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Diagnosed with Endometrial Cancer

alynn820's picture
alynn820
Posts: 7
Joined: Aug 2018

I was diagnosed with Endometrial Cancer by my GYN after a biopsy. I see the GYN ONC tomorrow and am scared, nervous and confused. There's a part of me that feels like I waited to long to see my GYN after first symptom, but at 43, I really thought I was pre-menopuasal and that what I was experiencing was normal. It wasn't until my "period cramping" didn't go away that I realized I had a problem. 

My GYN would not tell me anything about my biopsy other than it was abnormal, endometrial cancer, the best cancer to have (whatever), and that it was a good thing I hadn't waited any longer. 

What should I ask tomorrow, what should I expect. Anyone have any information as to what my timeframe would be for hysterectomy? Like will I go tomorrow and surgery be scheduled within a week, a month, 2 months. Too many questions. The stress is getting to me. 

Thanks, 

 

April

Feelingalone74
Posts: 244
Joined: Jun 2019

Mcarp0117, so sorry all that u are going through.  I hope that your surgery goes well!

I'm 44 as well so I completely understand what your saying in needing to live a long life for your hubby and son. I keep saying the same thing to myself .

Wishing u all the best! 

 

Kaleena's picture
Kaleena
Posts: 2053
Joined: Nov 2009

I was diagnosed with Grade 2 Stage 3a at age 45.   found in left ovary uterus and cervix.    I just turned 59 this year.    I did have a couple of recurrences since 2005 and several more surgeries but it was doable. 

My best to yo

 Kathy

mrpmrp
Posts: 1
Joined: Aug 2019

Hi, I have Stage 3 grade 3 Endometrial Cancer. I had a hysterectomy on July 23 and they found a tumor on the omentum which my doctor removed. I am happy with my oncologist and she has performed the D&C and hysterctomy, and I will go through 6 rounds of chemo (Carboplatin and Platitexel) and then radiation to follow. I am 36 and have a healthy BMI, so it is unusual that I contracted this type of cancer and that it is as aggressibve as it is, but the details and treatment are straightforward.

Should I seek a second opinion for the treatment at this point? Is it worth it to pay for Memorial Sloan Kettering when I am happy with my doctor (I have very limited financial resources)?

Any help much appreciated! 

MAbound
Posts: 1101
Joined: Jun 2016

Hi MRP,

I have/had a stage 3a, grade 3 endometrial adenocarcinoma. Endometrial cancer just means that the cancer originated in the lining of your uterus which is called the endometrium. Adenocarinoma is the most common, hormone driven form of endometrial cancer. There are other types, like MMMT, serous, clear cell, and UPSC, that are rarer and more aggressive.

You don't say which type of endometrial cancer you have and I think that would influence my reply.

I really liked the gyn oncologist I had in Buffalo and it sounds like you have the same chemo plan most of us have had and is considered the "standard of care" for uterine cancer. So far, so good. I firmly believe the doctor matters more than the institution.

Where I'd consider going to someplace like Sloan-Kettering is if you have one of the more aggressive types that puts you at higher risk for recurrence than the common type. You might want a second opinion then and also a relationship with a gyn-oncologist there who has more experience with those aggressive types just in case front line treatment fails. 

Another thing we highly recommend and would be an invaluable place to spend your money otherwise is on genetic and/or genomic testing. Those tests can help guide treatment to what would be specifically effective for you. If done before treatment it can possibly prevent going through ineffective treatment if you are resistant to the "standard of care" and if you have a recurrence it can point to what to try next. Unfortunately, it's generally not covered by insurance, but a lot of us believe it really should be.

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

I believe Grade 3 is, de facto, the agressive kind, as Grade refers to growth rate of the cells. Grade 1 is slow growing, Grade 2 is faster, and Grade 3 is the highest the chart goes. I'm Stage III, Grade 3C, and had the standard care which, unfortunately, didn't help; I developed mets while I was still on the 'standard' chemo. I concur about the geonomic testing; if I had it to do over I'd get that done up front via Foundation One or similar. Also, your surgical path report should have tested for microsatellite instability (usually termed MSI-H, 'H' for high) which puts you automatically in line for immunotherapy and other types of treatment.

MAbound
Posts: 1101
Joined: Jun 2016

Maybe this will help: https://www.cancer.org/cancer/endometrial-cancer/about/what-is-endometrial-cancer.html 

I've always separated it in my mind as stage refers to amount of spread, grade refers to degree of cell mutation on a scale of 1 to 3, and type refines things into the common form vs rarer and more aggressive forms.

I have the common type which is supposedly easier to treat, but with a high grade (3) I'm at a higher risk for recurrence anyway. The dark cloud still hangs over my head three years after I've finished treatment, but I'm getting kind of hopeful that it might actually be gone. The thing to remember is that frontline treatment is your best bet for a cure, so second opinions and extra testing to get the right plan are never a bad idea. 

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Sounds like you are on right track. I concur with others regarding genomic testing but sometimes they don’t do it til you have a reoccurrence. I’m also Stage 3c, Grade 3. Had standard treatment. Reoccurred 8 months after finishing radiation. In remission 1.5 years with Megace. When reoccurred I sought second opinion at MD Anderson which concurred with my Fox Chase treatment. I tried to get in Sloan but was told they were taking only the rarest of cases because of their case load. Good luck!

BluebirdOne's picture
BluebirdOne
Posts: 370
Joined: Jul 2018

This is nothing to fool around with. You don't specify if your oncologist is a gynecological oncologist. If not, you should seek a 2nd opinion with a GO no matter where you chose to go. Also, if your oncologist or their lab does not see a lot of these Grade 3 cancers, and they usually are the most rare of the uterinine types, they may not have diagnosed it properly. I went to Mayo for my 2nd opinion (you can still continue your care at your home base) after my original bungling gyne misdiagnosed me as just having fibroids. You want a team of people to do their initial diagnosis that have seen a lot of these cases. My original pathology was confirmed by the Mayo team, which gave me confidence in my diagnosis. My GO  had my tumor checked for Lynch Syndrome and other genetic defects, but did not do the Foundation One testing as I have not recurred. Most insurance companies pay for a second opinion so perhaps checking with Sloan to have at least the pathology confirmed might be a good choice. If you have had any scans, a second opinion on them is always a good idea. Good luck with your chemo and radiation. It is absolutely doable and we are here to support you. 

Denise 

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

To all of you who are newly diagnosed, it is scary and so many questions. I am a 3 time cancer warrior and still kicking pretty well at 79. First was 1997, stage 3 BC but I beat it and was teaching high school at the time and only missed one week while the drain was in after surgery. Chemo for 6 weeks and rads for 6. Surprised my doctor that no recurrence happened. Then in 2016 diagnosed with USPC, 1a; chemo and brachy; recurrence 2018, more chemo and 25 pelvic rads and brachy!   Now 16 mos. out and feeling good. Back to my working 2 days a week and trying to exercise daily. Had blood clots during 2017 so now on Eliqus. It is important to stay active during chemo to avoid that!! I did notFrown as my dog had died and no one to urge me to walk. So be encouraged that you have been diagnosed and the surgery is coming and the results will guide you to make decisions from that. I was lucky to find this site right after diagnosis and the ladies here encouraged me to do the chemo and rads as I was thinking just observation. Know you will all find the courage and strength to beat this and this bunch is great with GOOD information. Hugs, Old gray mare

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

Donna Faye, you absolutely delight me.  You have been through so much, and you just make me feel like no matter what happens, I can do it too!  You really have the gift of encouragement.

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

I hope I do! 

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