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Doctors are confusing me! Doctors are confusing me!

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Unread 11-17-2007, 09:14 AM
Doctors are confusing me!


I have had some major problems with interpretations on my pathology reports, which is QUITE frustrating for me as I am actually a research who works in the field of Pathology.

Symptoms: heavy bleeding and pain, periods were regular cycle.

What they found: Five fibroids (one is orange-sized, taking up half the uterine wall) I have some endometriosis. And here is where it gets frustrating: hyperplasia. At first they said there was a "focus" of atypia. So I sent it off to Mayo Clinic for a second opinion, as I am not overweight, not diabetic, no poly-cystic ovary disease. I just didn't fit the profile. Mayo comes back with "simple hyperplasia" and said a hysterectomy would be "overkill". So, the pathologists at the first place sent it off to another place for a THIRD opinion. They agreed with Mayo. So the first place "downgraded" the determination. Pretty big variation there in all of these reports! I sent it to one of the gyn/onc specialists I used to work with. He said it was complex hyperplasia.

So now, they are telling me to get a hysterectomy. They want to do it with abdominal incision, so they can check out what's going on inside more adequately. They said they'd keep the ovaries (I'mm 44), and that they would take the cervix, in case there is endometriosis on it. I have no HPV infections, and all pap smears have been normal.

I got disgusted with this and had the biopsy re-done. I was on Progestin for a month and had a D&C, which looked mostly normal, only a very small area looked weird. One doc told me that most women in their 40's have a little hyperplasia due to hormone problems, and that I could manage it medically.

Has anyone else ever gone ROUND and ROUND like this? I already have an unrelated neoplasm in my bone marrow that is not yet cancer. I have to get bone marrow biopsies for that. I don't need to go in circles over this gynecology problem on top of it. Has anyone else out there dealt with hyperplasia?

Thanks very much!
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Unread 11-17-2007, 11:08 AM
Doctors are confusing me!

All I can do is tell you my story and hope it helps you make the correct choices for you and when you read everyone stories they do really help. I had not had a pap for about 2 years the last pap I had was about 6 months after my daughter was born she is 3 now. My paps were always normal except way back in 1995 when I had a pap come back with cervical dysplasia and boy would that have been a blessing to hear that now. I tested negative with HPV too. I just so happened to take my older son to the doctors and saw a mammovan in the parking lot and decided to go and talk to them I had not had a mammogram in about 1 1/2 years and we do have that in our family. They told me to come back at 1:30 and I did and the performed it the results came back normal (what a relief) they also told me because of my age and the fact that I had no insurance I could get a cervical cancer screening pap for free at this place called Womens Health Connection so I made an appointment. I had to cancel a couple times but finally got my appointment in the middle of Aug. The lady told me if it was o.k. they would send the results in the mail if not they would call.. I actually went on about my life and exactly two weeks to the day at 3pm I got the call: My pap came back extremely abnormal I needed to come in so they could send me to a specialist. I did the pap came back Favor Neoplasia not to dis include HGSIL. that I looked up over and over and you know what I went to the specialist finally after having to cancel and they colposcopy. I got a call a week later (thinking it was for a leep) and they said I needed to come so the doctor could do an endomitrial biopsy and talk to me. I was diagnosed with Cervical Adenocarcinoma in Situ on 10/31/07 and was told that I have a very rare and aggressive type of pre-cancer/cancer I was also told it was encapsulated but they wanted to make sure it had not spread prior to becoming encapsulated (???) They did the endomitrial biopsy which I got the results back this past Monday and they were normal (thank God) anyway I now wait for the oncologist appointment to discuss treatment options which I know already will be a hysterectomy but exactly what will be involved I don't know. The reason I tell you this is because if you look up what I was originally diagnosed with to what I have actually been diagnosed with the treatment is way different. Make sure you see an oncologist and they perform every test needed to determine the correct type of treatment for you!! Come on these boards and ask as many questions as you want. I will finally meet with the oncologist this Tues! I am scared to death but at least I can finally know what is going to be done and when. The waiting and stewing is the worst part. I am so thankful that my doctors were actually as aggressive as I have heard this cancer is, I hope the oncologist is also!! I am sorry you have to deal with this but remember HPV is one of the main reasons for cervical cancer not the only! I tested negative for HPV and look at me. I think a lot of people get confused with the new info that HPV is a major cause of certain types of cervical cancer but it is not the only cause something are just fate or pulling the short straw. Take comfort here, I have and this board and two others are they only thing that have helped me be able to function with this grim diagnosis. I have been in the medical field for many years so anyone telling me not to research anything on the computer is wasting their breath. I have too if only for my kids you know. I for myself did not need to seek a second opinion because of my age and the fact that I am done with reproduction am o.k. with the hysterectomy and my diagnosis. If you wand get a second or third opinion and don't feel bad about it at all. Be your own crusader! I hope this helped a little. Good luck we are all here for you
Unread 11-17-2007, 12:46 PM
go around and around with pathologists

I feel your pain. I work in research at a large medical institution in chicago and I am in the same boat as you. My situation is a bit different because my initial path (from d & C) came back with adenosarcoma or uterine sarcoma, microglandular hyperplasia.

I was told my by my gyn/onc, my brother who is a pathologist and my gyn "that the hyperplasia is nothing". Maybe that was because my adenosarcoma or uterine sarcoma was "something" and hyperplasia was the least of my problems....not sure.

I have since had 2nd and 3rd opinions, addendums to path reports etc and they are yielding different opinions. What's a girl to do?
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Unread 11-18-2007, 09:02 AM
Doctors are confusing me!

Thanks blonderaider!

I think I am leaning toward the hysterectomy, but the big question now is whether I want a gyn/onc to do it or an oby/gyn doc. I want to see what the next biopsy says. I saw a couple of gyn/onc dotors previously, but they were looking at the incorrect path report. I may try to see another one here (I just moved). I am working at a major medical center so I'll see what they say.
Unread 11-18-2007, 09:07 AM
Doctors are confusing me!

Yep Lauren, I was got such different opinions. They gyn/onc docs say hyperplasia is a big deal, the oby/gyn say it is not, and the pathologists say
"take some meds, no big deal". I've been told by the gyn/oncs that they'd do it it laproscopically, and then the oby/gyn tell me that they don't want to risk cutting it up taking it out, spreading cancer, so they would do the abdominal. Then the in vitro doc say's they're all full of it, don't worry, take some meds to manage it and have it out when I am ready. Yeh. It's way confusing, isn't it? I was told though, by the gyn/onc that uterine cancer is genrally slow growing. So, if that is any comfort to you. Good luck to you, I'll say some prayer's for you!

Unread 11-18-2007, 09:53 AM
Doctors are confusing me!

Generally they can't make a full determination of the stage of the cancer, or the type, until after surgery. While it is true that most uterine cancers are slow growing and non-aggressive, there are some that are not that way. Only a gyn/onc would be able to make that determination during surgery (for instance, I have uterine cancer, but it was found to be a rare form which includes both carcinoma and sarcoma and is extermely agressive). I would suggest doing whatever it takes to get this checked out.
Unread 11-18-2007, 08:29 PM
Doctors are confusing me!

I would definitely get a gynecological oncologist, and if you get a hysterectomy, I would definitely have the ovaries removed!!!!

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