3 wks post op and still no definitive pathology

I am a 50 year old woman. Here's my story. I had been having pain on my left side for the last two years now, and had ultrasounds showing cysts, but the ultrasound at the end of September showed a cyst that was "full of junk" (per my gyn). So she had me take the CA-125 bloodtest that came back at 167.2. So next thing I know, she has me see a gyn/surgeon in her practice and am told that I need a complete hyste. Totally blew me away. Also said he wanted to consult with an oncologist colleague.

The oncologist then took over my case. I had TAH surgery October 14th (removed ovaries, falopian tubes, uterus, cervix and appendix) and was told my frozen biopsies were benign...and most likely my pathology would be the same. Week two came and still no pathology, even my regular gyn was curious. So I asked him to phone and see if he could get results. He ended up speaking directly to the pathologist who informed him they sent my case to another pathologsit at Harvard. And he scheduled an appt with the oncologist for the following morning (last Friday). So I went to the oncologist and felt like I was dealing with a politician. He would not give me any answers until he had something in writing from the guy at Harvard...seems my case gets more complex (his words). I was not a happy camper! I told him it was my body and deserved to be in the loop of what the heck was going on...if he didn't know anything, then he should at least explain why. So three days ago he calls and said the pathologist from Harvard gave a preliminary report, but now they have to send him additional slides of my case before he will make his call. He did say that he is calling the tumor (I thought it was a cyst) on my left ovary malignant, but didn't feel any follow up would be necessary, and is calling what they found in my uterus stage 1 cancer (It's name I do not know as yet) and until he is finished with the other slides we do not know where else this may lead. Now I have seven more days of not knowing if it is worse than stage one and what else they will want to do to me. I am afaid I will have to have another surgery as they did not take any lymph node biospies due to the initial benign diagnosis.....

Anyone else out there with a similar story? I am just into week four and feel worse today than I have ever. I feel like everything has moved down and it is very uncomfortable. My drainage feels like I left the faucet running and feel like I need to shower about three times a day...so gross.

How horrible for you -- I'm so sorry that your case has not been straightforward. I will be thinking of you and praying for some resolution soon. Peace

I am so sorry you are experiencing this delay with your final path report. The Harvard pathologist apparently is being very thorough to provide an exact path report and of course you want this to have the right post op treatment(s) as necessary. Pls keep us posted and I hope your wait is not much longer.

Waiting can be the hardest part. But it is much better to get the right dx now so that the right post-op treatments are ordered.

If you do need more treatment, many here can help answer questions and offer support. Don't be afraid to ask.

Sending you some positive energy.

Lyn

I hope you get answers soon.The waiting in itself is enough to make you feel ill....Just know that you will get through this...Sending you lots of healing energy.

lala

Well finally got the call from Dr. Oncologist and it just keeps getting stranger and stranger. I am now told I have stage 3 cancer but do not need any additional treatment at this time. He said they have to call it stage 3 as it reached the outside, but because it started in the uterine glands and not on the inside wall it really isn't stage 3. He also said that it did not go into the lymph node tubes? so didn't go into the lymph nodes. His recommendation is to just come back in three months to do a pap and another CA 125, and basically is leaving radiation therapy as my choice. What the %^&$#?

I am very concerned with the fact that they didn't take my lymph nodes and am planning on going in to see them and asking for diagrams of how they can positively say it did not. I might even ask them if a CAT scan or MRI might be appropriate. I just don't want to be five years down the road and they say "Well we left the radiation up to you"....

Well, one would think that a pathologist at Harvard would be cutting edge, but who knows. This all sounds very strange, like no one is really sure what the situation is.

The first thing that I would suggest is to see a gynecologic oncologist. From what you said, I am assuming that a gynecologist did the surgery and not a gynecologic oncologist. A gynecologist and a general surgeon did my TAH/BSO in February. They did do a fine job of the surgery. I was staged as stage 1A, grade 1 ovarian cancer, but the cytology was indeterminate. Apparently, it is difficult to tell the difference between inflammation and cancer in the washings. I then went to 2 different gynecologic oncologists and the slides and washings were sent to a gynecologic pathologist. I am very happy that I saw the other 2 doctors and had the second opinion on the pathology. All of this took about 3 months, but at least I am confident in the findings and recommendations.

Get a second and even third opinion. I am very happy that I did. I had to travel over 80 miles to see the 2 gynecologic oncologists, but it was well worth it. Even my insurance company suggested the second and third opinions.

You may be like me... I am classified as a stage IIIA because there were a few malignant cells in the "pelvic wash" and they have to categorize it that way because the cancer was found outside of the uterus. However, after my surgery, my gyn/onc wanted to do chemo and/or radiation. I was referred to the NCCN cancer website and read that many doctors just observe if they are low grade cells. So that is what I opted to do. There are many women on here that have been told by their doctors that they will just be closely monitored with my classification... no cancer in ovaries, tubes, cervix or lymph nodes just in the wash.
If you are still concerned, I would seek a 2nd opinion.

Hi, I am sorry you are still left with doubt re the path report. I too would recommend a consultation with a gyn/onc if only to get better peace of mind. I also am not clear re the type of cancer you had as your first post mentioned cysts and now the path report indicates it "started in the uterine glands" which means it could be uterine cancer. As best I understand with uterine and endometrial cancer when it is a grade 2 or 3 often internal radiation is recommended. Pls keep us posted.