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1.6 chance in 10,000 - WHY??

Memphis Mary 49's picture
Memphis Mary 49
Posts: 52
Joined: Aug 2011

I have always been a questioning type of girl. So, I just have to ask 'WHY'.

Why me? Why us?

5000 new cases per year for 308,000,000 people in the USA = 1.6 in 10,000 chance.

I was diagnosed in May 2011 at 49 years old and have completed treatment. I was completely flabbergasted when I received my diagnosis!! Like so many others, I am NEGATIVE for ALL of the contributing factors, including HPV diagnosis. I've always been health conscious (good wt, never smoked, drink wine in moderation, took vitamins, calcium, fish oil, went to the gym regularly). My parents are 79 and 80 and in very good health, my only sibling is healthy. The only medications I took/take regularly are FEMHRT (low dose hormone replacement for peri-menopausal symptoms) and Wellbutrin 300 XL for the huge drop in energy that I had. (Even though it is an anti-depressant, I had absolutely nothing in my life that depressed me, just very low energy).

So, it is driving me crazy. My doctor says sometimes our DNA/RNA just mess up - no reason. Maybe so. But I wonder if there is ANYTHING that we have in common that could contribute to having anal cancer. Something we eat, somewhere we go, something we do.... Am I the only one that wonders this?? The internet searches always come up with the standard contributing factors. That is not of any help.

Ultimately, I really want to know if there is anything that I can do differently to keep anything like this from happening again. Have any studies been done? Or is the rarity of the disease and the promising prognoses keeping funding from anal cancer research? Is there some way we can talk about this and maybe figure out if there is anything we have in common? Am I just being silly for wondering this, or does it deep down really bother anyone else?

I realize that I may never know 'WHY' and that is ok. God doesn't tell us 'Why'. But, I would like to try to find out what may be a 'missing link'. What do you all think??

Memphis Mary 49's picture
Memphis Mary 49
Posts: 52
Joined: Aug 2011

I will add that I work in a children's cancer treatment hospital. I have for 15 years. Chemotherapy can cause secondary malignancies. I've always been very careful with it. But, I wonder if that might be a cause for my diagnosis....

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

Hi MemphisMary,

On my first visit to see my oncologist, I expected there'd be a survey of some type that would ask all kinds of questions - questions about environment, lifestyle, etc. I figured they'd be collecting data like this to try and find commonalities in those who get this cancer. There was nothing - actually, there were no questions at all.

My doctor said my particular hospital doesn't contribute information like that to any national cancer site. I was rather surprised (this is a very reputable hospital).

Without gathering information, how are they going to further knowledge about the cancer?

Here are some of my personal details I can think of that might be pertinent. I'm 57 now and was diagnosed at age 54.

- had several intimate relationships (never had an abnormal pap or any signs of infection)
- smoked for about 35 years
- drank quite a bit during my 20's and 30's
- worked with x-ray equipment and chemicals during my 20's
- have a history of bad constipation, lots of straining for several years prior to diagnosis (personally, I think this may have been a factor)
- started menopause rather early, around 45 I think
- had a bad upper respiratory virus at age 45 (was this a sign my immune system was compromised? never had anything like this before, actually I rarely got sick at all)
- had uterine fibroids, benign, had a myomectomy at age 41
- love sweets, don't eat many vegetables
- sit (at the computer) for hours at a time, both at work and at home
- don't get much exercise now, but was very active in my 20s and 30s
- had a lot of trouble with my periods - heavy bleeding, bad cramps, and backaches
- used to follow the bug spray machine around as a kid - we loved to breath in the bug spray (how weird we were back then!)
- use hair spray and lots of smelly (nice smelly) shower gels
- have a cat that died of intestinal cancer, cleaned her litter box regularly (I don't think this has anything to do with it, just mentioning everything I can think of)

That's all I can think of now - I'll add more if I think of anything. Maybe we can find a common thread among all this, although it'd be tough with so many variables out there in our world. Thanks for posting this question - it's very interesting.

z's picture
z
Posts: 1250
Joined: May 2009

My tumor was checked for hpv after I requested it to be. The dx was yes it had hpv, one of the cancer causing types, but they couldn't determine which one.

Like you Rose, we ran behind the mosquito truck, funny you should mention that, I was a 35 year smoker and quit at anal cancer dx, drank until age 29 a lot I might add, had several one night stands as like you said it was the 70s and we all did that. Also, I would hold bms until I returned home, and I think this is a contributing factor, sort of like constipation, but self made.

Mary I think I had several contributing factors, but I also know that I think stress is a major contributor, where are bodies just can't fight off the bad cells anymore. You working in a hospital on the childerns cancer ward, would have to be one of the most stressful jobs ever.

The fact that we have been treated and hopefully and more than likley cured from anal cancer, we now are very aware of our bodies, and I know I won't put off going to the dr.

I wish us all well. Lori

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

Self-made constipation - me too!
Not any more - if I gotta go, I go. :)

Memphis Mary 49's picture
Memphis Mary 49
Posts: 52
Joined: Aug 2011

Rose, that was a great list! Looking it over, I do see some commonalities.

-I have had several intimate relationships as well - maybe 6 over my lifetime. A few of those partners had a number of relationships.

-I have had a long history of constipation - as far back as I can remember. The colonoscopy revealed a "very redundant colon". As my doctor described it (this is gross to think about) it is like stuffing sausage into a casing and it kind of falls back onto itself because you just keep packing it in. He said he wasn't surprised that hydration and water didn't fix my problem. I agree with you that I think this is a factor.

-I remember the bug spray trucks and went out after it passed, but did not actually chase it.

-I love sweets too, but do eat vegetables, not much fruit though.

-I've always had cats too, but none ever died of cancer.

I was surprised that questions were not asked either at the doctor's office - maybe we will come up with a questionnaire and figure this thing out!!!!

Lori,

I agree with you too that stress plays a role. Actually my job is not quite as stressful as you might imagine. My stress has come more from financial side. The economy affected my husband and we have 2 17 year old boys (one is his and one is mine - they both live with us full time) and my 20 year old daughter who's in college but moved back home to help me when I got diagnosed. I work full time (3 12 hour shifts per week in a supervisory role and decided I needed my masters degree also (crazy). Those things are the majority of my stress. (And everyone in my household tends to be quite messy which irritates me).

So basically, all I've been able to figure out is constipation and stress for me.

I also wonder if getting a Guardisil series of vacinations would do any good at this point. I've had all the kids get their shots for HPV.

Would love to hear from others

Angela_K
Posts: 370
Joined: Jan 2011

Yes, I had numerous sex partners in the 80's. I smoked when I drank in college. I have not managed stress well (until my diagnosis.) But so have most of my friends and they didn't end up with anal cancer. I've never allowed myself much time, if any, to dwell on 'why.' That's in the past and for me, a this point, serves no purpose.

Cancer brought about a deeper appreciation for living a beautiful life with beautitful friends and family. It's teaching me the vital importance of being sound ~ body, mind and spirit ~ following the teachings of Dr. Andrew Weil. It has allowed me to become as strong, outspoken advocate for anal cancer prevention, diagnosis and healing.

So I can't offer you much on "figuring this thing out." But I do think silence is the enemy with anal cancer.

Many blessings to you on your journey.

Angela

Memphis Mary 49's picture
Memphis Mary 49
Posts: 52
Joined: Aug 2011

Angela,

I will probably arrive at the place you are where I don't ask 'why' anymore. I am just 3 weeks out of treatment. Maybe I am just afraid that if I don't CHANGE something, I won't be cured or, if cured, will recur. Now that I think about it - that is probably the root of my 'why'.

I thought I appreciated my life and family and friends, but looking back now; I think I took it all for granted. I agree with you that this experience has deepened my appreciation for my life and those in it. I'm done 'burning the candle at both ends'. Life is too short!

I agree with you too that anal cancer needs many strong advocates. I am glad that you are able to do that. I hope that I will move past the fabricated stigma in my mind, and be a strong advocate too. I do have a deep desire to help others with this, helping myself in the process. Guess that is why I am so glad to have found this website. Just talking to people who understand helps so much.

Thanks for your honesty.

Mary

Angela_K
Posts: 370
Joined: Jan 2011

I understand. And like so many, I am living much cleaner than before. Environmentally, physically and mentally. Stress is created by our o wn minds and I've come far in managing it. I've eliminated poisons, including relationships.

I just feel so strongly that I had this particular cancer for a reason . . .God knew that I would open my mouth. I can't go through all of this and then be afraid to speak out just because the cancer was in my ass. :) Farrah Fawcett didn't talk about the kind of cancer she had until it recurred. Anal cancer is preventable and highly curable. Lives can be saved. Again, silence is the enemy. But that's just me.

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

Z - I wish I had known to ask them to check my tumor for hpv. As far as I know, they didn't. I've been checked since then. The results were negative, but I understand that just means the virus isn't currently active - may have been before but isn't now.

Memphis Mary - As I understand it (and I could be wrong) the vaccine is only good for those who don't already have hpv, ie, if you've already got hpv, the vaccine doesn't help....but I could be wrong about this...

Memphis Mary 49's picture
Memphis Mary 49
Posts: 52
Joined: Aug 2011

Rose,

You are probably right. But there are so many strains of HPV, I thought I would ask my doctor at the follow up appointment if there would be any benefit. To my knowledge, my tumor wasn't tested for it. If so, they didn't tell me.

I will post again if my doctor says there might be any benefit...

Thanks,
Mary

Berri
Posts: 7
Joined: Aug 2011

I was diagnosed at age 54....my radiologist said it was caused from environmental factors, not from anything I ate or drank. I had been under a lot of stress and in my 30's came in contact with a bad insecticide in my home where we had to throw out carpeting. I think stress plays a big role in bringing out illness. I had always taken care of myself, was healthy and I did not have hpv. I try to use all "safe" products that I buy from Whole Foods market and no toxic housecleaning products.

Memphis Mary 49's picture
Memphis Mary 49
Posts: 52
Joined: Aug 2011

Berri,

Its is interesting that you say environmental factors, and bad insecticide. I work around alot of chemotherapy, indirectly since 2005, but directly from 1996 - 2005. It has made me very suspicious. There are many nurses who have had or died of cancer in our facility (breast, thyroid, lung, lymphoma, liver...) I think I need to work somewhere else. I had forgotten, but 2006 or so, I got nerve damage from coming in contact with old malithion ( insecticide). The feeling in my hand and arm eventually came back, but took a couple of months. I appreciate your posting. It helps me to solidify my thoughts.

Mary

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

just to give you my info: i am 58 diagnosed at 56. never smoked but mom did -- in car and in house. ran behind the mosquito trucks also. followed the crop dusters on our farm. drank too much in 20's but have quit for over 20 years. never ate correctly in my 20's and 30's but changed. had relationship with one man who had many partners. have never been dx. with HPV. did not test tumor. i worked as dental hygienist for 10 years and did xrays--also we never wore gloves or face shields in that era. not careful while doing xrays. i have had 2 basil cell carcinomas due to having great tans in my 20's but stopped sun exposure at age 28. due to constipation , i had hemmoroidectomy 20 years ago so that is why i thought it was a hemmy. ( i was misdiagnosed for over 10 months). never have had children. have had tons of stress in my life ----even childhood. i do not heal well so i know that i do not have a great immune system. i need to tell the folks at MDA to do this questionaire. sephie

Memphis Mary 49's picture
Memphis Mary 49
Posts: 52
Joined: Aug 2011

Thanks for your input. I wish MDA would do a questionnaire. Someone should be collecting data. How do they know that 90% of anal cancer patients have HPV. Do they just make up stuff? They are certainly not asking us, are they? I find it a little irritating that with the tremendous increase of anal cancer cases, there is not any new information out there. Someone with clout at CDC or NIH ought to care! -- Sorry about the venting....

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

at MDA, my radiation team does ask me a lot of questions but they are about my current side effects, size of BM's ,, sex life, pain etc. i give them suggestions all the time. i go in sept. for follow up proctoscope and etc. i will talk to them. i also am having my first colonoscopy in 4 years so i hope they do not rip my anal area because i am just now feeling less pain in that area ( i am 25 months post tx and have had pain, bleeding, etc. ) sephie

mp327's picture
mp327
Posts: 2819
Joined: Jan 2010

I have sat on this question for a long, long time, thinking that it was ridiculous and the answer would have no bearing on whether or not a woman is at increased risk for HPV/anal cancer. However, I'm going to ask it anyway.

I have never been pregnant. It seems to me that there are a fair number of women on the blogs and forums with anal cancer who do not have children (or do not mention ever having had children). That has bugged me for some time. Is there something about hormones that trigger or doesn't trigger HPV to go crazy and cause cancer in some women? My question is not based on my wild imagination. It's based on the fact that I know for sure that never having been pregnant is a risk factor for ovarian cancer.

Just curious--that's all!

Memphis Mary 49's picture
Memphis Mary 49
Posts: 52
Joined: Aug 2011

Well, mp, I have been pregnant twice and had two children via c-section ( that was 18 and 20 years ago). I contracted herpes in the early 1980's, which of course I have never been able to get rid of. It is only a problem a couple of times a year though. At 48, I started the peri-menopause thing with hot flashes, began to have irregular periods etc. I was placed on the lowest dose of oral hormone replacement. That was a year ago now. I know that never having been pregnant is a risk factor for ovarian cancer - so I just don't know.

I went to the ( I think it was the NIH website which forwarded me to http://fundedresearch.cancer.gov/search/SearchForm) to see how much money has been devoted over the years to the study of anal cancer. For 2010, it was 2.2 million which seems like alot until you compare it to other cancers.

I guess I'm just weird like that. It is just that I want to know that someone, somewhere is trying to fight the battle for us....

Dog Girl
Posts: 100
Joined: Sep 2010

I haven't ever been pregnant either so I don't know if that plays into it or not. I was in college in the 70's, (and I've never married either), so suffice it to say I've had more than one partner. If someone has ever asked how many partners I've been with, I tell them a very specific "I am somewhere between a virgin and a ****!", so I think the possibility of me having HPV 16 or 18 is probably high. That is my only risk factor beside being female. However my gyno doesn't think it is important to check for it. She said while at my age (I was 51 when diagnosed and treated) and post menopausal (I went through the change fairly early; maybe around 45?) without my having anal cancer she would probably do a PAP on me every 3 years, but she will do one annually now due to radiation in the area and a slightly increased risk of cervical cancer; again probably due to chance of HPV 16/18.

I think I had forgotten that not having children was a risk factor for ovarian cancer. I hope I've pulled my major medical ticket with anal cancer and I, and none of us, have to face either a reoccurance or another primary cancer. (I was diagnosed with anal ca between two breast biopsies, but fortunatley they ended up OK.) You know how they say that God doesn't give us anything that we can't handle and it will make us stronger? (And I do believe that btw.) Does anyone else ever want to yell to God - "Hey, I'm strong enough now; I don't need any more testing!"

mp327's picture
mp327
Posts: 2819
Joined: Jan 2010

I would like to yell that! I am glad that your breast biopsies were negative. That must have been a very, very stressful time for you and I'm sorry you had to go through all of that.

Dog Girl
Posts: 100
Joined: Sep 2010

Oh it was, but I had my first laugh just a few hours after getting the anal cancer news. I was on the phone with one of my best friend, Lynn, and I was telling her about the anal cancer diagnosis when the breast biopsies popped into my head. I said something like "OMG, my breast biopsies, what if I am all eaten up with cancer inside?" Well I am tall and rather hefty and Lynn says "Oh "Dog Girl", if you were eaten up with cancer you would be losing weight. Are you losing weight?" she asked (and she knew the answer too), and I laughed out loud and said "You know I'm not B____!"

I've read that a positive outlook does nothing to affect your medical outcome, but I KNOW that it affects the quality of the life we live for the time we do have on this good green earth. Even though this board was not up when I (or you) were going through treatment, I am so thankful for everyone's input, encouragement, suggestions, etc.. And believe it not, I think if I had to choose a cancer type, I would go ahead and choose the path I have walked.
The treatment time is short and the cure rates are very high relatively speaking.

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

I also have never been pregnant even though married at age 21 and divorced at 28. I was on birth control pills from age 20 until menapause at about age 48. sephie

mxperry220
Posts: 349
Joined: Mar 2011

Just to set the record straight. I am a 60 year old male who has had anal cancer. Even though more women have this type cancer it does not discriminate between male/female.

mp327's picture
mp327
Posts: 2819
Joined: Jan 2010

Yes, we all need to remember that. Thank you for reminding us. I hope you are doing well.

mxperry220
Posts: 349
Joined: Mar 2011

You seem to be one of the nicest most informed persons on this board. We are lucky to have a person like you posting to this board. Thanks Again. Mike

mp327's picture
mp327
Posts: 2819
Joined: Jan 2010

You are very kind. However, I wish none of us had a reason to be here.

Martha

Angela_K
Posts: 370
Joined: Jan 2011

Three miscarriages and 2 term pregnancies. The second full term pregnancy I delivered twins.

sissy310
Posts: 300
Joined: May 2010

Hmmm, looking at what everyone was writing, there are some similarities with me as well. I also have and and had cats all my life, also smoked (quit 27 years ago this month), had two miscarriages and two full term births, was diagnosed with hpv but only after biopsy of the tumor before treatment, never diagnosed before that. Chronic horrible constipation...loved my sweets too - hardly ate veggies when I was in my 20's. Bad periods all the time until I went on the pill in late 60's and that helped enormously with cramping and excessive bleeding. Had a hysterectomy in 1995 from a prolapsed uterus. Never had fibroids or abnormal paps. Tried to be healthier once I had my first miscarriage and quit smoking and ate better. Do not exercise much but am active. Was diagnosed later than a lot of you...62...perhaps there are correlations among us that point to similar reasons our immune systems went nuts. This thread was very interesting. Like everyone else, I often wonder what triggered all this and why. Marilyne

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