Diagnosed with Endometrial Cancer

24

Comments

  • pato58
    pato58 Member Posts: 120 Member
    Corgi Mum said:

    In the same boat, Alynn820

    Waiting impatiently for my hysterectomy (robotic) on September 20th. Don’t know the cancer type or stage until then. My CA125 blood work came back normal, so I’m hoping that is a very positive sign.  Since the D&C/hysteroscopy I have been incredibly tired. Anyone else experience this?

    Thank you!  So happy to have found this forum. 

    Hi Corgi Mum

    Your D&C/hysteroscopy report should specify your grade and type of cancer.
    You should ask your Gyn who performed the test.
    It is actually importanrt to know this. I actually had a robotic too with fery few issues.
    Please, let us know :)

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    Corgi Mum said:

    In the same boat, Alynn820

    Waiting impatiently for my hysterectomy (robotic) on September 20th. Don’t know the cancer type or stage until then. My CA125 blood work came back normal, so I’m hoping that is a very positive sign.  Since the D&C/hysteroscopy I have been incredibly tired. Anyone else experience this?

    Thank you!  So happy to have found this forum. 

    Corgi Mum

    Hi Corgi Mum, Your fatigue may be related to the stress of dealing with the diagnosis of cancer. I also think fatigue  a symptom of your body having cancer. 

    Lori

  • MugsBugs
    MugsBugs Member Posts: 111 Member
    edited August 2018 #24
    Corgi Mum said:

    In the same boat, Alynn820

    Waiting impatiently for my hysterectomy (robotic) on September 20th. Don’t know the cancer type or stage until then. My CA125 blood work came back normal, so I’m hoping that is a very positive sign.  Since the D&C/hysteroscopy I have been incredibly tired. Anyone else experience this?

    Thank you!  So happy to have found this forum. 

    Corgi Mum - they should be

    Corgi Mum - they should be able to tell you the type of cancer after the D&C/hysteroscopy.  My doctor gave me this information then passed me along to the Gyno/Oncologist.  Your tiredness maybe related to the anesthesia as well as stress.  Different people react differently to the anesthesia some people are really sensitive.  If it doesn't resolve itself in the next few days I would give your Dr. a call.  I think having a low CA125 is a good sign.  Mine was 18 and I had grade 1 stage 1 endometrial cancer which if you have to have cancer its the best.  After the hysterectomy I am done - except for montoring.  Think positive!  Waiting is hard but try to keep yourself busy and not dwell on it.

     

    Good luck and hope you feel better!

  • Unknown
    edited September 2018 #25
    alynn820 said:

    Update

    I met with the Surgeon on Monday. My surgery is set for 09/05/2018. They will remove all my lady parts and inject dye into me to find what lymph nodes they should take. My surgery will be robotic/laproscopically. I'll stay overnight. I've discussed with him the fear of swelling from removing the lymph nodes and fear of blood clots. But I do trust him. What I know of the cancer is that the cell is a grade 2 and it is an adenocarcinoma and only showing up in the lining. 

    Surgery day?

    New here, came across your post and it looks like today was your surgery day. Hope it went well and you aren’t feeling too out of it. I’ll be watching for your post-op posts. <3

  • Sherbear6
    Sherbear6 Member Posts: 6
    edited July 2019 #26
    Was just diagnosed

    I was just diagnosed last week with stage one Endometrial Cancer.  I am anxiously waiting to hear from the GYN oncologist. It’s been almost a week when I was told it would only take 72 hours. I already called my GYN and they are trying to move things all along. I haven’t told a lot of people yet however some of them I have told seem to think it’s their need to give me all kinds of advice. To tell you the truth the advice is  becoming more overwhelming than the diagnosis. My GYN seems to think that I will have a hysterectomy  and that will ratify the cancer. What I wanna know is what are the chances of it coming back? How long will I be off my feet with my hysterectomy. Meaning how long will I need to stay in bed, how long will I not be able to drive, when will I be able to go back to work? I know these are all answers the doctor will be able to give me I just wish I had the answers now.

  • mcarp0117
    mcarp0117 Member Posts: 19 Member
    edited July 2019 #27
    Sherbear6 said:

    Was just diagnosed

    I was just diagnosed last week with stage one Endometrial Cancer.  I am anxiously waiting to hear from the GYN oncologist. It’s been almost a week when I was told it would only take 72 hours. I already called my GYN and they are trying to move things all along. I haven’t told a lot of people yet however some of them I have told seem to think it’s their need to give me all kinds of advice. To tell you the truth the advice is  becoming more overwhelming than the diagnosis. My GYN seems to think that I will have a hysterectomy  and that will ratify the cancer. What I wanna know is what are the chances of it coming back? How long will I be off my feet with my hysterectomy. Meaning how long will I need to stay in bed, how long will I not be able to drive, when will I be able to go back to work? I know these are all answers the doctor will be able to give me I just wish I had the answers now.

    I too was just diagnosed May 15th with biopsy done by GYN.  GYN also thought surgery alone would be all I needed since initial biopsy showed Grade 1 and I had Full Hysterectomy and BSO on June 13th. It was laproscopic and I was able to move around and drive after 2 weeks since I no longer needed the pain meds. Post surgery biopsy showed a little more invasive than initial biopsy and I was contacted by local oncology tumor board on June 24th stating I should have been referred to GYN onclogist to handle this from the beginning. I was referred to MD Anderson and had first appt. on July 9th and they are rerunning all pathology and I'm having CT scan next week.  Not trying to scare you in anyway, but if I knew what I know now, I would have asked for referral to GYN oncologist from the beginning so they could have done  surgery and staging all at one time. I'm now pending another procedure to test lymph nodes, but I'm only 5 weeks from hysterectomy so not sure when this will be done. I'm in Louisiana, but only 2.5 hours from Houston, TX so that's why MD Anderson is where I'm going.

  • mamlicsw
    mamlicsw Member Posts: 33

    My mantra is be positive and realistic.  It's possible that you are 1a and will need only surgery.  If not, you will face that and get more information to make your best decisions.  I did not feel much pain or even much discomfort after the surgery.  Main problem was fatigue.  l also started driving after about 3 weeks or so.  Retuned to my work on a reduced schedule at 5 weeks.  And I'm 68 years old so you may very well do better, if you're younger!

  • Forherself
    Forherself Member Posts: 697 Member
    mcarp0117 said:

    I too was just diagnosed May 15th with biopsy done by GYN.  GYN also thought surgery alone would be all I needed since initial biopsy showed Grade 1 and I had Full Hysterectomy and BSO on June 13th. It was laproscopic and I was able to move around and drive after 2 weeks since I no longer needed the pain meds. Post surgery biopsy showed a little more invasive than initial biopsy and I was contacted by local oncology tumor board on June 24th stating I should have been referred to GYN onclogist to handle this from the beginning. I was referred to MD Anderson and had first appt. on July 9th and they are rerunning all pathology and I'm having CT scan next week.  Not trying to scare you in anyway, but if I knew what I know now, I would have asked for referral to GYN oncologist from the beginning so they could have done  surgery and staging all at one time. I'm now pending another procedure to test lymph nodes, but I'm only 5 weeks from hysterectomy so not sure when this will be done. I'm in Louisiana, but only 2.5 hours from Houston, TX so that's why MD Anderson is where I'm going.

    Welcome mcarp0117

    So sorry to read about your experience.  Hopefully your nodal biopsy will be normal.  It is upsetting.  80% of women with endometrioid type are 1A but you don't know unless some lymph nodes are taken.  You are going to one of the best centers for this disease, so you are now in good hands.  

  • mcarp0117
    mcarp0117 Member Posts: 19 Member
    mamlicsw said:

    My mantra is be positive and realistic.  It's possible that you are 1a and will need only surgery.  If not, you will face that and get more information to make your best decisions.  I did not feel much pain or even much discomfort after the surgery.  Main problem was fatigue.  l also started driving after about 3 weeks or so.  Retuned to my work on a reduced schedule at 5 weeks.  And I'm 68 years old so you may very well do better, if you're younger!

    Yes to fatigue!! I went back

    Yes to fatigue!! I went back to work this week 4 weeks post laparoscopic hysterectomy and BSO and I’m so exhausted by the end of the day!! Hoping this will improve some until I start treatments if needed. 

  • MAbound
    MAbound Member Posts: 1,164 Member
    mcarp0117 said:

    Yes to fatigue!! I went back

    Yes to fatigue!! I went back to work this week 4 weeks post laparoscopic hysterectomy and BSO and I’m so exhausted by the end of the day!! Hoping this will improve some until I start treatments if needed. 

    Still healing

    While laparoscopic surgery makes recovery so much easier than open surgery, you have to remember there is still the same amount of healing that needs to occur internally. It's still major surgery and it's going to take 6-8 weeks for healing. If its exhausting to go back to work after 4 weeks, I'd talk to your employer about working from home or working part days for a bit yet. Rest is so important to healing and being ready for treatment if that's in the works for you.

  • mcarp0117
    mcarp0117 Member Posts: 19 Member
    I was trying to come back to

    I was trying to come back to get a few weeks in before I may have to go out again for the lymph node surgery and treatments.  My plan is to try and work through everything taking days as needed.   I'm a social worker in 3 dialysis units and so not real strenuous work, but after rounding and sitting at computer all day it seems I'm wearing down fast.  I don't think I'm eating enough either, so trying to improve that.  I'm getting lightheaded and having some vision issues during the day that comes and goes-anybody experience this?  I've also read that fatigue after hysterectomy without the cancer element can take a long time to resolve.  I'm pretty boring according to my husband and son when I just want to nap after getting home LOL, so trying to make myself get up and do some things with them each day as well. It is summertime and I have an active 15 year old son.  Thanks again for all of the shared advice. Glad to talk to others who are going through similar things.

  • Forherself
    Forherself Member Posts: 697 Member
    mcarp0117 said:

    I was trying to come back to

    I was trying to come back to get a few weeks in before I may have to go out again for the lymph node surgery and treatments.  My plan is to try and work through everything taking days as needed.   I'm a social worker in 3 dialysis units and so not real strenuous work, but after rounding and sitting at computer all day it seems I'm wearing down fast.  I don't think I'm eating enough either, so trying to improve that.  I'm getting lightheaded and having some vision issues during the day that comes and goes-anybody experience this?  I've also read that fatigue after hysterectomy without the cancer element can take a long time to resolve.  I'm pretty boring according to my husband and son when I just want to nap after getting home LOL, so trying to make myself get up and do some things with them each day as well. It is summertime and I have an active 15 year old son.  Thanks again for all of the shared advice. Glad to talk to others who are going through similar things.

    Lightheadedness and vision

    can be due to low blood sugar.   And then there is the stress of your new diagnosis.  No wonder you are worn out.  Still working too.  Boring?   Do your husband and son realize you have just had a traumatizing event happen to you?   Peoples reaction to your diagnosis will be diverse.   I found other people hard to deal with, their emotions and questions.  Questions that I could. not answer.   It sounds like you spend most of your life taking care of others.  Time to make time for you, in my opinion.

  • MAbound
    MAbound Member Posts: 1,164 Member
    mcarp0117 said:

    I was trying to come back to

    I was trying to come back to get a few weeks in before I may have to go out again for the lymph node surgery and treatments.  My plan is to try and work through everything taking days as needed.   I'm a social worker in 3 dialysis units and so not real strenuous work, but after rounding and sitting at computer all day it seems I'm wearing down fast.  I don't think I'm eating enough either, so trying to improve that.  I'm getting lightheaded and having some vision issues during the day that comes and goes-anybody experience this?  I've also read that fatigue after hysterectomy without the cancer element can take a long time to resolve.  I'm pretty boring according to my husband and son when I just want to nap after getting home LOL, so trying to make myself get up and do some things with them each day as well. It is summertime and I have an active 15 year old son.  Thanks again for all of the shared advice. Glad to talk to others who are going through similar things.

    Put yourself first

    I agree with forherself. What you are going through is a big deal and you really need to put taking care of yourself first so you can get through to the finish line. This is a marathon not a sprint, so not overdoing by trying to keep up with your normal routine and the needs of others is really important. Many need to keep working through treatment for insurance and financial reasons, but beyond that others need to cut back on what they are used to from you and step up to let you rest so you can heal and be in the best place you can be for whatever comes next. Take those naps and don't feel guilty for what you aren't doing. At 15, there is a lot your son can do for you and he'll be better for the experience when he's responsible for himself in the not so distant future.

  • BluebirdOne
    BluebirdOne Member Posts: 552 Member
    mcarp0117 said:

    I was trying to come back to

    I was trying to come back to get a few weeks in before I may have to go out again for the lymph node surgery and treatments.  My plan is to try and work through everything taking days as needed.   I'm a social worker in 3 dialysis units and so not real strenuous work, but after rounding and sitting at computer all day it seems I'm wearing down fast.  I don't think I'm eating enough either, so trying to improve that.  I'm getting lightheaded and having some vision issues during the day that comes and goes-anybody experience this?  I've also read that fatigue after hysterectomy without the cancer element can take a long time to resolve.  I'm pretty boring according to my husband and son when I just want to nap after getting home LOL, so trying to make myself get up and do some things with them each day as well. It is summertime and I have an active 15 year old son.  Thanks again for all of the shared advice. Glad to talk to others who are going through similar things.

    Self care is #1. Please put yourself first

    as no one else will. Even boring bodies need time and rest to heal.  :-)  You had major surgery and are facing more. We women have a habit of putting everyone first besides ourselves, to the detriment of our health and well being. If this isn't the time for your family to put your needs, your health, your rest first, when is it? The world needs to revolve around you, not around them, or your job.  We are here for you. 

    Denise 

  • elainegint
    elainegint Member Posts: 11
    Just Diagnosed. High Anxiety.

    I am 68 and was just diagnosed. Have first oncologist appointment next week. BUt I am crazy with aniety. I live alone , no significant other or family, so I don't know how I am going to deal with all this, especially re: the recovery --- how difficult and painful, how long, how much help I will need. I don't know if I can get financial assistance or disability through Social Security or other organization  while I am recovering.  So much angst. Any input or advice would be very welcome.

  • mcarp0117
    mcarp0117 Member Posts: 19 Member

    Just Diagnosed. High Anxiety.

    I am 68 and was just diagnosed. Have first oncologist appointment next week. BUt I am crazy with aniety. I live alone , no significant other or family, so I don't know how I am going to deal with all this, especially re: the recovery --- how difficult and painful, how long, how much help I will need. I don't know if I can get financial assistance or disability through Social Security or other organization  while I am recovering.  So much angst. Any input or advice would be very welcome.

    Glad you reached out for support

    Sorry social work mode kicking in-are you still working?  Already getting Social Security Retirement? Health insurance?  These are things that would need to be known to see what you may qualify for.  Also some things are state dependent, so depending on what state you are in there may be more or less benefits. Definitely post hysterectomy surgery I needed help-my parents came for the first couple days because my husband had to go back to work.  I have a 15 year old son as well, so he's helped some between his teenage activities.  I'm pending another surgery to remove lymph nodes for testing and potentially some treatments so not sure how my body will react to those.  Do you have any close friends who can go to appt.'s with you?  I did find it kind of overwhelming and my mind was all over the place, so I was glad my husband was with me. I was glad my GYN ONC wrote things out for me so I could review and process once I got home.  Anyway, if I can help with anything along the way let me know. I am a medical social worker in dialysis so I deal with insurance and benefit stuff, but I'm no expert. You definitely want to talk with the financial insurance team at your cancer center-they can be of great help to let you know what may be available in your state.

  • cmb
    cmb Member Posts: 905 Member
    mcarp0117 said:

    Glad you reached out for support

    Sorry social work mode kicking in-are you still working?  Already getting Social Security Retirement? Health insurance?  These are things that would need to be known to see what you may qualify for.  Also some things are state dependent, so depending on what state you are in there may be more or less benefits. Definitely post hysterectomy surgery I needed help-my parents came for the first couple days because my husband had to go back to work.  I have a 15 year old son as well, so he's helped some between his teenage activities.  I'm pending another surgery to remove lymph nodes for testing and potentially some treatments so not sure how my body will react to those.  Do you have any close friends who can go to appt.'s with you?  I did find it kind of overwhelming and my mind was all over the place, so I was glad my husband was with me. I was glad my GYN ONC wrote things out for me so I could review and process once I got home.  Anyway, if I can help with anything along the way let me know. I am a medical social worker in dialysis so I deal with insurance and benefit stuff, but I'm no expert. You definitely want to talk with the financial insurance team at your cancer center-they can be of great help to let you know what may be available in your state.

    Presurgery

    I agree with mcarp0117 that you should reach out to the financial insurance team at the cancer center to help you learn about the financial assistance options that may be available to you.

    If you don't have someone who can come with you to your appointments with the doctors, plan on recording the conversations. While my sister did come with me to meetings, I also recorded my meetings so that I could listen to them later to pick up on things I might have missed initially.

    Just ask the doctor, nurse, etc. if it's okay for you to record them before you begin. No one ever had a problem with me doing this. On an iPhone there is a built in app called Voice Memos. I'm not sure if an android phone comes with a preinstalled app for recording or if you need to download a new app.

    I've responded in a separate post about I managed after surgery living alone.

  • MAbound
    MAbound Member Posts: 1,164 Member

    Just Diagnosed. High Anxiety.

    I am 68 and was just diagnosed. Have first oncologist appointment next week. BUt I am crazy with aniety. I live alone , no significant other or family, so I don't know how I am going to deal with all this, especially re: the recovery --- how difficult and painful, how long, how much help I will need. I don't know if I can get financial assistance or disability through Social Security or other organization  while I am recovering.  So much angst. Any input or advice would be very welcome.

    This is always so scary and

    This is always so scary and overwhelming at diagnosis. The trick is to take a breath, slow your mind down and take things one step at a time. Racing ahead without knowing any specifics will only add to the anxiety you are dealing with. This cancer and its treatment has so many variables it just doesn't pay to focus on anything but the next step. For you that is getting settled with a gyn oncologist and finding out what tests he/she wants before he/she decides on what kind of surgery you need. You won't know for sure about any treatment until they test the tissue they remove during surgery so that they can accurately type your cancer and know what stage you are.

    All of the waiting in the beginning is always the hardest. The best thing to do now in preparation for surgery is to shop, cook, and clean so it won't be an issue for you when you are recovering. It helps with any nervous energy you may have now, too. Do not research on line. You have too many unknowns and you'd only needlessly scare yourself.

    You will also need to talk to friends if you have no family, because there will be times you need someone to drive you home from a procedure or your surgery. If that is not possible, I believe there are ride services that you can look into for that purpose. My daughter lives across the river from Manhattan and lined up a limo service to get her home after losing an ovary. I was with her, but it was the best idea because you feel every bump on the ride home. (A belly band or pillow is critical for the ride home after surgery!)

    What your recovery will be like depends a lot on which type of surgery you end up having. Most have robotic surgery, but I had the full open belly and came home with a foley catheter and a drainage tube. How you'd manage under those circumstances probably would depend on your living environment, but the hospital would help you if you had problems like that to deal with before they discharge you. I had a visiting nurse come in initially, but I really didn't need it. The biggest limitation was that I couldn't drive or do any lifting. If you live where groceries can be delivered to you, that was a big help for my daughter while she was recovering from her surgery and I was gone (I was in the midst of selling my house 500 miles away when that happened to her).

    If you have other questions or concerns as time goes on and you learn more, don't hesitate to ask. Whatever specifics about your biopsy, overall health, support system, etc you can share with us would help. Feel free to start a new thread to introduce yourself and do, please, fill out the about me page and update it as you go along. It helps us to be able to click on your name to refresh our memories about you as time goes on.

     

  • Keeka
    Keeka Member Posts: 1
    edited July 2019 #40
    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 !!

  • cmb
    cmb Member Posts: 905 Member
    Welcome

    Keeka,

    I'm so sorry that your treatment process has hit so many bumps along the way. Side effects from treatment can vary so much amongst women. While I made it through chemo on schedule, I did need a couple of blood transfusions, extra antiemetics and fluid transfusions to complete the four rounds of my "second phase" chemo.

    I hope that the remaining chemo treatments go more smoothly for you.

    Now that you've joined the board, please let us know how things go and if you have any questions. As you've probably already read, issues come up even post treatment and others can offer suggestions or advice on how they dealt with these matters.

    Since you've given such a good summary of what's occurred to date, I'd also like to suggest that you copy this information to your "profile" page. Sometimes we lose track of all of a member's experiences and having it as part of the profile saves you from having to repeat it in later posts. You can click on my user name under my photo to see an example.