HPV is NOT just about cervical cancer (so now I'm not a survivor?)
My heart goes out to anyone with cancer. I've been there. I'm there again now. However, when it comes to HPV frankly I'm tired of hearing about HPV and cervical cancer when HPV has been shown to cause so many other cancers as well and these seem to be overlooked in many instances.
I was recently told that my "survivor" story really would not be applicable for inclusion on a particular site because my survival dealt more with HPV induced anal caner (although i have had carcinoma in situ involving the cervix, vagina and vulva as well). I find this appauling. We should all be in the same boat, moving in the same direction, one of awareness and not just that HPV can cause cervical cancer but all the other cancers as well!
So I'm a survivor, I'm just not a survivor of cervical cancer! What is wrong with these people? What is wrong with the FDA limiting the use of the HPV test to only cervical specimens? Aren't they testing for the virus? So if that virus also causes these other cancers, shouldn't they be allowed to use the test for screening of those cancers as well? Why, when the FDA updated the Gardasil literature last year to include vaginal and vulvar carcinoma in terms of prevention with the vaccine didn't they include anal cancer? It's the virus that can cause the potential cancer isn't it? Yes! So why limit it's use to only the detection of cervical cancer?
I applaude those with the courage and fortitude to endure the tortuous treatments involved with having cancer regardless of which type of cancer you have. I just don't like being treated like a "second class citizen" because I have a cancer (while still caused by HPV) that isn't being recognized.
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Bonnie,
Count me in on your side, and astonished. Cancer is cancer. That doesn't seem like rocket science. I'm sorry you've recently been through this. Believe me, on EmpowHer you're a survivor x 4!
Anal cancer has been in the news lately through Farrah Fawcett's story, and it's clear that it doesn't get the attention (and research and funding) that some other cancers get, partly because some see it as preventable and also because it's difficult to talk about for many. It's clear, when we see someone with the means of Ms. Fawcett needing to travel to Germany for treatment, that we are not where we should be regarding this kind of cancer.
(And on the preventable part, we could all throw in the fact that one of the most prevalent cancers, lung cancer, is largely preventable if people would not smoke. Yet we don't dismiss it in the same way that we dismiss anal cancer.)
I urge you to keep writing about your story. I would love to hear more about your journey, and I know that if you wrote more about it -- how you discovered it, what your treatments have been, and the recurrence you're dealing with now -- it will only help awareness, and you will give other women important information about their own health and well-being.
What are you dealing with now?
Diane, After having 3 surgeons tell me the area of my conern looked "perfectly normal" to them and only getting the biopsies done after insisting and having to go through a second unnecessary surgery because the surgeon felt "stupid" biopsying what appeared normal during the first surgery I finally went to Duke Cancer Ctr in NC. This surgeon immediately zeroed in on the exact area I've complained about for almost a year. Unfortunatley I believe as a result of all this delay, the in situ lesion diagnosed then is now invasive squamous cell anal carcinoma with the margins all being positive. Not good! If you check out my profile you will find my website and you can read about my book and obtain other helpful info on all HPV related cancers either through individual pages or news and update articles.
Thank you for your concern and your interest.
Bonnie
Oh, Bonnie, that's heartbreaking! Grrrrrr. Whenever someone has to fight to be heard, fight to be tested, and fight to be diagnosed correctly, it's just plain wrong. Especially in this country, where patients are encouraged to be their own advocates and where information is plentiful for those who work to find it. Being an RN and a patient at the same time, it certainly must cause double the frustration and double the anger for you. Your energy should be saved for fighting the cancer, not fighting the doctors.
I am assuming that you have good care now, and that people are listening? I'll be very interested to check out your website and book, and I know others will to. If we can help you in any way with our experts or research tools at EmpowHer, I certainly hope you'll use us as a resource. Our founder, Michelle, had an experience very much like yours, and that's the whole reason she started the site and became dedicated to the cause of women's health. She just got tired of swimming upstream in order just to be heard.
Actually Diane I'm still swimming upstream and have just been abandoned by my gyn oncologist. He states that he is limiting his practice to patients with active (gyn) cancer at this point. I reminded his office manager of my long history, 22 years, with HPV and that with this new invasive anal cancer and the vaginal walls being so close in proximity AND having vaginal and cervical pain I believed it is a top priority to get a colpo. I practically begged him to continue to see me. Instead I was blown off to an obgyn group and not one of them is a gyn oncologist. A lot of good THAT is going to do me. I was informed of this abandonment via a RECEPTIONIST and never even received anything in writing stating he was downsizing his practice, giving me some time to still be able to see him (I think 3 months is reasonable) and to provide names of other gyn oncologists until I pursued the issue. Funny how this happened only one day after I called to ask them to "accept insurance" and write off my copay given my current financial situation. Utterly disgrceful!
Oh no. Bonnie. This just happened? That's awful. Where do you live? I know you're in the East, but what city and state do you live in? Do you need help finding a new gyn oncologist? If you would like to give me that info offline, just click on my name in orange above this question and I'll get it in my private email box. Perhaps there's something we at EmpowHer can do to help you find someone who will work with you.
Bonnie: Keep up the good fight. You're an example to us all by sharing your story here.
Bonnie - here's wishing you all the best in finding another GYN Oncologist who has courage and compassion enough to take your case. Please stay in touch and update your situation with us. I'm hoping you'll have good news to share, soon.