CA 125 contines to rise

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?

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

Cindy Bear said:

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

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.

lindaprocopio said:

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.

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

lindaprocopio said:

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.

snowbird_11 said:

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