Diagnosed with Endometrial Cancer

Welcome Keeka.  So glad you found this site. We are a very supportive group to be a part of. Lots of information is shared. And, pretty much nothing is off limits. It is impressive that you continue to work through your treatments. I suspect you are way stronger than you think you are. Take care and please let us know how you are doing with the rest of your chemo. I hope everything levels out a bit for you.

Love and Hugs,

Cindi

Welcome Keeka! Keep us posted on your progress. I was 3C with clear cell cancer in 2015, so know there is much to hope for despite the bumping road you have been on.

So I had my CT last Thursday 7/25 and had allergic reaction to the contrast, but I'm all good.  Dr. called this morning with final pathology and CT results. He said CT looked ok and final pathology shows more endometroid carcinoma with some cells behaving more aggressively like serous carcinoma, but they are calling it Grade 2 Endometroid. Did test positive for lypmhvascular space invasion, 72% myometrial invasion and tumor >2 cm.  He says next steps are to do the lymphadectomy surgery to test lymph nodes. If negative then 3-5 cuff radiations. If positive then radiation and chemotherapy.  Defintely still very nervous about the lymph node removal, but when I asked him if I did nothing at this point what is my risk.  He said if even microscopic spread to lymph nodes and we don't know it spreads through lymphatic system and I run risk of dying from this cancer if not treated appropriately up front.  So guess I'm having surgery either the 9th or the 12th. 

Yes I’m at MD Anderson they will do the lymph node surgery. Definitely listening to my dr there for sure. Don’t really want to have to do any of it, but I’m only 44 I need to live a long life with my hubby and kid. 

mcarp0117 said:

Yes I’m at MD Anderson they

Yes I’m at MD Anderson they will do the lymph node surgery. Definitely listening to my dr there for sure. Don’t really want to have to do any of it, but I’m only 44 I need to live a long life with my hubby and kid. 

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

Keeka said:

diagnosed with Endometrial Stage IIIC2

I was diagnosed in Sept. 2018. I just found this discussion board. I've read just about every post. Back in July '18 I went on vacation with couple of family members.  The elevation of the place we went was alot higher than it was at home.  With in a day I began to experience vaginal bleeding.  I am 68 and long time past periods. So I dealt with it for the next few days.  When I got home I called my gyn and made an appointment. She did a pap smear.  Two days later I was called back in for a biopsy. They said results would be back in a week and made an appointment for me to come back for the results. But the next afternoon they called and ask me to come in the next day.  I was terrified !!  I already knew what she was going to tell me but I hoped that I was wrong.  I wasn't. She made an appointment for me to go see a gyn that specializes in cancer of female organs.  I went that Friday.  He told me that I definitly had cancer and scheduled an appointment for Oct. 31, 2018 for a radical hysterectamy.  He did a robatic surgery and took everything including a few lymphnodes for precaution.  I then went home to spend 6 weeks healing from the surgery. The on Dec. 7th I went in for day surgery to have a port placed on my right side of my chest under the skin.  The starting the following Monday Dec. 10, 2018 I started Chemo (Carboplatin and Paclitaxel). My oncologists (by now I have 3) decided that I would start radiation on March 11, 2019along with continuing chemo.  My radiation treatment was 26 days of radiation and 3 times of vaginal treatment.  By the 2nd week of April I was starting to feel sick. I told the doctors but they said it was just a part of the side effects. By the next week I was so sick I could barely move.  I was throwing up with diarreha and dizziness.  I called my boss at work and told him I could not come to work.  Fortunately he was very understanding.  My counts all hit the bottom.  They stopped my chemo and radiation. After a week they called and wanted me to continue radiation.  I started going back daily.  Some days I was too sick to go (throwing up etc.) so they just added those days to the back of the others.  I had to be treated for dehydration a few times (saline infusions). I finally finished the 29 radiation treatments on the 17th. Then on May 20th my radiation doctor ordered a blood transfusion. I began to feel better. Finally June 14th back to work.But my red & white blood cells were way too low for me to start chemo again.  This started a weekly testing of blood work.  Finally on Jun 22 my chemo doctor told me that I had to start chemo again or we would loose the window of treatment.  So I am scheduled to start chemo on July 30, 2019. I'm really happy to have found this discussion board.  I hope I havent bored all of you.  I'm divorced and do not have anyone with a relationship such as a spouse can provide.  I do have children and grandchildren but they have their own lives. And I understand that.  However, I want to thank any of you that took the time to read my story.  Telling it to others seems to help a lot.  I probably could have written 3x more than this but I know most people don't like reading really long posts.  Thank you if you read all of this !!

Thinking of u keeka and hoping the rest of your treatment goes well.

Sending hugs!

Michelle 

mrpmrp said:

2nd Opinion?

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! 

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.

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 not 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

derMaus said:

I believe Grade 3 is, de

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.

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. 

mrpmrp said:

2nd Opinion?

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! 

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!