Non-HPV Cervical Cancer

[misstherendy]

Hi everyone on here. I have been slowly trying to read through this forum and am amazed with the support on here. I really think it is wonderful when people can support each other without having any kind of reservation or even doubt. I am running into this problem with my friends and I would like to share a little about why a.k.a. a small part of my story.

I am turning 29 in June and recently was informed that my Cervical Cancer had returned for a 2nd time.

I was 19 when I was first told I had abnormal cells in my results. I had already had a child at this point and was told it was normal for this to occur. The doctor told me they were "pre-cancerous" and that all my other results (STD's mainly) came back negative. This included being tested for HPV and HIV, the first I had never heard of at that time and assumed it was similar to HIV. So they performed biopsies, and later surgically removed the cells.

When I was about 23, and it had been 2 years since my last exam, they said again that they found abnormal cells. After a colposcopy and multiple biopsies, the doctor sat my mother and I down (she was my rock) and told me that I had Stage 1 Cervical Cancer. Again, all my other results were negative. The decision was made to attempt to perform a cryo and remove a large part of my cervix and just monitor the regrowth of my cervical cells over the years to come with more colposcopies, etc. but things happened, and I lost my insurance by the age of 24.

Now, to my current situation, I finally have insurance again but I have not had a proper exam and biopsies in round about 5 years. So I went in to my old GYN. And I *still* test negative for all STDs including HPV. But they called 2 weeks after and over the phone informed me that I do have Cervical Cancer and they set up multiple appointments to determine the stage and location. They have mentioned a hysterectomy and chemoradiation treatment as being a possible option if it is more advanced than before.

So I am scared. As you probably all know how this feels. The not knowing. The wait-n-seeing. The possibility of everything changing. Feeling helpless. Scared. Alone.

I turned to my friends for support and they all but called me a liar about not having HPV. But the doctors have tested for it. It isn't there. They tell me it "isn't possible" but my doctor told me she has had at least one other case like mine (she actually stated, "...you aren't the only one that has been here with Cervical Cancer and not HPV...") and yet my "friends" do not support me at all. *sigh*

In one month, my doctors diagnosed me with moderate asthma, hypothyroidism, and Cervical Cancer. In a week I should know what stage the cancer is at and what my options, if any, are.

Basically, I just want to share. I hope to be able to support others out there... maybe together we can get through all of this...

Thanks for your time and sorry if I rambled...

Therendy
(in Florida)

[brainman]

Therendy, I am very sorry about your Cervical Cancer. I do not have any personal experience with Cervical Cancer and little knowledge about it. What I do know is that HPV is NOT the only cause of Cervical Cancer. I think that the HPV commercials and education have done a disservice to women by making a large segment of our population focus almost entirely on HPV as the cause when really it is just one of the possible causes.

You are in my thoughts and prayers as you journey down this terrible road.

[In]

misstherendy,

Hi, Like Jim has said. It is not the only cause of cervical Cancer. It IS the most common. It is very, very rare it is due to another reason.

When I went through all of my history, test etc. They said that it may have been due to an infection or STD. The rarity that it was an infection is like one in a million people. They also say they still put all cervical down as STD caused, even if they have not found it on a test. Beacuse HPV especially, Is in everyones body. The strain is there, but depends if it is "awakened" to cause problems.


Men will have it and very luckly their body will fight it off. So even if they have had it, the test may come back negative. With us women. It is again very rare for our body to recover. We are most likely to have problems and abnormal cells to prove it. So even we can come back negative for the strain. If we have had been into contact a long time ago. But they will still concure that it was from a strain of HPV etc, that has caused this....

When your friends don't support you, then they are not your friends at all! This is why Cervical Cancer is such a taboo subject, people are ignorant and haven't got the information to begin to understand what we go through.

How are things now?

[rockstar]

I know it doesn't make sense with all the commercials we see for Gardisil. But I actually have HPV (and have the vaccine) but fall into the small percentage of cervical cancer not caused by HPV. So yes, it is very possible to not have HPV and still develop cervical cancer. My gyno had told me that it was just genetics and the environment that led to my "lucky" odds. But she did say that if it was not for my HPV leading me to be so regular in my check ups, they would not have caught my cancer in time.

[In]

here here rockstar- so true.

[JamieLilley]

I also have cervical cancer, and have been tested for HPV by several doctors, and found negative everytime, so it is definitely possible.

[In]

Hi JamieLilley,

Feel free to make a thread of your own, to tell your story, if you wish. This may help some others who don't understand the difference from HPV causeed cancer and others.

Thank you for your posts, everyone is great as it supports others here, and millions that don't post. Thank you.

[babygrl]

I have had several issues in the last week with doctors and the assumption that I have HPV...

After several years of abnormal paps I had a biopsy that found chronic and acute cervicitis with no dysplasia. All along I have tested negative for both low and high risk HPV. I have had four such tests... again all negative.

This week I find out that I have mild dysplasia. My doctor tells me that there is no reason to test me for HPV because it is impossible for me to have dysplasia without HPV!

A second doctor tells me that they are separate conditions, that have no bearing on each other even though they are in the same location. When I questioned him he went from telling me that there is no other cause to telling me that it is rare to have the condition without it at 28... He actually called testing someone with even mild dysplasia for HPV a "waste of money"

Anyone who may be following this thread and has any information please let me know. I have another appointment to have yet another HPV test.

Thanks

[rockstar]

I know it must seem very confusing with two doctors telling you conflicting information. But you can think of a couple things at this point. 1) regardless if you have HPV or not, you need to make sure that you keep up on your doctor appoints to make sure the dysplasia doesn't progress into something worse. 2) It is possible to have dysplasia without HPV but it is far rarer. Doctors don't like to think in the realm of Rare. 3) You will have the support of everyone in this forum through this though time!

[ecupir8fan]

I was dx with Cevical Cancer in May '09 and was told it was not from HPV. I had a tumor the size of a grape on my cervix and recently had a hysterectomy. My doctor, who by the way is amazing, said it was plain bad luck. You are correct about what others think of you when they hear the type of cancer you have and what it typically originates from. :?

[farrahscreations]

You know I'm 4 weeks post-op a Cold Knife Cone and I have no idea if I have HVP? I've read all of my medical reports and there's nothing mentioned on any of them about it. I go Thursday to get my results from the cone so maybe they will know something then.

[Sharon727]

I had cervical cancer and was also HPV negative. The doctor explained to me that although I am negative now, that does not mean that I wasn't positive at some point in my life and that my previous exposure COULD have been the cause of my cancer, but there was no way to truly know. Does it really matter?? 90% of the sexually active population wil contract one form of HPV or another...there are like 96 strains from what I understand...and it is spread by skin on skin contact. The types that cause genital warts are not the types that cause cancer, so most people never even know they have it! For men, there is no consequence..they have it, never know it, and therefore spread it..nothing to be ashamed of..and certainly nothing for your "friends" to be commenting on...

[Shuvee]

When I was 19 I had a tumor the size of a lemon removed from my right breast. I was told I had a better chance of winning the lottery then having a tumor in my breast at 19 years old.

Fast forward 20 years and now I have cervical cancer and have been testing negative for HPV. My doc says the chances are extremely rare to have cervical cancer with a negative HPV. If he told me I had a better chance of winning the lottery I would have slapped him. (kidding...but trust me, I would much rather win the lottery

So it is possible although very rare.

If your friends are not supportive, drop your friends! With friends like that, who needs enemies!?! Regardless of whether you have HPV or not it should not be a factor in friendship, it's not like you are a serial killer or child abuser.

Good luck!

[brencot74]

In 2002 I had my first non HPV carcinoma in situ removal with cone, and 1 year of clean follow ups... In 2004 I had an abnormal non HPV result and my gyno sent me to an oncologist gyno, who told me "No HPV, no need for another colpo".. my regular gyno suggested a colpo, I also have cystic fibrosis and had a rough 5 years dealing with that and I neglected any further testing or treatment and moved to another state.. 3 weeks ago I took my last test (with colpo reccomendation) to a new gyno in MI, and he repeated the pap, and said, no HPV, no colpo.. I still dont have the results of this pap, but I am sooooo worried, if I had cancer without HPV before, why why why are they not doing a biopsy now??? I have other health problems that make me vulnerable to other types of cancer and I am showing warning signs for Lymphoma as well. they are watching that too. Grrr. What is the harm of a biopsy when there is documented history of previous cancer? The kicker? Ive been in health care for over 13 years and have always advocated for my patients!!!!!

[rockstar]

Hi brencot,

Sounds like its been a nightmare between the doctors and the move. If you specifically request to have a colp, they should follow through with that request especially if the pap returns abnormal.

I think it might be a while for people outside of this "cancer community" to realize that cervical cancer can be caused by other things other than HPV.

I think it's great you are staying on top of this an not ignoring it. You probably know better than anyone to not ignore the patient.

I suggest you start a thread of your own to post your story so more members of the forum can see it an respond! We all would love to hear it.