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Hysterectomy & Cervical questions Hysterectomy & Cervical questions

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Unread 09-27-2004, 07:13 PM
Hysterectomy & Cervical questions

Good evening ladies

I had a pap that came back abnormal back in the summer. Since then I have a colposcopy, biopsy and then was supposed to have a cone biopsy with cryosurgery.

Last week the doctor phoned and requested I go and see her as the full pathology report came in.

When I saw her today, she recommended a hysterectomy, and is going to have a gyn/onc oh hand during the abdominal hysterectomy.

My question is - why would she recommend an abdominal hysterectomy if my pap came back HG SIL, the preliminary biopsy came back HG SIL and the full pathology came back the same.

Should I receive another opinion, or am I missing something?

She has cancelled my cone biopsy and cryo.

Thank you for any help or information you may have to offer. I am so frustrated.
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Unread 09-27-2004, 09:03 PM
Hysterectomy & Cervical questions

I would strongly suggest you get a second opinion. It's always a good idea to get a second opinion, but you're still very young, and this is a big surgery.

Have you had a history of abnormal PAP's, or is this your first occurrence? My understanding is that standard procedure would be:

1. abnormal PAP determined
2. colposcopy with biopsy
3. depending on pathology report, cone biopsy and/or cryotherapy.
4. depending on pathology report, hysterectomy may be considered.

If you have no previous history, it seems to me that it would be unusual to skip the cone biopsy. Statistics show that 90% of women are considered cured after a cold knife cone biopsy. You might like to ask your doctor why she does not believe this to be an option for you. As a general rule, the goal is to do the least invasive procedure necessary to take care of the situation.

I would recommend requesting a referral to see a gynecologic oncologist. They are the experts when it comes to female cancers and precancers, and they know all the most current treatment and surgical techniques. Depending on the result of that visit (how comfortable you feel with that doctor's assessment of your situation), you might even seek a second gyn/onc opinion. This is your life, your health, your future. Get all the information you can before making a decision.

I had a cone for carcinoma-in-situ when I was 23. I had normal PAP's after that for 10 years. It gave me the time I needed to have my family. You might also consider what your future fertility goals are. Perhaps you have a complete family, or perhaps you want to start one--maybe you haven't decided. But you should still take that into consideration during this process.

Good luck with everything. Please feel free to ask us any other questions that you might have. We might at least be able to provide you with other questions to ask your doctor. Please keep us posted on how things go.

Unread 09-29-2004, 10:04 PM

Hello, I'm 1yr 6 months post op now..had grade 3 cells, stage 1B cervical cancer. I had a tah but no follow up treatments after that. I've been following up every 3 months with my onc/surgeon for paps. I was such a wreck with this whole ordeal I never asked questions, just cried and put my life in her hands. I was to scared to ask any questions. As a matter of fact, I didn't even know what stage my cancer was until a couple of months ago. I'm still scared but go on with life and hope for the best.
My concern is why wouldn't she have me follow up with radiation or chemo? I had nothing. I would've done it as a precausion, but, I never asked. I just go for my follow ups and wait for results.
So far everything seems ok. I do have a horrible pain on my right side right below my rib cage...not sure what it may be. I don't know...I'm confused. Anybody here have 1B grade 3 cells with now rad/chemo? I'm just curious..wishing all of us the best!!!
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Unread 09-30-2004, 08:10 AM
Hysterectomy & Cervical questions

Chiko -- I would absolutely, without a doubt, get a referral to a gynecological oncologist as soon as possible. In fact, I would suggest that you get referrals to more than one Gyn/Onc just to be sure. The surgery that your gynecologist is recommending is major surgery and you want to make certain that it is absolutely necessary and also, if you do need to have the TAH, you'll want to have it done correctly the first time (which would require that an oncologist perform the surgery). Hysterectomies performed due to cancer are tailored for each specific type and stage of cancer which is why you need the oncologist.

Messy -- I too was concerned that my Gyn/Onc did not recommend further treatment following my hysterectomy/lymph node dissection (all clear). He told me that we have to "save the big guns" just in case there is a recurrance and there is currently no reason to believe that there is any more cancer left. You can only do radiation once per area so if we do it now "just to be safe" you can't do it later if the cancer (God forbid!!) comes back.

Unread 10-02-2004, 06:57 PM

Chiko: I agree, get a second opinion. My gyn. had told me that the most important thing about treating cervical cancer is to treat it in the right order rather than to rush into a radical procedure. Just as Jeanine outlined in her response! Sounds like they may be skipping ahead a bit -- perhaps a second opinion will make things a little more clear. I had actually requested a hysterectomy when the colposcopy results came back and they wouldn't do it. If you go ahead with the hysterectomy, please request that they sample your lymph nodes to be safe.

Hystermessy: I was 1B1 and I had radiation/chemo because they found two positive lymph nodes. If that had all been clear, they would not have proceeded with any treatments. Having radiation and chemo has it's own risks too and so if they aren't recommending it for you, it's probably because the risks outweigh the benefits for you. I have premanent hearing damage from the chemo and my bowel is fused to my stomach muscle.

The fear isn't gone for me even after everything -- perhaps because I'm afraid of having complications now as a result of the treatments. I think that's just cancerhead though and it goes with the turf.

Perhaps have a talk with your gyn/onc about your concerns. I would certainly see a doctor soon regarding the pain you described.

I hope that some of this helps.
Unread 10-03-2004, 07:43 AM

I noticed that your cone biopsy stated something about vascular invasion? What exactly does that mean?

I went to to the gyn, and he is going to do a cone biopsy on November 5. The reason my doctor recommended a hysterectomy is the HG SIL, is also showing in the canal. Since I have my tubes tied, they recommended a hysterectomy.

The gyn, told me that depending on the pathology from the cone, a hysterectomy might have to be done, in order to be safe than sorry.

Can you give me a little history on your situation?

I also noticed you are from Alberta...I am too, just a few hours from Calgary!
Unread 10-03-2004, 01:25 PM

Hi again Chico7, (sorry, this is long)
Always good to meet another Albertan! I live in Northern Alberta, close to Grande Prairie. My husband used to live in Calgary and so when we were dating, I spent a fair bit of time there (I lived in Edmonton at that time). Really nice city....haven't been there for a couple of years though. We have a number of relatives and friends there so should really make a visit soon.

My gyn was in Grande Prairie and he did the colposcopy and then the cone biopsy. When they discovered it was cancer, I was referred to a gyn/onc out of Edmonton at the Cross Cancer Clinic. She (the gyn/onc) did my radical hyst. in Edmonton.

I had 7 years of abnormal pap results (4 times) -- but not consistent abnormalities. I saw my gyn every six months for repeat paps.

When my pap came back low grade abnormalities in April 2003, my gyn said if another one came back abnormal at any time in the future, then he wanted to do a colposcopy to be safe. I saw him in August 2003 (only four months later) and the results said "unable to exclude high grade abnormalities"....so no one pushed the panic button but they referred me for a colposcopy.

I had the colposcopy done in late November 2003 and within a week (Dec. 1st), my gyn called me to say that they had found it was cancer..... It was adenocarinoma (glandular cervical) and not squeamous cervical. Adenocarcinoma is the less common type of cervical cancer and is not easily picked up by paps.

They booked me for a cone biopsy Dec. 15th. On Dec. 22nd, I was in the airport on my way to Arizona for Christmas when I checked in with my gyn about my results.... we had fully expected that the cone would get everything. He told me that although the tumor was very small, only 2mm in depth, they had found microscopic vascular invasions -- meaning that traces of cancer cells were detected in the blood vessels. He told me that my pathology was given to the gyn/onc for a decision about the next steps.

The gyn/onc called me in January 2004 to tell me that the panel of oncologists who had reviewed my slides had unanimously agreed that I would require a radical hysterectomy -- mostly as a precaution. So I was booked for Feb. 13th.

Two weeks after my radical hyst. my gyn/onc called to say that she and her team were floored with my results -- the cancer had spread to two lymph nodes but that no other trace of the cancer had been found anywhere....nothing left on the cervix, nothing on the uterus, etc. She said this was very uncommon, only happening 3% of the time. BUT, I have met two others like me on this web-site so I know it can happen to others. Then I started chemo & radiation April 1st.

The moral of my story is that the proper order for treating this is so very, very important. If they had rushed into the hysterectomy without first doing the cone biopsy, they would not have known about the vascular invasions and wouldn't have sampled my lymph nodes. If that were the case, I would still be walking around with cancer....and I would likely have become terminal.

My gyn/onc also told me of a different reason for the importance of treating cervical in the right order: It is a good idea to leave all of the female parts intact as long as possible. Cancer normally spreads in a logical fashion....(normally)....in which case if after the cone the cancer comes back or something was missed, it would slowly progress through the rest of the cervix, the uterus, etc. (protecting the major organs). This gives them more options for treatment if ever needed. Without those things in place, the cancer's next stop is a major organ.

Chico, living in Canada provides us with many advantages. One of the most significant of those is that you can seek a second or third opinion without any cost and without any insurance company's input -- that is your right. See another gyn before you do anything, please.... If not, then ask for a referral to a gyn/onc. before you do anything else.

If you go ahead with the hysterectomy, I would strongly suggest that you have a gyn/onc do it and not just have them "on hand". They are the experts. This is your life and your body.... don't worry about offending anyone.

I see that you are young....I was 31 when I had my hysterectomy. It really is life altering although I am doing quite well. I am a bit distressed that they would jump into something so drastic without first trying other things.

Feel free to PM me if you want -- I'd be happy to give you my number or MSN instant messenger address to communicate a bit easier.

Good luck with everything, I'm sure it'll all turn out well for you.
Unread 10-09-2004, 07:29 PM

Hi Connie (sorry for being so long)

Thank you so much for the reply.

You were very informative and have definately been through a lot! You are such a strong person! I hope that once I am though with the cone, it will end at that.

My son will be 11 in December, and since he was born, I have had a few abnormal paps. The past coouple of years they have always came back abnormal, my "OLD" docotor would just send a little generic letter in the mail stating the pap was abromal, come back in 3 months.

Finally a new female doctor came to our city, and lucky me, I got in with her, as she was not taking any new patients. (My last pap was September of 2003. Again came back abnormal.) I KNOW....I KNOW.....so I signed up with her in January, but never went to see her until July.

The reason we went was to get a clear bill of health, as my husband and I were going to try and have another baby. (I had a tubal a long time ago)

She obviously did the pap, and at the same time did an internal...WHICH I HAD NEVER EVER had done before. I about went through the roof. "What are you doing, I asked? She explained, and was absolutely stunned that I had never had one before. At that time, she stated that she felt a mass, cyst, or fibroid. She ordered an u/s.

I then receved a call stating that my pap came back abnormal. I was like, yeah and you want me to come back in 3 months. The receptionist told me the doctor needed to see me. She explained the levels to me, which again, had never ever been done. I has HG SIL. I had to go to the cancer clinic for a colposcopy. At that time no cancer was noted, but did see an abnormal lesion - he even let my husband look throught the colposcope! And he biopsied it.

Again the doctor called, HG SIL......and I think you know the rest of the story.

After reading your post, I am really concerned. If I have had so many abnormal paps, the latest being HG SIL, the colposcopy biopsy HG SIL, and now the canal scrape HG SIL, if I did have cancer would that not show. I know at the time of yours it wasn't until after the cone. Did your doctor explain this to you?

How could your 1st colposcopy show "unable to exclude" and the second cancer? Does it move that fast? Could it have been the pathology report?

For some reason, I thought that cancer grew from the outside of the cervix in. So if it has only shown HG SIL, a cone biopsy shoule be able to get it all? I guess that isn't the case. Can you explain that to me at all.

My doctor and gyn told me they cancelled the cryosurgery as it would not help, being that the canal scrape came back HG SIL as well. Does a cone go to the canal?

If you can explain any of this to me, I would greatly appreciate it. I am so confued.

I go for my cone on Nov. 5!

Take care, and again sorry for being so long. Take care and have a HAPPY THANSGIVING!

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