Had no signs until after biopsy done

Hi Denise! It's too bad you had to find us, but welcome anyway!

There's no simple screening test for this cancer, so I don't think any of us really have it on our radar ahead of time unless we have prior experience with it through a relative or friend. It certainly doesn't get the attention breast, colon, or prostate cancer gets or the research dollars for it, either.

Endometrial adenocarcinoma is the hormone driven version of this cancer. It's the most common form of uterine cancer as opposed to the more aggressive UPCS, clear cell, serous, and MMMT types. 

Grade refers to degree of cellular mutation present in tested tissue. Grade 1 is the least mutated and Grade 3 is the most mutated.

Stage tells how far cancer cells have travelled from the site of origin. It can only be defined by testing tissue removed during your surgery. You'll probably have a pelvic exam on Tuesday and your dr. may guess at your stage, but nothing will be certain until you get your pathology results back after your surgery and what sort of treatment you'll need afterward can't be set in stone until you have all of the pieces of the puzzle.

You will likely be having some more testing before your surgery. Hospitals require an x-ray, lab work, and an EKG before they will admit you and your gyn oncologist may want you to have a CT, MRI, or PET scan to give him a better idea on what type of surgery (robotic or open abdomen) you'd be eligible for. Those tests will also help for deciding on a total vs. a radical hysterectomy and how for to go taking sentinal pelvic and para-aortic lymph nodes. 

Your recovery time will depend on which kind of surgery you have. Robotic has the easiest recovery time, but you'll still have lifting restrictions for a while because while you'll have less pain, there's still a lot of internal healing that needs to occur. Use the time you have before surgery to do your shopping, cooking, and cleaning ahead of time so that you can focus on resting and healing afterwards. That will be so important if you need treatment afterwards. You want to be in a good place for that, so prepare your family to step into your caretaker shoes while you are getting through all that's ahead of you. 

This is enough to focus on for now. Resist searching the Internet for any statistics before you have a final picture of what you have. They are, in any case, generalities that really don't apply to any one individual and will probably only serve to scare yourself. You'll find as time passes that this cancer has many variables that are impacted by the unique variables that you bring to the table. It seems like nobody has exactly the same experience on this journey, but collectively we seem to be able to cover all of the bases to get each other to home plate. Feel free to ask anything or just vent your feelings if that is what you need. 

MAbound and cmb gave you a good summary/suggestions, including staying away from Dr. Google!  I can't tell from what you wrote if you are working with a gynecologic oncologist or not, but this really is the specialist you want to ask to see.  

How fortunate you are to have a gynecologist who spotted a potential problem during your routine exam and ordered the ultrasound, even though you didn't have the usual signs of post-menopausal bleeding or pelvic pain. Not all the women here have been lucky enough to have the same proactive care from their doctors. Hopefully this means that your cancer has been caught at an early stage.

Let us know what your steps will be after your appointment with the oncologist on Tuesday.

I had unusual blood clots that sent me to the doctor. I had know idea that that was a sign for cancer.  I just knew i didnt want blood clots. Cancer is a scary thing. I feel very lucky that my doctor was practive in finding my cancer. The scary part of my story is that i went to intacare first for my blood clots because the doctors were not open. The doctor at the insta care told me that if the clots went away that i would be okay and if they didnt he wanted me to see my doctor. My clots went away but i was worried they would come back (I had never had clots like that before). I did go to my doctor and eventually to the Gyn. Who did a biopsy to find my cancer.  Your not alone. Im glad they found it. I know its scary and no one wants to here they have cancer. Im alive still after 3 years because my doctor cared. I wish you the best as you go forward

Primavera said:

As the women who answered below said

As the women who answered below said, you were lucky to have a gynecologist that sent you for an ultrasound even if you had no symptoms. I had postmenopausal bleeding and my grade 3 endometriod adenocarcinoma didn’t spread. Was stage 1A grade 3 and I got three treatments of vaginal radiation. The radiologist kind of told me that if I hadn’t seen blood, I would have never been sent for biopsies, ultrasounds and a D&C, and I’ve read here about women with no symptoms, or women who had other symptoms that didn’t include bleeding and were turned away from biopsies until “you see blood.”

if they have had three negative Pap smears in the last 10 years. I did not have an internal exam for at least three years before my spotting, when I did have one just before dx, and external palpation there was no indication of the tumor that was there. And with cancer, my Pap was negative. No cervical cancer. Without spotting when would I have ever found out? 

denise71919 said:

Sharing the wealth of knowledge and experiences

To all you remarkable strong Ladies, thank you so much for your comments and your experiences.  I appreciate your honesty and know that I too will keep you all in my thoughts and prayers. 

BluebirdOne you are so right about educating others as I too have vowed to educate woman that they need to go to their yearly appts and if you have any type of gut feeling that something is going on with your body, you should move on that feeling and address your concerns to your doctor or doctors.   

 

some docs don't take bleeding seriously enough. Especially post menopausal bleeding. With the rising rates of all types of endometrial cancer, it pays to rule out it out. A vaginal ultrasound is not that expensive and reveals a lot. 

Denise 

MoeKay said:

I really wish

With all due respect, I wish the gynecologists would keep their comments about treatment and prognosis to a minimum and just refer the cancer patients to a gynecologic oncologist.  I know a lot of times the gyns are trying to make their patients feel better after giving them a cancer diagnosis, but comments like yours made are not helpful.  I was fortunate that both my uterine biopsy and pap showed adenocarcinoma, so my gyn made an immediate referral to a gyn-onc.  Where she went off track, however, was that she told me, once the gyn-onc sorts out whether you only have endometrial or both endometrial and cervical cancer, feel free to come back to me if it is only endometrial.  She explained that she and her husband (also a gynecologist) worked as a "surgical team."  Really?  It's been over 20 years since that conversation, and I still shake my head in disbelief at that one. 

BTW, I DID have type 1 endometrial cancer and I was not "cured with just surgery."  Another reason for the non-cancer-experts to keep their comments to a minimum!  And as a matter of fact, my gyn-onc never used the word "cured," which I really appreciated, because one really never knows.  It will be 20 years since I completed radiation this Friday, and to this day, I still don't use the word "cured." 

start to finish. The worst thing was what he did before he had a pathology report from the hysteroscopy biopsy, he removed most of my tumor because he thought it was a fibroid. The only permission given was to do a biopsy, not a possible fibroid removal. I actually did not have any fibroids. The tumor was in a polyp which filled most of the uterine cavity, but I had minimal invasion of the uterine wall. He removed all that the Myosure allowed him to (I guess they put limits on the amount of tissue removed) and told us in the recovery room that I just had a fibroid, no worries! Two days later the moron called and said that Oops, this is Grade 3, serous and clear cell cancer. Needless to say we were devastated. And this "doctor" is one of the most highly recommended guys in our area. Mostly I think he delivered babies. So he ended up removing most of my tumor spreading it who knows where instead of doing just a biopsy. I asked my GO later about this and they said that was pretty inaprropriate but since I had a radical hysterectomy, chemo and radiation that I should not worry about the hysteroscopy spreading the cancer. I was given a 1a but I still wonder about my initial biopsy. Combined with all of his ridiculous uniformed happy talk which did not prepare me for the eventual dx I was pretty upset for months. 

Denise