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Help me think straight please! Help me think straight please!

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Unread 07-12-2002, 05:20 PM
Help me think straight please!

I came here a week or so ago after seeing my gyno oncologist. He and I decided on a TAH BSO based on the fact I have a 8cm sepeated cyst on one ovary. My ca 125 test was 60.2 but my FSH levels say I'm still have the ability to have cchildren (not that I'm planning too) I just can't remember the other term for it.
I know we will have to take both ovaries but I am wondering if I really need to do the uterus, tubes and cerivix. I have aheavy endo layer also, but that could be nothing.
I keep hearing about prolapsed vaginas and the whole idea of doing the entire hyster was so I wouldn't have to wrooy about future surgeries. But hearing that picking up more then ten pounds could be a problem after a TAH Yikes!!!!
Should I be inisiting on doing that uterus biopsy? he wanted to do it, but I wasn't premedicated at the time.
Please guys help me think straight? I have such horrible periods, I am so miserable and anemic. And my back has been hurting all week. What do you all think? Please don't hold bacK!! I need somebody like you to help me, not some golf playing surgeon.
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Unread 07-12-2002, 05:22 PM
ok one more thing..

I forgot to mention my endo was 16cm ?? and I was going to start a masters this fall, now thats all going into the crapper. it will take months to recouperate from a TAH and I won't be able to take even one course or work (which I need to do, I'm broke)
Unread 07-12-2002, 09:32 PM
Help me think straight please!

Hey Keggy,
I don't have any experience with this but I know the other ladies will be along soon to answer your questions. They are so full of info and maybe they can shed some light on this for you!

In the mean time, I can offer a and a prayer! And let you know you're not alone in this!ok? Hang in there sweetie, they'll get to ya as quickly as they can!

Hugs and prayers,
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Unread 07-13-2002, 04:46 AM
Help me think straight please!

Hi Keggy,

I can't really help to answer your questions either, but wanted you to know I'm sending you healing thoughts and prayers for a successful surgery and quick healing afterwards.

Unread 07-13-2002, 06:19 AM
Help me think straight please!

s Keggy

I am so sorry you are in this situation. The days preceding surgery are the pits. My gyn onc left the same decision up to me. Unfortunately my ovarian masses were cancerous, so a radical hysterectomy with debulking followed. If your cyst is cancerous, everything needs to be removed.
I think my recovery was fairly easy. You might be surprised. Eight weeks was really long enough for me. And that was even with beginning chemo three weeks post op. When is your surgery scheduled? If it is fairly soon, you may find that your plans for the fall need not be postponed. Especially if the masters program or your job do not involve heavy lifting or straining.
Everyone's recovery is different and I can only share my experience. Also I've had no trouble with a prolapsed vagina. Just dryness.
However, I hope you do not make your decision based on a possible ten pound weight gain. I don't mean to scare you, but it could be even more than that!
Best wishes and I hope you keep in touch.

Unread 07-13-2002, 06:43 AM
Please Listen to Your Doctor

Certainly you can ask about leaving the uterus but if the doctor feels it should be removed, remember that he/she is the specialist. My gynecologist (never heard of a gyn/onc until after surgery) wanted everything out just to be sure as much of the cancer was gone as possible. Remember--we're all different--some will have problems afterwards while others won't or theirs will resolve more quickly. If yours is cancerous (and I pray it is not) then all will likely have to come out. You certainly need to address your concerns with the doctor including after-effects and in the end, it's your call--but you're going to a gyn/onc who's the best for this situation, so please listen to him/her. A big
Unread 07-13-2002, 08:48 PM
Help me think straight please!

Hi Keggy,

When my gyn told me that I had an ovarian tumor, I thought she would say next that she would operate to remove that ovary. When she said TAH/BSO, I was shocked.

I was told that since I was through with childbearing, that was the best option for me.

Cells from my tumor were looked at while I was having my surgery, and based on the results of it being cancer, they proceded with the radical hyst, etc...

My oncologist (who was there with my gyn during my surgery) told me that if it were to return, it would go to my reproductive tract first. That's why they often remove all of those organs/tissue. Although I could have a recurrence somewhere in my abdominal cavity, so far I haven't. My thoughts were that I did not want to worry about it for the rest of my life, so I am still happy with the decision I made. I won't lie to you, I still worry about recurrence. Whatever you decide, I agree that you need to ask many questions now, and after. Don't be afraid or think that the doctors will judge you based on your lack of knowledge about your body. Prepare yourself with some knowledge now so that when the doctors talk to you, at least some of it will make sense. All of these doctors are so busy that I found it beneficial to me to begin asking my questions before she/he ran out of the room to another patient. I write down questions I want answered so that I won't forget them. Funny how being nervous makes me forgetful! No matter what you decide, it is your life and your health.

I wish you peace of mind,

When you and your doctors make the decision, and you know for sure what will be done, try to keep positive thoughts.
Unread 07-13-2002, 11:05 PM
CA-125 and cancer


In your post, you mentioned that your CA-125 was in the 80-range. Did your doctor explain to you that the CA-125 was NOT particularly sensitive for the detection of cancer?? An endometrial cyst (which can be quite big, complex, and ugly-looking) can certainly account for this level of CA-125.

Generally (although this is not 100%) a CA-125 below 100 does not correlate with a strong possibility of cancer. That being said, of course that cyst still needs to GO...And, if it is endometriosis, and you choose to keep your uterus and/or other ovary, you have to understand the risks of that endometriosis coming back. You say you have "miserable periods". That, in combination with the heavy endometrial layer on your ultrasound, would also suggest adenomyosis, which is endometrial tissue that has actually infiltrated the muscle wall of the uterus. That will give you some serious back pain, for sure!

. I understand how hard this decision is. I, too, had the same scenario pre-op. My friend and I discovered my cyst together on ultrasound ourselves. I went to the GYN expecting a laparascopic removal of just the mass (slightly larger than a pomelo or large grapefruit) and was shocked when she said hysterectomy. Then I had a CA-125 of 200, slightly high for all our comfort ranges, and we made the decision to go the whole way.

But do not let the elevated CA-125 panic you. There are, in fact, doctors who won't do them in cases like yours and mine where they know the ovary and cyst are being removed and can be biopsied. Positive results are not very sensitive, and far too stressful for those of us falling into the grey zone.

Good luck!

Unread 07-14-2002, 01:19 PM

I found that last night on the CA 125 test if your results were above 65 with a mass cancer could be the culprit. Mine is only 60.2. I know I could have it still its just that outside of my complex cyst there have been no other indicators, but then he really hasn't done enough tests.
And how did you know about my gray Audrey!!! LOL Boy a few gray hairs popped up last night in the mirror, didn't think the whole world knew about it already!
Unread 07-14-2002, 02:22 PM
Help me think straight please!

The key word in your response is "could be the culprit". The odds are slim with a CA-125 that low that cancer is indeed present. In some ways, a low CA-125 may be a better predictor of endometriosis than of cancer.

about your response to "grey zone". What I meant, of course, is that it's very difficult to know in those of us with complex, septated cysts and elevated CA-125 in advance what will be found on pathology with operation.

Tried to get my grey covered in time to tape the Bermans' show and never made it. I'm starting to get attached to the ever-increasing population of grey hairs myself.


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