
Janie
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