Odd/possible TMI question

I was just told last Wednesday I have uterine cancer. I see Gynecologic Oncology tomorrow. Back in May I was on a cruise. The last night of the cruise I was in horrible abdominal pain. I wound up going to the doc onboard the ship. When I got off the ship there was an ambulance waiting for me. I had an abdominal CT scan, transvaginal ultrasound and regular ultrasound. The only thing that they found was a 5.5 cm cyst on my right ovary, and that I was very constipated. The only reason they did the transverse u/s was because I was having pain on my left side and they were concerned with ovarian torsion. Luckily, there was no torsion. I stayed overnight in the hospital, and the doctor said there was no reason for me to be in that much pain. They made me feel really dumb. A few days later I'm back in the ER with horrible abdominal pain again. They do an x-ray and say you're terribly constipated, go home and drink this bottle of magnesium citrate. If that doesn't work buy another bottle and drink it. Needless to say it took me two bottles. A few days later I'm back in the ER once again for abdominal pain. I'm told the cyst is still there per another ultrasound, and that unless it ruptures no one can help me. I finally break down a month later and go to GYN. He tells me he thinks it's polycystic ovarian syndrome and gives me a depo provera shot. About 10 days after the shot I have the worst period of my life. For about 4 years I've been having abnormal periods with very large blood clots. I'm 46 now, and I just thought maybe perimenopause was the cause of my abnormal periods. Anyhow, after two weeks of not being able to leave the house because I was bleeding so heavily, I went back to the doc. He did a D&C the next day. I went back and saw him the next week, and he said I had hyperplasia and a polyp on my cervix which was noncancerous. My uterine samples, however, had to be sent to the University of Michigan. Then of course, I got the lousy news of my cancer. I'm wondering how all this was missed given all the tests I had. My doctor said my uterus was full of polyps and the size of a two month pregnancy. Is it possible being constipated blocked the radiologists from seeing the cancer and the thickened uterine wall? I just don't understand, and I'm upset about this because it should've been taken care of back at the beginning of May. Sorry this is so long. It's my first post and I'm scared. 

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Comments

  • MAbound
    MAbound Member Posts: 1,164 Member
    Sad Truth

    The sad truth is that there is currently no screening test for this cancer and you are not alone wondering why they weren't finding this sooner when you had the symptoms you had.

    I had pelvic ultrasounds twice in the two years before my cancer was diagnosed and they didn't show anything wrong either. I was 59 and still hadn't started menopause, but my doctor was taking a wait-and-see approach because late menopause is a thing. I've had longer and heavier than normal periods all of my life and still no one ever told me those were all risk factors for this cancer. Until there is a screening test for this cancer (and there may be one in the pipeline) this is the reality we and our doctors have to live with. I just wish there was more education out there for it like there is for other cancers.

    My daughter was recently diagnosed with PCOS and is being managed by an endocrinologist for it. You may want to get a second opionion about whether or not you truly have it because it's really important to get the metabolic component of it under control ASAP if you can. It is another risk factor/cause for this cancer.

    You are probably feeling a bit in shock right now and you may want to consider taking someone with you to your doctor appointments. You are going to get a lot of information thrown at you and a second pair of ears and memory really helps. Write down any questions you can think of so you have them to refer to. Also ask for copies of all of your lab, biopsy, surgical, etc. results. They come in handy when you end up seeing multiple doctors and referring back to for yourself when you can't remember all of the details of whats been happening to you.

    Sorry you had to find us here, but welcome, anyway.

  • MeinMississippi
    MeinMississippi Member Posts: 39
    edited August 2017 #3
    MAbound said:

    Sad Truth

    The sad truth is that there is currently no screening test for this cancer and you are not alone wondering why they weren't finding this sooner when you had the symptoms you had.

    I had pelvic ultrasounds twice in the two years before my cancer was diagnosed and they didn't show anything wrong either. I was 59 and still hadn't started menopause, but my doctor was taking a wait-and-see approach because late menopause is a thing. I've had longer and heavier than normal periods all of my life and still no one ever told me those were all risk factors for this cancer. Until there is a screening test for this cancer (and there may be one in the pipeline) this is the reality we and our doctors have to live with. I just wish there was more education out there for it like there is for other cancers.

    My daughter was recently diagnosed with PCOS and is being managed by an endocrinologist for it. You may want to get a second opionion about whether or not you truly have it because it's really important to get the metabolic component of it under control ASAP if you can. It is another risk factor/cause for this cancer.

    You are probably feeling a bit in shock right now and you may want to consider taking someone with you to your doctor appointments. You are going to get a lot of information thrown at you and a second pair of ears and memory really helps. Write down any questions you can think of so you have them to refer to. Also ask for copies of all of your lab, biopsy, surgical, etc. results. They come in handy when you end up seeing multiple doctors and referring back to for yourself when you can't remember all of the details of whats been happening to you.

    Sorry you had to find us here, but welcome, anyway.

    Thank you for replying!  This

    Thank you for replying!  This is very good information. My husband will be taking me tomorrow. I'm just so ready to get my hysterectomy and hopefully get this over with. It's like a dead weight sitting on my shoulders right now, and there's nothing I can do about it until I get this consult and the process starts flowing. I feel like my family doesn't understand and I almost feel like no one is worried. I guess they're coping the way they know how and I shouldn't expect a certain behavior. I have my 23 year old and 20 year old daughter living with me and my 23 year old has two little ones, so I have grandchildren too. Thank you for making me feel welcome. 

  • Nellasing
    Nellasing Member Posts: 528
    MeinMississippi we will be thinking about you tomorrow!

    I'm glad you husband will be there with you.  The waiting is the hardest part- it truly is and believe me- there is a LOT OF IT.  The best thing you can do is know that and start finding ways to cope with it by doing fun things while you can, treating yourself and your family to special time, take up a hobby that you have wanted to do, find a great book series- anything that will keep you occupied. 

    I'm sure your family is very worried but they are also coping with not knowing what to do or say especially since none of you really has any good information yet.  That will come after your surgery when you get the pathology report back.  That can take some time- see- waiting.... lol

    We're here for you.  We've been where you are.  These are great ladies with tons of amazing stories of help and hope!  One day at a time- it's all we are asked to live and all we get to live- treasure them!!!  No one knows how long they have and I think that is one of the blessings of these taps on the shoulder- you realize just how very precious each and every moment of time is that you have with those you love.   (((HUGS)))

  • Kvdyson
    Kvdyson Member Posts: 789
    edited August 2017 #5
    Good luck to you at your gyn

    Good luck to you at your gyn-onc appointment today. Hopefully they'll get you set-up for surgery soon. Once the surgery is complete, your medical team will use the pathology report  to develop a treatment plan. It can be a pretty long process so, as the others have noted, plan accordingly. :)

    Stay hopeful and let us know how we can help you! Kim

  • MeinMississippi
    MeinMississippi Member Posts: 39
    Nellasing said:

    MeinMississippi we will be thinking about you tomorrow!

    I'm glad you husband will be there with you.  The waiting is the hardest part- it truly is and believe me- there is a LOT OF IT.  The best thing you can do is know that and start finding ways to cope with it by doing fun things while you can, treating yourself and your family to special time, take up a hobby that you have wanted to do, find a great book series- anything that will keep you occupied. 

    I'm sure your family is very worried but they are also coping with not knowing what to do or say especially since none of you really has any good information yet.  That will come after your surgery when you get the pathology report back.  That can take some time- see- waiting.... lol

    We're here for you.  We've been where you are.  These are great ladies with tons of amazing stories of help and hope!  One day at a time- it's all we are asked to live and all we get to live- treasure them!!!  No one knows how long they have and I think that is one of the blessings of these taps on the shoulder- you realize just how very precious each and every moment of time is that you have with those you love.   (((HUGS)))

    Thank you so much for your

    Thank you so much for your kind words!  Per the pathology report my cancer is Stage 1. I was relieved by that. I'm hoping surgery will take care of this. I read about having to get a grade on it after surgery, so I guess I'm not completely out of the woods yet. I so appreciate the compassion you've shown.  I've always felt horrible and prayed for others who have cancer, but when I was told I had it, it was total shock. I truly had the, "this happens to other people, not me!" feeling in my head while my heart was sinking. Cancer changes your whole perspective on life. I'm so glad I found this group, and know that I have support and knowledge of people like you who know what's going on, and can give me an idea of what to expect. And you're right about waiting...I thought until I know exactly what I'm dealing with, who has pressed the "pause button?" I need to see how this story is gonna play out!  Please push "play" now!!  I can see this is going to also be a lesson in patience!  Thank you so much again!!  Xoxo

  • MeinMississippi
    MeinMississippi Member Posts: 39
    Kvdyson said:

    Good luck to you at your gyn

    Good luck to you at your gyn-onc appointment today. Hopefully they'll get you set-up for surgery soon. Once the surgery is complete, your medical team will use the pathology report  to develop a treatment plan. It can be a pretty long process so, as the others have noted, plan accordingly. :)

    Stay hopeful and let us know how we can help you! Kim

    Thank you so much Kim, for

    Thank you so much Kim, for being so sweet and helpful!  I was told I am stage 1, so that has taken such a weight off if me. I read I have to get a grade next, but I feel hopeful that the hysterectomy, ovary, Fallopian tubes removal will do the trick. I know I shouldn't get ahead of myself, but knowing the stage made me feel better. Of course, I never fathomed I would hear a doctor tell me I have cancer. I ignored the changes in my body for quite awhile, and chalked it up to being perimenopausal. I have learned a lesson for sure. Taking care of ourselves and seeing the doctor at least once a year has to be a priority. Just these last few days has made me realize life is a gift. It really means so much to me to read your kind words. I'm also thankful for all the knowledge you can offer me because of your experience, and the fact that you are willing to take time out of your day to respond to my concerns and fears. I know you and others who give a kind words and advice help ease anxieties and give a sense of empowerment through knowledge. Thank you so much again!!  Xoxo

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,999 Member
    edited August 2017 #8
    MeinMissiissippi, please know

    MeinMissiissippi, please know you are not alone.  Please let us know how everything goes and that you can ask ANYTHING here - really - scroll through some of the old posts.  

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Hey MeinMississippi,

    Hey MeinMississippi,

    Welcome to the board. Sorry you had to find us but glad you did. As you can see, you will get loads of support and information here.

    I do have a question for you - normally, the grade of cancer can be determined by the biopsy and the stage is determined after surgery. This is because they have to sample lots of places during surgery to determine if the cancer stayed in one place or went to other places. I bring this up only to tell you that if it really is the grade that you have been given, I wanted to say that is the best news ever! If you end up with stage 1 / grade 1, chances are you will only need surgery. 

    Please come back and let us know what you find out. And, feel free to ask any questions you may have. Nothing is off limits here. :-)

    Love and Hugs,

    Cindi

  • MeinMississippi
    MeinMississippi Member Posts: 39

    MeinMissiissippi, please know

    MeinMissiissippi, please know you are not alone.  Please let us know how everything goes and that you can ask ANYTHING here - really - scroll through some of the old posts.  

    Thank you so much!  The

    Thank you so much!  The doctor told me I was in stage 1. I guess I'll know more details after surgery. I'm so happy for y'all being here and for all the terrific information I have been able to get. XOXO

  • MeinMississippi
    MeinMississippi Member Posts: 39

    Hey MeinMississippi,

    Hey MeinMississippi,

    Welcome to the board. Sorry you had to find us but glad you did. As you can see, you will get loads of support and information here.

    I do have a question for you - normally, the grade of cancer can be determined by the biopsy and the stage is determined after surgery. This is because they have to sample lots of places during surgery to determine if the cancer stayed in one place or went to other places. I bring this up only to tell you that if it really is the grade that you have been given, I wanted to say that is the best news ever! If you end up with stage 1 / grade 1, chances are you will only need surgery. 

    Please come back and let us know what you find out. And, feel free to ask any questions you may have. Nothing is off limits here. :-)

    Love and Hugs,

    Cindi

    Thank you so much , Cindi!  I

    Thank you so much , Cindi!  I'm so confused by all this staging and grading and whatever else they make us go through for this process!  I thought the doctor told me I was in stage 1, but my head was just spinning yesterday!  When I got there my blood pressure was 177/103. My surgery is August 14, so I guess after that we will know exactly what the deal is. Thank you for being so welcoming and comforting. I feel much more hopeful, but doctor did tell me we wouldn't know if I need chemo/radiation until after surgery. Thank you so much again. Xoxo

  • Cass83
    Cass83 Member Posts: 151
    Prayers that all goes well on the 14th

    You will find a lot of support on this site for sure. I remember coming here with questions when I was diagnosed in Dec. of last year. Like you I always prayed for people that had cancer, but when it is you, it is different, and it will change you forever in how much more compassion you have to others that have it. All I want to do now is help others through it! Praying for a good outcome when you go on the 14th for your surgery!

  • ConnieSW
    ConnieSW Member Posts: 1,604 Member
    Cass83 said:

    Prayers that all goes well on the 14th

    You will find a lot of support on this site for sure. I remember coming here with questions when I was diagnosed in Dec. of last year. Like you I always prayed for people that had cancer, but when it is you, it is different, and it will change you forever in how much more compassion you have to others that have it. All I want to do now is help others through it! Praying for a good outcome when you go on the 14th for your surgery!

    Cass

    you really look gorgeous with the minimal hair style

  • henhill
    henhill Member Posts: 123
    Hi MiM

    I was not diagnosed right away, either.  Had a PAP that was clear and the fluid I was leaking was assumed to be a bladder issue, so I had a surgery for that! Grrrrr  Anyway, a few months later, I started having high blood pressure out of nowhere, and putting two and two together, since my bladder was not the problem I asked for a Gyn visit.  It was all a whirlwind from there. Anyway, it sure sounds like you are closer to catching it than many, and I pray you will do well with everything that they do to help you.  The high blood pressure can be helped with meds, btw, that's the last thing you need right now.

  • Kaleena
    Kaleena Member Posts: 2,064 Member
    Wishing you well on upcoming surgery

    Hello Mein:

    Sorry you have to go through all of this.  It is a very scary time for you but you can do it!    I was 45 years old when I was diagnosed.   However, they didn't find out until after my surgery for a hysterectomy!    Prior to that I had a internal ultrasound and a laparscopy but only said I needed a hysterectomy.   After recoverying from my hysterectomy, they told me the news.   Stage 3A, Grade 2 Endometrial Adenocarcinoma.  They found it in my uterus, cervix and left ovary.     By the way that will be 12 year on September 13th.    

    After you surgery, make sure you keep moving (walking, etc.).   It helps with the recovery process.  

    Hugs!

    Kathy

  • Kvdyson
    Kvdyson Member Posts: 789
    edited August 2017 #16

    Thank you so much , Cindi!  I

    Thank you so much , Cindi!  I'm so confused by all this staging and grading and whatever else they make us go through for this process!  I thought the doctor told me I was in stage 1, but my head was just spinning yesterday!  When I got there my blood pressure was 177/103. My surgery is August 14, so I guess after that we will know exactly what the deal is. Thank you for being so welcoming and comforting. I feel much more hopeful, but doctor did tell me we wouldn't know if I need chemo/radiation until after surgery. Thank you so much again. Xoxo

    Hope your surgery went well today

    MeinMississippi, hope your surgery went well today. Sending positive, healing thoughts your way! Kim

  • Cass83
    Cass83 Member Posts: 151
    ConnieSW said:

    Cass

    you really look gorgeous with the minimal hair style

    thank you!

    Thank you Connie! I have had people at church tell me to keep it short, they like it, so I just might!

  • StaciLynn
    StaciLynn Member Posts: 41 Member

    Thank you so much , Cindi!  I

    Thank you so much , Cindi!  I'm so confused by all this staging and grading and whatever else they make us go through for this process!  I thought the doctor told me I was in stage 1, but my head was just spinning yesterday!  When I got there my blood pressure was 177/103. My surgery is August 14, so I guess after that we will know exactly what the deal is. Thank you for being so welcoming and comforting. I feel much more hopeful, but doctor did tell me we wouldn't know if I need chemo/radiation until after surgery. Thank you so much again. Xoxo

    Hi!  I am new to the group as

    Hi!  I am new to the group as I was just diagnosed with uterine cancer a little less than a week ago.  I have already gotten a lot of positive, upbeat responses from several members of this forum, but now have been looking over some of the other posts people have made and ran acrosss yours.  First of all, how did your surgery go?  How long will it take to know for sure what your pathology report was?  In your post, you mentioned your doctor felt you were in stage 1, but how were they able to determine that since I thought you had to have surgery to know for sure what stage you are in?  I never had uterine bleeding, but did have an usually thick endometrial lining of a little over 17cm, which lead to my D&C, which lead to a cancer diagnosis.  At first I as told two polyps were removed and it was believed that was the cause of my thickening, but the pathology report showed it wasn't so simple as just having polyps.  I was told the cells were well differentiated, which is supposed to be a good sign as opposed to having cells that are poorly differentiated, but I was never given a grade of what my cancer was, but was told it was believed to have been caught early and I pray that is true.  Of course I won't know for sure if I will need treatment until after I have surgery and as of now, I still haven't even met with the GYN/Oncologist yet.  I know the only way to know for sure what my prognosis will be is after the surgery.  Did you find the surgery to be rough?  I have had surgery before, but only when I had my two c-sections years ago and gall bladder surgery over 10 years ago.  I know there is pain and discomfort from surgery since I experienced it, but having a hysterectomy is very different so I am ot exactly sure what to expect, especially since I am not sure how it will be done at this point.  How as your hysterectomy performed?  Anyway, I hope you are feeling better and hope your pathology report comes back with good results.    Take care and be well!

    Staci

  • Uterinegrade1
    Uterinegrade1 Member Posts: 3
    edited September 2017 #19
    I am new here and I am 46

    I am new here and I am 46 with the same problem back in may, Aug 24th i had a total hysterectomy  along with everything else removed and came back cancer, have you had anything done yet

  • TheTerry
    TheTerry Member Posts: 27
    StaciLynn said:

    Hi!  I am new to the group as

    Hi!  I am new to the group as I was just diagnosed with uterine cancer a little less than a week ago.  I have already gotten a lot of positive, upbeat responses from several members of this forum, but now have been looking over some of the other posts people have made and ran acrosss yours.  First of all, how did your surgery go?  How long will it take to know for sure what your pathology report was?  In your post, you mentioned your doctor felt you were in stage 1, but how were they able to determine that since I thought you had to have surgery to know for sure what stage you are in?  I never had uterine bleeding, but did have an usually thick endometrial lining of a little over 17cm, which lead to my D&C, which lead to a cancer diagnosis.  At first I as told two polyps were removed and it was believed that was the cause of my thickening, but the pathology report showed it wasn't so simple as just having polyps.  I was told the cells were well differentiated, which is supposed to be a good sign as opposed to having cells that are poorly differentiated, but I was never given a grade of what my cancer was, but was told it was believed to have been caught early and I pray that is true.  Of course I won't know for sure if I will need treatment until after I have surgery and as of now, I still haven't even met with the GYN/Oncologist yet.  I know the only way to know for sure what my prognosis will be is after the surgery.  Did you find the surgery to be rough?  I have had surgery before, but only when I had my two c-sections years ago and gall bladder surgery over 10 years ago.  I know there is pain and discomfort from surgery since I experienced it, but having a hysterectomy is very different so I am ot exactly sure what to expect, especially since I am not sure how it will be done at this point.  How as your hysterectomy performed?  Anyway, I hope you are feeling better and hope your pathology report comes back with good results.    Take care and be well!

    Staci

    Hi StaciLynn - I am new to

    Hi StaciLynn - I am new to this group and just saw your post today. I had laparascopic hysterectomy in June for endometrial cancer. I was discharged from hospital the next day and recovery was uneventful. Stage 1, grade 1, endometrioid cell type so no need for radiation (or chemo). I'm 63. My kid sister (age 61 in two weeks) hasnt been so lucky. She had hysterectomy (open procedure) in 2014 and made a good recovery. Radiation followed. Mets diagnosed last year, treated with 6 cycles of chemotherapy- which we learned in mid-August didn't work. Now she's in palliative care at home and I'm her caregiver. Good luck to you.

  • Nellasing
    Nellasing Member Posts: 528
    TheTerry said:

    Hi StaciLynn - I am new to

    Hi StaciLynn - I am new to this group and just saw your post today. I had laparascopic hysterectomy in June for endometrial cancer. I was discharged from hospital the next day and recovery was uneventful. Stage 1, grade 1, endometrioid cell type so no need for radiation (or chemo). I'm 63. My kid sister (age 61 in two weeks) hasnt been so lucky. She had hysterectomy (open procedure) in 2014 and made a good recovery. Radiation followed. Mets diagnosed last year, treated with 6 cycles of chemotherapy- which we learned in mid-August didn't work. Now she's in palliative care at home and I'm her caregiver. Good luck to you.

    Hi TheTerry

    Saw your post and just wanted to let you know I'm so happy you found us.  You sure are going through a lot yourself and then your sister!  So very sorry.  Please stay close, this is a great group of sisters who will do their best to support you any way we can.  Take good care of yourself too - I hope you have some help!  Keep us posted when you can.  (((HUGS)))