clear cell survivors

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  • pandagypsy
    pandagypsy Member Posts: 113
    Kngcobra said:

    Clear cell husband

    Hello

    My wife will undergo surgery this thurs. For clear cell. I know this site is for patients. I just needed someone to talk to,im really scared as I know my wife is too. We have been married 37 yrs. An I feel like both ours lives have ended. Sorry for venting to perfect strangers. It all seems very sudden. Thanks for listening

     

    Kngcobra....of course you are WELCOME here!

    This is a great sight for partners and family members of those with cancer.  You will get more insight into what we are really thinking, going thru, our battles and victories.  A lot of us don't want to "bother" family & friends with our fears and questions........I know I don't, they all think that I am a brave fighter and don't understand how I have been able to fight this. I just shrug it off and say, I do what I can do, I don't have a choice.  But inside, I am so scared and don't want to be "debbie downer" and have everyone cry for me. I've had breast cancer twice (at age 28 & 30)....Ovarian cancer stage 4.....diagnosed FINALLY at age 54 and a reoccurance almost 5 years later. In between all of this I had brain surgery for a colloid cyst (not related to the cancers). I would tell you to check the sight often, see what people are saying; it may help you deal with your wife's disease.  I can relate, as I have been married for 42 years, and it's not often we can share our fears and cry together...... and we really shouldn't spend the rest of our time together doing this anyway.......most of all, enjoy when you can! Your lives have not ended, but they have been changed. My best of wishes to you and your wife............please stay in touch......

  • mopar
    mopar Member Posts: 1,972 Member
    STAGE 1C (+CAUTION ON THE ESSIAC TEA)

    Hello all!  I was clear cell stage 1C in 2000, with a recurrance in 2006, and breast cancer in 2013.  I see you are getting lots of responses, and I'm sure you will get more.  I welcome any questions you may have.  And most of all, Love, (((HUGS))) and Prayers to all of you!

    To the Essiac Tea:  after my first Dx I drank the tea daily.  While we always research before we do anything, I was not aware that some of the herbs in the tea can encourage estrogen production.  For me (as I learned much later), estrogen is a no-no.  When my doctor gave me the Premarin cream to use, my CA125 started climbing.  That's when he informed me that I should stear clear of all HRT of any kind, whether 'bioidentical' or not.  So, no more cream, no more tea, and I am cautious of other aspects of my diet/supplementation.  The black cohosh, milk thistle, red clover and other herbs can be very helpful to most women.  But those and others in the Essiac Tea and other preparations can be a real detriment to some of us.  My breast cancer, by the way, was 100% estrogen responsive and only 20% progesterone responsive.  I am currently on Aromasin for the five years to prohibit ANY estrogen production.

    Stay strong, Ladies!

    Monika

     

     

  • Lily_Anne
    Lily_Anne Member Posts: 39
    mopar said:

    STAGE 1C (+CAUTION ON THE ESSIAC TEA)

    Hello all!  I was clear cell stage 1C in 2000, with a recurrance in 2006, and breast cancer in 2013.  I see you are getting lots of responses, and I'm sure you will get more.  I welcome any questions you may have.  And most of all, Love, (((HUGS))) and Prayers to all of you!

    To the Essiac Tea:  after my first Dx I drank the tea daily.  While we always research before we do anything, I was not aware that some of the herbs in the tea can encourage estrogen production.  For me (as I learned much later), estrogen is a no-no.  When my doctor gave me the Premarin cream to use, my CA125 started climbing.  That's when he informed me that I should stear clear of all HRT of any kind, whether 'bioidentical' or not.  So, no more cream, no more tea, and I am cautious of other aspects of my diet/supplementation.  The black cohosh, milk thistle, red clover and other herbs can be very helpful to most women.  But those and others in the Essiac Tea and other preparations can be a real detriment to some of us.  My breast cancer, by the way, was 100% estrogen responsive and only 20% progesterone responsive.  I am currently on Aromasin for the five years to prohibit ANY estrogen production.

    Stay strong, Ladies!

    Monika

     

     

    Clear Cell and Serous

    I was diagnosed stage 1C with grade 3 clear cell and grade 1 serous in 2012. I had a good prognosis post surgery, with Carboplatin for chemo. My CA125 at diagnosis was 34.

    After treatment my CA125 was 7 and stayed low, rising to 12 and 15.  I had a level of 47 in May 2015 and in July 2015 it had risen to 102. Having a meltdown. 

     

    Anyone else been here and all good?

    LA

  • gancman
    gancman Member Posts: 1
    Clear Cell Survivor

    Hello

    I was diagnosed in 2013 Stage 1C.  It will be 3 years remission on Nov 9, 2015.   I would like to talk with other survivors.  Please email me here.  I will look forward with talking with you.

  • Tutsebaby
    Tutsebaby Member Posts: 1
    gancman said:

    Clear Cell Survivor

    Hello

    I was diagnosed in 2013 Stage 1C.  It will be 3 years remission on Nov 9, 2015.   I would like to talk with other survivors.  Please email me here.  I will look forward with talking with you.

    Clear cell carcinoma.

    Hello.

    I was diagnosed August 2016with ovarian clear cell carcinoma stage 1c high grade 3. I had a tumor the size if a watermelon. They did a radical hysterectomy with my omentum and appendix removed also. I did six months of chemo. I am now having so many abdominal issues. I have several hernias and they now think I have to have my gall bladder removed. I also have s mass in my breast they are watching. Ugh. ive read so many things about clear cell being aggressive and rare. I'm just wondering how you are doing and if you had any problems. Just a little scared. I'm awaiting some tests to have gall bladder and hernias repaired. 

    tinA

  • bettyboop3917
    bettyboop3917 Member Posts: 45
    Tutsebaby said:

    Clear cell carcinoma.

    Hello.

    I was diagnosed August 2016with ovarian clear cell carcinoma stage 1c high grade 3. I had a tumor the size if a watermelon. They did a radical hysterectomy with my omentum and appendix removed also. I did six months of chemo. I am now having so many abdominal issues. I have several hernias and they now think I have to have my gall bladder removed. I also have s mass in my breast they are watching. Ugh. ive read so many things about clear cell being aggressive and rare. I'm just wondering how you are doing and if you had any problems. Just a little scared. I'm awaiting some tests to have gall bladder and hernias repaired. 

    tinA

    Hi Tutsebaby

    I am also fighting clear cell and have been for a few years now. I still have abdominal issues too from adhesions that have came from the surgeries I have had. I'm also getting IP chemo this adds to the adhesions. Here lately I have found that our whirlpool spa tub in the house has been working wonders on some of the pain and other issues I have been having. I am in it any where from a hour or two every night using the jets to genially massage the abdomen and this the adhesions.

     

     While clear cell is rare and aggressive it is also a winnable cancer. Kick this cancer in the rear :) 

     Betty

  • Simplicity
    Simplicity Member Posts: 3 Member
    gancman said:

    Clear Cell Survivor

    Hello

    I was diagnosed in 2013 Stage 1C.  It will be 3 years remission on Nov 9, 2015.   I would like to talk with other survivors.  Please email me here.  I will look forward with talking with you.

    just joining

     Just checking to see how things are going. Recently diagnosed with 1C grade 3 clear-cell ovarian. Have finished with chemo and scheduled for a CT scan August 3. Don't really know what to expect.

  • violawells
    violawells Member Posts: 2
    No CT scan after treatment - should I complain?

    I, too, have Stage IC3 clear cell carcinoma of the ovary. My post-chemo follow-up appointment was on August 2nd. I had blood work done, CA-125 and exam, but no CT scan. My gynecologic oncologist stated that she didn't think it was necessary. I got the feeling that I could have made a fuss and argued my way into one, but was worried it wouldn't give me the definitive "yes, you're cancer-free" evidence I am desperately looking for.

    @Simplicity: did your CT scan results help you? I'm experiencing more anxiety now that treatment is over than I had during surgery and chemo treatments.

  • birdvet
    birdvet Member Posts: 2
    edited September 2017 #30

    No CT scan after treatment - should I complain?

    I, too, have Stage IC3 clear cell carcinoma of the ovary. My post-chemo follow-up appointment was on August 2nd. I had blood work done, CA-125 and exam, but no CT scan. My gynecologic oncologist stated that she didn't think it was necessary. I got the feeling that I could have made a fuss and argued my way into one, but was worried it wouldn't give me the definitive "yes, you're cancer-free" evidence I am desperately looking for.

    @Simplicity: did your CT scan results help you? I'm experiencing more anxiety now that treatment is over than I had during surgery and chemo treatments.

    CT scans

    Hi There. I was originally diagnosed with stage 1C clear cell and my initial CT showed a liver and kidney cyst. I wanted to make sure they were only cysts and asked for a CT post treatment and they said " only if I had symptoms"..which irritated me as ovarian cancer is known for being sneaky with few symptoms. I persisted and they opted for an MRI to see what was up in my liver..and they found the "cyst" was a tumour..and there were 3 more. I would pester them for a post treatment CT..even if you have to create symptoms, which I was ready to do if they wouldn't scan me. I am resistant to Platinum based chemo and now starting an immunotherapy drug trial. I would never have known about the liver mets if I hadn't pushed for a scan. 

  • birdvet
    birdvet Member Posts: 2
    edited September 2017 #31

    Hi Tutsebaby

    I am also fighting clear cell and have been for a few years now. I still have abdominal issues too from adhesions that have came from the surgeries I have had. I'm also getting IP chemo this adds to the adhesions. Here lately I have found that our whirlpool spa tub in the house has been working wonders on some of the pain and other issues I have been having. I am in it any where from a hour or two every night using the jets to genially massage the abdomen and this the adhesions.

     

     While clear cell is rare and aggressive it is also a winnable cancer. Kick this cancer in the rear :) 

     Betty

    Thanks

    For saying this is winnable, pretty scared here. 

  • Becca42
    Becca42 Member Posts: 1
    edited October 2017 #32

    I am stage 3c, but boy was
    I am stage 3c, but boy was my surgeon grim. I do have the same feeling "that I am going to die." I guess Clear Cell is the most aggressive. However, there are survivors of Clear Cell no matter what the staging. I guess we need to focus on those. I start my chemo most likely next week. I had surgery May 18. Best wishes to you.

    Hi

    How are you doing? I am the same stage...

  • Soup52
    Soup52 Member Posts: 908 Member
    I’m from the uterine board

    I’m from the uterine board and my diagnoses was 3c  clearcell in 2015.i did have a scan after chemo was finished and it did give me some peace of mind . Now more than a year after treatment I requested another scan due to my high grade . Often they don’t want to scan unless you have symptoms , but I pushed and finally succeeded . I just had it yesterday and am waiting for results .