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...
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.
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.
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.
Stage 1B1 Adenosquamous Carcinoma of the Cervix.
Diagnosed 5.7.09 @ age 20
Radical hysterectomy on 5.15.09
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.
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!
Stage 1B1 Adenosquamous Carcinoma of the Cervix.
Diagnosed 5.7.09 @ age 20
Radical hysterectomy on 5.15.09
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. :?
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.
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...
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.
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!!!!!
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.
Sorry, but that is blatantly wrong. You don't get epithelial transformation to cancerous & precancerous lesions without HPV in the picture. That includes squamous, and adenocarcinoma in the cervix plus the hybrid of the two those are like 99.999% of cervical cancers. The only case HPV is not required for malignant cervical lesions to develop is the other 0.0001% which are not epithelial cell tumors, rather 'small cell neuroendocrine' or Mets to the cervix, which isn't even a cervical cancer at all.
This article clears up much of the misinformation you posted about cervical cancer, http://jms.rsmjournals.com/cgi/reprint/13/4/201, and you can go to http://www.ncbi.nlm.nih.gov and search for "cervical cancer pathogenesis" where you will get tens of thousands of hits from peer reviewed, accurate information including the fact that HPV DNA can be recovered from 100% of cervical SCC's and AISes. Pubmed also has the newest medical research findings about results of clinical trials & chemo drugs,
Those commercials are intended to educate people so that they may make better choices regarding their health and vaccinations. It would be a shame if somebody actually read this and decided not to get Gardasil so it is this message that did a great disservice to women.
Why has it done a great disservice to women, only? For indicating that females are afflicted with an STD? And STD's are something to be ashamed of...right? This isn't something you get because you sleep with everyone, or that is always prevented by protection since its a skin lesion, and only ~15% of sexually active adults never got HPV, most never know its there, unless they get the external warts but thats not what the commercial is about and those cause anal cancers and esophageal cancers. But HPV spreads through our society like the common cold and chickenpox. Girls need to know that so they don't lose out on important vaccines or regular pelvics & paps due to being ashamed or embarrassed.
And if the educational commercials are a disservice to women, then they must really be one to men, who quite clearly are the source of nearly all of these young women's HPV infections. Even worse, men obviously never have pap smears or develop cervical dysplasia. A woman that sees her doctor regularly will eventually find out about the disease because abnormal cell findings are alerted to her and most doctors explain that HPV is/was around to transform those cells. Should she get a LEEP done, clear margins on the cone basically means shes free of the virus now too (its an epithelial virus). Men, on the other hand, have no indication of being infected with a 16 or 18 or 33 mucosal tissue virus type, never know they have it, may harbor it for decades and just continue to go around infecting women. Attempts to educate women about this viscious cycle is far from a disservice.
I am HPV negative and had high level dysplasia cells-precancerous cells. It is possible. My OB/GYN knows of at least one other case in her practice. The LEEP took care of it. Gardisil only protects against 4 strains of HPV and there are over 40 strains. Most people are HPV positive at some point but the immune system kicks in and fights it off and HPV will go negative again.
nms11x is flat out wrong. There have been CLEAR documented cases of cervical cancer in young girls who were virgins and with no HPV. In fact, further tests, including checking for upregulation of classic HPV oncogenes and HPV integration all concluded negative interactions. In fact, here is a pretty easily Googeable case study:
She had an adenocarcinoma of the cervix. Before, the thinking was most SCC and roughly a third of all adenocarcinomas were caused by HPV. The new evidence, though, shows it's an even greater percentage of adenocarcinomas that are caused by HPV. However, here is a clear case of a virgin, no HPV, possibly no HPV ever including vertical transmission, and she has cervical cancer.
So, YES, it CAN happen. We now know that there are many different pathways that CAN lead to the same cancer. We know of three distinct etiologies with known chemo therapies for breast cancer. However, we don't know why there are so many other breast cancers with no known etiology. Cancer can be caused by many mechanisms, and these mechanisms can become faulty by random mutation or faulty genetics. There is NO guaranteed path to cancer.
Hell, even smoking isn't a guarantee to cancer. Most people who regularly smoke will never ever get lung cancer. It's just a risk factor because something like 80% of lung cancer patients HAVE been regular smokers. The other causes can be radon gas, asbestos (more like mesothelioma), or inhaled carcinogens. But, frankly, most oncologists and scientists don't know WHY the other 20% end up with lung cancer. All we know is that women are twice as likely to get non-smoking related lung cancer than men.
Anyways, you in all likelihood did not get cervical cancer from HPV. What they typically do is send in your tumor samples to look for things like p16 integration or HPV integrated genomes. If your docs say it's not HPV related, trust them. It's really not.
I have been seeing the same GYN for 18 years and have never been diagnosed with HPV. Around 5-6 years ago I received an abnormal pap result with no sign of HPV. 3 Weeks ago I had a pap that tested positive for low level lesions. I had a colposcopy that tested negative for HPV but positive for Cancer. I did IVF in the past and had a slew of blood work done and found out that I was a carrier of methylenetetrahydrofolate reductase (MTHFR) which is a genetic mutation causes a deficiency of folic acid and vitamin B9. I'm hearing that this deficiency can cause Cervical dysplasia which can lead to cervical cancer. I'm very confused and wished I had an answer to why. Is MTHFR the cause of my Cervical Cancer. Should I take folic acid and vitamin B9 to stop the progression of my cancer?
Hello. I am sorry that you have a cancer diagnosis. We are not Dr's and can't guess as to what caused it. Your best chance for recovery is to follow your Oncologist's advice. No touted easy miracle cure or vitamin is going to halt progression of a cancer. Good luck and please let us know how you go. Usually early cancer can be fully removed with the removal of the early lesions.
Aussie, age 58
1987 CIN 111. Cervix lasered, no further problems.
Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.
Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
6 chop14 and Neulasta.
Clean PET April/10, 18 rads 36gy mop up. All done May 2010
Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
Discharged Nov 2014.