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No cancer diagnosis yet, but.... No cancer diagnosis yet, but....

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Unread 02-13-2008, 06:41 AM
No cancer diagnosis yet, but....

Good Morning Sisters!
I have been reading steadily after discovering this site yesterday. This is my first post.
Doc's office called to say my latest pap shows LGSIL again.
My history:
I am 54 y/o, post menopausal. DES exposed. My cervix is structured oddly, but I didn't have problems getting pregnant or delivering 2 kiddos 23+ years ago. Normal paps til my mid 40's then began with abnormals. I have had so many colpos & biopsies I'm amazed there's any cervix left to biopsy!
2 or 3 years ago had cryo for persistent LGSIL with CIN1 on biopsy. Pap remained lgsil. Aug 2006 had a LEEP (with only partial numbing of my cervix, makes tears come to my eyes remembering how much it hurt). Paps were lgsil, lgsil, lgsil and then 8/07 ASCUS. Both my doc & I were excited by the nearness of a normal pap! He did an HPV test on that pap & sure enough I have the naughty kind of HPV.
Pap on 2/5/08 shows the lgsil again. I'm awaiting my doc's call with what next.
I wanted to share to learn if anyone else has had similar progression & long term abnormalities, and find out what happened with you.
If you like irony, you'll love this: on Tues 2/19 I begin my new job (I play nurse, RN) in the gyn/onc clinic at the cancer hospital in my town. **Sigh** - I may get referred to my brand new work partners just days after I start working with them. Awkward...... So I hope you can understand that I'm a little reluctant to do the obvious - consult a gyn oncologist.
Thanks in advance for any stories you can share with me. I'm happy to find ya'll in my search for more knowledge and support.
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Unread 02-13-2008, 02:51 PM
No cancer diagnosis yet, but....

s Gathering!


I get the irony of your situation! I am all about timing and things happening for a reason......I think it's providential that you have found yourself in the job you are you starting. I could talk for days about Karma but I think you probably get the drift already

I can't comment on any of your cervical history and the abnormalities that you have dealt with. I do know that we have several gals on this forum that have much experience in that department (more than they ever wanted to know, I'm sure!) and I am hoping one of them will be along shortly to help you out.

I just wanted to stop by and send you a cyber
You are going to be GREAT at your new job.

Unread 02-14-2008, 06:44 PM
No cancer diagnosis yet, but....

Thanks K9!
Talked with my doc today. Have colpo # 4,000,000 on 2/28. If colpo biopsy matches pap, we will probably continue with the every 6 month paps. If biopsy does not match, he said "I want to do an agressive cold knife cone biopsy to get it all out of there". He remembers that I really don't want a hysterectomy unless absolutely necessary. I've known him since he was a resident in OB/GYN and I worked on labor & delivery with him; I trust him. I have the luxury of an automatic second opinion from my sis who is also an OB/GYN across the country from us.
Curious is anyone has had a cone & what's afterwards like/ Will I be able to go back to work in a day or so? Is there much bleeding or spotting? How long until I can play with my DH again?
PS Happy Valentines Day!
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Unread 02-14-2008, 08:47 PM
No cancer diagnosis yet, but....

Hi again,

Wondering if you found out options and alternative forum yet?
Since you are researching your options and hoping to NOT have a hysterectomy, it might be a good place for you to visit as well.


Unread 02-16-2008, 02:13 PM
No cancer diagnosis yet, but....


I hadn't had any abonormal paps. In 2002 my GYN in Germany discovered a fibroid, when we underwent infertility counseling. We decided to go it alone. But I made the mistake these last 3 yrs of not pursuing a Pap with my Army PCM in South Carolina. I kept getting put off. So this past Sept, after moving back to Texas, I pursued it since I was 36. Had my 1st abnormal pap in 18yrs and my new civilian PCM took me off my thyroid meds without blood testing because he said it was hereditary. ODD!! Anyway, I was referred to a Great GYN, who told me I had HPV and said I was HGSIL with atleast CIN2 or 3. I was in such shock, I actually asked her when will she know if I have HPV. She replied "oh you've got it, we just need to determine if its precancer or worse" And to think I told my hubby he didn't need to go with me, because it was just a routine pap. She did a cone biopsy, no biggie, sprayed a vinegar solution to light up the affected cervical cells and a lil pinch or two (removal of cell samples) and I was done. Vague spotting, but otherwise eventless. Afterwards, i had a melt down in the car - Alone. I wondered how I got HPV, from who, how long I'd had it and did I have cancer? I'd been married for almost 9 yrs. I called my hubby and my mom, and cried my eyes out. My hubby felt soo bad for not going with me, he later told me that he couldn't look at me without hating himself. I went home and researched as much as I could. My hubby heard cancer and went into melt down and knew I was near death. I had to convince him everyday, that I felt GREAT, had no symptoms and early detection does not mean death. And I told him Cancer was not gonna live long in this Ornery Red-headed Texan. My daddy even had trouble accepting the facts. Thank goodness for my sister working for a doc in Houston, she took home pamphlets for proof that this cancer caught early can be stopped. My research stated that a strong immune system can fight off strains of HPV that cause cervical cancer. And a week immune system can aid those strains of HPV to cause cancer. My immune system has been without its thyroid meds for 3+ mos. I was beginning to wonder and search for answers. I even called the hospital of the Army post we were once at, to urge the Patient Care liason to insist all new incomming female personnel (soldier or spouse) to get Pap smears & HPV tested to avoid getting Cervical Cancer. She kept telling me you must get Pap every yr, i told her I knew that but my PCM kept putting me off, saying I just had one in Germany 1 yr ago, then the next time it was 2 yrs ago, etc, I jsut didn't want anyone else to go through what I am.

11/12 -2wks later with hubby in tow, Dr informs me that I have CIN3 (Carcinoma-in-situ) and I'm right on the line of Cancer. She scheduled a LEEP procedure in 2wks (Monday after Thanksgiving), which would hopefully get ALL the cancerous cells, literally in one or two scoops. You can imagine what we gave thanks for that nite. Everyone acted like I was sick, I'd never seen a healthier person in my life. 11/26/07-Went in for the LEEP and WOW, that was super highly uncomfortable. I had a patch stuck to my thigh that grounded me electrically, since the LEEP uses an electrically charged wire loop, to scoop out the affected area. Never felt that kind of "sorta" pain. hurt a lil, but was super pressure against my cervix, almost an instant of white hot instant pain.
Warning TMI- She had trouble stopping the bleeding, so I'm sure it was worse because they cauterize to stop the bleeding. And I bled alot. The nurse left me and when I got up to change, the drawer that comes out under your rump for the gauze and med waste had fresh blood along the side and their were drips on the floor below me. I'd never seen so much of my own blood, not on a pad before. It was creepy. But I padded up and hubby drove me home. He thought I'd be sidated (sp??) but i wasn't. Ibuprofen helped with the aching, but nothing helped with the waiting.

Results 2wks later, would tell us if the LEEP got it all, I was good for next 6mos. If the margins (sides) of the tissue removed were slightly affected by cancer-it indicated non-invasive stage 0 cancer, she'd recommend a hysterectomy, no therapy needed. If the margins were highly effected with cancer, she'd refer me to a GYN-Oncologist.

12/12- 2wks later, i get a phone call, canceling my appointment with the Dr, she had gone into labor. I demanded to talk to the nurse, since I was getting the results of my LEEP and I needed to know if I had cancer or not. Nurse didn't know, but would consult with another dr ASAP and call me before noon, it was 8:30. she called within 20minutes to inform me that it was NOT invasive - but the cervix was completely consumed with cancer and a hysterectomy could be scheduled right now. Well, i still wanted to talk to the dr about the results, which probably wasn't necessary, but I wanted questions answered.

Outcome was a Laproscopically Assisted Vaginal Hysterectomy, which meant 1 1/2 days in hospital, 7 days home recovery and I see her for follow up this next Thursday. I will go back to work Monday. I am feeling great, few lil pinches in lower ab area, but hubby has been home to take good care of me. No heavy lifting for a few more weeks. And I can say I am Cancer-free but will be monitored now every 2-3 mos due to the uncurable HPV that exists inside me. That I can't get rid of. And hopefully I have scared it into submission, because my new PCM will be testing my immune system and getting me well equiped. I can't have this happen again after my hubby deploys for a 15 month tour in Afghanistan this summer. He'll be useless to the Army if i'm home sick with Cancer again.

Keep the faith and my thoughts are with you.
Unread 02-16-2008, 02:47 PM
No cancer diagnosis yet, but....

It sounds like you've been on a long road. It's frustrating to have one abnormal PAP after another!

The tendency at this point in time is to just keep monitoring LGSIL or CIN 1. In most cases, it eventually resolves itself. Interesting that you've had it this long, though. However, in my way of thinking, your immune system must be doing some good work to keep it at such a low level. More of your cells are normal than abnormal.

Have you tried racheting up your healthy living plan? You know, more veggies, possibly a supplement, add some yoga or meditation to try to give your immune system just a tiny bit more of a boost?

I can understand your reluctance to see a gyn/onc if that's the office you're going to work in. That would seem somewhat awkward. But I would think that at CIN 1, you're not in any imminent danger of a cancer situation. Discuss this with your gyn. Perhaps there's a gyn/onc out-of-town that you could visit for a consult?

Good luck! I hope you're able to find a way to beat this once and for all!


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