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Questions, Worries, Venting??

WorriedWoman1970
Posts: 4
Joined: Nov 2011

Hi, all. I've been reading through this forum for a couple days after finding it researching information. I apologize in advance for the length of my post. I'll state from the get go that I KNOW I should be check by a medical professional, but we've not had health insurance for a few years, and while we are enrolled now, coverage doesn't begin until January 1, 2012, so I am really, really trying to avoid anything that might create a pre-existing condition situation where I won't be able to have treatment covered IF it is something serious.

I am concerned that I MAY have anal cancer. I have been feeling ill for quite some time now and only recently did it occur to me to link it to what I have always assumed were hemorrhoids.

I am 42 years old and have had bowel issues for so long I've come to think of them as normal, I guess. Mostly constipation with serious straining for a couple of years now, although prior to that, and sometimes still occasionally, I have diarrhea. When my BMs are "normal" (meaning I don't have to strain) they are usually very thin. I never feel as if I've completely emptied my bowels after going to the bathroom.

For the past two years or more I have had what I assume are hemorrhoids. I have occasional bleeding, but not always. And (sorry if graphic) I recently took a peek with a mirror at the anal area. I don't even know how to describe what's there w/o being gross. The entire anus is completely surrounded by a growth or growths. Kind of looks like a walnut when you split it in half? I don't know...it's a difficult visual to put into words. It is not extremely painful - uncomfortable, yes, but not painful really. I would think that hemorrhoids this size would be much more painful. I can't even tell where the opening is. I've tried using hemorrhoid OTC treatments with no relief.

As I said above, I only recently considered anal cancer. I've been feeling what could be described as "poorly" for the last 9 - 12 months with significant fatigue, some weight loss (and I'm already very thin), loss of appetite, insomnia, and recently low back pain for no reason I can think of.

While researching I learned that HPV is associated with anal cancer. I haven't had a pap smear for a few years now, but when I was in my early 20s I had an abnormal finding of cervical dysplasia and had the cryo?/freezing procedure done. Paps thereafter were normal. I do not know or remember if HPV was mentioned or even tested for at that time, but read that cervical dysplasia is often associated with HPV, and of course, anal cancer.

I know that you all cannot provide medical advice, and don't expect it. I will get to a doctor ASAP after the first of the year I guess. Although I am VERY afraid of waiting another 6 weeks, part of me also thinks if I've waited this long....?

I guess I'm just hoping to hear that I'm not completely off-the-wall crazy for even thinking of anal cancer. And I'm also worried that when I do go the doctor I'm going to be patted on the head and brushed off and I am so not good with confrontation with medical professionals.

Thanks if you read all this...just typing it out makes me feel like I can breathe a little better.

-- Tracey

mp327's picture
mp327
Posts: 2940
Joined: Jan 2010

I wish I could give you a big hug right now and I'm SO very glad that you have come here seeking information, based on your symptoms. As I read your post, I was vividly reminded of the symptoms I experienced prior to getting a diagnosis of anal cancer. I also had fatigue, unexplained weight loss, bleeding with BM's, thin stools, bouts of constipation, abdominal bloating and a feeling of never being completely emptied out after a BM. You have accurately described how I felt. I was diagnosed with anal cancer in June 2008 by a colorectal surgeon, who I was referred to by my internist for an overdue colonoscopy. My internist did a rectal exam on me and diagnosed me with a bleeding hemorrhoid. However, since I was overdue for my very first screening colonoscopy, she referred me to a colorectal surgeon for both the scope and treatment of my "hemorrhoid." As soon as the colorectal surgeon took my history at the consult appt. prior to scheduling the colonoscopy, she wanted to examine me, which she did. She told me upfront that I did not have a hemorrhoid--I had anal cancer. Two days later, she performed my colonoscopy and took biopsy tissue at that time, which confirmed her diagnosis.

I am telling you this because I want you to get in to a doctor ASAP! I understand your insurance issues, but I really hate to see you wait until after the first of the year, especially since you have a history of cervical dysplasia. You are right--HPV is most likely responsible for that, as well as almost every case of anal cancer. You have described your lesions very well and please don't feel bad about that. We are used to discussing such things on this board which might be TMI for most other people. I'm glad that you have made yourself so aware of your body.

Even if you pick up the phone right now and contact your primary care doctor, it may take some time to get into a specialist, so please do not delay! Anal cancer treatment is very successful in cases where the tumor remains localized and has not spread, so the earlier the diagnosis and treatment, the better. Also, do NOT accept a diagnosis of a bleeding hemorrhoid from anyone who is not a specialist and has not done an exam using an anoscope, which is a short scope that can be done without prep and right in the doctor's office. The doctor needs to do this visual examination to discern between a hemorrhoid and possible cancer.

I am going to friend you on this site and I hope that you will send me a private message anytime you wish to get more information or support. I don't want you to feel alone in this and I hope that you will not put off going to the doctor. Please keep us posted. I sincerely hope this turns out to be something other than cancer.

Martha

WorriedWoman1970
Posts: 4
Joined: Nov 2011

Thank you so much for your kind and thorough response. And for reassuring me I wasn't too graphic. LOL.

Your response made me teary eyed. I am so anxious and worried, but so afraid of incurring a huge financial burden if I get deemed as having a pre-existing condition before Jan. 1. The whole back and forth makes me sick on top of everything else.

Because we've been without insurance for some time, I don't have a primary care doctor. And, frankly, not sure I could get anyone here to even see me without insurance or pay in full up front, which I don't really have the money to do. It's all so rock-and-a-hard place, I feel like throwing in the towel already.

I know something is not right, and I've known for some time. More than anything I dread, absolutely dread, a doctor blowing me off as they are apt to do, especially in my neck of the woods. I'm afraid I am going to hear, "You're only 42, it's absolutely not anal cancer. Here's some cream and good luck." I am, however, very close to Pittsburgh, PA, and would prefer to see a specialist there, but again, without insurance yet, I don't see that as being likely.

Anyway, there's nothing anyone can do about all this, but it helps to "talk" it out to someone. I haven't even explained what I'm worried about to my husband yet because he knows I've not been well and already feels mostly helpless because he can't "fix" it, the way men are wont to do.

duckyann
Posts: 162
Joined: Jun 2009

Hi Tracey,

Well this is the 3rd time I am trying to send a reply to your post. Anyhow, I asked Martha to give you my name and email address because this site wasn't working. I live in Pittsburgh and I am 29 months post treatment. I have really good caring doctors and if you need a name to a colorectal doctor please just email me and let me know.

I am with Martha in the fact that I hope you see a doctor ASAP. I understand about the insurance but if you don't mind me asking is the insurance through your work or your husband's? If so pre existing conditions should not matter. I had them before I got insurance through my job and it never harmed me.

I really hope that you do not have anal cancer and it is just something minor and I will keep praying that is all it is. But please get checked. I also had minor bleeding at first, constipation, weight loss and no appetite. I also had discomfort that eventually turned into pain. My symptoms started that I noticed in July 2008 and I did not see a doctor until end of Feb. 2009. I really wished I would of went earlier. This is a very curable cancer. Please let me know if I can help!
Nancy

WorriedWoman1970
Posts: 4
Joined: Nov 2011

Thank you. I'll send you a direct email shortly. The insurance is thru my husband's employer and from what I understand, they can deny coverage for anything that was diagnosed, treated, or for which treatment was recommended for up to 12 months before the 1st date of coverage.

Also I don't know if I can afford to get the initia exam done not to mention if they'd also want to do additional test and that would be assuming I could find a doctor willing to see me.

duckyann
Posts: 162
Joined: Jun 2009

Tracey - You could always call the doctor that I saw. My son was having problems and he did the initial exam with the DRE and anoscope and I am pretty sure it came to $320. They are allowing him to make payments but he had to put $100 down. Please let me know and also if you don't mind when you email me your location. I am concerned and want to help!!!

WorriedWoman1970
Posts: 4
Joined: Nov 2011

Nancy, I sent an email to the address Martha sent me.

duckyann
Posts: 162
Joined: Jun 2009

Tracey - I haven't received it yet. I will keep an eye out and if I don't get it I will give you my email address.

mxperry220
Posts: 360
Joined: Mar 2011

If you have had issues for the last two years I do not think waiting until January 1 is a bad idea to ensure you have insurance coverage. My total cost my insurance company has paid to date is just under $100,000.

Phoebesnow
Posts: 448
Joined: Apr 2011

Try planned parenthood, they will protect your privacy. It was 6 weeks from dx to tx for me. Best of luck to you

azgal
Posts: 31
Joined: Oct 2011

I truly hope it's not cancer, but should it turn out to be cancer it could take more than a month to get back needed tests, and starting treatment within a couple of months or so is fairly standard...so, just my opinion, and only you can make that decision, if it means cancer coverage or not, personally speaking as one without coverage now, I would wait for the insurance to kick in since the chances of getting treatment otherwise can be difficult. Initial treatment is of course a very important part, and so are long term follow up & tests/care, which are very expensive. Short of qualifing for disability (which some do in just a couple of months instead of years, depending on stage), just copays alone for treatment are usually very expensive and more than many can financially absorb even with great insurance in place, and treatment and long term follow up care without any insurance is extremely difficult to even secure...sadly, as many can attest to.

Just my chemo care inpatient per time was over $50,000 each time not including all the other care needed during each stay, plus each daily radiation treatment was $3500 per day x weeks of radiation, not including all the tests & surgeries and after care. My cancer care was fast approaching the 1 million dollar lifetime limit of my insurance. Normally I would say go to the doc asap, but many people with cancer that have no insurance go without care. I'm hoping the best for you and hoping it is not cancer.

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