Kell1960
06-27-2008, 08:03 AM
I had my annual pap/pelvic exam in December 2007. In the past I have always received a letter telling me my pap was fine. I didn't get a letter this time and to be honest forgot about it. Three days ago I went to my Doctor for my diabetes check. I was told "You need to get the colposcopy done".
I said, "What are you talking about"? My pap came back abnormal with positive high risk HPV.
I'm a 48 year old diabetic. I've been married (faithfully) 26 years. I've been with my husband for 27 years and I completely believe he's been faithful. He has been my only partner, he had several before we were married.
I aquired HPV twenty seven years ago. I have my colposcopy in three weeks.
My maternal grandmother had cervical cancer.
My dad died from bladder cancer almost two years ago. One of his sisters from bladder cancer, one from lung cancer, another from breast cancer, and his father from brain cancer.
In the last three days I've bounced back and forth between worried, anxious and calm.
I said, "What are you talking about"? My pap came back abnormal with positive high risk HPV.
I'm a 48 year old diabetic. I've been married (faithfully) 26 years. I've been with my husband for 27 years and I completely believe he's been faithful. He has been my only partner, he had several before we were married.
I aquired HPV twenty seven years ago. I have my colposcopy in three weeks.
My maternal grandmother had cervical cancer.
My dad died from bladder cancer almost two years ago. One of his sisters from bladder cancer, one from lung cancer, another from breast cancer, and his father from brain cancer.
In the last three days I've bounced back and forth between worried, anxious and calm.
Sponsor
Pickle Eyes
06-27-2008, 01:29 PM
((((Kell))))) I don't have long to talk right now, but I want to say my story starts out very similarly to yours. I'll be back in a few hours. If you can, you might read some of my story. Look on this board, going back as far as mid/late April.
I've been with my husband, faithfully on both sides, for 16 years.
(((((hugs))))) I'll be back and tell you some more.
Take some deep breaths. They always help me.
I've been with my husband, faithfully on both sides, for 16 years.
(((((hugs))))) I'll be back and tell you some more.
Take some deep breaths. They always help me.
Kell1960
06-27-2008, 10:31 PM
((Pickle Eyes)) I found your story and it does start out very similarly to mine. I would love to hear the rest of your story.
I've have some very mild itching and mild cramping at times ... for at least the last 6-8 months, maybe longer. I'm been post menopause for two and a half years. Maybe the itching and cramping come from being post menopause?
I've have some very mild itching and mild cramping at times ... for at least the last 6-8 months, maybe longer. I'm been post menopause for two and a half years. Maybe the itching and cramping come from being post menopause?
Pickle Eyes
06-28-2008, 12:02 AM
Hey, Kell! I haven't reached menopause yet, so I'm not sure about the itching and cramping. Have you had the colposcopy yet? If not, schedule it as soon as possible. Also, while you are there, ask them to do an ECC (endocervical curettage). I won't lie. It hurts, but it only lasts a minute or two MAX. That is how my doctor found my AIS. It is better to know than to have it there and find out in 3 years with symptoms!
My byn/oncologist said I was lucky that the gynecologist did the ECC. She said I'd have break through bleeding and bleeding after intercourse in a year and she said I'd probably chalk it up to the beginnings of menopause. She's right. And it would probably be another year before I mentioned it to my doctor. At that point, I'd be looking at more radical treatment than my hysterectomy.
Speaking of which, I don't know how much of the story you read, but I just had my hysterectomy last Wednesday. It is the only treatment I need for adenocarcinoma Ia1. She only took the cervix and uterus. I will not need to have chemo or radiation. I'm just looking at close observation for the next 5 years or so. I feel very lucky the HPV was found and that the AIS was found so early.
Please ask any questions you might have. I'll do my best to answer. I'm sure others will come along, too, and answer the questions as best they can (and to offer support! These ladies are GREAT about that!).
My byn/oncologist said I was lucky that the gynecologist did the ECC. She said I'd have break through bleeding and bleeding after intercourse in a year and she said I'd probably chalk it up to the beginnings of menopause. She's right. And it would probably be another year before I mentioned it to my doctor. At that point, I'd be looking at more radical treatment than my hysterectomy.
Speaking of which, I don't know how much of the story you read, but I just had my hysterectomy last Wednesday. It is the only treatment I need for adenocarcinoma Ia1. She only took the cervix and uterus. I will not need to have chemo or radiation. I'm just looking at close observation for the next 5 years or so. I feel very lucky the HPV was found and that the AIS was found so early.
Please ask any questions you might have. I'll do my best to answer. I'm sure others will come along, too, and answer the questions as best they can (and to offer support! These ladies are GREAT about that!).
Mom22greatkids
06-28-2008, 06:41 PM
Hi Kell, I too have had hpv for years. I had my first abnormal pap about 3.5 yrs. ago. I recently had another hpv test and it was postive still. So that means it hasn't cleared or my immune system cannot suppress it. I have been with my husband for almost 17 years (we have both been faithful, I am sure of that). I have only had that one abnormal, then they have been normal since, without treatment. As I get older I feel more anxiety about it, thinking what is it going to do to me. But I try not to let it overtake my life.
Your doctor waited this long to tell you? I don't think that is acceptable for him to not notify you!
I have been getting lots of cramping too, and some strange things going on with my period. I have attributed it to aging (my doctor has also), it hasn't occurred to me that it is anything hpv related.
Your doctor waited this long to tell you? I don't think that is acceptable for him to not notify you!
I have been getting lots of cramping too, and some strange things going on with my period. I have attributed it to aging (my doctor has also), it hasn't occurred to me that it is anything hpv related.
Kell1960
06-30-2008, 07:24 AM
Pickle Eyes, I have my colposcopy July 14th.
On to some questions. I hope they don't sound stupid.
When did Doctors first start testing for HPV?
Do they just automatically test for it now? Or only if something looks suspicious? Or you have an abnornal pap?
HPV is with you for life, yes? Could I have had it active before, my body clear it, and then have it resurface?
Could HPV have been active and destroying cells without anyone knowing it ... before my abnormal pap came back? I believe you never had an abnormal pap, yes?
On to some questions. I hope they don't sound stupid.
When did Doctors first start testing for HPV?
Do they just automatically test for it now? Or only if something looks suspicious? Or you have an abnornal pap?
HPV is with you for life, yes? Could I have had it active before, my body clear it, and then have it resurface?
Could HPV have been active and destroying cells without anyone knowing it ... before my abnormal pap came back? I believe you never had an abnormal pap, yes?
Pickle Eyes
06-30-2008, 02:17 PM
Kell, those are really good questions . . . let me answer each one.
When did Doctors first start testing for HPV?
I don't think it is a required test. My doctor started OFFERING the HPV in the fall of 2007, only a few months before I went to her for my Pap. It is done at the same time the doctor does your pap. He/she takes one more swab-stick and puts that sample into a different case/cassette/thingy than the Pap gets put into.
Do they just automatically test for it now? Or only if something looks suspicious? Or you have an abnornal pap?
My doctor started offering them to women over 30. She offered it to be as a first step to start putting me on every-other-year or so appointments. Thank GOD she checked it!
HPV is with you for life, yes? Could I have had it active before, my body clear it, and then have it resurface?
Yes, once you have HPV it is always with you. I don't know about it reactivating. I would think so, like in times of undue stress. I'm not positive, though.
Could HPV have been active and destroying cells without anyone knowing it ... before my abnormal pap came back? I believe you never had an abnormal pap, yes?
Yes, HPV can be active and be wrecking havoc without anyone knowing. And you are correct, I've never had a bad pap since I was 19 (first pap) (and I'll be 45 next month). I've had a few yeast infections (and maybe a few gifts (like chlymidia (sp)) from a cheating ex-husband). I was exposed to HPV at LEAST 16 years ago when my current hubby and I got together (I have been faithful and I believe he has, too). Since my cancer (and before that atypical cells) were in the endocervical canal - - - waaaaay up in the cervical canal, no one could see them and the cells weren't accessible from Paps.
When did Doctors first start testing for HPV?
I don't think it is a required test. My doctor started OFFERING the HPV in the fall of 2007, only a few months before I went to her for my Pap. It is done at the same time the doctor does your pap. He/she takes one more swab-stick and puts that sample into a different case/cassette/thingy than the Pap gets put into.
Do they just automatically test for it now? Or only if something looks suspicious? Or you have an abnornal pap?
My doctor started offering them to women over 30. She offered it to be as a first step to start putting me on every-other-year or so appointments. Thank GOD she checked it!
HPV is with you for life, yes? Could I have had it active before, my body clear it, and then have it resurface?
Yes, once you have HPV it is always with you. I don't know about it reactivating. I would think so, like in times of undue stress. I'm not positive, though.
Could HPV have been active and destroying cells without anyone knowing it ... before my abnormal pap came back? I believe you never had an abnormal pap, yes?
Yes, HPV can be active and be wrecking havoc without anyone knowing. And you are correct, I've never had a bad pap since I was 19 (first pap) (and I'll be 45 next month). I've had a few yeast infections (and maybe a few gifts (like chlymidia (sp)) from a cheating ex-husband). I was exposed to HPV at LEAST 16 years ago when my current hubby and I got together (I have been faithful and I believe he has, too). Since my cancer (and before that atypical cells) were in the endocervical canal - - - waaaaay up in the cervical canal, no one could see them and the cells weren't accessible from Paps.
brieaukirsch
06-30-2008, 07:30 PM
Kell, whether clearance means it's GONE-gone or it's simply dormant (latent) is a subject of debate amongst HPV researchers. Personally I think the HPV can indeed reactivate in times of lower immunity (it's not that the body can't recognize it, so much as the body has other things it started tending to. It can't do everything). All the anecdotal evidence I've read and seen suggest reactivation is possible.
The Digene HC II ("HPV test") has been FDA-approved since 2000, but I think it wasn't more widely offered until maybe 2005/6 or so. My college gyn clinic did not offer it in the early 2000s and I tend to think if any clinic would offer it, they would. My gyn only started using it in 2007 as "reflex testing" meaning if your pap was anything but normal he would run it, but if it was normal he would not run it.
Pickle Eyes, how are you feeling? Kudos to your doctor for being extra careful with you. I am amazed that in offering you the HPV test she discovered the adenocarcinoma in the canal. I know none of my gyns would have been so careful and I believe most others wouldn't bother doing an ECC either. I hope you're doing all right.
The Digene HC II ("HPV test") has been FDA-approved since 2000, but I think it wasn't more widely offered until maybe 2005/6 or so. My college gyn clinic did not offer it in the early 2000s and I tend to think if any clinic would offer it, they would. My gyn only started using it in 2007 as "reflex testing" meaning if your pap was anything but normal he would run it, but if it was normal he would not run it.
Pickle Eyes, how are you feeling? Kudos to your doctor for being extra careful with you. I am amazed that in offering you the HPV test she discovered the adenocarcinoma in the canal. I know none of my gyns would have been so careful and I believe most others wouldn't bother doing an ECC either. I hope you're doing all right.
Pickle Eyes
06-30-2008, 07:33 PM
Kell, I agree with what Brieaukirsch says about the reactivation.
Thank you, Brieaukirsch.
My regular doctor (general practicioner) did the HPV when I had my pap. She sent me to a gynecologist who did the colposcopy and ECC. The ECC found the adenocarcinoma in situ.
I feel fortunate that both doctors did one more test.
And I'm doing pretty well. I'm starting to go bonkers staying at home, but I know even when I start driving that I'll get tired and have to come home and rest. I'm glad it is summer vacation, so I don't have to worry about my job! Whew!
Anyway, thanks for checking with me. Take care!
Thank you, Brieaukirsch.
My regular doctor (general practicioner) did the HPV when I had my pap. She sent me to a gynecologist who did the colposcopy and ECC. The ECC found the adenocarcinoma in situ.
I feel fortunate that both doctors did one more test.
And I'm doing pretty well. I'm starting to go bonkers staying at home, but I know even when I start driving that I'll get tired and have to come home and rest. I'm glad it is summer vacation, so I don't have to worry about my job! Whew!
Anyway, thanks for checking with me. Take care!
Kell1960
06-30-2008, 11:03 PM
Thanks ladies. What I'm trying to wrap my mind around is I've had this for 27 years. I'm a diabetic so my immune system is compromised anyway. This could possibly have been doing damage that a pap test has not picked up on. It's my understanding (and I may be mistaken) that a pap only scrapes a small number of cells and could completely miss any abnormal cells. And of course cells that are way up in the cervical canal as in the case of Pickle Eyes.
By the time I have my colposcopy it will have been 7 months since I had the abnormal pap and active HPV. I'm wondering how much damage has been done in that 7 months.
I guess what bothers me the most is the 7 lost months. If the colposcopy does indeed show something, there will have been 7 wasted months, enough time for HPV to have done even more damage than what my original pap showed.
So yeah, I guess I'm a bit nervous about what the colposcopy will show. I also realize it may show nothing at all, and my abnormal cells may be back to normal again. It's all the waiting and wondering!
By the time I have my colposcopy it will have been 7 months since I had the abnormal pap and active HPV. I'm wondering how much damage has been done in that 7 months.
I guess what bothers me the most is the 7 lost months. If the colposcopy does indeed show something, there will have been 7 wasted months, enough time for HPV to have done even more damage than what my original pap showed.
So yeah, I guess I'm a bit nervous about what the colposcopy will show. I also realize it may show nothing at all, and my abnormal cells may be back to normal again. It's all the waiting and wondering!
Pickle Eyes
06-30-2008, 11:15 PM
(((Kell))) Yes, the waiting, wondering, and mind games we play with ourselves are tough. I don't have any solution for that, except to be as knowledgeable as possible.
Generally, cervical cancer is slow growing. Squamous cell cancer grows more slowly than epithelial cell cancer, but I think they are still relatively slow in growing. Just to make sure, you could call your doctor's office and ask about your concerns with the time line.
I played some games with my mind in the last 2 months. I was diagnosed April 11th (actually went to Dr for diagnosis on the 18th), but didn't schedule my hysterectomy for 2 more months. I wondered how much damage I was allowing my body to do. I don't know the answer to whether the extra month gave the virus more time to do distruction. I *DO* know that when the doctor did the biopsy the day before they hysterectomy, that that is the last place pathology says there was any cancer. I don't know if it was a new cell or one they didn't get last time. I *do* know it is gone.
I don't have a lot to offer you, Kell, except some ((((((((Hugs)))))))), recommendations for deep breathing (it helps me), and posting here. Learn what you can, but don't read horror stories. Avoid those. And then reach out to those who follow behind you. You have a lot to offer.
Hugs and prayers for you, my friend. I wish you peace, understanding, and health!
Generally, cervical cancer is slow growing. Squamous cell cancer grows more slowly than epithelial cell cancer, but I think they are still relatively slow in growing. Just to make sure, you could call your doctor's office and ask about your concerns with the time line.
I played some games with my mind in the last 2 months. I was diagnosed April 11th (actually went to Dr for diagnosis on the 18th), but didn't schedule my hysterectomy for 2 more months. I wondered how much damage I was allowing my body to do. I don't know the answer to whether the extra month gave the virus more time to do distruction. I *DO* know that when the doctor did the biopsy the day before they hysterectomy, that that is the last place pathology says there was any cancer. I don't know if it was a new cell or one they didn't get last time. I *do* know it is gone.
I don't have a lot to offer you, Kell, except some ((((((((Hugs)))))))), recommendations for deep breathing (it helps me), and posting here. Learn what you can, but don't read horror stories. Avoid those. And then reach out to those who follow behind you. You have a lot to offer.
Hugs and prayers for you, my friend. I wish you peace, understanding, and health!
Kell1960
07-14-2008, 03:16 PM
OK, I'm off in fifteen minutes to get my Colposcopy done. Wish me luck.
Kell1960
07-14-2008, 05:44 PM
Well, back from my Colposcopy. It didn't really hurt much at all. Just a couple of pinches. He did do a biopsy. Said there were bad/white cells all around the edges of my Cervix. Will take a week to get results. So I guess I wait for more answers.
I was hoping the cells had reversed themselves by now.
I was hoping the cells had reversed themselves by now.
Pickle Eyes
07-14-2008, 09:49 PM
Thanks for checking back in, Kelli! I hope your pathology report comes back favorable. Did your doctor say how many pinches he took? Did he do an ECC (endocervical curettage)?
Kell1960
07-14-2008, 10:13 PM
He didn't do an ECC. I felt 3 pinches. He also told me he couldn't biopsy the abnormal cells around the edges of my cervix. Does anyone know why he couldn't biopsy those? I didn't think to ask until after I'd left the office. I've been having some mega cramping for the last hal hour.
Pickle Eyes
07-16-2008, 10:26 PM
What are you going to do? Call the doc back and ask him/her to do the test again?
Kell1960
07-16-2008, 10:49 PM
My Dr. office is a group of family practice doctors who each have an added specialty. One is an Osteopath, one does something else etc... My personal Dr. doesn't do colposcopies, one of his partners does. So, what I'm going to do is get a refferal to a gyno. I should have done that in the first place.
Pickle Eyes
07-16-2008, 11:35 PM
Good luck and let us know how things go!
Kell1960
07-17-2008, 09:17 PM
I got my pathology report today. My doctor did do an ECC and another pap. What happened was he sent over the tube filled with formaldehyde and NO tissue sample. That's why I was told there wasn't enough tissue to do the workup. They were talking about the ECC.
There were enough cells to read the pap. It said I have HGSIL. In six months I went from ASCUS to HGSIL. I'm a bit worried.
There were enough cells to read the pap. It said I have HGSIL. In six months I went from ASCUS to HGSIL. I'm a bit worried.
Pickle Eyes
07-17-2008, 09:52 PM
Is your doc going to do another ECC? I think he should.
Kell1960
07-17-2008, 10:35 PM
I'm going to be calling him in the morning insisting on another ECC and/or to be sent to a GYN.