Adenocarcinoma late diagnosis

grace_of_god
grace_of_god Member Posts: 31
in Uterine/Endometrial Cancer #1

Hi fellow patients.  Glad to find this here to ask questions and talk about this without feeling like I am wearing my friends and family out talking about it.  My symtoms started almost 4 years ago with right abdominal pain and a little bleeding when I was very active.  Thought it felt like where an ovary would be.  Went to have it checked and did pelvic, sonogram to the right groin and an mri.  No results.  Gyno said everything is the right size and in the right place.   I have some chronic health problems and said well I guess this is just another old age wear and tear thing.   Put up with it till 6 months ago pain suddenly spread across my whole abdomen and I had a fairly significant bleed.  Back I went and did a pelvic, a vaginal sonogram, an inconclusive biopsy (which hurt like the dickens!) then a d&c with the photo shoot.  Result was grade 2.  I'm scheduled on 5/17 for a robotic assisted hysterectomy and the doc was up in the air about removing the lymph nodes.  My biggest concern is knowing this has been there over 3 years and with the discomfort I've had these last six months well you know where I'm going.  Afraid it's had awhile to take hold.  Talk to me ladies!  and thanks :) 

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Comments

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    #2
    Gynn/Onc

    My advice is if you don’t already have a gyn/onc doing your surgery run as fast as you can to find one to do your surgery.  Preferably one at a major cancer Center. Staging really can’t be done until after surgery. Welcome to the group nobody wants to belong to.  You’ll find great sisters here to support you all along your journey  

     

  • Kathy G.
    Kathy G. Member Posts: 245 Member
    #3
    Hi & welcome!

    Hi & welcome!

     

    I agree 100% w/Cheese as you want a specialist for this as well as the best you can get.

     

    I was fortunate having had an early stage & grade cancer, but I had symptoms for a couple years before diagnosis. Thankfully mine was the slow growing type of cancer!

     

    You have taken the right steps. Waiting is the hardest part...just produces so much anxiety!

     

    Let us know how you make out!

  • MugsBugs
    MugsBugs Member Posts: 111 Member
    #4
    Agree with the ladies about GYN/ONC

    Sorry you are here!

    If you don't have a Gyn/Onc - find one - you want someone who deals with our kind of cancer.  Also ask your doctor for a CT scan with Contrast (Upper and Lower).  The CT scan provides a baseline before treatment!  My doctor told me the CT scan was to ensure nothing else was affected and if it was it was better to take care of it in one surgery rather than 2.  Also, the baseline can be used in case of suspected recurrence. Another test, if you haven't already gotten one is the CA125 blood test.  This also acts as a baseline tumor marker.  It is not accurate for everyone but it is important to have a baseline before you have surgery.

    Again I am sorry you are here and let us know how you are doing!

  • grace_of_god
    grace_of_god Member Posts: 31
    #5
    CheeseQueen57 said:

    Gynn/Onc

    My advice is if you don’t already have a gyn/onc doing your surgery run as fast as you can to find one to do your surgery.  Preferably one at a major cancer Center. Staging really can’t be done until after surgery. Welcome to the group nobody wants to belong to.  You’ll find great sisters here to support you all along your journey  

     

    Gyn/Onc

    Thanks CheeseQueen.  Yes,my surgeon is a specialist ....he's the director for the gynecology onconlogy program at Commonwealth Health in the Scranton, Pa. area.  He specializes in minimaly invasive and advanced robotic surgery.  Seems like a good guy to have helping me!

  • grace_of_god
    grace_of_god Member Posts: 31
    edited May 2018 #6
    Kathy G. said:

    Hi & welcome!

    Hi & welcome!

     

    I agree 100% w/Cheese as you want a specialist for this as well as the best you can get.

     

    I was fortunate having had an early stage & grade cancer, but I had symptoms for a couple years before diagnosis. Thankfully mine was the slow growing type of cancer!

     

    You have taken the right steps. Waiting is the hardest part...just produces so much anxiety!

     

    Let us know how you make out!

    Greetings

    Thanks for your response Kathy G.  and the waiting IS really hard.  I'm glad yours was a slow growing type!  Hoping against hope. 

  • grace_of_god
    grace_of_god Member Posts: 31
    #7
    MugsBugs said:

    Agree with the ladies about GYN/ONC

    Sorry you are here!

    If you don't have a Gyn/Onc - find one - you want someone who deals with our kind of cancer.  Also ask your doctor for a CT scan with Contrast (Upper and Lower).  The CT scan provides a baseline before treatment!  My doctor told me the CT scan was to ensure nothing else was affected and if it was it was better to take care of it in one surgery rather than 2.  Also, the baseline can be used in case of suspected recurrence. Another test, if you haven't already gotten one is the CA125 blood test.  This also acts as a baseline tumor marker.  It is not accurate for everyone but it is important to have a baseline before you have surgery.

    Again I am sorry you are here and let us know how you are doing!

    Yes my doc is an Gyn/Onc!

    Hey there MugsBugs!  Hmmm I've wondered about a CT scan.  I'm going to call the office tomorrow and ask.  Also will ask about the CA125.  Having the baseline for comparison makes sense.  Thanks for the tips!

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    #8
    Lymph node removal

    The more lymph nodes removed including the para aortic node will increase the likelihood of knowing weather or not the cancer has spread. It is not uncommon to remove 20 + nodes and removal of the omentum (the web like structure that keeps your organs all in place).  Years ago they use to take out just a few nodes and declare the cancer hadn’ t spread. Praying everything goes well! 

  • derMaus
    derMaus Member Posts: 558 Member
    #9
    Let me second that.

    Let me second that. I have an agressive cancer - Grade 3 - which my surgeon knew going in. There was a slight possibility of a robotic surgery but after she got in there it was a TAH (as I'd expected). She took 37 lymph nodes and only one in the pelvic region showed cancer, tipping me into Stage III. HOWEVER, when my mets arose less than 6 months after surgery, they were in the lymph nodes right above the cutoff point for those that had already been taken out. I'm a fan of lymph node removal, myself, but then I haven't had any side effects either so it's easy for me to say that. 

  • Tamlen
    Tamlen Member Posts: 343 Member
    #10
    grace_of_god said:

    Yes my doc is an Gyn/Onc!

    Hey there MugsBugs!  Hmmm I've wondered about a CT scan.  I'm going to call the office tomorrow and ask.  Also will ask about the CA125.  Having the baseline for comparison makes sense.  Thanks for the tips!

    Get that CT scan

    I was surgically staged at Stage 2 after my hysterectomy. After pushing repeatedly for a CT scan (my gyn onc doesn't routinely do them before surgery), and it finally getting done due to my radiation onc, I turned out to be Stage 4B. So the entire treatment protocol changed and I was very late to be starting chemo post-surgery. Get those results as early as you can so you have a full picture of what you're dealing with and a treatment plan that goes with it.

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    #11
    Lymph nodes

    derMaus, I worry about the women who are staged Stage/Grade 1 and they don’ t have many nodes removed for pathology and then a year later they experience mets to other parts of their bodies. Your Gyn/Onc was very smart to check your nodes extensively. I have lymphedema but it is manageable with compression hosiery. I will never complain about the number of lymph nodes my Gyn/Onc surgeon removed! I also worry about women that don’ t get their omentum removed as that is another area where cancer seeds itself. 

    Lori

  • Kera
    Kera Member Posts: 3
    #12
    Hello! I am a 43 year old and

    Hello! I am a 43 year old and I was recently diagnosed this week with the exact type of cancer. My doctor is hopeful that theyve caught this early and they will be able to get it all with surgery. I have the endemetrial adercarcinoma (msp.) and of course, they won’t know until they do my surgery where I am with this. I am trying to stay positive that I can beat this. My doctor was very hopeful, but I’ve read so many stories about of where the hysterectomy is performed and they find it is worse than they thought. So, it’s a tough place waiting and waiting. I should get my surgery closer to June 10th. I think. i will meet my oncologist on Thursday May 10. I hope I can come Back and read this thread and keep up with your story. I only use my phone to read and do this site. I don’t have internet at home but I do where I work.  Praising God that they truly believe they’ve caught it early but yet nervous, too. They are shocked by my age. Most women are way older. Very thankful for these boards and the chat room. Seems like many on here become family. When they lose one of their online survivors, they all mourn the loss. That is very uplifting and heartwarming to see. 

    Take care  

    Kera 

     

     

     

     

     

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    #13
    Kera said:

    Hello! I am a 43 year old and

    Hello! I am a 43 year old and I was recently diagnosed this week with the exact type of cancer. My doctor is hopeful that theyve caught this early and they will be able to get it all with surgery. I have the endemetrial adercarcinoma (msp.) and of course, they won’t know until they do my surgery where I am with this. I am trying to stay positive that I can beat this. My doctor was very hopeful, but I’ve read so many stories about of where the hysterectomy is performed and they find it is worse than they thought. So, it’s a tough place waiting and waiting. I should get my surgery closer to June 10th. I think. i will meet my oncologist on Thursday May 10. I hope I can come Back and read this thread and keep up with your story. I only use my phone to read and do this site. I don’t have internet at home but I do where I work.  Praising God that they truly believe they’ve caught it early but yet nervous, too. They are shocked by my age. Most women are way older. Very thankful for these boards and the chat room. Seems like many on here become family. When they lose one of their online survivors, they all mourn the loss. That is very uplifting and heartwarming to see. 

    Take care  

    Kera 

     

     

     

     

     

    I'm so sorry you have to go

    I'm so sorry you have to go through this, Kera, but please don't get ahead of yourself.  Many, many women come here looking for hope, answers, and camaraderie and we welcome them all.  But a LOT of them find out, especially if they're younger like you, that they have a low stage, low-grade cancer and it is removed with the hysterectomy.  Usually, they bid us adieu and they go on with their lives.  The ones that tend to stay here have high grade, late stage or a recurrence so it skews the numbers and makes it look like everyone has those - they don't!!  

    Keep us posted on your progress!!

    Love,

    Eldri

    PS. You're right, we do become a family of sorts and it hurts like hell to see someone fight so long and hard and then not make it. Cry

  • Kera
    Kera Member Posts: 3
    #14
    Thanks EZ Living! I just was

    Thanks EZ Living! I just was uncertain when I read NorthWoodsGirl’s response. Like about not removing the lymphnodes! And the Omentum (whatever that is). I dont want to be fearful, I am hopeful they’ve probably caught it early. I just concerned about it coming back in Other forms. When I see the oncologist, I have lots of questions. I hope he can answer. He is in Evansville indiana at Deaconess Hospital, but is affiliated with MD Anderson through Texas (cancer research). So, I am blessed that I am seeing the cream of the crop! 

    Kera 

  • MugsBugs
    MugsBugs Member Posts: 111 Member
    #15
    Kera said:

    Hello! I am a 43 year old and

    Hello! I am a 43 year old and I was recently diagnosed this week with the exact type of cancer. My doctor is hopeful that theyve caught this early and they will be able to get it all with surgery. I have the endemetrial adercarcinoma (msp.) and of course, they won’t know until they do my surgery where I am with this. I am trying to stay positive that I can beat this. My doctor was very hopeful, but I’ve read so many stories about of where the hysterectomy is performed and they find it is worse than they thought. So, it’s a tough place waiting and waiting. I should get my surgery closer to June 10th. I think. i will meet my oncologist on Thursday May 10. I hope I can come Back and read this thread and keep up with your story. I only use my phone to read and do this site. I don’t have internet at home but I do where I work.  Praising God that they truly believe they’ve caught it early but yet nervous, too. They are shocked by my age. Most women are way older. Very thankful for these boards and the chat room. Seems like many on here become family. When they lose one of their online survivors, they all mourn the loss. That is very uplifting and heartwarming to see. 

    Take care  

    Kera 

     

     

     

     

     

    Kera -Think Positive

    Kera - chances are that your cancer is treatable with surgery.  Try not to think about the 'whats' right now.  My cancer was caught very early so I am one of the lucky ones.  Statistics are on your side.  43 is really young but none of us really knows when our cancers actually started. We probably all had symptoms and just ignored them (I know I did).  I recommend you read the thread "What do you wish someone had told you?" (https://csn.cancer.org/node/314593).  This thread started after I was diagnosed and had surgery but I still found it enlightening and very helpful.

    Good luck to you and let us know how you are doing!

  • grace_of_god
    grace_of_god Member Posts: 31
    #16
    Tamlen said:

    Get that CT scan

    I was surgically staged at Stage 2 after my hysterectomy. After pushing repeatedly for a CT scan (my gyn onc doesn't routinely do them before surgery), and it finally getting done due to my radiation onc, I turned out to be Stage 4B. So the entire treatment protocol changed and I was very late to be starting chemo post-surgery. Get those results as early as you can so you have a full picture of what you're dealing with and a treatment plan that goes with it.

    CT Scan

    Wow Tamlen, that's a pretty powerful story.  Sounds like they should have done it earlier!  I hope you've done well with treatment.  

     

  • grace_of_god
    grace_of_god Member Posts: 31
    #17
    Northwoodsgirl said:

    Lymph node removal

    The more lymph nodes removed including the para aortic node will increase the likelihood of knowing weather or not the cancer has spread. It is not uncommon to remove 20 + nodes and removal of the omentum (the web like structure that keeps your organs all in place).  Years ago they use to take out just a few nodes and declare the cancer hadn’ t spread. Praying everything goes well! 

    Lymph Nodes

    It sounds like removing the nodes is extremely important and I'm going to have this discussion with my surgeon.  

     

  • Armywife
    Armywife Member Posts: 451 Member
    #18
    Northwoodsgirl said:

    Lymph nodes

    derMaus, I worry about the women who are staged Stage/Grade 1 and they don’ t have many nodes removed for pathology and then a year later they experience mets to other parts of their bodies. Your Gyn/Onc was very smart to check your nodes extensively. I have lymphedema but it is manageable with compression hosiery. I will never complain about the number of lymph nodes my Gyn/Onc surgeon removed! I also worry about women that don’ t get their omentum removed as that is another area where cancer seeds itself. 

    Lori

    I'm one of those

    My cancer was thought to be Stage I Grade I, and after surgery/pathology it was Stage IVB, Grade 2.  I only had two sentinel lymph nodes removed - one pelvic and one para-aortic.  Both were clear, as were my cervix and ovaries.  I had a "very unusual presentation" so who can know?  My scan was clear after chemo in October, but I'm going to ask for another scan soon.  It's really hard to look back and wonder what should have been done.

  • grace_of_god
    grace_of_god Member Posts: 31
    #19
    Armywife said:

    I'm one of those

    My cancer was thought to be Stage I Grade I, and after surgery/pathology it was Stage IVB, Grade 2.  I only had two sentinel lymph nodes removed - one pelvic and one para-aortic.  Both were clear, as were my cervix and ovaries.  I had a "very unusual presentation" so who can know?  My scan was clear after chemo in October, but I'm going to ask for another scan soon.  It's really hard to look back and wonder what should have been done.

    Wow that must be an

    Wow that must be an unpleasant shock to have your perceived grade/stage be more serious than first thought.  I'm realizing I need to be prepared that what I hear post sursery could be quite different than what I know now which is simply grade 2.  My best wishes to you for continued clear scans!

     

  • grace_of_god
    grace_of_god Member Posts: 31
    #20
    Hey, Kera!   I'm thinking of

    Hey, Kera!   I'm thinking of you with your appointment coming tomorrow and hope you get lots of answers and reassurance.  I'm a week out from surgery and feeling like I'm on a runaway rollercoaster!  Not the ride I'd prefer to be taking right now but not much choice eh?

     

     

  • grace_of_god
    grace_of_god Member Posts: 31
    #21
    No CT Scan for me!

    So I called my doc's office with 2 questions and got a no go on having a CT scan prior to surgery.  Simply stated "they don't do them".   My other question was about lymph nodes and they said they won't know about that till they get in there.  My surgeon is a big cheese, head of stuff so I'm trusting his judgement and taking this to mean that he doesn't find it necessary.  I'm very comfortable with him and rhe hospital plus his experience so I'm going to accept their game plan.  I admit I'm not feeling like insisting on them changing their routine for me.  I admit to feeling beat down and depressed.  I do have support though and I'm booked with a counselor for 1 week post surgery.

     

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