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CIN III Doctor Recommends Hysterectomy CIN III Doctor Recommends Hysterectomy

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  #11  
Unread 11-05-2002, 06:41 AM
CIN/CIS3

Hi Carmanni,

I am going through the same thing as well. I had my first ever abnormal pap early August. By the end of August I had a colposcopy and two biopies (cervix and endometrium). The cervix bioposy showed severe dysplasia so I had a LEEP late September. My doctor is also recommending a hysterectomy out of concern that I never had any problems and now I have Severe Dysplasia -- she feels it might be aggressive. If it is linked to HPV it could be brought on by stress -- the past year and half has been extremely stressful so I believe this to be true.

I am 39 with no plans for more children, however, I still feel it is very important to know whether such surgery is necessary. Besides this wonderful site, I did a lot of research. I could not find alot of cases where hysterectomy was done for CIS. I got a second opinion which thought that I should wait for another colpocopy at the 3 month mark and see what was the case then. My doctor disagrees. I did see a gynocolgic oncologist on Friday and he was extremeley helpful. He also does not recommend hysterectomies for a first time abnormal pap at my age, but typically recommends to monitor the situtation. If you continue having problems he might then suggest a simple hysterectomy.

That being said, there are a few things for me to consider. It is severe dysplasia, chances are because of the endocervical involvment (which I have) it will return, my margins are positive, and he is waiting to see if I had an ECC which was not on my pathology report. He said if the ECC is positive he would NOT recommend a simple hysterectomy because there is something else going on that needs to be addressed. I am waiting to hear from my gyn whether the test was done or not. If not, I am waiting until my 3 month (December) to get it all done again, with the ECC. Then I'll determine whether I want the hysterectomy.

It really appears to be a personal choice as to whether you want to take the chance of having continued biopsies, cones, leeps or get it over with the hysterectomy. (Of course always going back for paps).

It is confusing!!!!!!! No doubt. I did a lot of reading and if you want I will forward a couple of websites that I found had good clear information.

Good luck! It is a difficult time and overwhelming but after getting more and more information and speaking with more women and doctors I feel much less stressed than I did two months ago!!!!
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  #12  
Unread 11-05-2002, 08:26 AM
CIN III Doctor Recommends Hysterectomy

Hello everyone,
Well from all that I have been reading, I certainly don't feel alone, but I am sorry that so many wonderful ladies have to experience such frustrating medical problems. I too am starting to feel more confident with going for the hysterectomy, since in my case the dysplasia involves the endocervical gland, which occurs in only 10 to 15% of cervical cancers.

As far as stress, this last year topped the scales with stress for me. My Mom was diagnosed with colon cancer last October and passed away in June. I also foolishly went back to smoking during that time as a crutch (I have since then quit again).

Anyway, I have made some calls and gotten recommendations to gynecologist/oncologists who also fortunately except my insurance, but insurance company still has to approve first. I still go for appt to Primary Dr. on Thursday for official referral. I was told by oncologist office that appointment will be made based on urgency of my particular case,which is understandable, but I am hoping I will not have to deal with a lot of red tape.

Hugs and prayers to all of you
  #13  
Unread 11-08-2002, 06:27 AM
CIN III Doctor Recommends Hysterectomy

Hello again everyone
Visit went well with Primary Doctor. She has agreed that she thinks I should go for the hysterectomy. Once again because it is a second time around with dysplasia, it is CIN III and because of it being in the gland. She spent an hour and a half with me....think she was trying to make up for OBGYN rushing through diagnosis. Anyway, she has offered to refer me to a different GYN as well as OBGYN Oncologist and she is scheduling me for a pelvic ultrasound. At least she did not make me feel crazy for saying I was feeling all sort of abdominal pain. She also said that the soreness I was feeling was due to the Bartholins gland (gland on outside of vagina) being swollen and that the burning area was probably due to irritation from clips that they use during LEEP procedure. She seemed annoyed that OBGYN failed to mention that to me when I asked her about those problems and soreness last week. I am feeling more confident with having to go for hysterectomy but now they really have me wondering what is going on inside. I will feel better once I know what I am truly dealing with. (I Think??)
Sorry for rambling on here. I hope everyone else is doing well with their recoveries. Lynne, how did your Thursday visit go?
Hugs and Prayers to all.
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  #14  
Unread 11-08-2002, 07:43 AM
CIN III Doctor Recommends Hysterectomy

Hi Carmanni!

Thanks for the update. I think you're right that you'll feel better once you know more..... the fear of the unknown is the worst!

I'll continue to hold you in my prayers!

  #15  
Unread 11-09-2002, 11:43 AM
CIN III Doctor Recommends Hysterectomy

Hi Carmanni!!

How sweet of you to remember me and my appointment!! It went well, and I'm scheduled for my hyster on Jan. 6. He said that it is CIN III, but no cancer. I asked if I had endocervical glandular involvement and he said yes. But my understanding was that they were just different types of cells in the cervix, not an actual gland. What type of gland concern are you having? Is it an actual gland or just cells? Im getting a little confused!

After all my talk about seeing a gyn oncologist, Im not going after all. I feel like a hypocrite. My gyn (whom I really trust) totally offered for me to go, but I said it seems like my case is pretty straight forward, and that the specialist would probably just say the same thing. My gyn said yes, that is true. So to avoid all the mess I have to go through to schedule something, I just figured it would be okay not to go. I hope that is the right thing to do. I feel like it is. What do you think?

I hope your ultrasound results are okay. I wonder what would be causing your pelvic pain? Hopefully you will know soon, and it will be something simple! Talk to you later!

  #16  
Unread 11-11-2002, 03:42 PM
CIN III

Hello. I thought I would share this with you. I got the pathology report today at my post-op checkup. Turns out there were still/more glandular cells with dysplasia in my cervix, but this time there was no CIS reading. Either the conization didn't get them all or they grew back between 6/28/02 and 10/23/02. At any rate, my (dear-departed) uterus was ok and the abnormal cells haven't spread. The verdict is that I have to return in a year for a pap to cover the <1% chance that these cells might be back.

I am OK! No cancer! And I could be the poster child for why you should get regular pap smears. I am sooo happy. This means (to me) that I definitely made the right decision about having the hysterectomy even though there wasn't a lot of clear info. available for my situation. I hope all works out well for you too!

MW
  #17  
Unread 11-11-2002, 06:25 PM
CIN III Doctor Recommends Hysterectomy

Hi MW!!

GREAT news!! I know what you mean about being the poster child for paps. Im in the same boat...I went from an abnormal pap in March to a CIN III diagnosis and cone in Sept. It just kept getting worse with each test result. Thats what makes me a little nervous about my path report post TVH. I will be just a little over the 3 month mark since my cone. I see you were almost 4 months past. Hopefully mine will still be okay. I'm so glad yours was!!

I have no doubt about getting the hyster, it just bothers me emotionally. I never thought it would affect me like it has. I think our feelings with CIN III are so different than the ladies who have endo, fibroids, pain, bleeding. They seem so happy and excited to have the surgery....I can understand why. But I feel fine, and wish I could hang onto my uterus for awhile longer. I never imagined having this done at all, let alone at 34.

But, as the time passes, I have been accepting my impending surgery. I know it is the best thing for my health. I know you understand what I mean. So, you seem well for approx 6 weeks, yes? I hope so!! Im so very happy for you!!!!! What wonderful news!!!

  #18  
Unread 11-12-2002, 10:47 AM
CIN III Doctor Recommends Hysterectomy

Hello everyone
MJW, so happy to hear your good news

I am scheduled for a pelvic ultrasound for tomorrow. I have spoken with the head of the Onocology Department of our local hospital and he said he would recommend me to a gynecologist/oncologist, but there are none in our town. I have received authorization from insurance company to go to gynecologist/oncolgist and now I just have to have files faxed to his office. I plan on going to gyn/onc for consultation, but I am not sure at this point who I will have do surgery.

Any thoughts ladies?? I am not sure if I want to travel anywhere from two to four hours to have the hysterectomy at the hospital gyn/onc is associated with? Did all of you ladies have to travel for surgery? I hate the thought of the post-op ride home.... He told me to return to gyn and ask if I would be getting standard care by going to her. He also advised that I should have a CT Scan before surgery. I guess I will know more after pelvic ultrasound.

One good thing, all discomforts from leep are gone. Still have not got my period though.

Oh, one more thing, Lynne, you have mentioned the gland discomfort I was having. It was a swelling on outer vaginal wall from Bartolins gland....all gone now and probably just from leep. But the dysplasia I have is from endocervical glandular cells.....an explanation I received about endocervical glandular cells cleared it up for me... it is just a different type of cell. The outside of the cervix and vagina are covered by a layer of flat cells called squamous cells. The canal of the cervix is lined by tall column-like GLAND CELLS called columnar cells. Therefore dysplasia of glandular cells is a dysplasia from inside the canal....which is less common (10 to 15% of cervical cancers) also harder to see and tends to be more agressive Hope this helps.

Hugs and prayers to all P.S. Sorry post is so long
  #19  
Unread 11-13-2002, 07:30 AM
carcinoma and CINIII

In May I had an irregular pap and did a colposcopy and then leep. We didn't get clean margins and did a CKC (cold knife cone) after 3 mo. check. Now I've received word that we didn't get clean margins and will be doing another cone the day after Thanksgiving. My gyn too strongly suggests hyst but I'm not there yet. I've been contemplating a 2nd opinion as well. I just keep thinking maybe that's not the only answer. (I don't think I want to do many more cones though.) Let me know if you take that route and how you're doing.
  #20  
Unread 11-13-2002, 08:34 AM
cin

I personally felt a lot better getting a second and then a third opinion. My second opinion was from another gynecologist that I knew and trusted (I didn't really know my current gynecolgist too well) and then speaking with the gyn oncologist was the best decision. It made me feel more informed and more relaxed about my personal decision.

According to the gyn oncologist, as long as you are closely monitoring your "condition" and treating it as you go along, chances of cancer developing significantly decrease. My gynecologist strongly suggested a hysterectomy and NOW!!!! I also do not have clear margins -- but I was not prepared coming from a very personally difficult summer/early fall to jump into a hysterectomy.

I am waiting the 3 mos which brings me to early January and I will have another colposcopy, etc.....If again, I find that I have the same situation, I will go for the hysterectomy. It really is a choice to make between wanting to monitor the situation CLOSELY or getting it all taken care of with the hysterectomy (of course still getting normal checkups).

I urge the second / third opinions as it seems most women will!!! Particularly from a gyn oncologist.

I feel so much more relaxed now and less anxious. If you are not ready for the hysterectomy it certainly can't hurt to continue to do your homework and see more doctors!!!!!

Best of luck!!!!
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