56 replies to this topic

[Tedsey]

I just had a cervical biopsy today.  Not extremely painful, but since my PLT are very low, my cervix had to be cauterized.  Well, for lack of a better way to explain it, the cauterization feels like your pelvis is being electrocuted and simultaneously ignited by a blow torch stuck up your vagina.  During the 4th and most painful blast, I couldn't help but contemplate whether or not a BMB was worse.  I still cannot answer that question.  It is a toss up.  I have yet to fall asleep and I cannot take any pain meds.  I loved it when my husband just ran to the bathroom tonight to take Nyquil for his cough.  I remember those days...

Sorry for the vulgarity.  Anyway, what I really wanted to say is that my gyne told me that immunosuppressive drugs can cause cervical cancer.  It is one of the leading cancers in women with HIV.  Mind you, I don't have HIV, but I am clearly more immunosuppressed by Sprycel (than the CML alone).  Just my extremely low counts tell the story.

Most people get the human papillowmavirus.  However, their bodies keep it in check.  When you are immunosupprresed, the body has a harder time, so cervical cancer develops.  She thinks this is what has happened to me.  Does anyone routinely get an abnormal pap since dx?

I always get a yearly pap.  This is my first one after my diagnosis.  And it is the only abnormal one I ever had.  Anyone else with cervical cancer or pre-cancerous cells since staring a TKI?  I cannot help but think the nasty WBC and RBC stim shots had a dirty hand in this too.

Teds

[Tedsey]

Correction.  Most female people have HPV, but their bodies keep it in check, so it is not detected.  Sorry.  I wrote this in the wee hours of the morning.

[Tedsey]

Wow, I am totally responding to myself.  Just wanted to say I am not "freaking out".  Weird for me, eh?  I think I have been hit so hard in such a short time, I either have permanent nerve damage, and don't feel anything, or I have come to peace with being another Job (cannot help but think someone up there is playin' with me).  My new motto is, "Hit me with your best shot!   Whatever..."  On a positive note, I don't seem to have breast cancer.  The doc suggested I get a mammogram to be safe, and it came back clear.  Phew! 

Whatever I have on my cervix is in a very early stage (my gyne thought she could see it, thus that is where she snipped--maybe she snipped it off--hee, hee).  They do nothing for it.  Sometimes it goes away by itself.  I just have to be tested every six months.  It takes a good decade for it to become really nasty.  So, I have time.  Two "slow-moving" cancers (if you can really consider 5 and 10 years slow---it just sounds absolutely outrageous to me and how docs explain it this way, like, "Look at all the time you got!").  How fun.  However, this :still pending" lab result, but probably cancer, may just go away on its own.  Too bad the CML doesn't behave that way too.  Wish that would go away on its own.  But then again, there is the "Miracle of Michael" (possibly).

All the best to everyone, and blessings also to those of you who have or are suffering more than one cancer.

Teds

[Trey]

Tedsey,

The PAP test is not that accurate of a test.  And a PAP test by itself cannot detect cancer.  It screens for "abnormal cells", which can have a number of causes, including hormonal changes, abrasion, and many others.  That is why a positive PAP test is not something to be alarmed about in itself.

8% of adults in the US have HPV.  So if the PAP test only detects HPV, and only 8% have it, isn't it a waste of time for many monogamous women?  But docs think that no one should ever be trusted, so they expect regular PAP tests.  Just sayin' the docs might trust the input of women patients a bit more as to whether the test is really necessary.  Especially after many years of a trusting marriage.

http://www.associate...ts_why_not.html

[knoppl]

A  good friend of mine had abnormal paps for years and nothing became of it.

[Tedsey]

After looking at my cervix, my gyne said it looked abnormal (coposcopy).  She said she thought it may be early stage cancer (which is just watch and wait), so she snipped 3 pieces.  But I may be lucky and the lab will come back with pre-cancerous cells only which sometimes goes away on its own.  Just waiting to find out.  I understand what pap smears indicate.  The nurse told me that so many people get abnormal ones and most of the time it is nothing.  However, my gyne thinks something may be there.  I hope the lab finds her wrong.

[cherylannes]

Dear Tedsey,

I feel for you, truly I do.  I always go for my annual pap smear.  I am 53, so do the math, that's a lot of pap smears.  Here in Canada we have an option for the most expensive one that is supposed to be much more accurate.  The kit the Dr. uses is designed to minimize false positives or worse.  It actually removes a bit of tissue at the same time.  Once, long before dx with CML, there was something suspicious, but I repeated the test, and all was alright.  It is now ten years going on eleven years post dx and I have not had any abnormal results.  I can say that I went through a course of stim shots as well as I had my own cells harvested, just in case.

One of the "blessings" of having this disease is that we seem to have access to being more closely monitored, which is fine, but then there is always the worry and the stress while we wait for the test results...

Warm healing thoughts, meditations and prayers that all will be fine.

Love and Peace,

Cheryl-Anne

[Marnie]

Tedsey. . .good luck with the results.  Keeping my fingers crossed for you.  I had my first abnormal mammogram ever. . .jeeze. . .we just can't get a break!  Also wanted to offer you my congratulations on your excellent and vivid description of the procedure.  I think you could win the Pulitzer for that one.  I was cringing as I read it.

Marnie

[Tedsey]

Trey, thanks for the link.  My gyne said the same thing you wrote in your first paragraph.  But the office didn't do a repeat pap (re. the article from your link).  I went right to a colposcopy and biopsy.  This is probably because I am on a TKI and have leukemia.  BTW, I misspoke about the HPV.  The thought is that it lies dormant in most women because the immune system is able to keep it from doing any harm.  It cannot be detected by any test until it "wakes up", which is probably where there 8% comes in.  My gyne told me this and that most cases of cervical cancer are caused by the HPV.  And I believe many women with HIV (a population that has a higher rate of cervical cancer) have been sexually monogamous (it only takes one male for either condition).  I don't think it is always that the doctors don't trust us, but they are convinced that the pap does more good than not.  I would believe most females must come out fine their whole lives.  I don't know the ratio of normal to abnormal tests in a female's lifetime.     

[Tedsey]

Thanks for the good wishes and info Cheryl-Anne and Marnie!  Good things right back to you.  I guess I sound a bit deranged.  Emotions get the best of me.  Clear thinking waffles.  Thanks for the input on the stim shots.  I have to believe with all the garbage that people put into and what they do to their bodies, other cancers are caused by more (or less) than just shots to promote cell growth.  Don't know what I have been exposed to or am exposed to and I don't know what I may have inherited, (wherever CML may come from), but I tend to see the shots as a choice, and kind of a rock and a hard place.  Thus, I could refuse, but I never do.  It is hard to lose so much of what I believed to be control of my life.  Perhaps thinking I was the master of my own destiny (or body) before CML was just an illusion.

Peace and blessings,

Teds    

[hannibellemo]

Teds,

I have my fingers and toes crossed for you! Fortunately, I'm no longer taking G or that would probably be impossible - cramps, you know.

As a little diversion, the eaglets are growing and their parents have had a very tough few days with 35-40 mph gusting winds, rain, snow, sleet, etc. It's like an eagle soap opera! The babies remind me of ET.

Not to make light of what you are going through, I just hope it will make you smile and forget your worries for a bit!

Fondly and with warm thoughts,

Pat

[jrsboo]

Dear Teds,

I had an abnormal pap about 14 years ago, they did the snippet thing (almost passed out in the office), and then had to have a cone biopsy (did pass out when they tried that in the office, and then had it done in the hospital).  Never had another abnormal pap again, and I got tested every couple of months for a while there.  

Since then have had hysterectomy (completely different reason) and they took the cervix at the same time.  So no more worries.

The cone biopsy may be as far as you need to go.  They just take out the bad parts, and leave the rest alone.

But this does indeed blow wads that you have to go through this along with everything else.  Seems there ought to be a check list that the universe has to consult, and if you have CML, you just aren't allowed to have any other major illnesses. 

Caroline

[Tedsey]

If anyone is still interested in my cervix woes, I got the results back.  It appears there was a major discrepancy between the pap and the biopsy (the nurse insisted they use an accurate pap test).  I was told this discrepancy was unusual. 

For those not familiar with the cervical biopsy process, if something looks abnormal, the doctor will "dye" the cervix with certain chemicals.  The abnormal cells will come out stained.  Well, that is what happened to me, so the gyne cut them off.  She explained to me that they were likely precancerous to early cancerous cells and not to worry so much because it is very slow moving (yeah, that eased my soul).  So, my mood was not so great.  Wow, two cancers.  How lucky!  I breast fed and was considered a low risk for uterine and cervical cancer.  Go figure.  I just scoff at those things nowadays.  See how cynical I have become?

Anyway, I got a call that the "abnormal" cells really didn't come out abnormal.  The lab described them as "irritated"--whatever that means.  I tried questioning the NP, but she could not tell me much as to what an irritated cell looks like (and I had trouble finding info on the net).  I would like to know exactly what an "irritated" cell is.  Well, it appears tampons, sex, and some drugs can irritate the cervix.  Since I don't regularly use tampons and have had a period from hell the last 2 months, I have to admit it was not the sex.  So, the conclusion we came up with is the TKI.  It is quite possible the drug is causing my cervix to be irriated.  But I still have to return for a pap every 6 months.

Thought this may be helpful to some who may go through this.

All the best to everyone and thanks for the compassion, sharing your stories and positive thoughts.

Teds

P.S.  The progesterone did not work to stop my bleeding, but the birth control pills are working well.  I am just getting zits and bloating.

[GerryL]

Good news on the pap smear Teds - you certainly didn't need cervical cancer as well as CML and I'm glad the pill is working despite your zits and bloating. Chat to your doc about getting a cream for the pimples, I use Differen, which treats pimples (which I don't have) and also the rash I get on my face from Glivec. One of the good side effects with these creams is they also reduce the lines and wrinkles on your face.

Gerry

[Marnie]

And I thought my stress-level was high. . .your's must be through the roof, Teds!

I was going to make some crack about TKIs causing me to be irritated, too. . .but I decided it was in poor taste.  

Hope that life can get back to "normal" for you soon.  This just really sucks.  You deserve better than this!

Hang in there,

Marnie

[MJL]

So happy to hear your news. Doing my best to do a happy dance for you. Right now that is just a little foot tapping LOL. It does seem that we get lots of other health issues after our CML diagnosis. I am wondering if it's the treatment, or in my case simply part of the aging process? I was a healthy strong 60 year old at diagnosis, now I seem to be falling apart at the seams from one thing or another. Plugging along though and trying to stay positive....

Again glad to hear your good news.

MJL.

P.S. Maybe having zits will make people think you are a teenager!

[Happycat]

Teds,

Sorry I didn't see this sooner or I would have replied.  I had/have HPV, and had an abnormal pap smear - dear God - over 20 yrs ago now!  There are different classifications for abnormal cells.  Atypia, dysplasia I, dysplasia II, and then I think the next is localized cancer, followed by metastasized cancer.  Sometimes, they just label them "class I, class II, etc".  (Medicos like the change the lingo all the time.)   Atypia is more of the watch and wait one.

They remove all the other types.  I had mine removed via laser surgery.  It really wasn't that bad.  Sounds like they didn't even try to anesthesize your cervix at all.  I'm sorry you had to feel that.  I only got one good zap that I could feel with the laser, when the doctor noticed a little bit growing along the side close to my vag canal.  He zapped it, but there wasn't any lidocaine or whatever over there.  So I know how ouchy that can be.  I assume the cauterization was probably even hotter.  Youch!  My doc used a gel to stop the bleeding, not sure why they went with cauterization.

Anyway, since that time, all my paps have come out just fine.  The last pap I had (they do some new thing with them now), they told me since it came back okay, I had very little chance of getting cervical cancer in the next 3 yrs, so they told me I didn't have to come back for 3 yrs. 

Fast forward to 2 days ago, when my gyno's office called me to make an appt for a pap.  I had just had my mammogram, so when her office called, I about fainted thinking they were calling to tell me it's breast cancer!  Now, I wonder if they got the dx sent to them from the onc and decided they'd better take a look at my cervix toot-sweet!  Well, that's one more thing to worry about.  I could easily have the HPV still laying around dormant in there somewhere.  I will definitely bring this up, TKIs, immunosuppression and HPV, with her.  Thanks so much for posting about it. 

Regarding the irritated cells, I think I had that, too, after the surgery.  They monitored me to make sure the cervix was healing properly.  I noticed I would have light bleeding after sex.  When I brought it up with the gyno, he took a look and said the cells didn't grow back correctly.  I think they are supposed to be squamous cells (as he said it, "designed to take a pounding" - his words, not mine!).  Instead, as I healed, they grew back as "columnar" cells, so like a bunch of little sticks lined up.  Those type of cells tear very easily, hence the bleeding.  He gave me a gel with acetic acid in it (vinegar), and just the change in pH made the cells change from columnar back to squamous.  Anyway, you might want to ask your gyno what is meant by irritated cells, and if there is anything you can do to "unirritate" them.  Maybe there's a nice easy gel out there for you, too.

Hope you are feeling better now.  

Traci

[GerryL]

Got a message from my GP this afternoon regarding my pap smear results - she was ringing me to chat to me about my results, normally they don't ring if everything is okay. Tried ringing back, but she is unavailable till Monday, so I guess I wait till then. First pap smear since starting Gleevec and possibly first odd one in a number of years.

[hannibellemo]

Don't you just love it when they do that on the weekend? If they are going to call you on a Friday they should damn well make sure they are available for a call back! (One of my pet peeves, I feel better now)

Pat