EndoCa: Endometrial Cancer found AFTER TAH _UPDATE

I really need some advice. Due to severe chronic bleeding, I had a TAH on 4-20-09, but kept my tubes and ovaries. It was after that surgery that I found out the uterus has cancer in it. Grade 1A. My CBC bloodwork showed no signs of cancer.

Anyways, I was referred to a gynecological oncologist to discuss any potential further treatment options, as we don’t know if the cancer spread.

I met with this specialist today; he had mentioned it’s hard to tell what to do in my case because the cancer was found AFTER the surgery was performed. Typically the uterus, tubes, lymph nodes, and ovaries are removed. The doctor basically gave me two options:

1. The doctor can closely monitor me with exams once every 3 months for the first couple years, then move to every 6 months, then eventually once per year.

2. Solve all risks and remove the ovaries, tubes, and lymph nodes through robotic surgery.

He said there is a 5% chance the cancer spread to the lymph nodes, and a 95% that it did not.

I’m so confused... I don’t know what to do. Either option ends up costing a lot of money and potential time away from work, yet I don’t want to do something that I could regret later.

What do I do???

I was in a somewhat different situation as my cancer was found prior to surgery. However, I can tell you that I had the daVinci robotic hysterectomy with no complications and no side effects. I was released without any restrictions two weeks after surgery and returned to work the next day. I had a very stressful job and if I had it to do it over again, I would have taken another week off. I highly recommend the robotic procedure.

Other hystersisters have advised asking the doctor, "If your wife/daughter were in my situation, what would you recommend for her?" His answer might help you decide.

I know that there are other hystersisters whose cancer was discovered after surgery, and I am sure some of them will be along to share their experience with you.

Mine was found before so they did lymph node biopsy, BSO at the time of my surgery. It was all done robotically. I needed 6 weeks off but I had it all done at the same time. I don't know if recovery would be shorter w/ just the BSO & lymp node biopsy. Odds are it hasn't spread if it was that early, mine hadn't but you have to be comfortable with the decision.

I am going on Wednesday and I am going to be tested in the operating room, an oncologists is doing my surgery. I do have family history. Good luck.

Angelfire:
Ultimately you have to do what you feel is best for you. If you had minimal invasion , there is a good chance that you probably got it all...
I had minimal invasion of the uterus, but because I had the D&C with hysterscope prior to my surgery, some of the cells were pushed into the abdomen which upgraded me automatically to a Stage IIIA. Since I couldn't get a difinitve answer on whether those were live or dead cells and there was no further malignancy, I opted to just be observed. I am at 15 months post surgery and feel good. It is a chance we take, but I felt for me, it was what I wanted to do...
I knew I had cancer going in, but my bloodwork has never shown it.. even to this day my numbers are good, so I don't know how reliable that testing is.
Have you had any scans? I get a ct scan every 6 months now and that way they can look for any tumors that might show up... a little less invasive, but not fool proof either.
Best to you.

I am sorry you face this dilemma; as others note you need to determine what you will feel comfortable with. I'm one that always now asks re major medical decisions, if it were you wife or a close relative what would you advise, my sweet gyn had actually first said to me If it were her daughter she would advise surgery.
As you gather more info and hear from others in similiar situation and we have quite a few here, hopefully you will be able to make this difficult decision. If you think of other queries that might help you come to this conclusion, pls don't hesitate to raise them here. As you see, these ladies are the very best in trying to help and provide support.

peggiesue

Like your case, mine was also found after surgery, though I did have ovaries & tubes removed as well.

The oncologist staged it at 1C because it wasn't found before surgery, and no lymph nodes were removed and no abdominal washing (which is part of what would be done with your 2nd surgery, right?).

Also, in my case the cancer had invaded the wall by 70%, and they're not too comfortable with anything over 50%. I assume this is not the case with you. Which is the principle reason I'm having radiation.

I was given two choices: 1. another surgery -- lymph node dissection. 2. Radiation.

The gynb/onc who gave me the choices didn't recommend one over the other, but my gyn said the surgery is a big one, and my onc said the surgery would be more invasive than the radiation, so I'm doing the radiation. I did have a CT scan, which was clear except for a cyst on the liver and one on the kidney. My primary doc said these are not unusual.

I'm with the other sisters as far as asking the doc what he would do if it were a member of his family. And then maybe a second opinion.

You said that either option would cost money and time away from work. I can't help but wonder if a surgery wouldn't cost more of both than the checkups; however, it's your health, right, and who could put a price on that. I don't know if this has helped you or not; partially I just wanted to commiserate that it got found after the surgery -- the confusion is hard to deal with. Take care and let us know what you decide, Genie

I had my hysterectomy yesterday, cancer confirmed. I will get more info in two weeks after the full pathology comes back.

Aw, Teddy, you are in my prayers. This is hard to take but as the sisters keep reminding me, we are stronger than we know. We'll be here for you. Take good care of yourself, rest a LOT, and let us know. Big hugs, Genie

I actually feel really good, a little sore and sleepy but good. I think that I was prepared to hear the news so it really didn't hit me that hard. They said something about one of my ovaries being hot, not sure what that means.