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Need your feedback and hope I got the right forum. Need your feedback and hope I got the right forum.

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  #1  
Unread 03-12-2002, 09:26 PM
Need your feedback

Okay, here goes my story and a couple of questions for ya'll. Sorry I'm so long winded.

Had my annual (and I do go annually!) pap on Jan 24. Got a call that it was abnormal so went in for a biopsy on Mar 7. Found out it was carcinoma insitu on Feb 14. Didn't know until Feb 18, though, that it was NOT invasive, PRAISE THE LORD!!! Had a laser conization on Feb 21. Got the path report on Mar 1. The cells were all the way to the inside edge of one section of the piece my doc removed. He said that he always lasers more cells just in case it did go to the inside edge. He could not guarantee me that he got it all and I would have to wait until the 3 mo checkup AFTER the 6 wk checkup, which put that 4 more mos down the road. Because I do not want to wait that long, I have decided to go ahead with the hysterectomy and it is tentatively scheduled for Apr 11. It all depends on how well I have healed up from the conization procedure when I go for my 6 wk checkup on Apr 4. First question is, am I overreacting in ya'lls opinion? Would any of you wait the 4 mos?

After my 2 wk checkup last Thur, I fretted all night and had a real hard time getting to sleep. Finally had to say, "Okay Lord, you gotta take this cause I can't handle it. Am I jumping the gun by having the hyst and doing what I want to do or should I go through with it? Just show me what Your Will is for me in this." And I was out like a light. My hubby woke me up Fri morning and I went off at him because I'd had such a hard time getting to sleep. He asked what was on my mind that kept me up and I told him, "that maybe I wasn't giving the laser procedure a fair chance." He sat down bedside me on the bed and looked me in the eyes and said, "This is cancer we're fighting here...there is no fairness." It was kind of an eye opener and I felt better immediately. As I was headed down the road later that morning I got to thinking maybe that was God giving me my answer. Then there was a message from my docs office that afternoon telling me that the procedure had already been authorized by my insurance and that's when I thought, "Wow, if that's not a Divine answer, than I don't know what is!" It had been less than 24 hours to get the approval. Now I'm thinking that if this procedure is not to be, then something will stop it. Until then, I'm taking one day at a time.

Now comes the next question. Don't know if my doc (and I gotta tell you gals that I think I have the best gynecologist in San Antonio!!!) will take the ovaries and tubes yet. He said that it all depends on how they look when he gets in there. Plans on doing a vaginal hyst. (Sorry I haven't got all the acronyms down pat yet for all the surgeries!) He put me back on the pill 2 yrs ago (I had my tubes tied 15 yrs ago) to regulate my cycle and it seemed to help the hot flashes I'd been experiencing at the time (I was 41 then). Also took some blood to see if I was perimenopausal but the report didn't show that I was then. Recently I'd been experiencing night sweats so he put me on an OTC herbal supplement, Remifemin, that seems to have helped some. I would just as soon he take it all out as I am finding out that ovarian cancer isn't usually found until it's advanced since there are no tests for it. What say ye all?

I've been reading all the info and stories on this site and it has helped tremendously. I've ordered the book "Through the land....." and it should arrive by Friday. I'm also going to call tomorrow and find out where I need to go to get a copy of my OP Surgery Report. I didn't know I could request one for myself.

I, too, am concerned about reoccurence of cancer because of the HPV. I have found a website that has some good info on it and it kinda answered some of my questions. But I'm trying not to worry about that just yet. I'll bug ya'll later with those questions! One day at a time for now.

May God Bless each of you and give you peace and strength through your hard times. Thanks in advance for your support and any replies! [email protected]
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  #2  
Unread 03-12-2002, 10:15 PM
Need your feedback and hope I got the right forum.

I can see why your mind is whirling. You have been hit with a lot all at one time. I am so sorry that this has happened to you and will say a prayer that you make the right decisions and will have peace over it, and also will be well soon

I personally would take the first surgery date, for as your husband stated, it is cancer that you are dealing with. Deal with it and move on. You are on the right path as you are giving it to God each time you feel overwhelmed, and you are seeking His direction. It's funny how the Lord will use our husbands to give us a validation of what we need. It's nice to have a partner like that.

Sounds like you have a good doctor, a good husband, and thank God this disease was caught on time. Maybe you need to grieve that you got the disease and that you need a hyst? I think we all go through a grieving process with needing a hyst.

I don't think you are jumping the gun with having the surgery. If the doctor said he's not sure that he got it all, and he thinks that it's necessary to have the surgery, then you aren't jumping the gun. Take good care of yourself, and this is a good place to get all your feelings out, get support and learn lots to educate yourself on what to expect. I think you can expect to have this surgery, heal, and go back to enjoying your life once again. Best wishes and God bless
  #3  
Unread 03-14-2002, 03:27 PM
Need your feedback and hope I got the right forum.

Hi Sonja, I did email you but not sure if you received it .

First of all, welcome to this forum - CANCER CONCERNS it really is the best place to be when you have any worries at all about cancer.

I know you have read my story , so I will try not to repeat it , so on to your questions ....

Like I said in my email, if I had my time over and knew what I know now, I would not have waited the 4 mths to have my op. I would have had it as soon as I could but we are all experts in hindsight . CIN3 is the stage before cancer and almost always progresses to cancer if left untreated, usually a hysterectomy is all that is needed to remove the cells. So yours is still PRE CANCEROUS.

Alot of women here who have had any type of cancerous condition on the cervix have HPV as well . There is a thread somewhere , where we all discussed it and I will try and find it for you.
It is so important to be very well informed before making any decisions about your surgery. Read lots and ask as many questions as you need to.
As for the ovaries ... my oncologist assures me that ovarian and cervical cancer are not related and I would definately keep the ovaries if they are healthy. Too many problems with HRT when they are taken

Once again , welcome and please never hesitate to ask ANY questions here, we are all here for you. Much love always xx
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  #4  
Unread 03-14-2002, 04:33 PM
Need your feedback and hope I got the right forum.

Hi Robyn,

I did get your email last night and was very appreciative of all you said. It did help me tremendously in my fear that if I waited the four months that it might turn invasive, so I'm glad I asked for the hysterectomy. One thing I asked my doc right before the OP Surgery for the conization was, "do I have cancer or do I not have cancer? How would I answer that question if I am ever asked on some type of an insurance form?" His reply was that I would have to say yes because if anyone ever got a hold of my pathology report, it stated malignant cancer cells present.

So how would you interpret his reply? I do know that the OP Surgery form I signed said cervical dysplasia, but he said the path report read carcinoma insitu, but that it was not invasive yet. It only involved the squamous surface cells. Does this make any difference?

Now I'm really confused. How could I find out for absolute sure?
  #5  
Unread 03-14-2002, 05:43 PM
Need your feedback and hope I got the right forum.

Me again. I just did some searching and found the following at http://www.womenscancercenter.com/in...es/cervix.html and it describes exactly what he told us in his office on Feb 18:

"...pre-invasive cancer-known as squamous intraepithelial lesions-where the cancer cells are confined to the surface skin of the cervix."

So I guess that answers my question. Do you all agree? Please let me know.....I don't mean to be beating this poor horse into the ground!!!

Robyn...If you do find the HPV thread, let me know as I am wanting to know everything I can about this.

Thanks for your patience!
  #6  
Unread 03-14-2002, 08:27 PM
Need your feedback and hope I got the right forum.

Hi Sonja,

When I saw my dr a week after my surgery he told me that the path report showed a high-grade lesion high in the cervix. He made a point to say it was a pre-cancer, but most likely would have progressed to cancer. My guy was an oncologist.

A few weeks later I got a copy of the path report and saw CIS for the first time. I kind of freaked and came right to the web. It was all pretty confusing, as in some cases CIS was labeled a pre-cancer and in others it was labeled a Stage 0 cancer. I found a couple of websites which let me "ask the dr" and both of those came back as a pre-cancer. All of the sources I researched had the treatments the same for both. From cones/leeps to a hysterectomy. None of them indicated the possible need for further treatment as were mentioned in the case of invasive cancers. It's been over a year since my hyst and I can now say that I finally got over being hung up on the "whether is was or whether it wasn't". It's gone. I do still get nervous before my pap smears, but a little bit less stress each time.

I won't tell you not to worry. I'll just hope that you don't get too hung up on the definition of CIS. After the hyst it will be GONE.
  #7  
Unread 03-14-2002, 10:11 PM
Need your feedback and hope I got the right forum.

Thanks, Robyn and Em, for your help. Now that I have a good feeling (I know I won't be saying that a month from now!) about having the hyst, I feel like I've gotten over one of the hurtles. And I will quit worrying about "is it or isn't it!"
  #8  
Unread 03-14-2002, 10:24 PM
Need your feedback and hope I got the right forum.

Hi Sonja, sorry , I still havent found that HPV post :hair: some problems with the hyster site , so I will keep searching.

My oncologist has put out a little publication and this is what it says about CIN3:

  Quote:
this is a major pre-cancerous abnormality that involves two thirds or greater of the epithelium. It will progress to cancer of the cervix unless treated. CIN3 is sometimes referred to as carcinoma -in - situ (CIS) depending on the severity of the changes visible on microscopic examination
phew that is technical

I know you are worried , perfectly normal . but remember that a hysterectomy is all that is needed in the majority of cases.what happened to me is very rare

You try to relax and I will keep searching love and hugs coming your way xxxx
  #9  
Unread 03-15-2002, 02:08 AM
Need your feedback and hope I got the right forum.

well sonja, it has taken me awhile to be able to access this info and I sure hope it works. So here are a couple of threads to check out.

https://www.hystersisters.com/vb2/sho...threadid=25350

https://www.hystersisters.com/vb2/sho...threadid=40751

https://www.hystersisters.com/vb2/sho...threadid=31248
  #10  
Unread 03-15-2002, 03:36 PM
Need your feedback and hope I got the right forum.

Hi, Sonja!

I just wanted to add my along with the others. It sounds as if you're feeling you've made the right decision, so go with that. It's a very scary thing to go through, and surgery is nothing to jump into, but as you said--your doctor couldn't guarantee that he got all the cells, and that's kind of unnerving as well. I had normal PAPs every 3 months for almost 2 years, then when I went for my next 3 month PAP it read as carcinoma-in-situ. So, I always wondered, did it grow that fast, or were the cells there and just not caught until that particular time? Either way, I think I made the right choice for me (having the TAH) and I'm happy it's done. I still go every 3 months for my check-ups and so far all is well. I kept my ovaries so there was no HRT to go through for me and I pretty much feel like I always did (but I'm probably more health-conscious).

As far as the cancer thing and insurance, my doctor said it was precancerous (for me), not cancer. If you've filled out any insurance forms recently, you'll notice that they want to know everything you've had for the past 5-10 years. So even if you answered "no" to a cancer question, the information would still show up someplace else when you listed your LEEP and biopsy stuff. Then they can decide for themselves if they want to call that cancer or not.

Good luck as you are preparing for your surgery. We'll be here if you need us!

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