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ErinB248
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Hey guys! So I have decided to take the bull by the horns! There is a HUGE problem out there with getting people adequate screening and dealing with the emotional effects of an HPV/dysplasia/cervical cancer diagnosis. I am a 2nd year medical student that was diagnosed last week with carcinoma in situ and planning on becoming an OB/gyn. I am in the OB/gyn club and have decided that I am going to speak to the members of my club about my situation (from a patient's perspective). No sense in keeping this a secret, because the more people that know and can put a face with this disease, the more people that I feel we can help.

So here is my request... if you can reply with 3-5 sentences about the thoughts that went through your head when you were diagnosed (be sure to include what you were diagnosed with) and if you had something that really stood out that your provider did or didn't do, I would really appreciate it. I want to type these up and hand them out at the meeting (no identifying information will be included on them, such as your screen name) so people can actually SEE how this is affecting women.

You guys are amazing and so inspirational!

Explore topics in this discussion:

Cancer Surgery Hysterectomy Cervical cancer Pneumonia Syphilis Oral cancer Pain HPV Carcinoma in situ Infertility

18 replies

corellin

ErinB248 -- Thank you for doing this!

Back in my early 30's, I was diagnosed with an abnormal pap smear. I didn't think anything of it, because I was called for a repeat and the repeat was normal.

A few years later, I had another abnormal (and so did a friend who I worked with). This GYN told me about the connection between HPV and cervical cancer. My reaction (and that of my friend) was extreme fear and "WTF! There's a sexually transmitted virus out there that we'd never heard of that could potentially cause cancer?" I thought to myself that I'd always had a feeling I'd die of cancer, and now I knew which kind I'd die of.

A repeat pap (for both my friend and myself), showed that everything had cleared. I asked my doctor whether this was something I needed to tell a future partner. She said, "No, 99% of all sexually active people have HPV." I asked whether condoms could prevent the spread. She said, "No, HPV is passed groin to groin." She told me I just needed to have pap smears every 6 months for the rest of my life.

At this point, I didn't know what to think. My cervix was normal, I didn't need to have a procedure and I had newly discovered a sexually transmitted disease that apparently everyone in the world who every had sex has. And I just needed to monitor myself to make sure the HPV didn't turn into abnormal cells.

So I had paps every six months for a while, then less frequently and at the back of my mind I worried about cervical cancer -- especially since some people I worked with knew a man who had two wives who both died of cervical cancer. But i didn't worry too much, because it seemed I had "dodged the bullet."

So in my early 40's when I was diagnosed with LSIL, I thought -- no worries, this will clear just like all the other abnormal pap smears did. But when my test came back "high risk" HPV, I started to worrry. Before, I never really knew for sure that I had HPV, because I hadn't received a specific diagnosis -- only an abnormal pap that might have been caused by HPV, but could always (at the back of my mind) have been caused by something else -- or have just been a diagnostic mistake. But now I knew for certain I had "high risk" HPV. I asked my GYN if I would die. She laughed and said no, that she would take care of me. The colposcopy came back "inflammation" and she said everything looked much better.

Unfortunately, this infection escalated to LSIL-H, then LSIL-H, then HSIL. By the time I had a repeat colposcopy, a year later, HPV was spread to four quadrants. I was terrified. Since HPV had progressed that quickly, I thought the next step was cancer. I remember having waves of terror. I lost about 10 pounds. I didn't want the LEEP or anything done to my cervix, but I felt I had no choice, so I finally had the procedure.

The procedure has had a lot of side effects that I didnt expect, so, even though I would probably have made the same decision, I still feel I didnt truly have "informed consent." I still feel traumatized by my experience, even two years later, because the entire experience seemed to be characterized by either lack of information or blatently bad information from my doctors. At all times I felt "out of control" -- that something was being done to me and I wasn't really a participant in my decision making.

Since then I've educated myself about HPV, but it was always too late to do me any good. I understand how HPV is transmitted and how I could have protected myself. I understand about the different HPV types and their varying risk for progression. I understand about things a woman can do to give her body a better chance of clearing the virus without a procedure. But all this came too late to help me.

After all that trauma and research, I desperately wanted to prevent infection with another type of HPV. But I encountered nothing but resistence in my efforts. So I want to share with you some of the messages I've received from clinicians and researchers. These messages haunt me and keep me up at night.

1. You have to live your life. Don't worry about getting infected with HPV again. If the dysplasia comes back, we can just give you a hysterectomy. -- GYN

2. I would rather get HPV than the flu, because the flu might put me in the hospital with pneumonia, but HPV is almost always harmless. -- Lead HPV researcher

3. There's no point to testing men. What would I do if I found out my male patient had HPV, tell him not to have sex? - Clinician at the 2008 NCCC conference

4. HPV is different from says, herpes. With herpes, a partner has the right to know... but not so with HPV, because HPV is, I mean, it's just HPV. - Presenter at the 2008 NCCC conference

5. Don't worry about future infection with HPV. You have to live your life. And what are the odds? - Head of infection control at major Seattle hospital

6. A LEEP is not a big deal for a woman's body, because the cervix easily repairs itself. - Noted HPV researcher

7. HPV is not as serious as some STD's, because, after a LEEP, a woman never has to worry again. But chlamydia can cause infertility. - Presenter at the 2008 NCCC conference.

8. I understand you've been traumatized by your LEEP experience and would like your next partner to be tested for HPV prior to having sex sith him. There's not enough evidence to support HPV testing for men, but it sounds like women need more emotional support and therapy to help them deal with their experience. -- Urologist

Thank you for increasing awareness in the GYN community, and I'd be glad to share other thoughts I have about my personal experience if you'd like to discuss privately. I would love to see more of a focus on primary prevention of HPV rather than the current focus on cancer screening. I also believe women should know about HPV BEFORE they get it so that they understand how to reduce their risk. And I think if we made HPV testing more available (type-specific, so people could better assess risk), that we might have a better shot at reducing the rates of HPV in the population and also giving women a "heads up" so they can take action (especially trying to clear the infection naturally, without a procedure) before an infection progresses to something really bad.

phoenix73

Great idea..When I found out (three weeks ago) that I tested Positive for high risk HPv w/ a normal Pap ..I WAS HORRIFIED, SCARED, and ASHAMED! I felt like I was just told that I was going to die. My office told me the news over the phone ( which ideally wasn't the way anyone wants to find out the have a life long std). The nuse @ my office told me NOT to freak out, the majority of pple have it, relax,take multi w/ folic and take l-lysine. In the next week.. I called the office back probably ten times to speak to this nurse about everything from dealing w/ my fears (about getting oral/anal cancers or my hubby getting them), to telling my hubby. She was supportive..told me to get some info but did advise that I stay off the computer for awhile because even though the info was accurate..it was rare and scaring the hell out of me..which wasn't what my body needed right now.

I definitely think that telling a woman that she's HPV positive should be done in person and the emotional/mental stress/anxiety/fear that it causes DEFINITELY needs to be addressed also..not just the physical part (no stress,diet,etc)..I've spent many a night trying to stop my mind from creating scenarios that hopefully/probably will never happen. my identity has been chattered (hopefully only temporarily)..I have lost my sexuality,confidence...feel like everyone who sees me sees the virus..

ErinB248

Thank you Corellin and Phoenix! The stories I keep hearing and reading just sound horrifying. My first doctor was awful, and my new doctor is amazing. I completely understand how a doctor's input can influence a patient's understanding and emotional state. I can't wait to makewe a difference in the ob/gyn community!

kelbel09

When I grew up there were your normal STD's Gonorrheal, Clap, Warts, Syphilis I didnt even know HPV existed until I saw a Gardisil commercial a couple of years ago. Then when I got a bad pap in 07 ( I was 32 yrs old) I was told I was HPV positive and that I had tested for the strains that cause cancer. I was SHOCKED and STUNNED and dont remember what the DR told me after that I still dont. I blamed my husband since I have been with him 10 yrs of my life but now know that wasn't good I could have gotten it at anytime in my life. A STD that could kill me --WOW thats news u dont swallow lightly what frustrates me more is how my OB/GYN tells me its not big deal it will go away on its own ok well let see i had a Colpo in 07 got another bad pap in 08 had another colpo then repeat pap was ok but the yrly pap in 09 BAD AGAIN im preggo so when the baby comes I have to have another colpo but remember its not a big deal it will go away on its own.....

ErinB248

Thanks kelbel! I undertstand the frustration that so many people are feeling when their doctors minimize this diagnosis. It is disheartening to hear how many physicians are telling their patients "it's no big deal."

marsha123

I had an abnormal Pap in '08, which resulted in a colposcopy, a Leep, and six months later, a second Leep since my Cin1 had mystifyingly progressed to Cin3 in six months time.

This whole process is terrifying, and emotionally devastating. So many of us women were in mongamous relationships when this happened and were left feeling confused, betrayed, and yes, angry that the man was spared all the turmoil that we were experiencing. Now we were being faced with the possibility of cancer...the dreaded "C" word that involves the threat of chemo, radiation, and death (and sometimes are first two are as frightening as death since they all involve the unknown.)

Nothing they could do seemed to slow down my virus, and I eventually had a hysterectomy in 7-09. I still live in fear that there are more nasty procedures which involve awful side-effects ( like heavy bleeding, foul-smelling, ash-colored discharge, and of course, PAIN) in my future. These symptoms change our relationships too, and seldom for the better.

Please, please take this illness seriously! It impacts one, not only physically, but mentally and emotionally, and affects quality of life in a huge way as you can see from reading many of the posts on any HPV support site. I can attest to the fact that my life is very altered, in a good way since I'll be more careful, but also in a negative way since I've lost trust, and a certain innocence about relationships and the beauty and sanctity of love. Thank you so much for sharing this information, and (hopefully) recognizing the extent and gravity of the problem.

islandgirl

My first thoughts when I heard the news, all alone I might add, that I had cervical cancer and the tumor was likely too big for surgery so I'd need chemo and radiation....was of my daughter who was then 15. My divorce from a 18 yr marriage was final the month before my diagnosis and I was scared of dying and not being around to see my daughter grow up, graduate, get married, etc. I remember my gyne oncologist saying I wouldn't lose my hair and I thought to myself that was the least of my worries. I remember wanting my mother, who happened to be at another hospital with my dad who was having a kidney stone attack, which was why I was alone. I remember also thinking I would end up alone, but the man I was dating became my rock and is now my fiance. Tumor on first exam was thought to be between 3-4 cm, then after an exam under anesthesia it was deemed to be more like 5-6 cm and the MRI revealed it was 7cm and when I got that news on the phone from my gyne concologist she also told me I had lymph node involvement. So, after coming to terms with the cancer and feeling like I'd get through treatments and beat it, I felt like I was stabbed in the gut. All I could think was this can't be good and my MRI, was rushed....got it in a week, which is unusual for Canada and also scheduled to start treatments asap so I knew I was a serious case based on the rush my case seemed to be taking.
Good luck with your own cancer and I think you are going to make one fabulous OB/GYN!

sapphkat

Great idea. I hope you have some success getting the word out there.

I was actually first told I had CANCER.. and I started freaking out. I actually do not remember my exact reaction but I was angry and stunned. I don't think I found out that my AIS (precancer or stage 0, so really they should not have told me cancer) was caused by HPV until 6 months in. When I asked for an HPV test they told me there was NO POINT!! They would just ASSUME I had it!! When I was told I had HPV, I started avoiding all relationships and intimate contact because I didn't want to explain this to someone else. I feel like I am being punished for something and I feel like it is not fair that this is my life now.

When I was told after 2 years of treatments and 4 surgeries (3 LEEPs and a cone) that I would have to have a hysterectomy as I did not have enough cervix left, I thought there must be some mistake. I left in a daze and proceeded to scream cry in my car. I think I scared people! I will never get to know what it is like to be pregnant or feel a child growing inside me. I feel damaged and wonder who will want me some days.

Kat

rkh

I was diagnoised in March 2009 with stage 1b1 cc(squasmous cell). The tumor encompassed the 11 o'clock through the 7 o'clock region on the face of my cervix, it was 4cm deep. The tumor was 1cm from my vaginal cuff. I had a radical abdominal hysterectomy in May 2009. The pathology report showed all surgical margins were clear, no lymph node involvement and my LVSI was negative. To date, my gyno/onco said he doesn't reccommend any further treatment. Of course, "just in case", I need to have a chest x-ray every three months and a CT scan every six months per my gyno/onco reccommendations. As my other cc sister's know, these "just in case" monitoring's will decline in need after the first two years, and there after five years.

Eventhough my gyno/onco explained to me, I still don't understand why I was never, ever, tested for hpv? I was just told I had a high risk type and it wasn't neccessary to dna test my hpv infection. My gyno/onco said, all high risk strains are treated the same. He went on to say, even if I had a current hpv infection and or dysplasia of the vulva/vagina, he would not treat it because it poses more danger to me to do so. Basically, he would wait for it to turn pre-cancerous. Then he would do radiation treatments and or chemo depending on what was involved? I quote him verbatim on this.

Another question I have is, why do gyno/onco's treat high risk hpv/dysplasia of the cervix before it turns to cancer but not other areas of the vagina/vulva... because it poses a danger???? I don't understand this at all???

I am glad you are taking these concerns to a place where possibly women can expect in the near future a COMPLETE UNDERSTANDING OF THIS ENTIRE PROCESS and not have to fight for it!!!!
Thank you

aileen

You are all amazing NCCC members!!!!!!!!!!!

corellin

hi rkh -- precancerous lesions of the vagina and vulva are treated, just as the ones of the cervix are treated. A doctor wouldn't just treat HPV, though, but would wait for lesions to develop and then treat those. It sounds like your doctor might be making a distinction between "dysplasia" and "pre-cancer"? But I've heard them used interchangably, so from what I've heard dysplasia/pre-cancer would be treated (depending on the grade - with lower levels left alone, since they more often than not regress by themselves).

zztop

It's hard to put in 3-5 sentences. I'll try. Diagnosed with stage 3B March 2007. Shock, as the PAP smear that month came back "normal" (same with ultrasound and ct scan) GYN said I just needed a "D/C". They found cancer then. Had radiation,chemo.& Brachy next 9 wks. Last PET was ok. But don't trust PAP tests. So I have 2 different Dr.'s in 2 different cities do it. I don't have sex at all and don't miss it. My husband is glad just to have me alive. Why all the sudden is the male sperm a deadly thing?? Even comdoms don't help. Sorry, could not put all in 3-5 sentences. Hope you can make a difference for us.

zztop

It's hard to put in 3-5 sentences. I'll try. Diagnosed with stage 3B March 2007. Shock, as the PAP smear that month came back "normal" (same with ultrasound and ct scan) GYN said I just needed a "D/C". They found cancer then. Had radiation,chemo.& Brachy next 9 wks. Last PET was ok. But don't trust PAP tests. So I have 2 different Dr.'s in 2 different cities do it. I don't have sex at all and don't miss it. My husband is glad just to have me alive. Why all the sudden is the male sperm a deadly thing?? Even comdoms don't help. Sorry, could not put all in 3-5 sentences. Hope you can make a difference for us.

ErinB248

Thanks to everyone for your input! I really appreciate it. Zztop, I also don't trust pap smears since I have never had an abnormal pap but was diagnosed with carcinoma in situ. I have requested colposcopy's at every visit from now on, and luckily, my doctor is willing to go along with my request!

singingmommy01

I am a young mother of a beautiful four year old who requires my undivided attention, but over the course fo the past year she's kind of been short changed due to my High Grade Dysplasia, which scares the living daylights out of me. My grandmother died from cervical cancer before they knew what caused it or how to treat it. Because of this my father is also frightened for me (it was his mother). My doctor told me that I am not allowed to make medical decisions for myself (because I wanted to stop taking the b.c. pill, and expressed to him that I would prefer it if I could just have a hystorectomy) and that I should seek counciling because I cried in his office. I am currently looking for a new doctor. I hope that there aren't other people expiriencing this, but I know that there are and that makes me very sad.

JBO713

Through all the paps, colposcopies and a Leep I was diagnosed with CIN III/CIS/AGCUS. I don’t think I have ever been so scared than I have these past few months. And you can do your best to try and explain it to your friends/family or significant other but the truth is nobody understands what you are going through unless they have been there themselves. The feeling that I might have cancer and that I probably got it from having sex with my boyfriend which is something almost everyone does, this was all just so unbelievable to me. And throw in the possibility of having anal or oral cancer, every little itch or bump anywhere now makes me extremely nervous.

As for my doctor, in the beginning he was a bit insensitive basically saying its not a big deal and its very common. But after he saw what this was doing to me mentally and after he saw me cry a few times, he tried everything in his power to make me comfortable and knowledgeable about the situation and I think he gets it now and I wouldn’t go to anyone else. I went for my 3 month pap last week and he ended up doing a colposcopy, another biopsy of a spot he wasn’t sure of and another ECC (which all came back negative which I’m so excited about!) just because he knew it would make me feel better. The one thing I have to keep asking him is to do an HPV test. He just assumes I have it. He doesn’t understand what an hpv test with a negative result would mean to me.

mickietucs

I was recently found out I have high-risk HPV and CIN 1. At 60 and NOT in a relationship, I must say I was shocked (didn't know much about HPV and that it could be dormant for many years!). The biggest thing that stood out about my provider - they didn't tell me OR ask me ANYTHING. I literally got "you have xxxx and need to go for a colposcopy." That was ALL. My suggestion to all in the OB/GYN field --- at the very least find out if the patient has any questions! Thanks -

KC1981

ErinB, thanks for your bravery and speaking out for us!

Just to share my own experience, I was diagnosed with high risk HPV earlier this year, CIN I & II, and just underwent a LEEP a few weeks back (finally seeing my doc to get the results tomorrow!)

I think the number one thought I had after being told I had HPV was: "What the hell is HPV?" I'd never heard of it before, never learned about it in sex ed class.

Actually, I shouldn't say I was "told" I had HPV, I was informed by a letter I received in the mail (though all subsequent results so far have been given to me in person) so it wasn't really like I had anyone to ask questions to.

Even now I feel a little lost in the fog of HPV information. So much conflicting information out there...

I think there needs to be better public awareness of HPV, and better information available so that we can make informed decisions for ourselves.

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