Got my CT/PET results. Mets to the liver. :(

lindaprocopio
lindaprocopio Member Posts: 1,980
They're small (only one slightly larger than a cm & 3 other tiny ones noted on the report that my gyne-onc couldn't even FIND on my scan images) but apparently my uterine cancer has now metasticized to my liver. That can't be good.

The CA125 I had last Monday just prior to my CT/PET was 290, significantly up from the 181 it was 2 weeks before. The scan showed that the Doxil DID work on the enlarged malignant lymph node under my arm which was much smaller and with much less SUV uptake. But the paraortic lymph node that keeps lighting up and then going away, was lit up again and a little bigger. Of course, it's the new liver mets that are the concern. This is the 1st time I've had a metastasis in a vital organ. My whole family is freaked out. ARGH! I knew this would cast a pall over Christmas. :(

My gyne-onc is recommending I start carboplatin. I see my chemo-onc tomorrow afternoon for his recommendation and a treatment plan. I'm a little shell-shocked right now. THE GOOD NEWS I AM TRYING TO STAY FOCUSED ON is that I'm still symptom-free and if I hadn't had the CT/PET I would never even suspect that I had cancer, let alone liver mets. So if I still FEEL healthy, how much real trouble can I be in? RIGHT?? RIGHT??
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Comments

  • clscurnutt
    clscurnutt Member Posts: 26
    My prayer bear is focused on you
    Just read your post. My heart is so full right now thinking of you and this not so great news. I know you'll keep everyone posted regarding your appointment tomorrow. Just want to hug all this right out of you. (((((((Linda)))))))
  • thank you
    thank you Member Posts: 77
    RIGHT!!!
    Linda right!!!
    One

    RIGHT!!!
    Linda right!!!
    One thing I am telling to my patients that are concerned about some blood or imaging findings: I have never checked my self, if I do, who knows what I will find. If you DON'T have symptoms, you are NOT sick. Sick people are in the hospital. You have just some findings in the CT - but you are HEALTHY!!
    Second: my mom (who has stage III - yes it is not USPC, but still Stage IIIC) after she had a CT-PET 6 months after a diagnosis that just confused us (remember? it lit up on the vaginal cuff, she had a second laparoscopic surgery and was just inflammation), DID NOT have any more imaging. Just the Ca 125 (which we don't know if it is reliant for her) and GYN exam.
    She is symptom free. I have told her that this is it, her disease is cured and she doesn't need to be concerned. She is happy (you said: ignorance is a bless some times).
    So, you BE FOCUSED that you are symptom free. It is very important. I know you will probably decide to be aggressive - and who could disagree: you are completely healthy, tolerated most of the treatment really well. Linda, when I talk to a wise person like you, I feel that there are no words that I can tell you to make you feel better. But I feel at the same time that I owe you a lot - without even knowing me you changed many aspects of my life and thinking, just with your attitude and your writing on this site.
    Please if ever you feel that there is something that I could offer just say it.
    You wrote that you are a little shell-shocked right now. I suppose this is how you felt when you were first diagnosed. But here you are more than 2 years later. Yes with recurrence BUT with no symptoms - without hospitalizations, without the need of the others: so you ARE HEALTHY. Don't let numbers, don't let findings, don't let statistics destroy your Christmas. I am trying to make you feel better today at 7 pm, who knows if I have an accident and die tomorrow morning. YOU ARE HEALTHY!!!!!
  • fuzzytrouble
    fuzzytrouble Member Posts: 212
    Me too (vaginal cuff)
    Well Linda it looks like you and I will both be going through chemo together, I start on the 29th of Dec. with Carbo. I had a biopsy of the vaginal cuff and it came back positive. My lung nodules are stable ( well the older ones are) and some small new ones showed up but they can't be sure those are cancer. I still think the Doxil will help with the liver mets, it's such a slow chemo and I hope the next treatment stage helps too. I am so bummed out about having to go through this again, but it will be in the winter so not much to do anyway. I had a great summer and I can't complain but I want to anyway. I wish I knew more on the liver mets. I feel very healthy too and I don't have any symptoms of recurrence on the vaginal cuff. The doc says it's not a mass yet but a thickening and that's why it did not show up in the ct scan. I just give up with all this stuff and I am just going with the flow. I will be sending you good vibes to you and my thoughts are with you to. I feel like I am in a nightmare and I want to wake up and say "wow that was a bad dream". Take care and many warm hugs to you.
  • paris11
    paris11 Member Posts: 159
    Hi Linda
    Don't overthink - too much thinking can be dangerous - enjoy your great fun-filled life and your beautiful, loving family.

    Re: mets to liver. I had several mets to liver dx in Feb. 2008. Seven rounds of carbo/taxol mets resolved. Never to return. May you too be so blessed.

    Merry Christmas.

    20 more years !!!

    Connie
  • nempark
    nempark Member Posts: 681
    Linda and Fuzzytrouble
    I am at a loss for words!!!!! My Goodness, I cannot imagine feeling this way and I haven't even met the sisters on this site. I think of you all the time Linda!!! What shocking news, anyway, you both are fighters and I am sure with more treatment you both will beat this beast. My love and best wishes from my heavy, heavy heart goes out to all! June
    I love what connie said she beat the liver mets we can all do the same.
  • Cindy Bear
    Cindy Bear Member Posts: 569
    Hi Linda
    No words of wisdom here, but just know how much you are loved and admired by the other women on this site. In my eyes you are ten feet tall and bulletproof. I am sure your doctors will come up with a plan. Good luck tomorrow and keep us updated.
    Hugs,
    Cindy
  • kkstef
    kkstef Member Posts: 688 Member
    nempark said:

    Linda and Fuzzytrouble
    I am at a loss for words!!!!! My Goodness, I cannot imagine feeling this way and I haven't even met the sisters on this site. I think of you all the time Linda!!! What shocking news, anyway, you both are fighters and I am sure with more treatment you both will beat this beast. My love and best wishes from my heavy, heavy heart goes out to all! June
    I love what connie said she beat the liver mets we can all do the same.

    Two Amazing Sisters!!
    Linda and Fuzzy Trouble
    I simply can not find the words to describe how sorry I am to hear about your recent test results! What a BUMMER!! You are both such amazing warriors and I am confident that you will win this battle! I am glad that you are both feeling WELL….that is a good start and a good sign that this is just another bump in the road.

    I pray that you will both be able to relax and enjoy the Holidays!!

    Wishing you peace!! BIG HUGS!!

    Karen
  • bots
    bots Member Posts: 53

    Hi Linda
    No words of wisdom here, but just know how much you are loved and admired by the other women on this site. In my eyes you are ten feet tall and bulletproof. I am sure your doctors will come up with a plan. Good luck tomorrow and keep us updated.
    Hugs,
    Cindy

    Keeping watch for you, Linda
    I agree with Cindy Bear's comments 100 per cent. As my granddaughter would say, I have my fingers, toes, and eyes crossed for you.
    More hugs,
    Lori
  • norma2
    norma2 Member Posts: 479
    Feeling healthy is half the battle....
    I think feeling healthy is essential. I had some spots or whatever they called them on my liver last year. They show up each time. I was told they are benign cysts. I am praying for you, my dear. Dont' have to preach the positive to you. You are the quintessential symbol of positive thinking. I say RIGHT!!! I think you can't be in that much real trouble. Each day there are miracles happening all around us. You are one of them. Look how far you have come. You have good doctors, a great family and a body that keeps fighting. I think feeling healthy is your body telling you that it is not going to give up that easily. Go with that thought. I admire your spirit.

    Have a blessed Christmas, dear heart.
  • susafina
    susafina Member Posts: 131
    norma2 said:

    Feeling healthy is half the battle....
    I think feeling healthy is essential. I had some spots or whatever they called them on my liver last year. They show up each time. I was told they are benign cysts. I am praying for you, my dear. Dont' have to preach the positive to you. You are the quintessential symbol of positive thinking. I say RIGHT!!! I think you can't be in that much real trouble. Each day there are miracles happening all around us. You are one of them. Look how far you have come. You have good doctors, a great family and a body that keeps fighting. I think feeling healthy is your body telling you that it is not going to give up that easily. Go with that thought. I admire your spirit.

    Have a blessed Christmas, dear heart.

    Linda
    Hi Linda,
    What can any of us say But THis really STINKS!! I would like to say something stronger but I won't. I am glad that you are feeling well. Just Know that you are STRONGER than anything. This is not going to defeat you. We will all pray for you and be with you through this. You can do it and we will bw here to make sure you do.

    Strength in sisterhood!
    SUE
  • jazzy1
    jazzy1 Member Posts: 1,379
    susafina said:

    Linda
    Hi Linda,
    What can any of us say But THis really STINKS!! I would like to say something stronger but I won't. I am glad that you are feeling well. Just Know that you are STRONGER than anything. This is not going to defeat you. We will all pray for you and be with you through this. You can do it and we will bw here to make sure you do.

    Strength in sisterhood!
    SUE

    Linda
    This is the pitts but as I can tell, you've got the same positive attitude you've had on this site from day one! Nothing in life can prepare us for bad news, but we're a better person if we can tower over the news and enjoy our life as best we can. So happy you're feeling good, as that keeps the energy flowing and the positive vibes moving.

    You're in my prayers and thoughts...hoping you and your family have a joyous holiday season!!
    Jan
  • Ro10
    Ro10 Member Posts: 1,561 Member
    Linda, so sorry for your latest results
    My heart just skipped a beat when I read your note. I feel so bad for you. You have fought so hard all along, that is makes me feel so terrible. I am glad the Doxil worked on your lymph node under your arm. How can there be mets to the liver? I don't understand, as I am sure you do not understand either. I am shell-shocked, and it is not even me that got the news. I hope if carbo is the drug of choice that it takes care of the mets.

    I am glad you feel so good, and do not have any symptoms. I am so happy that you feel healthy. You do all you can to keep yourself healthy. I too wonder if I feel so good how can something so bad be going on? Of course there is no answer to that question.

    I appreciate you sharing all of your news. I know it can't be easy to share it. You and your family remain in my prayers. In peace and caring.
  • Always Hopeful
    Always Hopeful Member Posts: 234
    RIGHT!!! RIGHT!!! RIGHT!!!
    Dear Linda,

    Feeling healthy is more than half the battle! DO NOT let this set you or your family back. You are right to stay focused on the the fact that you are symptom free. Is there the possibility that what is being seen on the liver is, in fact, NOT mets but simply other thingees that some of us have experienced?

    I would guess that we will be hearing from you soon regarding your visit with your chemo onc. I am hoping and praying that the rcommendation is one that is easy to accept and that before long you will be NED again.

    Peace and hope,

    JJ
  • Ro10
    Ro10 Member Posts: 1,561 Member

    Me too (vaginal cuff)
    Well Linda it looks like you and I will both be going through chemo together, I start on the 29th of Dec. with Carbo. I had a biopsy of the vaginal cuff and it came back positive. My lung nodules are stable ( well the older ones are) and some small new ones showed up but they can't be sure those are cancer. I still think the Doxil will help with the liver mets, it's such a slow chemo and I hope the next treatment stage helps too. I am so bummed out about having to go through this again, but it will be in the winter so not much to do anyway. I had a great summer and I can't complain but I want to anyway. I wish I knew more on the liver mets. I feel very healthy too and I don't have any symptoms of recurrence on the vaginal cuff. The doc says it's not a mass yet but a thickening and that's why it did not show up in the ct scan. I just give up with all this stuff and I am just going with the flow. I will be sending you good vibes to you and my thoughts are with you to. I feel like I am in a nightmare and I want to wake up and say "wow that was a bad dream". Take care and many warm hugs to you.

    Sharon, I am sorry to hear your news, too
    Sharon I am so sorry you have to start treatment again with Carbo. Hope you tolerated the Carbo the first time around. Sorry to hear that the biopsy came back positive on the vaginal cuff. So many articles say that is where the recurrence will happen. I can understand you being bummed out about having to start treatment again. Glad to hear that you, too feel healthy. It would be easier to accept if there were symptoms, wouldn't it. Hope your nightmare ends, soon for you. In peace and caring.
  • Always Hopeful
    Always Hopeful Member Posts: 234

    Me too (vaginal cuff)
    Well Linda it looks like you and I will both be going through chemo together, I start on the 29th of Dec. with Carbo. I had a biopsy of the vaginal cuff and it came back positive. My lung nodules are stable ( well the older ones are) and some small new ones showed up but they can't be sure those are cancer. I still think the Doxil will help with the liver mets, it's such a slow chemo and I hope the next treatment stage helps too. I am so bummed out about having to go through this again, but it will be in the winter so not much to do anyway. I had a great summer and I can't complain but I want to anyway. I wish I knew more on the liver mets. I feel very healthy too and I don't have any symptoms of recurrence on the vaginal cuff. The doc says it's not a mass yet but a thickening and that's why it did not show up in the ct scan. I just give up with all this stuff and I am just going with the flow. I will be sending you good vibes to you and my thoughts are with you to. I feel like I am in a nightmare and I want to wake up and say "wow that was a bad dream". Take care and many warm hugs to you.

    FUZZY TROUBLE
    I am so sorry to hear about the results of your biopsy on your vaginal cuff. Mine was treated with 10 session of radiation (IMRT) and it has shrunk significantly...almost to being non-existent. I hope and pray that your treatment will do the same for you!

    Peace and hope, JJ
  • Sara Zipora
    Sara Zipora Member Posts: 231
    Yours and Fuzzy Trouble's news
    You are the Pathfinder as I have gleaned from your posts. You will find the way out of this temporary tunnel of yucky news. Also it is a known fact that there are many False Positives to PET scans, but anyway you slice it, Attitude goes a long way to physical good health, as one can readily read in your posts.
    Blessed Holiday warm wishes and renewed good health to you both,
    Sara Zipora
  • lindaprocopio
    lindaprocopio Member Posts: 1,980

    Yours and Fuzzy Trouble's news
    You are the Pathfinder as I have gleaned from your posts. You will find the way out of this temporary tunnel of yucky news. Also it is a known fact that there are many False Positives to PET scans, but anyway you slice it, Attitude goes a long way to physical good health, as one can readily read in your posts.
    Blessed Holiday warm wishes and renewed good health to you both,
    Sara Zipora

    & now the 2nd opinion, this time from my chemo onc...
    Yesterday was my gynecologic oncologist. Today I met with my chemo oncologist to come up with a new battle plan. I have to get a 'skin-prick test' to make sure that I have not developed an allergy to platin drugs (as there is a lifetime limit of how much platin drugs you can have and I already did 6 infusions of carboplatin back in late 2008/early 2009 with my initial carbo/taxol rounds.) But assuming I am not allergic, I am starting on single agent carboplatin on Thursday. As long as my blood counts stay decent, I will get this infusion every 3 weeks. If I start to have blood count troubles we will 'fractionate' the dose so that I get it in smaller amounts once a week.

    I was reassured by a lot of the things my oncologist said. He noted that the largest tumor in my liver is TINY, less than 1/2", and that a person can have 90% of their liver full of cancer and still have a normally functioning liver. He reminded me that I remain symptom-free and that carboplatin is one of the 'gold standard' chemos and could very well knock this back.

    We talked a little about radiofrequency ablation
    (http://www.radiologyinfo.org/en/info.cfm?pg=rfa ),
    which is a great option we can re-visit if the carboplatin isn't the Magic Bullet we're hoping it will be. They don't like to do the ablation if you have cancer elsewhere besides the liver because if you run into complications you can't get the systemic chemo you truly need. But we will revisit it if the carboplatin doesn't start dropping my CA125 right away. I continue to be hopeful, and Vic and I both took this latest bad news calmly. We're really okay. So don't worry, any of you! Same war, just a new battle.

    ((((Sharon)))). So sorry for your test results. Back in battle side-by-side again, my sister. I've got your back; you're got mine. HUGS!
  • fuzzytrouble
    fuzzytrouble Member Posts: 212

    & now the 2nd opinion, this time from my chemo onc...
    Yesterday was my gynecologic oncologist. Today I met with my chemo oncologist to come up with a new battle plan. I have to get a 'skin-prick test' to make sure that I have not developed an allergy to platin drugs (as there is a lifetime limit of how much platin drugs you can have and I already did 6 infusions of carboplatin back in late 2008/early 2009 with my initial carbo/taxol rounds.) But assuming I am not allergic, I am starting on single agent carboplatin on Thursday. As long as my blood counts stay decent, I will get this infusion every 3 weeks. If I start to have blood count troubles we will 'fractionate' the dose so that I get it in smaller amounts once a week.

    I was reassured by a lot of the things my oncologist said. He noted that the largest tumor in my liver is TINY, less than 1/2", and that a person can have 90% of their liver full of cancer and still have a normally functioning liver. He reminded me that I remain symptom-free and that carboplatin is one of the 'gold standard' chemos and could very well knock this back.

    We talked a little about radiofrequency ablation
    (http://www.radiologyinfo.org/en/info.cfm?pg=rfa ),
    which is a great option we can re-visit if the carboplatin isn't the Magic Bullet we're hoping it will be. They don't like to do the ablation if you have cancer elsewhere besides the liver because if you run into complications you can't get the systemic chemo you truly need. But we will revisit it if the carboplatin doesn't start dropping my CA125 right away. I continue to be hopeful, and Vic and I both took this latest bad news calmly. We're really okay. So don't worry, any of you! Same war, just a new battle.

    ((((Sharon)))). So sorry for your test results. Back in battle side-by-side again, my sister. I've got your back; you're got mine. HUGS!

    What a Bummer
    I just love that saying Karen, I haven't heard it for a long time and I am now going to use that every time I hear bad news from the doc. : )
    Thank you all for your support and I know Linda and I will do great with our next step of treatments. Has anyone lost all their hair with just Carbo? I had Doxil 9 months ago and my hair got thinner, so now I am wondering if I should go have it cut shorter now, just in case.
    To all out in cancer land I admire you all so much for what we all go through no matter what kind of cancer it is and still have a stiff upper lip. Hugs to you all.
    Sharon
  • Always Hopeful
    Always Hopeful Member Posts: 234

    & now the 2nd opinion, this time from my chemo onc...
    Yesterday was my gynecologic oncologist. Today I met with my chemo oncologist to come up with a new battle plan. I have to get a 'skin-prick test' to make sure that I have not developed an allergy to platin drugs (as there is a lifetime limit of how much platin drugs you can have and I already did 6 infusions of carboplatin back in late 2008/early 2009 with my initial carbo/taxol rounds.) But assuming I am not allergic, I am starting on single agent carboplatin on Thursday. As long as my blood counts stay decent, I will get this infusion every 3 weeks. If I start to have blood count troubles we will 'fractionate' the dose so that I get it in smaller amounts once a week.

    I was reassured by a lot of the things my oncologist said. He noted that the largest tumor in my liver is TINY, less than 1/2", and that a person can have 90% of their liver full of cancer and still have a normally functioning liver. He reminded me that I remain symptom-free and that carboplatin is one of the 'gold standard' chemos and could very well knock this back.

    We talked a little about radiofrequency ablation
    (http://www.radiologyinfo.org/en/info.cfm?pg=rfa ),
    which is a great option we can re-visit if the carboplatin isn't the Magic Bullet we're hoping it will be. They don't like to do the ablation if you have cancer elsewhere besides the liver because if you run into complications you can't get the systemic chemo you truly need. But we will revisit it if the carboplatin doesn't start dropping my CA125 right away. I continue to be hopeful, and Vic and I both took this latest bad news calmly. We're really okay. So don't worry, any of you! Same war, just a new battle.

    ((((Sharon)))). So sorry for your test results. Back in battle side-by-side again, my sister. I've got your back; you're got mine. HUGS!

    Calm & Logical
    Glad to hear, Linda, that after meeting with your chemo onc you have a doable plan of attack. Calm and logic seem to be the order of the day now. "Same war, just a new battle"...a good way of looking at all of this. Continued prayers and positive energy are coming your way.

    Good luck on Thursday.

    Peace and hope, JJ
  • howdybooth
    howdybooth Member Posts: 42

    & now the 2nd opinion, this time from my chemo onc...
    Yesterday was my gynecologic oncologist. Today I met with my chemo oncologist to come up with a new battle plan. I have to get a 'skin-prick test' to make sure that I have not developed an allergy to platin drugs (as there is a lifetime limit of how much platin drugs you can have and I already did 6 infusions of carboplatin back in late 2008/early 2009 with my initial carbo/taxol rounds.) But assuming I am not allergic, I am starting on single agent carboplatin on Thursday. As long as my blood counts stay decent, I will get this infusion every 3 weeks. If I start to have blood count troubles we will 'fractionate' the dose so that I get it in smaller amounts once a week.

    I was reassured by a lot of the things my oncologist said. He noted that the largest tumor in my liver is TINY, less than 1/2", and that a person can have 90% of their liver full of cancer and still have a normally functioning liver. He reminded me that I remain symptom-free and that carboplatin is one of the 'gold standard' chemos and could very well knock this back.

    We talked a little about radiofrequency ablation
    (http://www.radiologyinfo.org/en/info.cfm?pg=rfa ),
    which is a great option we can re-visit if the carboplatin isn't the Magic Bullet we're hoping it will be. They don't like to do the ablation if you have cancer elsewhere besides the liver because if you run into complications you can't get the systemic chemo you truly need. But we will revisit it if the carboplatin doesn't start dropping my CA125 right away. I continue to be hopeful, and Vic and I both took this latest bad news calmly. We're really okay. So don't worry, any of you! Same war, just a new battle.

    ((((Sharon)))). So sorry for your test results. Back in battle side-by-side again, my sister. I've got your back; you're got mine. HUGS!

    Mets to Liver
    Linda - my sister's third reoccurrence (11/09) was to the liver and we went to Dr. Goldstein of Baylor University Hospital in Dallas. He is the director of transplants at Baylor and a leader in the radiofrequency ablation procedure. However, since the main tumor was in the back of the liver, he was burned off the tumors (01/10). She then started chemo, which ended in April and has been cancer free so far (CA125 in the low teens and scans are clear). But – her gyn/onc first priority after it mets to the liver was to surgically remove the them. She lives in El Paso, TX and there wasn't a doctor that could do that type of surgery - that's why she came to Dallas to have it done AND we found Dr. Goldstein on our own!!! Just goes to show you that you must always take the lead on your own health!