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National Cervical Cancer Coalition


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PostPosted: Wed Jan 20, 2010 9:19 pm 

Joined: Sat Jan 16, 2010 9:27 am
Posts: 11
Location: Ft. Myers
I am a 46 year old woman who was initially diagnosed with HPV in 1999. After several paps and repaps, I had a colp and biopsy, then finally a LEEP. That was in 2001. Since then, I have had a few normal paps, but several abnormal paps with one more colp and biopsy. I have private health insurance so pay for this out of pocket (and I am a single mother working in the nonprofit world). My last pap, in Dec 2009, was abnormal and my gyn said that in May 2010, I should see oncological gynecologists to better determine what is going on and why it persists. I have seen the words high-risk HPV on my medical records, but she said it is low risk. I am not shy to ask questions, but am exhausted with this almost 10-year ordeal.

I asked my gyn if she would agree to my seeing a holistic D.C. who, I firmly believe, was why I had a few GOOD paps earlier. We agreed that I would do this for the next five months and if it didn't clear up, I would follow her advice and see an oncological gyn (which by the very sound of it is terrifying). I am taking vitamins now (to address my immune system, etc.) and am eating better and drinking less. I have a high degree of stress with my job and as I said being single, I carry the entire weight of raising my son on my own--no father in sight for six years.

Two questions: 1) I read that "doctors can treat all the changes that HPV may cause, but they do not treat HPV". Could someone elaborate on this passage? 2) I also read that there is a vaccine to protect against cervical cancer. I thought the vaccine, Guardasil, was for young women to protect against HPV. Is there something else out there to protect against cervical cancer?

I need more information on prognosis for someone with my stats, too. More information the better. Thanks so much.


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PostPosted: Fri Jan 29, 2010 9:22 am 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
Gardasil isn't effective if you already have hpv. It helps prevent infection with 4 of the most common types of hpv. High risk hpv infections in women can progress to cervical cancer , especially if left untreated. make sense?

My 2 cents is - follow up on this with the oncologist/gyn regardless . At this point you should be considering all your options since this is persisting. They can work together with your holistic practitioner to give you a treatment plan that you feel most comfortable with.

we don't really have treatments for hpv. we treat the symptoms of it. This means removing all the infected cells we safely can from the cervix with the LEEP procedures and other treatments for the most part. Think of it as when you get a cold, we don't have cures for the common cold but lots of options for symptom control so that you can get through your day better.

best of luck at finally getting rid of this!

betsy

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PostPosted: Fri Jan 29, 2010 6:16 pm 

Joined: Sat Jan 16, 2010 9:27 am
Posts: 11
Location: Ft. Myers
Hi Betsy: Are there any stats available to you that discuss women my age who have persistent HPV diagnoses? I know many women who have had it, but they get rid of it! What could I be doing to my body that allows it to emerge repeatedly? Any ideas are helpful. Thanks again.


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PostPosted: Sat Jan 30, 2010 3:50 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
I don't know of any offhand - perhaps Fred has some to quote? I think he'll check the boards on monday.

betsy

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PostPosted: Sun Jan 31, 2010 12:53 am 

Joined: Sat Aug 16, 2008 2:50 am
Posts: 109
Hi Infosearch...I'm close to your age...I'm 42 and only found out that I was HPV+ January 2009. I went in and had a colposcopy in April....but I've continued to have HPV. I honestly don't know what factors cause some HPV to be more persistant in some women then others. I know my doctor is being more cautious due to my age....but she doesn't seem at all worried. I have another PAP spear appt on Monday.


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PostPosted: Sun Jan 31, 2010 8:19 am 

Joined: Sat Jan 16, 2010 9:27 am
Posts: 11
Location: Ft. Myers
Thanks for your note. I think that if I had a chance to read stats about recurring HPV I would feel better. I've had normal paps over the last several years, on and off, but I guess I am hopeful that more stats PLUS the holistic community would comment about stress, immune system care, vitamins, etc. so that I can feel I am doing something for myself other than undergoing yet another colp or LEEP.

I wait patiently for Fredo to offer some advice. One final question: A friend of mine asked about the possibility of a hysterectomy...does that have any relevance here?

Always searching for more information. Thanks to all.


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PostPosted: Tue Feb 02, 2010 8:31 am 
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Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Quote:
I have seen the words high-risk HPV on my medical records, but she said it is low risk. I am not shy to ask questions, but am exhausted with this almost 10-year ordeal.


Sometimes this is really confusing. I've chatted with women over the years who, of course, do simply have "low risk" HPV detected. Other times the diagnosis does involve a "high risk" type of HPV but the woman may be viewed as being at a low risk of developing cancer from it! Ask your doctor to clarify if you're not sure about this.

It isn't really clear why HPV infections persist in some women. Some HPV types are more prone to sticking around than others; sometimes lifestyle issues like smoking might play a role. There's even thought that stress, fatigue, even diet might contribute in some cases. The risks of cervical cancer (especially of an invasive, dangerous nature) can still be managed effectively in almost all cases, but that's why it's important to keep up with your Pap tests and other follow-up exams, as it sounds like you've been doing. The oncologist may be someone who's just very experienced and specialized in managing and, when needed, treating the cervical cell changes.

Please keep posting and let us know how you're doing and what you find out.

Best,
Fredo

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PostPosted: Tue Feb 02, 2010 9:36 am 

Joined: Sat Jan 16, 2010 9:27 am
Posts: 11
Location: Ft. Myers
Thanks, Fredo. Your comment that the "risks of cervical cancer can still be managed" is what I was looking for. I do, indeed, need to get together with my gyn and talk more about this to learn specifically how I've been diagnosed. I used to keep records from every Pap result and need to review the last two years once again. (For the record I do not smoke.)

Today, I have an appt with a holistic D.C. and after I speak with my gyn, I will be in touch with you again. Thanks so much for your guidance and comfort.


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PostPosted: Thu Feb 11, 2010 3:08 pm 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
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Location: North Carolina
Sure thing, and please keep in touch!

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PostPosted: Sat Mar 06, 2010 10:29 am 

Joined: Sat Jan 16, 2010 9:27 am
Posts: 11
Location: Ft. Myers
Hi Fredo,

As I said I would, I spent last weekend assembling ALL records and can report the following (taken from med records): Since 1999,

--5 colps
--1 LEEP
--diagnoses: LGSIL (year, 1999) to ASCUS to Intermediate/High-Risk HPV with Benign Endocervical Glandular Epithelial Cells to Negative for Intraepthethial Lesion or Malignancy to (year, 2009) HPV High-Risk Positive (I have many details but this is a far more condensed version.)
--My gyn has left her practice and NO ONE claims to know where she went.
--So, AGAIN, I will need to start with another gyn.

Any thoughts on the diagnoses? For what it's worth, since I last posted, I have stopped completely alcoholic intake (finished a major stress-inducing project that was two years in the making), and am taking vitamins/mineral supplements, plus a daily vag suppository as recommended by a holistic DC. I FEEL that I am doing the right thing, and if my gyn was still around, the plan was to go back to her end of May for a re-pap.

What are your thoughts at this point? Thanks, Fredo.


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PostPosted: Mon Mar 08, 2010 9:52 am 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
I'd pick the oncologist gyn at this point to follow up with. This has persisted for awhile and has progressed over the years so it's well worth switching to someone who does this sort of patient full time instead of a regular gyn.

have you checked out the clinical trials to see if any are near you and recruiting?

betsy

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PostPosted: Tue Mar 09, 2010 6:02 am 

Joined: Sat Jan 16, 2010 9:27 am
Posts: 11
Location: Ft. Myers
One of my previous gyns asked that I consider taking "Aldara", which is a topical but she wanted me to put it on a diaphram once a week or so. Clearly not sanctioned by the FDA or whoever approves use as such, but she did not call it a clinical trial. When I asked for alternatives, she said she she may not continue to work with me. I choose to find another doc at that time.

I will follow-up as you suggest, but my dilemma now is that I have NO gyn (she left where she was with NO forwarding address...strange). So, now I am planning to call a new doc today to see about appts and my assumption is that I will go through a regular Pap with her and then go from there.

I am cautiously optimistic that my personal behavior (foods, supplements, etc.) will have a positive effect on my next Pap. If my old doc was around, I would have had my next Pap end of May.

Thanks for your comments and if something else inspiring comes up, do let me know.


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PostPosted: Thu Mar 11, 2010 1:45 am 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
If you've had persistant hpv for 10 years, it's not likely to clear on its own unfortunately.

betsy

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PostPosted: Thu Mar 11, 2010 6:24 am 

Joined: Sat Jan 16, 2010 9:27 am
Posts: 11
Location: Ft. Myers
I hear you. I feel my one morsel of hope is to continue what I am doing for another 5 weeks and then see what happens. If there is anything abnormal, I will definitely head to an oncologist/gyn. If it happens to turn out 'normal', I may still go to learn more.

By the way, I didn't list all of the diagnoses/results in my previous message. I did have some paps that were "normal" in between the others that showed the results I shared with you. So, my last few questions for now are, When a pap says "normal", (and I realize HPV is a virus and thus never leaves the body), but when it says normal, doesn't that suggest that my body is in a good space? A few "normal" paps could mean that I am taking better care of myself, yes?

Any final comments are welcome. I will be in touch again end of May when I have results. Thanks so much.


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PostPosted: Thu Mar 11, 2010 1:50 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
Honestly it's way more than just taking better care of yourself though the classic mom line of eat your veggies is some of the healthiest advice ever for everything. Hard to tell if it's all been the same hpv infection or you had one, cleared it and then another caused issues or not at this point. we didn't have the hpv detection then that we have now.

keep us posted and I hope you are able to find better providers this time :)

betsy

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