CA 125 contines to rise

Ro10
Ro10 Member Posts: 1,561 Member
Went to doctor today and got lab and CAT scan results. It's been 7 weeks since my last CA 125. It went from 84 to 344. Luckily the CAT scan is stable though. Although he says it is just a number, he still thinks I should go on chemo again. It has been 4 months since my last chemo. He said I could wait until after the first of the year to start chemo.

He says that the cancer can spread even though the CAT scan does not show anything. He said the cancer can be like a film spreading inside. That's very discouraging to me. Has anyone else's doctor told them anything like this?

My doctor in Florida said he would wait to start treatment when the CAT scan shows something. I will be anxious to get my Florida doctor's opinion. He is a gyn/ono and the one in Illinois is a med/ono.

I asked about a PET scan and he said the PET only lights up what shows on the CAT scan, and the "film" would not show up on the CAT or PET.

I am feeling good and less tired than I had been. My hair has grown in enough I don't need my hat anymore.......except for warmth when the temperature is 39 degrees.

We are headed for Florida on October 29th, so I will see what my doctor there recommends.
We had a great time in New Mexico and it was amazing to see 500 hot air balloons in the air at one time.

You all remain in my prayers. In peace and caring.
«1

Comments

  • JoAnnDK
    JoAnnDK Member Posts: 275
    CT scan
    Ro, I am sorry you got this news. It is all news to me.

    My doctors HAVE told me that a tumor must be a certain size to show up on a CT scan. So having a "clear" CT scan does not mean there is nothing there. My tumor did not show up on a CT scan but since an endometrial biopsy had shown cancer, we knew what we were dealing with.

    I have no idea about a PET scan ——thought it showed up any cancer.

    Keep us posted.

    Where in FL do you go?
  • daisy366
    daisy366 Member Posts: 1,458 Member
    JoAnnDK said:

    CT scan
    Ro, I am sorry you got this news. It is all news to me.

    My doctors HAVE told me that a tumor must be a certain size to show up on a CT scan. So having a "clear" CT scan does not mean there is nothing there. My tumor did not show up on a CT scan but since an endometrial biopsy had shown cancer, we knew what we were dealing with.

    I have no idea about a PET scan ——thought it showed up any cancer.

    Keep us posted.

    Where in FL do you go?

    Ro
    I am so sorry to hear this news. I think you have an amazing attitude. I am curious what your Florida doc will say. Can you consult via phone???? You might consider a consult with my doc here.

    You are in my prayers. The sun will great you soon. Love, Mary Ann
  • SuziDezi
    SuziDezi Member Posts: 25
    daisy366 said:

    Ro
    I am so sorry to hear this news. I think you have an amazing attitude. I am curious what your Florida doc will say. Can you consult via phone???? You might consider a consult with my doc here.

    You are in my prayers. The sun will great you soon. Love, Mary Ann

    Ro
    I too am sorry to hear of

    Ro

    I too am sorry to hear of your latest news/results. Even though I haven't posted much I have been following the journey of those who do write in. This sisterhood has helped me understand and accept the developments in my life. Marianne's recurrence in the supra-clavicular nodes foreshadowed mine as did your 'observation' period and subsequent return to chemo.
    Just to recap - my Dx was December 2009, the usual chemo and radiation from January to July 2010. CT scan in November 2010 showed a very small para-aortic node, no change in February 2011 but some growth and a second node in May. Then a CT scan of the thorax (never done before) showed a couple of small nodes in neck, needle biopsy in August and Dx of recurrence. Chem (same regimen so I would not lose eligibility for clinical trials) started last Friday. 3 sessions for sure then a CT scan and decisions to be taken following the results.
    Did someone tell me that the cancer could well be there even if it doesn't show up on CT - Yes!! Will they treat until they can see or detect it - No!! My 'team' won't do PET scans either and I suspect for two reasons. #1 - I am in Canada and the protocol for uterine cancer doesn't allow for PET scans. But I could have one done privately for $3,000. The doctor said he wouldn't recommend it because PET scans have too many false positives and negatives and they know that there is something there already.Also Ca125 is not a marker for me at all - it has never been above 27. My gyn/onc says that although they are similar, UPSC and ovarian are still two different cancers and it would be easier to treat me if I had the latter.

    I too am curious about the Florida doctor's opinion. It seems soon for another round of chemo. Would it be the same drugs and regimen? Einstein's definition of insanity comes to mind - doing the same thing and expecting different results. No matter what, the Florida sunshine should boost your spirits and make you more comfortable - I know that is always my reaction when I can escape south. Of course that is not possible while I am in treatment unless I want to gamble a lot because no none will give me any kind of travel insurance.

    All of this to say that I feel a kinship with you and am sending every good vibe and wish your way.

    Suze
  • SuziDezi
    SuziDezi Member Posts: 25
    SuziDezi said:

    Ro
    I too am sorry to hear of

    Ro

    I too am sorry to hear of your latest news/results. Even though I haven't posted much I have been following the journey of those who do write in. This sisterhood has helped me understand and accept the developments in my life. Marianne's recurrence in the supra-clavicular nodes foreshadowed mine as did your 'observation' period and subsequent return to chemo.
    Just to recap - my Dx was December 2009, the usual chemo and radiation from January to July 2010. CT scan in November 2010 showed a very small para-aortic node, no change in February 2011 but some growth and a second node in May. Then a CT scan of the thorax (never done before) showed a couple of small nodes in neck, needle biopsy in August and Dx of recurrence. Chem (same regimen so I would not lose eligibility for clinical trials) started last Friday. 3 sessions for sure then a CT scan and decisions to be taken following the results.
    Did someone tell me that the cancer could well be there even if it doesn't show up on CT - Yes!! Will they treat until they can see or detect it - No!! My 'team' won't do PET scans either and I suspect for two reasons. #1 - I am in Canada and the protocol for uterine cancer doesn't allow for PET scans. But I could have one done privately for $3,000. The doctor said he wouldn't recommend it because PET scans have too many false positives and negatives and they know that there is something there already.Also Ca125 is not a marker for me at all - it has never been above 27. My gyn/onc says that although they are similar, UPSC and ovarian are still two different cancers and it would be easier to treat me if I had the latter.

    I too am curious about the Florida doctor's opinion. It seems soon for another round of chemo. Would it be the same drugs and regimen? Einstein's definition of insanity comes to mind - doing the same thing and expecting different results. No matter what, the Florida sunshine should boost your spirits and make you more comfortable - I know that is always my reaction when I can escape south. Of course that is not possible while I am in treatment unless I want to gamble a lot because no none will give me any kind of travel insurance.

    All of this to say that I feel a kinship with you and am sending every good vibe and wish your way.

    Suze

    Treatment for recurrence in lymph nodes - what to expect?
    Sorry - posted on wrong page.
  • Cindy Bear
    Cindy Bear Member Posts: 569
    Ro
    I am so glad you got to enjoy your summer and have had a chemo break. You are feeling well and have more energy, that has to be a good sign. I have not heard of cancer "film" but I have heard that cancer has to be a certain size to show up on cat scans..Keeping you in my thoughts and hoping for better news.
    Hugs,
    Cindy
  • lindaprocopio
    lindaprocopio Member Posts: 1,980

    Ro
    I am so glad you got to enjoy your summer and have had a chemo break. You are feeling well and have more energy, that has to be a good sign. I have not heard of cancer "film" but I have heard that cancer has to be a certain size to show up on cat scans..Keeping you in my thoughts and hoping for better news.
    Hugs,
    Cindy

    Ah, Ro, I hate for you to have this new worry. (((((Ro))))))
    Personally I would wait until a CT or PET scan verified what the CA125 MIGHT be indicating. Because CA125 is a notoriously unreliable indicator. Many many studies have shown that chemo can kill a 1-cm tumor as fast as a smaller tumor and there is no overall survival advantage to jumping the gun and treating on CA125 alone. & If your oncologist is talking about possible 'seeding' of tiny cancer cells, then a PET scan wouldn't be helpful. Although PET scans are something like 97% accurate at diagnosing cancer in a tumor larger than 1-cm, when a PET lights up anything smaller than that, the 'false positive' and 'false negative' percentages are inacceptably high when tested against a needle biopsy for confirmation.

    You did so good, Ro, riding out your risng CA125 before without too much anxiety. I hope you can relax and enjoy your life and believe in your CT-scan and enjoy yourself until your next scan. Love you, Ro. We've traveled this journey together almost from the beginning.

    I had labs and an endoscopic ultrasound today, but I am not ready yet to talk about the results. I may be in real trouble here, and I am just too tired to go there tonight. My oncologist is supposed to call tonight when he gets the results back on the fluid they removed. If this does turn out to be an 'end of days' liver failure scenario for me, I'm curious whether this Board wants the blow-by-blow, or whether that would be too haunting for some of you. We had a couple of posters on the OVC Board that posted almost until the very end, and that glimpse of how it might be was strangely comforting to me, horrible but so much less worse than my imagination. Anyhooooo, I hope I am just being dramatic tonight because I have been too uncomfortable to sleep the last few nights, and will feel silly when I start getting better to have worried. I came home with a script for some oxycodone so I know I will sleep tonight.
  • Ro10
    Ro10 Member Posts: 1,561 Member

    Ah, Ro, I hate for you to have this new worry. (((((Ro))))))
    Personally I would wait until a CT or PET scan verified what the CA125 MIGHT be indicating. Because CA125 is a notoriously unreliable indicator. Many many studies have shown that chemo can kill a 1-cm tumor as fast as a smaller tumor and there is no overall survival advantage to jumping the gun and treating on CA125 alone. & If your oncologist is talking about possible 'seeding' of tiny cancer cells, then a PET scan wouldn't be helpful. Although PET scans are something like 97% accurate at diagnosing cancer in a tumor larger than 1-cm, when a PET lights up anything smaller than that, the 'false positive' and 'false negative' percentages are inacceptably high when tested against a needle biopsy for confirmation.

    You did so good, Ro, riding out your risng CA125 before without too much anxiety. I hope you can relax and enjoy your life and believe in your CT-scan and enjoy yourself until your next scan. Love you, Ro. We've traveled this journey together almost from the beginning.

    I had labs and an endoscopic ultrasound today, but I am not ready yet to talk about the results. I may be in real trouble here, and I am just too tired to go there tonight. My oncologist is supposed to call tonight when he gets the results back on the fluid they removed. If this does turn out to be an 'end of days' liver failure scenario for me, I'm curious whether this Board wants the blow-by-blow, or whether that would be too haunting for some of you. We had a couple of posters on the OVC Board that posted almost until the very end, and that glimpse of how it might be was strangely comforting to me, horrible but so much less worse than my imagination. Anyhooooo, I hope I am just being dramatic tonight because I have been too uncomfortable to sleep the last few nights, and will feel silly when I start getting better to have worried. I came home with a script for some oxycodone so I know I will sleep tonight.

    Linda you remain in my prayers
    Linda you are right that we have traveled this journey together almost from the beginning. Your road has been much more difficult than mine has been. I feel so bad for you for all you have been through. You are such a warrior and I admire your fight and determination so much.

    Sorry if you did not get good results from your endoscopic ultrasound today. I was hoping they could do the paracentesis today, too. I hope the diuretics are helping to make you more comfortable, and the fluid is not building up greater than the pills can handle.

    I pray it is not "end of days liver failure" for you. You have shared so much of all your experiences with us, and we appreciate it. Whatever you feel you want to share, we will be happy to hear. We want to continue to offer support for you, as you have supported so many of us. We don't expect every post to be a good day for you, we know we all have bad days, too.

    You definitely are not "silly" because you are worried. I know when you don't get sleep everything looks so bleak. I hope you get a good night sleep tonight and are more comfortable with your oxycodone.

    You are my hero and I pray for peace and comfort for you. In peace and caring.
  • paris11
    paris11 Member Posts: 159
    Ro10 said:

    Linda you remain in my prayers
    Linda you are right that we have traveled this journey together almost from the beginning. Your road has been much more difficult than mine has been. I feel so bad for you for all you have been through. You are such a warrior and I admire your fight and determination so much.

    Sorry if you did not get good results from your endoscopic ultrasound today. I was hoping they could do the paracentesis today, too. I hope the diuretics are helping to make you more comfortable, and the fluid is not building up greater than the pills can handle.

    I pray it is not "end of days liver failure" for you. You have shared so much of all your experiences with us, and we appreciate it. Whatever you feel you want to share, we will be happy to hear. We want to continue to offer support for you, as you have supported so many of us. We don't expect every post to be a good day for you, we know we all have bad days, too.

    You definitely are not "silly" because you are worried. I know when you don't get sleep everything looks so bleak. I hope you get a good night sleep tonight and are more comfortable with your oxycodone.

    You are my hero and I pray for peace and comfort for you. In peace and caring.

    "You are my hero" ...mine too
    Sweet Girl,

    All my thoughts and prayers are with you tonight.

    Sleep well, my dear friend.

    Connie
  • JoAnnDK
    JoAnnDK Member Posts: 275
    Ro10 said:

    Linda you remain in my prayers
    Linda you are right that we have traveled this journey together almost from the beginning. Your road has been much more difficult than mine has been. I feel so bad for you for all you have been through. You are such a warrior and I admire your fight and determination so much.

    Sorry if you did not get good results from your endoscopic ultrasound today. I was hoping they could do the paracentesis today, too. I hope the diuretics are helping to make you more comfortable, and the fluid is not building up greater than the pills can handle.

    I pray it is not "end of days liver failure" for you. You have shared so much of all your experiences with us, and we appreciate it. Whatever you feel you want to share, we will be happy to hear. We want to continue to offer support for you, as you have supported so many of us. We don't expect every post to be a good day for you, we know we all have bad days, too.

    You definitely are not "silly" because you are worried. I know when you don't get sleep everything looks so bleak. I hope you get a good night sleep tonight and are more comfortable with your oxycodone.

    You are my hero and I pray for peace and comfort for you. In peace and caring.

    oh, Linda
    I am so sad that you are going through such a bad time. My heart aches for you....you really are our hero.

    Hugs,
    JOANN
  • Kaleena
    Kaleena Member Posts: 2,088 Member

    Ah, Ro, I hate for you to have this new worry. (((((Ro))))))
    Personally I would wait until a CT or PET scan verified what the CA125 MIGHT be indicating. Because CA125 is a notoriously unreliable indicator. Many many studies have shown that chemo can kill a 1-cm tumor as fast as a smaller tumor and there is no overall survival advantage to jumping the gun and treating on CA125 alone. & If your oncologist is talking about possible 'seeding' of tiny cancer cells, then a PET scan wouldn't be helpful. Although PET scans are something like 97% accurate at diagnosing cancer in a tumor larger than 1-cm, when a PET lights up anything smaller than that, the 'false positive' and 'false negative' percentages are inacceptably high when tested against a needle biopsy for confirmation.

    You did so good, Ro, riding out your risng CA125 before without too much anxiety. I hope you can relax and enjoy your life and believe in your CT-scan and enjoy yourself until your next scan. Love you, Ro. We've traveled this journey together almost from the beginning.

    I had labs and an endoscopic ultrasound today, but I am not ready yet to talk about the results. I may be in real trouble here, and I am just too tired to go there tonight. My oncologist is supposed to call tonight when he gets the results back on the fluid they removed. If this does turn out to be an 'end of days' liver failure scenario for me, I'm curious whether this Board wants the blow-by-blow, or whether that would be too haunting for some of you. We had a couple of posters on the OVC Board that posted almost until the very end, and that glimpse of how it might be was strangely comforting to me, horrible but so much less worse than my imagination. Anyhooooo, I hope I am just being dramatic tonight because I have been too uncomfortable to sleep the last few nights, and will feel silly when I start getting better to have worried. I came home with a script for some oxycodone so I know I will sleep tonight.

    Ro & Linda:
    Ro I am sorry to

    Ro & Linda:

    Ro I am sorry to hear about possible chemo again. As Linda said, you are doing so well riding out your rising CA125 and with a good CT scan, let the anxiety go. I am praying for you that all will be good. (((Ro)))

    Linda, I do not have the words that I wish to say to you other than you are always in my prayers and that no matter what you are going through, you are a real inspiration to others. You are one person who really knows what life is about and loves to share it. I think if you do not post, it would be more of a shock than not. I hope you get a restful sleep tonight and you start to feel comfortable again. (((Linda)))

    Kathy
  • CindyGSD
    CindyGSD Member Posts: 190
    Kaleena said:

    Ro & Linda:
    Ro I am sorry to

    Ro & Linda:

    Ro I am sorry to hear about possible chemo again. As Linda said, you are doing so well riding out your rising CA125 and with a good CT scan, let the anxiety go. I am praying for you that all will be good. (((Ro)))

    Linda, I do not have the words that I wish to say to you other than you are always in my prayers and that no matter what you are going through, you are a real inspiration to others. You are one person who really knows what life is about and loves to share it. I think if you do not post, it would be more of a shock than not. I hope you get a restful sleep tonight and you start to feel comfortable again. (((Linda)))

    Kathy

    So sorry
    Ro and Linda....

    Because I'm new to this board I've been hesitant to respond to some of these more emotional threads, lest my expressions of sympathy sound superficial, but I want you both to know that you are in my thoughts.

    Cindy
  • CindyGSD
    CindyGSD Member Posts: 190
    Kaleena said:

    Ro & Linda:
    Ro I am sorry to

    Ro & Linda:

    Ro I am sorry to hear about possible chemo again. As Linda said, you are doing so well riding out your rising CA125 and with a good CT scan, let the anxiety go. I am praying for you that all will be good. (((Ro)))

    Linda, I do not have the words that I wish to say to you other than you are always in my prayers and that no matter what you are going through, you are a real inspiration to others. You are one person who really knows what life is about and loves to share it. I think if you do not post, it would be more of a shock than not. I hope you get a restful sleep tonight and you start to feel comfortable again. (((Linda)))

    Kathy

    So sorry
    Sorry...duplicate
  • HellieC
    HellieC Member Posts: 524 Member
    Ro10 said:

    Linda you remain in my prayers
    Linda you are right that we have traveled this journey together almost from the beginning. Your road has been much more difficult than mine has been. I feel so bad for you for all you have been through. You are such a warrior and I admire your fight and determination so much.

    Sorry if you did not get good results from your endoscopic ultrasound today. I was hoping they could do the paracentesis today, too. I hope the diuretics are helping to make you more comfortable, and the fluid is not building up greater than the pills can handle.

    I pray it is not "end of days liver failure" for you. You have shared so much of all your experiences with us, and we appreciate it. Whatever you feel you want to share, we will be happy to hear. We want to continue to offer support for you, as you have supported so many of us. We don't expect every post to be a good day for you, we know we all have bad days, too.

    You definitely are not "silly" because you are worried. I know when you don't get sleep everything looks so bleak. I hope you get a good night sleep tonight and are more comfortable with your oxycodone.

    You are my hero and I pray for peace and comfort for you. In peace and caring.

    Ro and Linda
    Ro - I am so sorry that you are going to have to dive in to treatment again. I hope and pray that they can knock this back again for you.

    Linda - from the day I joined these boards, I have been impressed and humbled by your whole approach. I agree with Ro in that whatever you want to share, we will be happy to hear and, I hope, support you. I do hope that you are comfortable and remain so.

    Ladies, I can't find the words to say what I feel for you, but you are both in my thoughts and prayers.

    Helen
  • norma2
    norma2 Member Posts: 479

    Ah, Ro, I hate for you to have this new worry. (((((Ro))))))
    Personally I would wait until a CT or PET scan verified what the CA125 MIGHT be indicating. Because CA125 is a notoriously unreliable indicator. Many many studies have shown that chemo can kill a 1-cm tumor as fast as a smaller tumor and there is no overall survival advantage to jumping the gun and treating on CA125 alone. & If your oncologist is talking about possible 'seeding' of tiny cancer cells, then a PET scan wouldn't be helpful. Although PET scans are something like 97% accurate at diagnosing cancer in a tumor larger than 1-cm, when a PET lights up anything smaller than that, the 'false positive' and 'false negative' percentages are inacceptably high when tested against a needle biopsy for confirmation.

    You did so good, Ro, riding out your risng CA125 before without too much anxiety. I hope you can relax and enjoy your life and believe in your CT-scan and enjoy yourself until your next scan. Love you, Ro. We've traveled this journey together almost from the beginning.

    I had labs and an endoscopic ultrasound today, but I am not ready yet to talk about the results. I may be in real trouble here, and I am just too tired to go there tonight. My oncologist is supposed to call tonight when he gets the results back on the fluid they removed. If this does turn out to be an 'end of days' liver failure scenario for me, I'm curious whether this Board wants the blow-by-blow, or whether that would be too haunting for some of you. We had a couple of posters on the OVC Board that posted almost until the very end, and that glimpse of how it might be was strangely comforting to me, horrible but so much less worse than my imagination. Anyhooooo, I hope I am just being dramatic tonight because I have been too uncomfortable to sleep the last few nights, and will feel silly when I start getting better to have worried. I came home with a script for some oxycodone so I know I will sleep tonight.

    Linda
    You have given hope and support to so many here. I don't really know what to say except that I am thinking of you and praying for you.
    RO I am also thinking of you too. Wish I had the right words for both of you. Funny how people you meet on the internet become a part of our lives. I feel like I know a lot of the ladies on this board. And I care about what happens to each one.
  • sunflash
    sunflash Member Posts: 197 Member
    norma2 said:

    Linda
    You have given hope and support to so many here. I don't really know what to say except that I am thinking of you and praying for you.
    RO I am also thinking of you too. Wish I had the right words for both of you. Funny how people you meet on the internet become a part of our lives. I feel like I know a lot of the ladies on this board. And I care about what happens to each one.

    Ro and Linda
    I'm sending big hugs and prayers to both of you.

    So sorry you're facing this...........keep up your faith!

    Wish I had words to express what I'm feeling.....you are both such lovely ladies who have given so much!
  • kkstef
    kkstef Member Posts: 688 Member
    Thinking of you Ro!
    Ro,

    I was so sorry to hear about your rising CA125....but I hope it means absolutely nothing. It is hopeful that you are feeling good, less tired, more hair and much more energy. That is GOOD news!

    Will be anxious to hear what your oncologist in Florida has to say.....You are always such an inspiration and I wish you only GOOD NEWS!!

    Hugs, Karen
  • snowbird_11
    snowbird_11 Member Posts: 160
    Hi, Ro, Annie here. So sorry
    Hi, Ro, Annie here. So sorry to hear your CA 125 is creeping up so soon after your chemo. Mine has behaved similarly as well, creeping up after stopping chemo. You asked about 'normal" CAT scan results. When I commented to my doctor recently 'well at least there is no evidence on scans (PET/CT) of organ involvement, just in my lymph nodes,' he seemed surprised at my naivety and indicated that if it is in my lymph nodes, then it is everywhere in my body and that 'scans don't show everything.' I was hesitant to relate this info as we all are so excited with 'clean' scans. I guess that is why we are considered NED (No Evidence of Disease) rather than 'in remission.' Even back in January when I had clean PET/CT and normal CA 125, my gyn onc noted that the cancer was in no way 'gone' just not evident - I just chose not to deal with this info at that time.

    Unfortunately, our papillary serous cancer has a tendency to be more like a 'film spreading inside' than forming solid tumors. My doctor is leaving chemo up to me noting he is hesitant to start without symptoms if the patient is basically feeling well and enjoying quality of life. I have an appt. in a few weeks to consult with another gyn onc that will hopefully elicit more info on managing this disease. Likewise, I will be interested to hear what your Florida doctor has to say.

    My thoughts and prayers are with you to continue to feel well and enjoy life.
    Annie
  • sleem
    sleem Member Posts: 92

    Hi, Ro, Annie here. So sorry
    Hi, Ro, Annie here. So sorry to hear your CA 125 is creeping up so soon after your chemo. Mine has behaved similarly as well, creeping up after stopping chemo. You asked about 'normal" CAT scan results. When I commented to my doctor recently 'well at least there is no evidence on scans (PET/CT) of organ involvement, just in my lymph nodes,' he seemed surprised at my naivety and indicated that if it is in my lymph nodes, then it is everywhere in my body and that 'scans don't show everything.' I was hesitant to relate this info as we all are so excited with 'clean' scans. I guess that is why we are considered NED (No Evidence of Disease) rather than 'in remission.' Even back in January when I had clean PET/CT and normal CA 125, my gyn onc noted that the cancer was in no way 'gone' just not evident - I just chose not to deal with this info at that time.

    Unfortunately, our papillary serous cancer has a tendency to be more like a 'film spreading inside' than forming solid tumors. My doctor is leaving chemo up to me noting he is hesitant to start without symptoms if the patient is basically feeling well and enjoying quality of life. I have an appt. in a few weeks to consult with another gyn onc that will hopefully elicit more info on managing this disease. Likewise, I will be interested to hear what your Florida doctor has to say.

    My thoughts and prayers are with you to continue to feel well and enjoy life.
    Annie

    New Data thx
    Thank you for adding info about film spreading & nodes. This is new term for me even with all the research I've done.
  • Kaleena
    Kaleena Member Posts: 2,088 Member

    Hi, Ro, Annie here. So sorry
    Hi, Ro, Annie here. So sorry to hear your CA 125 is creeping up so soon after your chemo. Mine has behaved similarly as well, creeping up after stopping chemo. You asked about 'normal" CAT scan results. When I commented to my doctor recently 'well at least there is no evidence on scans (PET/CT) of organ involvement, just in my lymph nodes,' he seemed surprised at my naivety and indicated that if it is in my lymph nodes, then it is everywhere in my body and that 'scans don't show everything.' I was hesitant to relate this info as we all are so excited with 'clean' scans. I guess that is why we are considered NED (No Evidence of Disease) rather than 'in remission.' Even back in January when I had clean PET/CT and normal CA 125, my gyn onc noted that the cancer was in no way 'gone' just not evident - I just chose not to deal with this info at that time.

    Unfortunately, our papillary serous cancer has a tendency to be more like a 'film spreading inside' than forming solid tumors. My doctor is leaving chemo up to me noting he is hesitant to start without symptoms if the patient is basically feeling well and enjoying quality of life. I have an appt. in a few weeks to consult with another gyn onc that will hopefully elicit more info on managing this disease. Likewise, I will be interested to hear what your Florida doctor has to say.

    My thoughts and prayers are with you to continue to feel well and enjoy life.
    Annie

    Funny you bring this up,
    Funny you bring this up, Annie. All throughout my treatment from the get go my scans were negative. I had a laparscopy and an internal ultrasound prior to my original hysterectomy. The only thing they saw was severe endometriosis (not cancer) and that my uterus was tilted. After hyterectomy, they found the cancer so I had staging surgery. All was negative. From there I have had many CT scans. In 2009, I was told I had a recurrence. I had a CT scan, PET/CT and a MRI within weeks of each other because they were all negative. But I did have a positive biopsy. When I had surgery, everything was negative. However, they removed lymph nodes and one node tested positive for microscopic cells.

    I had originally pushed my doctors in finding something due to pain that I thought was not normal. I even had a colonoscopy which was good. For my recurrence, I had been having pain for over a year and although it was on a CT scan from day 1, it never changed. In fact, the last scan it had reduced in size.

    Like you said, my doctor only said that it is treatable.

    Thanks for posting this.

    Kathy
  • Bluebird Bush
    Bluebird Bush Member Posts: 28
    CA125 continues to rise
    Ro, I am so sorry about this latest development. Even though the CA125 has risen I take it that it is heartening that the CT scan report appears to be good. I hope the "stable" means no evidence of anything large enough to appear on the scan. It just seems like it would be easier for the chemo to kill off smaller clusters of cells.

    Your trip out west sounds like it was really great. Hope your time in Florida will be good too, and lots of fresh Florida salt air will feel terrific. Please keep us posted, Geni