Diagnosed with Endometrial Cancer

13

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,999 Member
    Keeka, welcome and please let

    Keeka, welcome and please let us know how you do with your treatment.

    I am glad you have found us and now you know you are not alone. This is a place you can ask anything.  I am concerned that it seemed your doctor wasn't tracking you better or concerned with your side effects.  

    I addition to cmb's suggestion of updating your page, maybe if you could start a new thread by just copying and pasting what you wrote, others can chime in.  I just don't want you to get lost on an old post. 

     

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Welcome Keeka.  So glad you

    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

  • Forherself
    Forherself Member Posts: 689 Member
    Welcome Keeka

    Your story is not boring.  I don't know why but each story is interesting to me.   Each one is different but we all learn by sharing stories.  So thank you for adding yours.  This is a wonderful place to talk about your journey.  Especially since women here understand what you are feeling .

  • Soup52
    Soup52 Member Posts: 908 Member
    Welcome Keeka! Keep us posted

    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.

  • jan9wils
    jan9wils Member Posts: 179 Member
    Welcome new people! Although

    Welcome new people! Although it has been five years since I was first diagnosed, I remember well the anxiety that goes along with all the questions and what ifs? while awaiting results and further testing or treatments. It is difficult to quiet your mind and keep panic at bay. Reading your stories here remind me how incredibly strong women are, even though we don't always think that we are. MABound is spot-on when she says this is a marathon, not a sprint. 

  • mcarp0117
    mcarp0117 Member Posts: 19 Member
    edited July 2019 #47

    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. 

  • Forherself
    Forherself Member Posts: 689 Member
    mcarp0117 said:

    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. 

    Are you at MD Anderson?

    I wuoud just do what they recommend. If you have some serous cells, they can skew your prognosis.   Be prepared to do all you can to make sure you don't have a recurrence.  Confined to the uterus would be good.   I think the node surgery will be much easier than the hysterectomy.  

     

     

  • mcarp0117
    mcarp0117 Member Posts: 19 Member
    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. 

  • Feelingalone74
    Feelingalone74 Member Posts: 243
    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. 

    Both 44 years old

    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
    Kaleena Member Posts: 2,064 Member
    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

    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

  • Feelingalone74
    Feelingalone74 Member Posts: 243
    alynn820 said:

    Thank you Janaes!

    Thank you Janaes!

     You have come to the right

     You have come to the right place Alynn820. The ladies on here are amazing! They have given me so much support, advice and encouragement. 

    I am 44 and was diagnosed with endometrial cancer in April. I too thought I was way to young. I felt great so I didnt understand how it could be true.The only symptom I had was irregular bleeding and they kept telling me I was likely premenopausal and my hormones were changing due to my age. I so wish I had sought another opinion but went to the same midwife for 20 years and felt she knew me well. I trusted her So I didnt question her when she told me this. I so wish she had referred me to a gyno before it was too late. 

    We are all here for you!

    Thinking of you and sending gentle hugs!

    Michelle 

     

  • Feelingalone74
    Feelingalone74 Member Posts: 243
    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

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

    Sending hugs!

    Michelle 

  • mrpmrp
    mrpmrp Member Posts: 1
    edited August 2019 #54
    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! 

  • MAbound
    MAbound Member Posts: 1,164 Member
    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! 

    Type?

    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
    derMaus Member Posts: 558
    MAbound said:

    Type?

    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.

    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.

  • Donna Faye
    Donna Faye Member Posts: 427
    Old veteran here

    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
    Armywife Member Posts: 449 Member

    Old veteran here

    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

    Donna

    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.

  • MAbound
    MAbound Member Posts: 1,164 Member
    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:/

    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. 

  • Donna Faye
    Donna Faye Member Posts: 427
    Armywife said:

    Donna

    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.

    Thanks

    I hope I do! 

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933
    edited August 2019 #61
    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! 

    Right Track

    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!