Récurrence, need of your opinion

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Sandrine04
Sandrine04 Member Posts: 76
in Uterine/Endometrial Cancer #1

Hello 

I have stade4 endometrial adenocarcinoma. 

After a recurrence or cancer has been? In abdomen ? What was your treatment?your story with récurrences? 

 

 

Comments

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #2
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    Confused

    Sandrine

    In a previous post you were questioning as to those who did not have a hysterectomy?   How was your Stage 4 endometrial adenocarcinoma found?  How did your recurrence occur or how was it found?

    I originally had Stage 3A endometrial adenocarcinoma with a recurrence 5 years later.  I only had surgery and then a wait and see approach.

     

    Kathy

  • Sandrine04
    Sandrine04 Member Posts: 76
    #3
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    Kathy, First I had bleeding. My doctor said i have a fibrom. The analyse said it's a cancer.adenocarcinoma endometrial.  

    I had chemo. 6 rounds of carboplatine /doxo /endoxan. 

    Scanner is good, The surgeon decided to operate me.during surgery, he look that i have cancer on abdomen and diaphragm.he decided again chemo...

    Scuse for me english. 

  • Sandy1556
    Sandy1556 Member Posts: 5
    edited March 2017 #4
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    Third occurance

    Hi - just joined today. Found out my uterine cancer is back after 5 years of no issues. 2010 discovered the cancer after D/C for bleeding so had a TAH - doctor said no worries, they got it all. One year later, bleeding started again and tests showed positive so had radiation - internal and external. Thought I was out of the woods for good till the bleeding started again and was told it is back once again.

    Scheduled for a total body Pet Scan this Friday and am terrified of where they might find more. Doctor said Chemo is the next step after we see where it has spread.

    I have had a bad cough like bronchitis for 6 weeks and nothing has helped. Some of the posts I read recently stated their cancer was back and now in the lungs. What other symptoms did you have besides the cough?

  • Nellasing
    Nellasing Member Posts: 528 Member
    edited March 2017 #5
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    Sandy1556

    Hi, just wanted to welcome you and let you know I'm sure someone will be along shortly who has some sort of information for you.  You might want to post this in a new thread so it isn't hooked to the bottom of this one.  Sometimes it just makes it easer to keep track of.

    I am curious what stage and grade cancer originally??  I am SO very sorry to hear that you are going through all this.  I am sure it is quite shocking and upsetting to think everything is fine not only once but twice.  Here's hoping you'll be back to NED soon.  In the meantime we are here for you and look forward to linking arms and walking along while you find out what's going on.    (((HUGS)))

  • Sandy1556
    Sandy1556 Member Posts: 5
    #6
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    Nellasing said:

    Sandy1556

    Hi, just wanted to welcome you and let you know I'm sure someone will be along shortly who has some sort of information for you.  You might want to post this in a new thread so it isn't hooked to the bottom of this one.  Sometimes it just makes it easer to keep track of.

    I am curious what stage and grade cancer originally??  I am SO very sorry to hear that you are going through all this.  I am sure it is quite shocking and upsetting to think everything is fine not only once but twice.  Here's hoping you'll be back to NED soon.  In the meantime we are here for you and look forward to linking arms and walking along while you find out what's going on.    (((HUGS)))

    Thanks Nellasing, I will do

    Thanks Nellasing, I will do that.

    I don't remember what stage the cancer was originally but it was "minimal "is all I remember the doctors saying. I will certainly pay more attention this time around. This site will be helpful - thanks again.

  • Peggylee
    Peggylee Member Posts: 13
    edited March 2017 #7
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    Papillary Serous Endometrial, stage 1B, grade 3, NOW stage 1V. NED, Finished chemo 4 mts. prior.  It is in the lining of the abdomen and he said it'll keep coming back. Oncologist said being it came back so soon I wouldn't have much luck concurring this damn disease.  If I have chemo, I could live 11 to 12 mts.  If I don't ????  Sounds like 3 mts or more.  I have always said I want quality of life.  I am amazed at how courageous you all are to continue treatment.  I didn't have a difficult time with treatment, but, I know it'll be worse and more side effects this time around.  I don't really want to go that route if it's going to keep coming back.

  • Nellasing
    Nellasing Member Posts: 528 Member
    #8
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    Peggylee

    that is rotten news, so very sorry you are dealing with this!!  As I've seen and heard here before, no one knows for sure, there is no expiration date stamped on the bottom of your foot and you are a statistic of one... the longer you have the better the chance of a match for a trial or new options coming out right???  We have 2 members who are right now in Germany having treatments... I just want to encourage you with whatever you decide to do.  We are here with you and for you.... Big ole (((HUGS)))

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    edited March 2017 #9
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    Peggylee said:

    Papillary Serous Endometrial, stage 1B, grade 3, NOW stage 1V. NED, Finished chemo 4 mts. prior.  It is in the lining of the abdomen and he said it'll keep coming back. Oncologist said being it came back so soon I wouldn't have much luck concurring this damn disease.  If I have chemo, I could live 11 to 12 mts.  If I don't ????  Sounds like 3 mts or more.  I have always said I want quality of life.  I am amazed at how courageous you all are to continue treatment.  I didn't have a difficult time with treatment, but, I know it'll be worse and more side effects this time around.  I don't really want to go that route if it's going to keep coming back.

    So very sorry

    So very sorry that you got this news.  It is a very hard decision to make And my prayers are with you.  we are all just complete individuals and need to make a decision that we can be comfortable with.  I choose to fight this beast.  I have been on treatment for recurrence for over three years now and I have many more good days than bad.  I have been around to welcome four great grand babies and cuddle them.  My husband and sole mate and I have been able to travel and have plans for this summer.  My life did not come to a end.  It is different, but it is still a good life.  No one knows when their time will come.  I have always said that you never know when you will step outside and have a plane land on them.  What ever your decision is everyone here will support you.  Hugs and prayers, Lou Ann

  • Carpit
    Carpit Member Posts: 19
    edited March 2017 #10
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    Let me start by wishing the

    Let me start by wishing the very best to all.

    I had a TAH on Feb 16,2017, was diagnosed with stage 1B Uterine Sarcoma. Still in the healing process. My Dr wants to do chemo  ( I believe 6 rounds of Doxorubicin ) No radiation recommended. My husband wants me to try unconventional methods. I've noticed that quite a few has opted for chemo. Is there anyone out there that chose surgery only. Not sure if reoccurrence happens at the same rate with or without chemo.

    Any thoughts

     

    Best Regards

     

     

  • Nellasing
    Nellasing Member Posts: 528 Member
    #11
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    Hi Carpit- welcome

    I'm glad you've found this wonderful group - full of support and information.  My thoughts ran very much along the lines it sounds like yours are.  I so wanted to be done once I had surgery.  I was working with a gyn/onc and also with a naturopathic Dr.  Once the gyn/onc went over the pathology which was complicated I went to the naturopathic Dr. and had a long- honest conversation.  The one thing she told me that changed my mind was that the integrated approach was her recommendation because those patients tended to be around a lot longer.  She said she would help me to support my healthy body, increase effectiveness of the chemo and keep the side effects to a minimum.  She helped me to see and believe that it was possible and that we would do it together.  I also had an acupuncturist and IV therapist in the same collaborative effort. 

    I finished frontline treatment of Carbo/Taxol on Sept. 21st 2016 and from all I have read and heard I did really good.  The most lasting side effects for me are some neuropathy in both feet but mostly in the toes on my right foot, pretty severe fatigue compared to the old "normal" but livable and some weight gain issues that we can't quite pinpoint.  I have had a physical check every 2- 3 months with my next coming up in May.  My gyn/onc doesn't believe in any types of scans unless there are symptoms.  So far so good- I am dancing with NED (no evidence of disease) and I am working on changing my internal terrain so that I do not have a recurrence.  I am meditating (learning to), exercising, doing supplements and IV therapy, acupuncture, eating organic with no processed sugar, dairy etc. etc. 

    I'm sure there will be others chiming in soon.  Look forward to hearing what you decide- you will find that whatever you decide we will all support you!!! The best piece of advice I was given is this- "don't look back" commit 110% be confident and move forward.  The other piece of advice that has stayed true and with me and will always be a part of my journey is LIVE- live in the day you have- that is TODAY- make it count.  Look for the blessings of each day and be thankful.  None of us knows when this journey will end with or without an illness right?!  (((HUGS)))

  • Carpit
    Carpit Member Posts: 19
    #12
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    Nellasing said:

    Hi Carpit- welcome

    I'm glad you've found this wonderful group - full of support and information.  My thoughts ran very much along the lines it sounds like yours are.  I so wanted to be done once I had surgery.  I was working with a gyn/onc and also with a naturopathic Dr.  Once the gyn/onc went over the pathology which was complicated I went to the naturopathic Dr. and had a long- honest conversation.  The one thing she told me that changed my mind was that the integrated approach was her recommendation because those patients tended to be around a lot longer.  She said she would help me to support my healthy body, increase effectiveness of the chemo and keep the side effects to a minimum.  She helped me to see and believe that it was possible and that we would do it together.  I also had an acupuncturist and IV therapist in the same collaborative effort. 

    I finished frontline treatment of Carbo/Taxol on Sept. 21st 2016 and from all I have read and heard I did really good.  The most lasting side effects for me are some neuropathy in both feet but mostly in the toes on my right foot, pretty severe fatigue compared to the old "normal" but livable and some weight gain issues that we can't quite pinpoint.  I have had a physical check every 2- 3 months with my next coming up in May.  My gyn/onc doesn't believe in any types of scans unless there are symptoms.  So far so good- I am dancing with NED (no evidence of disease) and I am working on changing my internal terrain so that I do not have a recurrence.  I am meditating (learning to), exercising, doing supplements and IV therapy, acupuncture, eating organic with no processed sugar, dairy etc. etc. 

    I'm sure there will be others chiming in soon.  Look forward to hearing what you decide- you will find that whatever you decide we will all support you!!! The best piece of advice I was given is this- "don't look back" commit 110% be confident and move forward.  The other piece of advice that has stayed true and with me and will always be a part of my journey is LIVE- live in the day you have- that is TODAY- make it count.  Look for the blessings of each day and be thankful.  None of us knows when this journey will end with or without an illness right?!  (((HUGS)))

    Thank you so much Nellasing

    Thank you so much Nellasing for the prompt response and  the very constructive feedback. I am hoping that your dance with NED is endless ( getting familiar with the terminology) I do believe I need to have a heart to heart with my oncologist. I also am trying to Live each day to the fullest. Finding this site has helped me "Regain" a positive attitude. Lots of awesome people onboard. As you stated, such a wonderful group.  I need to make a decision fast I guess regarding my treatment. Conventional or Alternative. I have a pet scan on Wed ( not really sure why so soon after surgery ) She noted that my lungs were clear from the CT scan on Friday but noticed a 3mm spot. I'm wondering if a PetScan can pick that up regarding a determination of cancer. We will see. Have a wonderful wonderful day (((HUGS)))

  • Carpit
    Carpit Member Posts: 19
    #13
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    Rigvir

    Has anyone tried the drug "RIGVIR".  Not used here in the United States

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