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National Cervical Cancer Coalition


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 Post subject: Hello and Support
PostPosted: Tue Jan 20, 2009 6:02 pm 

Joined: Tue Jan 20, 2009 5:40 pm
Posts: 17
Hi everyone. I've browsed the boards a couple of times over the past month or so and finally decided to sign up in hopes of helping put my mind at ease even more than reading posts has done. My brief story... about 4 months ago I received my first abnormal PAP, and subsequent colposcopy/biopsy confirmed CINI with 'focal CINII'. My doctor said she was confident she had removed all the CINII during the biopsy, so she recommended waiting and repeating the colposcopy in 6 months. I went for a second opinion last month, since I was freaking out about how fast a high-risk strain might progress, and he said the colpo results 'didn't look like anything worrysome, i.e. moderate/severe dysplasia'. Looking back I realize he didn't say whether he stilll saw abnormal cells or not (he seemed really nonchalant about it). He didn't take a biopsy since I was due back to my regular doctor in 3 months. I'm 25 (good shape, eat well, don't smoke) and, for various reasons, am almost 100% certain this HPV infection is new as of about 9 months ago. I was shocked at how quickly an apparently new infection could progress (although I didn't know much about HPV prior to this unfortunately). Does anyone know if family history/genetics plays a role in how the body reacts? I have an aunt and a cousin who have had trouble with HPV (both have had multiple treatments, although both also smoke), and I'm worried I'm 'genetically stacked' to have trouble clearing the virus.

I know the primary concern in most womens' minds is cancer, but my understanding is that with good follow-up treatment this risk is very low. Therefore, my primary concern has been for future pregnancy, as I know treatments for CIN can lead to trouble carrying a baby. I haven't seen a lot of info on that, but I only looked at the first five or so pages of old posts. I guess I'm mostly looking for support and 'success stories' from others who have gone through a dysplasia diagnosis, cleared the virus with or without treatment, and/or had children successfully afterwards. The waiting for future PAPs/colpos is extremely hard, especially since you can't just take a look at your cervix to see how it's doing! Some days are pretty normal, and some days I feel like I'm going to go out of my mind sitting at work thinking. Thanks for reading. :P


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 Post subject:
PostPosted: Mon Jan 26, 2009 12:13 pm 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Family History and Cervical Cancer
HPV News December 2005
Subscribe at http://www.ashastdwebstore.org/hpv-news.html

Having a close relative with a history of cervical cancer may increase a woman’s risk for developing the disease, according to recent research from Italy.

Virtually all cases of cervical cancer are related to “high-risk” HPV types, but the infection seems to be transient for most women and cancer is a rare outcome. Researchers aren’t sure why HPV infections persist and cause cervical cellular changes that progress to cancer in some women, but co-factors (such as smoking or infection with other sexually transmitted infections) are thought to play a necessary role.

To examine if a family history of cancer could be linked with cervical cancer, Dr. Eva Negri and colleagues used questionnaires to interview 1,700 women who were patients at a network of hospitals in Milan, Italy. 786 of the women were diagnosed with invasive cervical cancer, and the rest were attending the hospitals for reasons unrelated to gynecologic conditions. The researchers queried the women on behavioral and personal characteristics, and if a sister or mother had ever been diagnosed with cancers of the breast, ovaries, cervix, endometrium, or uterus. The study adjusted for factors including age, smoking, oral contraceptive use, and lifetime number of sexual partners.

The study found having a close relative (mother or sister) with a history of either cervical or uterine cancer was associated with a two-fold increase in the risk of having cervical cancer, but family history of endometrial, breast, or ovarian cancer was not linked to increased risk for cervical disease. The authors say these results are similar to those of other studies.

Cervical cancers usually occur in the “transformation zone,” the area of the cervix where the tough, flat squamous cells that line the vagina overlap with the more delicate glandular cells of the uterus. Most cervical cancers are squamous cell carcinomas (SCC), but the American Cancer Society estimates about 10-20% are adenocarcinomas, cancers occurring with glandular cells that can be trickier for Pap tests to detect, as they tend to develop higher in the cervical canal.

The investigators in this study noted that cervical adenocarcinomas were linked more strongly than SCC with a family history of noncervical gynecologic cancers (especially endometrial cancer), which Dr. Negri says is potentially explained by an inherited predisposition to these cancers.

Differences in risk factors between cervical SCC and adenocarcinoma’s have also been suggested by other research, such as a 2003 study by the U.S. National Cancer Institute linking cervical adenocarcinoma with obesity.

As to why the same cancers are often found within families, Dr. Negri told HPV e-NEWS “There could be two explanations for the familiar aggregation that is observed for almost all cancers: 1) an inherited genetic susceptibility or 2) members of the same family tend to be more similar, in terms of risk factor exposure, than the general population.”

She says genetics seem to play the more crucial role, though: “A higher risk for a cancer in those with a family history of the same cancer is often observed in the absence of exposure to main risk factors. Thus, the first explanation (genetic) is considered the cause of the observed aggregation for many cancers. For cervical cancer, however, there are few epidemiological studies.”

E. Negri et al.
Risk of cervical cancer in women with a family history of breast and female genital tract neoplasms.
International Journal of Cancer
2005; 117(5): 880-81.

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 Post subject:
PostPosted: Mon Jan 26, 2009 12:22 pm 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Hi there thebear,

Thanks for your post. Just above you'll see the HPV News article about family history and cervical cancer. There may be a link, although it seems to be less than overwhelming and is strongest with a relatively uncommon type of cervical malignancy that involves glandular cells. Still, any risk can likely be mitigated with follow up exams and, treatment if needed. You seem to be following medical advice in this regard.

I understand your concern about fertility around screening and treatment; many women have questions about that, of course. Most women do NOT experience infertility as a result of follow-up with CIN, but ask your doctor about that given the extent of your cell changes and what they may want to do.

Also, the time frame you mention is not alarming re: CIN.

I hope this helps. Please keep in touch and post anytime.

Best always,
Fredo

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 Post subject:
PostPosted: Mon Jan 26, 2009 3:33 pm 

Joined: Tue Jan 20, 2009 5:40 pm
Posts: 17
Thanks for the reply and the article, Fredo. At least it doesn't seem to be an overwhelmingly strong genetic link, but like many areas of HPV info, it looks like research is lacking. I guess it's just a case of 'wait and see' and do what I can to be healthy in the meantime. I wish the stories on the internet weren't mostly of the gloom and doom variety, but I guess the women who have had success clearing HPV often don't bother to visit message boards anymore either. I'll be sure to add at least one positive story to the mix if I get good news at some point. :P Thanks again.


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 Post subject:
PostPosted: Thu Mar 05, 2009 7:08 am 

Joined: Tue Jan 20, 2009 5:40 pm
Posts: 17
Well, I said I would be sure to post if I got any good news, and I'm hoping yesterday was the start of good news for me. I went in for my follow-up colposcopy 6 months after my first abnormal PAP (see above for details). As much as I tried to be calm, I thought I was going to go out of my mind, which my blood pressure revealed to the nurse. Luckily my doctor said she didn't see any obvious areas of abnormal cells and that it looked much better compared to last time. She didn't see any need to take biopsies, so she just did a PAP. I'm waiting for the results now and hoping it comes back normal. Even if it's still LGSIL, my doctor said she'd just recommend waiting another 6 months and getting a repeat PAP. She seemed pretty confident HPV was on its way out though. If that's true, I think I was pretty lucky to get my first colpo when I did, because the biopsies took out all of the CIN II that had developed at the time without a LEEP (/cross fingers). Even more reason to get regular check-ups and follow-ups. This whole thing has been more traumatic for me emotionally than I think it needed to be, but that seems to be the story for many women unfortunately. I'm feeling a lot better now even though I know I'm not completely out of the woods yet.

I always read threads where people are asking what others did to help clear their infections. One of the most frustrating things for me throughout all this was the lack of solid scientific evidence for what to do to help your body out. I'm one of those people who needs to DO something in a situation like this in order to feel like I'm in control of my own body and health. Because of that, my list may seem a bit excessive to some... but here it is, FYI, to whomever may be interested:

Took a multivitamin in the morning (solid ones always make me nauseous, so I took Flintstones with a side of Selenium)
Took a folic acid supplement at dinner (found some research suggesting folic acid levels may be related to virus clearance, but keep in mind not much research related to HPV is wholly conclusive)
Exercise 3-5 times a week
Did yoga when I felt like I was stressing too much
Distracted myself with friends, family, etc to try not to stress about HPV
Got plenty of sleep
Cut out red meat from my diet
Greatly reduced sugar intake (except chocolate...)
Stuck to the '5 a day' recommendation for fruits and veggies, especially broccoli (some studies suggest DIM in broccoli may be helpful)
Used condoms with my partner, even though we're monogamous (again, studies related to viral load)
Used pads instead of tampons (again, studies)
I don't smoke, but I also almost completely eliminated my exposure to secondhand smoke (no smoky bars, clubs, etc)

I have no idea what if any of those things helped. Some people seem to clear no matter what they do, but given my family history I wanted to do everything I could. It helped me feel like I had some control in my outcome, which kept me calmer. I'd be glad to answer any questions about my list, and I hope this is helpful to some. I'm going to keep crossing my fingers for me and everyone else dealing with this to get more good news ASAP.


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 Post subject:
PostPosted: Thu Mar 05, 2009 9:36 am 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Hi bear,

Thanks for the update. It's good to hear from you and I'm glad your exam went well. It seems like your doctor won't be very worried if the Pap shows some cell changes, and that you have a good follow-up plan in place. Good for you!

Please keep in touch and let us know how things are going.

Best always,
Fredo

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 Post subject:
PostPosted: Mon Oct 12, 2009 6:19 pm 

Joined: Tue Jan 20, 2009 5:40 pm
Posts: 17
Hello again. I'm once again following up on my committment to post my progress. I think a lot of people stop posting once they get good news, but so many people who are newly diagnosed seem to read this board and need encouragement. I thought I'd just keep posting in this thread so others can keep track of the timeline.

I just went back for my annual exam and PAP two weeks ago. This visit is almost exactly one year from the one where I received the abnormal PAP (see above for details). I got the PAP results, which were that all findings were normal. I was pretty excited to hear it... the anxiety definitely hit me once I was waiting 2 weeks for those results. This is the second normal follow-up in a row (6 months and now 12 months after the abnormal), so I'm hopeful that this is a good sign. If anyone is interested, I've largely maintained my dietary changes since they're good for my health anyway, but my partner and I went back to condom-free sex after the first normal PAP 6 months ago.

I'm lucky, in my opinion, to have doctors who are interested in keeping a close eye on things, and they want me back in for a PAP-only visit in another 6 months. They acknowledge this is closer following than what's typical, but in this office they just like to follow people for 2 years, if they agree to do so. Since PAPs aren't 100% error free, I'm all for keeping frequent tabs on things, especially since I haven't had kids yet but want to. I'm considering asking for an HPV test next time (even though I'm only 26), since I think that would more conclusively rule out a persistent infection. Not sure if insurance would cover it at my age though...

So there's my update. Glad to see the community is still here and Fredo is still handing out advice and support!


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 Post subject:
PostPosted: Tue Oct 13, 2009 8:35 am 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Hi bear!

Thanks for stopping by and giving us the update. Glad to hear things are going well and that you have such good rapport with your health care providers.

I appreciate this post because, just as you said, it'll be a great source of encouragement for others who come along and are dealing with all this for the first time.

Thanks again and please stop by anytime.

Fredo

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