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Hysterectomy: GYN or GYN Oncologist?

Web_Girl
Posts: 6
Joined: May 2012

I will have a biopsy in a couple of weeks. If I have uterine cancer, my GYN said that will mean an immediate hysterectomy. I spoke with her nurse earlier this week and she said my GYN would do that hysterectomy.

If I have cancer, do I want my regular GYN to do the hysterectomy or do I want a GYN oncologist to do the hysterectomy?

Do I want the robotic procedure or the other procedure? Does that depend on the type of cancer? I'm not sure that my GYN does the robotic procedure. I can see from the Web site for her office that other doctors in the practice do the robotic procedure but I don't think any of them are GYN oncologists.

My story is that I have had abnormal bleeding for a few months. This past month it seemed like it didn't want to stop! I saw my GYN doc for my regular checkup. She has put me on Medroxyprogesteron to stop the bleeding. In a couple of weeks, she is going to do an ultrasound and a biopsy for uterine cancer. She doesn't think I have it but says because of my age (47), she needs to do the biopsy to rule out uterine cancer as the problem.

Originally she said I would be on the Medroxyprogesteron for only two weeks because she wanted the procedures done within two weeks. However, I couldn't get an appointment for three weeks. They extended the prescription so I won't be bleeding at the time of the appointment. It works great!

I have a regular checkup with my primary care doctor next week. When I did the blood tests this week for that appt, I asked that the CA-125 test be added to the list of tests since they were already drawing blood. I may ask the primary care doctor to put my blood test results in an envelope for me so I don't read the results at least until the day of the biopsy. I figure the ignorance will keep my stress level down a little bit prior to the procedures.

I've been reading a bit here and elsewhere on the Web, which is what prompted me to go ahead and ask for the CA-125 test, just in case I do have cancer. I know it's not always a good indicator but I figured it wouldn't hurt to get one.

My family history is that I have an aunt on my father's side who died from ovarian cancer. About 14 years ago, I had an ovarian cyst that ruptured. I had emergency surgery and that ovary was removed. I was a little fuzzy at the time but I seem to remember the surgeon telling me that although there was endometriotic fluid in the cyst, it did not necessarily mean I had endometriosis. However, every GYN I've seen since assumes that I do have endometriosis.

I'm really grateful to you all for sharing your stories and advice here. It's helpful to so many people.

Thanks.

Web_Girl

Kaleena's picture
Kaleena
Posts: 1196
Joined: Nov 2009

Hi WebGirl:

I was 45 years old with severe endometriosis. I had a laparascopy done and an internal sonogram and it was decided that I needed a hysterectomy. My regular GYN was doing the surgery. Because of the severe scarring, I was put on Lupron for 6 months to help soften the adhesions to make the surgery a little easier on the surgeon (my Gyn). He also had a GYN/ONC (his friend) assist him (not that he thought I had cancer) but as someone who was good at reconstruction in the event that they nipped a bowel or bladder. Both doctors where there and saw my insides since I had the traditional adominal incision. However, a week later I was told that cancer was found in both my ovary and uterus. As a result, I needed to have another surgery for staging (now done by the GYN/ONC). I was diagnosed with Endometrial Adenocarcinoma Grade 2, Stage iiia.

What was removed: uterus, tubes, ovaries, (total hysterectomy) - removed at staging: omentum, appendix, lymph nodes.

Nothing else showed up at the staging surgery. No CA125 was taken and it was not an indicator. By the way, that was back in 2005.

If you have any indication that it might be cancer, I would go with the GYN/ONC.

It seems that you are right on top of your medical care which is good. My best to you. Hoping you get good results.

Kathy

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Definitely have a Gyn-Oncologist do the surgery. Some do it laproscopically but the open incision (which I had) allows docs to see more and check things out better (lymph nodes, etc). You and your doc can make that decision.

I think a CA125 is good to get. My docs got that prior to surgery. Also get a tissue assay done.

I hope this all goes smoothly for you. All the best. Mary Ann

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Hi Web Girl,

I went in for a D&C last October due to bleeding and watery discharge. My ultrasound showed a fibroid but I never had a biopsy, and during the procedure it turned out I had a septumated uterus (I had a divider in my uterus, like the septum in your nose - about 15% of women have this and it's usually discovered when you're trying to have kids which I never wanted) which prevented the gyno from seeing the whole uterus, so they did a laparoscopic hysterectomy.

At 45 years old, with 25 years of birth control, I was sooooo not a candidate for uterine cancer. However, the pathology report came back positive for UPSC. My gyn/onc then did an open surgery to remove everything the hysterectomy didn't.

According to both my gyn and gyn/onc, because my hysterectomy was robotic wherein the uterus was morcellated, my risk of the UPSC spreading was increased. UPSC is very aggressive, and having the unknown tumor basically put in a grinder increased the risk of even one rogue cell flying around in my pelvic area, or getting stuck in the incision. As a result my treatment was more aggressive - 6 rounds of chemo and 25 radiation treatments - than it otherwise may have been if I'd had an open hysterectomy to begin with.

That being said, there's no way my gyn could have predicted this, and even if my hysterectomy had been open I'd have needed the second de-bulking surgery to determine my cancer's stage (IA fortunately).

If your biopsy is positive, I'd definitely want a gyn/onc to do the surgery. They do like to look around and if it decreases your need for a second surgery that would be best.

Good luck,
Liz in Dallas

SettledSue's picture
SettledSue
Posts: 23
Joined: May 2012

I agree with the others that a gynecological oncologist is the way to go. If you do have cancer the gyn oncologist will be better able to look for any evidence of spread of the cancer.

Good luck to you!

Be Not Afraid's picture
Be Not Afraid
Posts: 8
Joined: May 2012

Hello...

Good questions to post! I have some excellent first hand experience with a gyno oncologist. A gyno oncologist is specifically trained in surgical procedures when cancer is present. They have the expertise to properly identify cancers, know what lymph nodes should be taken, other organs to debulk, such as ovaries, etc. A laproscopic and robotic surgeries are less invasive and provide less pain and easier recovery. If you can minimize large incisions and having organs become in contact with hands/air, then this will help with organ healing, digestive issues, scar tissue. I would seek out a gyno oncologist, even if it's for a second opinion. Ask him/her the advantages/disadvantages to a traditional surgery compared to a robotic. DaVinci is the high tech name I believe.

I had two surgeries...one laparoscopic surgery (Aug. 2011) to remove a grapefruit sized Granulosa tumor engulfing my right ovary. Then in Jan. 2012 I had robotic surgery for a complete hysterectomy. They took the other ovary, uterus, cervix, about 25 lymph nodes, and biopsied several tissues. I couldn't have been more pleased and happier with my decision.

Also, ask your doctor doing the uterine biopsy if you can take a over-the-counter pain med before the procedure. I had to have a specific contraceptive placed within my uterus and it is a little painful...kinda like a really deep cramp that last a few seconds. What is painful is going through the cervix. I am NOT trying to scary you, but I think anyone would appreciate the heads up if you could take something or even know to ask if u could.

Hopefully, they will do the ultrasound first and review findings before going ahead with the biopsy. May the ultrasound is all you need! I think it is good to get the CA-125 test. It provides a good reference number. The ultrasound and biopsy are more concrete in their findings. I've been told, the CA-125 number can fluctuate with hormones, and other factors in a women, so it's not a complete fool-proof blood test. Still, it can provide some information.

Your regular gyno doctor can do the ultrasound, biopsy, blood work, but I would leave the surgery (if need be) to a gyno oncologist.

I will pray for your upcoming decisions! Let us know how it all works out!!

Be Not Afraid's picture
Be Not Afraid
Posts: 8
Joined: May 2012

A robotic surgery is very high tech and magnifies your insides to an extreme amount. I was concerned that the doctor wasn't going to "see it all" and "would miss something" but was reassured by several doctors that the surgery has an extremely powerful lens and it's as if the doc. was placed right in there. Another good question to ask your surgeon--the power and skill of a robotic surgery.

Web_Girl
Posts: 6
Joined: May 2012

Thanks everyone for all of your feedback. I appreciate it. I will discuss some of these things with my primary care doctor next week to have myself better prepared when I see the GYN the following week.

I also never had kids and was on birth control pills for about 12 years or so.

For procedure day, I'm scheduled for the ultrasound at 9:30 with the biopsy at 10:00. My GYN did warn me about the procedure and suggested I take some Motrin or Advil before I come to the office. She said for some people, they can return to normal activity afterward. For others, they get dizzy and she tells them to stay home. I'm planning to go to work afterward so hopefully, I won't have too many cramps afterward or be dizzy.

Telling me about the procedure isn't scary--the idea of cancer is scary enough! :-) As you can tell, I like to to do research and be as prepared as one can be so I appreciate all the info.

Fortunately I have a pretty busy schedule so I have other things occupying my mind. This afternoon I had a project at work that required some deep thought and I was able to escape for a little while. I'm trying not to think too much about my upcoming procedure day. My mom died from lung cancer many years ago so I've been through the cancer thing as a supporter. I know it's a long process for diagnosis and sometimes a rush for a test only to have to wait several days for the test results. And I know I can't worry about anything until I have something to worry about.

I will start researching the gyn oncologists next week. Hopefully I won't need to see any of them. I will let you all know how everything goes.

Again, thank you very much for your responses.

Double Whammy's picture
Double Whammy
Posts: 2320
Joined: Jun 2010

I had a total of 5 endometrial biopsies over my lifetime. The first two were when I was young and had not had children. They were also performed by general practitioners. And this was back in the day (waaaay back in the day). They were very painful. When there was a need for one many many years down the road, the gynecologist advised me to take 800 mg. Ibuprofen about an hour prior to the procedure. I did and the difference was night and day. It was basically uncomfortable. Definitely not something I'd do for fun, but there was a tremendous difference in 20 years ago. I self-prescribed ibuprofen to myself prior to my last biopsy 2+ years ago. This gyn acted really impressed that I didn't complain about the procedure. I did have some cramping, but it was very tolerable. I told her I thought it was the ibuprofen that made the difference. That's my experience and I recommend you take the ibuprofen/motrin/advil.

IF you have cancer (and I hope you don't), I also recommend a gynecologic oncologist. Their training is 4 years beyond that of a gynecologist. They only deal with cancer (don't deliver babies, don't deal with cysts, endometriosis, etc.) and so they have lots and lots of first hand experience with gyn cancers. Their surgical skills are refined to remove lymph nodes and recognize suspicous areas and deal with them at the time of surgery. Statistically, women have a better outcome if they're under the care of a gyn oncologist. Dosn't mean some gyecologists aren't just fine, but "just fine" doesn't work for me when dealing with cancer. This also doesn't mean that some gyn-oncs aren't ok, either.

Open vs. robotic/laparoscopic surgery. Only your surgeon can decide which is best for you and a lot of that will have to do with what s/he is most comfortable with. Do you research and discuss this openly. There are valid arguments on both sides. Rest assured, tho, if your surgery is done robotically, any time cancer is known or suspected, all of your parts will be removed intact via your vagina. They will not be macerated. I was concerned about that and asked at my preop.

Good luck to you. I'm hoping for a benign condition for you.

Suzanne

Web_Girl
Posts: 6
Joined: May 2012

I wanted to say thanks again to everyone who has posted on this forum. It has been quite helpful.

I had my biopsy today and am now in the waiting game. My GYN said it will take about a week for the results. Everything seems to look good but I have read enough stories that I am holding my breath until those results come in. Even then I think I am going to get a second opinion from a GYN oncologist. I've found one who has done the robotic surgeries, including the da Vinci method. My primary care doctor also recommended her. So I have asked for my biopsy results to be sent to her as well as my primary care doctor.

When I saw my primary care doctor last week, my blood tests were normal including the CA 125 I had requested. The ultrasound today did find a small fibroid. I requested a copy of the ultrasound results and did not read them until I got home tonight. My anxiety level was a little high when I got out of the GYN office this morning! When I read the results tonight I saw the fibroid she mentioned but also learned there were two simple cysts in my ovary, both small. I don't remember the GYN telling me about those but she very well could have. I was a bit nervous. Also, I do have endo thickness but not very much. She wasn't worried about it. So all sounds good but we'll know for sure next week.

I went off birth control pills about a year ago. After today, my GYN is putting my back on the pill (Yasmin or generic equivalent). After three months if I notice irregularity, I'm to check in with her.

The one thing I didn't do was take someone with me. I'm single and although I've shared all this with two good friends, they live out of town. My sister lives close but also out of town. I shared with her only that I was having an ultrasound. I don't want to worry her until I have something to worry her about as she will focus on the worst case scenario. Same with my local friends...we lost one in our circle last fall to cancer. So didn't want to worry them. But after the biopsy was all over and the doctor and nurse left the room to let me get dressed, well, I really needed a hug after waiting three weeks for this procedure. I didn't realize I was that anxious. So any single people out there facing a biopsy, take a friend capable of a good hug. They don't have to go in the room with you--the waiting room is fine. My recommendation post-biopsy is a good hug.

Should my biopsy come back positive, yes, I will have someone there with me for that office visit.

Because of you all:

*I knew to take 800 mg of Advil instead of the 200 or 400 I would have taken.

*I asked for the CA 125 test while they were taking blood for routine tests.

*I knew what to expect with the biopsy procedure. I've read some things here and also found a description of the procedure somewhere else on the Web. I made the mistake of reading about some ladies experiences on another forum. They were quite expressive. I regret that now because I think that increased my anxiety level. For me, there was some discomfort but I headed straight to work and about three hours after the procedure I conducted a training session, spending part of that time on my feet.

*Since I never had children I knew that she might have trouble with the biopsy and might not be able to get to my upper uterus for a sample. From you all I knew to ask about that. And yes, I think she was only able to get a sample from the lower part of the uterus.

*I knew to ask for a copy of my test results so I could have all the details. I always get copies of my blood test results but I would not thought to ask for a copy of the ultrasound results. (And yes I will request my own copy of the biopsy results.)

*Finally, because of the experiences I've read about here, I think I will get a second opinion from that GYN oncologist, just for peace of mind.

These are the highlights of information I've gained from you. I'm sure there is more. I'm very appreciative of everyone who posts here. Thanks so much again for sharing. I'm sorry your path in life has led you or a relative to become a member of this club. I send you my best wishes.

Web_Girl

Ruffy7
Posts: 126
Joined: Sep 2011

Hi Web Girl,
I'm 52, diagnosed with appendix cancer last June. Had surgery where the appendix/cecum were removed. Had been having regular periods up to the surgery last June. Then no periods until end of Feb this year - had 2 periods within 3 weeks. Gyn did ultrasound that showed a complex 4.3 cm mass on right ovary and 7.5mm endometrial stripe. I was very nervous that this was a spread from the appendix cancer even though a CT scan (I see an oncologist every 6 months) 6 weeks earlier did not show the mass.

Well had to wait 2 months for the scheduled surgery, gyn did a D&C, hysteroscopy, and laparoscopy - she also ended up taking out the right ovary. Had to wait another week for the pathology report - came back as a hemorraghic corpus luteal cyst. So, it turned out good for me so maybe it will be the same with you! I too get copies of all of my reports. Never know when you will need them to share with another doctor. My gyn did my surgery but that was after I consulted with my local oncologist as well as a specialist in appendix cancer from MD Anderson - so I felt ok having her do it then. If it had turned out cancer then I would have gone to some kind of onc to deal with it - luckily I didn't have to deal with that... again, this time in our lives (ah, menopause) certainly messes the system up and it could just be that and not cancer. Good luck, Ruffy

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Glad you found a good doc and hope your biopsy results are negative.

It just occurred to me that since you are going alone to doctor, that perhaps recording your conversations will help you remember what was said. Your cell phone probably has this capability.

Best wishes. Mary Ann

light42day
Posts: 61
Joined: Mar 2012

I hope the results of your biopsy are negative, too. Will pray for healing for whatever is going on in your body and for peace as you're waiting for results. The waiting time can be kind of hard, I know.

Blessings and hugs to you!
Peg

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