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giving it up

melbas2
Posts: 108
Joined: Aug 2010

I'm done y'all. now they want to start trestments all over. I can' do it. Good luck to you all, Melodie

melbas2
Posts: 108
Joined: Aug 2010

they have never saud those words to me, but my sisters are now hearing it after thier peps. My doc wouldn't keep this frim me... would she? I had the port,, I've hsd the hystercotmy, I've had hemmy surgery, I've had the 6 day Atgam treatment' I'vr had the cheom, the radiation, And most recently the port. I haven't had a pap since I started this. I haven;t had a mammogram. My neweat set back back is the bloating, I know I'm trying to gain weight, but it is all supposed to be in my stomach. I was a very cute 30 year old pregnant woman...but I/m now 50. Any clues on this one?
thanks, Me;odie

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

hey, melodie and everyone; i have never had HPV and have been getting paps since I was 20_--i am now 58. they even tested me again at MDA for both HPV and HIV> my doc just said it was bad luck. my body could not fight the cancer cells. i never smoked (my mom did) and i drank only a few years of my life. sooo who knows. i did have constant irritation and inflammation for over a year and that is when i went to the proctologist. and he said it was not cancer. UGH!!! another missed diagnosis. so we can get this stuff for no reason at all, so it seems. sephie

sandysp's picture
sandysp
Posts: 734
Joined: May 2011

They have said that cervical cancer and squamous cell anal cancer are caused by a virus called hpv. This came from more than one cancer specialist. I think if we were gay men (hope this is not offensive because many of my best friends are gay) there would be more openness about antiviral medications and we might be getting them or could have gotten them. Women only have a good voice when it comes to breast cancer.

RoseC's picture
RoseC
Posts: 501
Joined: Jun 2011

As far as I know, I was never tested for the HPV virus when I had the original surgery to remove the tumor (Sept 2008). I was recently tested and the result was negative, but my gyn told me that just means that the virus is currently not active. I could still have it, but it's dormant.

My oncologist is the one who said most anal cancer is caused by the HPV virus.

I also had a lot of constipation issues (real bad) for several years before diagnosis - don't know if the constipation was DUE to the cancer or was a contributor to it.

It certainly is very confusing!

sandysp's picture
sandysp
Posts: 734
Joined: May 2011

I think we all need more information on HPV 16 as well as other HPV's. This was the first time I heard that the virus may not test positive unless it is active. And "active" in what way? My internist tested me for everything known to man to try to figure out why I was at best (1)"too uncomfortable to sit for more than twenty minutes" (2) or go to sleep". But my blood tested famously and still does. Something for which I am grateful. I'm beginning to understand now that some of the pain I had in my pelvic bone before may have been my body's defense system pushing out platelets? Sometimes I would get out of bed at 4 a.m. to soak in a hot tub and want to just wail from the pain. Turns out Tylenol works a lot better for the kind of pain I had than Advil. Now I learn these things! It's pretty obvious I'm no Einstein:-)

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

yes, i have also read that HPV and HIV cause anal cancer but i would think that other things could cause it also such as poor immune system, and chronic inflammation and irritation of the anal tissues. i thought mine was a hemmie and my first doc misdiagnosed for 9 months. i perhaps do have the HPV virus and each annual pap smear did not catch it because it was dormant but who knows. i hope not for my hubby's sake. we just have to keep letting others know to be careful and if young enough to get the vaccine. sephie

RoseC's picture
RoseC
Posts: 501
Joined: Jun 2011

I found this - it explains a little about 'dormant'. The site is for cervical cancer, but it mentions the same HPV virus can cause anal cancer. The site also has answers to a lot of other questions...

http://www.thehpvtest.com/about-hpv/hpv-faqs/#Can-you-get-HPV-through-oral-sex

'Question:
After you get HPV, will it go away? Or will you have it forever?

Answer:

Medical science does not yet have all the answers to life's mysteries, and this is one of them. The Centers for Disease Control and Prevention (CDC) estimates that more than 90 percent of HPV infections are "cleared" by the body within two years. However, it is not known for certain whether the body actually gets rid of the virus altogether, or – as appears to happen in at least some women – the virus is merely suppressed to a low, undetectable level. It's possible that either scenario can occur, depending on the woman.

The good news is that even if the HPV infection is merely suppressed by the body – "hiding" in the cells at a low level – it cannot cause abnormal cells to form or spread to another person when it is in this non-detectable state. The bottom line: A negative HPV test means you are risk-free for at least the next few years.

However, it is believed that old HPV infections can "re-activate" years later, most likely due to changes in your immune system. (That's why it's important to keep your immune system healthy, by eating well, exercising and not smoking. Some experts also believe that taking a folic acid supplement helps.) In addition, if you have sexual contact with a new partner, you could get a new HPV infection with a different type of the virus. Thus, periodic re-testing is needed. Current medical guidelines recommend that women with normal Pap and negative HPV results be re-tested every three years. For more information on how often you should be tested, visit the section of this site on "Understanding Your Test Results."'

Captain11
Posts: 88
Joined: Apr 2011

Hi, Rose.. Thanks for the info. I have to say that this is news to me. I am 60 years old; have had paps every year, blood tests, etc every year, both by my primary care doctors on the outside and by the medical doctors at the VA hospital. I am a Viet Nam era veteran. I have never tested positive for anything. including the HPV. I have absolutely no risk factors for any type of cancer (no smoking, no drinking, no illegal drug use/abuse, excellent diet, and exercise, no multiple partners, etc). My oncologist said it is a complete mystery how I could have gotten cancer. I am a walking anti-oxidant. So, I am dumb-founded about the HPV thing... unless it is in everyone, and it rears its ugly head when and where it wants... and it was just my un-luck of the draw. I will check out this web-site. I am curious. I am now 15 months clear. I sure don't want this cancer to happen again. Thanks again for the info. God bless.

alis7910
Posts: 80
Joined: Jun 2010

So sorry to hea about all that you have gone through; you have great strength and spirit. I send you love and blessings
alison

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