Endometrial cancer diagnosis

yerba said:

Newly diagnosed
Hello everyone,

I was diagnosed Jan. 23, 2009 with endometrioid endometrial cancer. I'm new to this site, and grateful to be able to read everyone's situtations and have an opportunity to post.

I am in the process of trying to find alternatives to hysterectomy, if possible. I'm going through a list of resources and alternatives I want to check out, or rule out, before having hysterectomy. Unfortunately, at this point I'm not finding anything hopeful in lieu of hysterectomy, just strategies considered helpful as complementary care after hysterectomy.

I have found a surgeon about 3 hours away who teaches laparascopic hysterectomy to other doctors. She seems amazing. She has a lot of info on her site about hysterectomy, if anyone wants to check it out. I get the impression from her resume (which is astounding) that she has a lot of state-of-the-art info. Her name is Kate O'Hanlan (gynecological oncologist.) I feel very fortunate to be able to go to a doctor with her background and dedication.

I meet with her in 2 weeks to ask her questions. I told her via letter that I wasn't ready to have a hysterectomy yet, and wanted to meet with her in person if possible. She left a message yesterday and was very nice about it. She said there were no alternatives to hysterectomy out there for what I have, which is getting hard to deal with, hearing this from one possible resource after another. I'm getting a bit more resigned to this, but it's hard.

I'll put more info in the Resources link.

Thanks for reading this, and best wishes to everyone here.

yerba

Ro10 said:

Welcome Yerba
Sorry about your diagnosis. It is hard to hear that diagnosis. Everything I have read your want to get the cancer removed before it spreads to other areas. Most of us thought we were in early stages because we had no or few symptoms, and it ended up to be more serious than first thought. I had no symptoms, my pap test was abnormal, and I have stage 3C UPSC. I thought all I would need was a hysterectomy. Good luck with your appointment with your female gyn/onocologist. Good luck with making your decisions, too.

lindab555 said:

New to site
I have just had my hysterectomy on March 31st. I had the laproscoptic procedure. In the hospital for one night. Only pain was gas from being blown up for the surgery. I was diagnosed just 3 weeks before my surgery with Endometrioid Adenocarcinoma (FIGO1) and have been terrified. My doctor has been great. She is a gyn/onco, not sure how to spell, and is very good. She said it appeared that they got everything because it was confined to the inside wall of the uterus. Yesterday, I went back for my follow-up and the pathology report came back clear and there were no signs of cancer in any lymph nodes. I was very happy and relieved, then she said the magic words. "I want you to have preventive radiation therapy."
I am really scared of this and confused as to why I should have to go through this if there are no signs of cancer. Does anyone have an answer to this? I know I sound petty after reading other's problems but I need to find out all I can about this too. Has anyone been through the same as me?

Thanks for your help and my prayers are with all.

bonniesue said:

similar experience Lindab555
The very same thing happened to my mother who was told all was well after the robotic surgery and then got the path report at her followup 2 weeks later, that sounds very similar to you and had neg. washings and nodes confined to the uterus. After much thought and several 2nd and third opinions she is undergoing 5 weeks of external IMRT radiation and then brachytherapy. It depends on the thickness of invasion of the myometrium and the size and location.Some said just brachy and others the five weeks. But it has a good cure and my mother is looking at the treatment as an insurance policy and has a great attitude. It is just a shock to your system to think all is done and then whammy...been there and needed faith and prayers. The people have been great and patient with me because I have been a wreck but am settling down now. Also you will be in my prayers and realize your family members are there with you and probably feeling like me. this site is good and kindness abounds. My mom loved Cancer Schmancer by Fran Dreschar--easy reading and she endometrial cancer. My mother chose to have both as that seemed to be the common reccomendation and it is precautionary for recurrence. good luck. bonnie

lindaprocopio said:

Welcome, Reddie!
So sorry you got the Stage III-C surprise. So many of us were assured that they'd gotten it early, only to have the pathology show III-C (including me!) Do you know the 'grade' of your cancer? I hope it is one of the less aggressive types of uterine cancer. And I hope this Discussion Board is a good resource for you of updated information and 'real time' experiences that will help and reassure as you go through your chemo and radiation. BIG HUGS!

Deblittleton said:

Time off
Hello,
Thanks for the info. At present I now have a total of 12 wks off. That is what the FMLA allows. (Family Medical Leave Act) This promised me my particular job back. If I need an extension it would be non-FMLA. This does not promise me that job back, but one I am qualified for.

I will speak with my boss in April when I know more ie how I am feeling, my blood counts etc. I work in an ICU and there are infections everywhere. So it scares me even if my counts may be good.

Does anyone have any experience going back to work or not with a similiar situation? I would be interested in hearing from you.

Deb

lindaprocopio said:

Grade 1 is the LEAST aggressive: wonderful!
Grade 1 is VERY good news. Take comfort that your cancer is a slow-growing one. The 'multiple nodes' mets is why you have the Stage III-c, but your cancer grade is encouraging and really lessens the chance that your cancer will recur if you stick with your prescribed additional treatment. I'm happy for you! (In comparison, UPSC is a Grade 3 cancer, and that is why it is so scary and comes back so often.)

kanary01 said:

Endometrial cancer Dx April 09 New Here
I had Uterus cervix tubes and overies removed using the Divinci Robotic surgery on April 14. My gyn who was 100% sure I did not have Cancer did a D&C with hystocopy in January. She could not finish the D&C because she punctured my uterus during the Hystocopy and that left me having to wait 8 weeks for the hole to heal before I could have anything else done. When I went back after the 8 weeks she was not sure what to do next so she orderd another Transvag ultersound and wanted to do another D&C..Later that night she called me and referred me to a gyn onco for a second opinion. I saw him and he too said he really did not think I had cancer..I had been having pink spotting for a year lots of cramping, when I complained to my reg dr. she would treat me for a uniary tract infection..this was like every 2 months. Finally the gyn onco said he could do a total Hyst using the robot or I could go every 3 months for an ultrasound and if something changed we could then do something else. I am 65 years old and I had explored every other avenue. I told him I wanted the surgery. I had the surgery on April 14. While I was in recovery the Dr. came in and said all the frozen sections he sent to the labs came back good. I had no cancer. When I went back the following week for postop checkup, he told me that they did find somethng in the final path report. I had a stage 2 Endrometroid Adenocarcinoma, The tumor was in the lower part of the uterus and the predominant amt. of the tumor was in the cervix.
I also had a tumor in the left fallopian tube Grade 3A. The doctor did not take any lymph nodes becasue they did not find the cancer during the surgery. He did do a wash of the cul-de-sac fluid and it was neggative for malignant cells and showed only mild chronic infection. So because he did not take any nodes. He classifed me a 3C just in case. He had suggested I wait until I healed from the surgery (another 8 weeks) and then go back in and take some nodes. I did not want to waste another 8 weeks. I opted for aggressive treatment treating it as if it were a 3C instead of a 3A. I have had 2 cycles of Chemo so far and will have my third on Thursday..then I will start 6 weeks of external radiation in July followed by a week of internal rad, then 3 more cycles of chemo. I still can't believe this.
I see that that D&C's are not recommended if Cancer is supected. I wonder sometimes if something could have leaked out of the hole that was made in my uterus. I just have a hard time understanding how this was not found at an earlier stage when I had had 4 transvag ultersounds from Dec to April..So I really don't know what stage I am. Does this make sense to anyone else??

kanary01 said:

Endometrial cancer Dx April 09 New Here
I had Uterus cervix tubes and overies removed using the Divinci Robotic surgery on April 14. My gyn who was 100% sure I did not have Cancer did a D&C with hystocopy in January. She could not finish the D&C because she punctured my uterus during the Hystocopy and that left me having to wait 8 weeks for the hole to heal before I could have anything else done. When I went back after the 8 weeks she was not sure what to do next so she orderd another Transvag ultersound and wanted to do another D&C..Later that night she called me and referred me to a gyn onco for a second opinion. I saw him and he too said he really did not think I had cancer..I had been having pink spotting for a year lots of cramping, when I complained to my reg dr. she would treat me for a uniary tract infection..this was like every 2 months. Finally the gyn onco said he could do a total Hyst using the robot or I could go every 3 months for an ultrasound and if something changed we could then do something else. I am 65 years old and I had explored every other avenue. I told him I wanted the surgery. I had the surgery on April 14. While I was in recovery the Dr. came in and said all the frozen sections he sent to the labs came back good. I had no cancer. When I went back the following week for postop checkup, he told me that they did find somethng in the final path report. I had a stage 2 Endrometroid Adenocarcinoma, The tumor was in the lower part of the uterus and the predominant amt. of the tumor was in the cervix.
I also had a tumor in the left fallopian tube Grade 3A. The doctor did not take any lymph nodes becasue they did not find the cancer during the surgery. He did do a wash of the cul-de-sac fluid and it was neggative for malignant cells and showed only mild chronic infection. So because he did not take any nodes. He classifed me a 3C just in case. He had suggested I wait until I healed from the surgery (another 8 weeks) and then go back in and take some nodes. I did not want to waste another 8 weeks. I opted for aggressive treatment treating it as if it were a 3C instead of a 3A. I have had 2 cycles of Chemo so far and will have my third on Thursday..then I will start 6 weeks of external radiation in July followed by a week of internal rad, then 3 more cycles of chemo. I still can't believe this.
I see that that D&C's are not recommended if Cancer is supected. I wonder sometimes if something could have leaked out of the hole that was made in my uterus. I just have a hard time understanding how this was not found at an earlier stage when I had had 4 transvag ultersounds from Dec to April..So I really don't know what stage I am. Does this make sense to anyone else??

strawberrygal said:

da Vinci Hysterectomy
Hi Sharon,


I am scheduled to have a robotic hysterectomy next week on June 24, 2009. I ama little scared, but I think I have a good surgeon. I was happy to hear that your surgery went well. Wish me luck!


Love Pat