CA 125 contines to rise

Songflower

Bluebird Bush said:

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

You're in My Heart
Dear Ro,

You are in my heart; the recurrances are so hard. You have been brave and strong. My Doc doesn't really like PET scans; he prefers the pictures he gets with CAT scans. My Gynonc prefers PET scans. I have had both close together and really can't tell the difference in diagnosis. My Doc treated me years ago for breast cancer and he believes in hitting the cells when they are seeding. He also told me no one can tell you how long you have to live.

I hope you enjoy this trip. I am have surgery Nov 2 in which they "paste" the lining of my lungs together. I am doing well after the pulmonary embolus.

You show the world and have a great trip. Our Love is lifting you up!

Diane

JoAnnDK

Songflower said:

You're in My Heart
Dear Ro,

You are in my heart; the recurrances are so hard. You have been brave and strong. My Doc doesn't really like PET scans; he prefers the pictures he gets with CAT scans. My Gynonc prefers PET scans. I have had both close together and really can't tell the difference in diagnosis. My Doc treated me years ago for breast cancer and he believes in hitting the cells when they are seeding. He also told me no one can tell you how long you have to live.

I hope you enjoy this trip. I am have surgery Nov 2 in which they "paste" the lining of my lungs together. I am doing well after the pulmonary embolus.

You show the world and have a great trip. Our Love is lifting you up!

Diane

I also knew
.....from the beginning that CT scans only show growths of a certain size. One of my best friends is the radiologist who did my first CT scan and she told me this just to warn me against euphoria because it was clean. She was right. So I try to temper my joy when I have a "clean" CT scan and a good exam. My CA 125 has never been elevated even the day of surgery. There is just not much else anyone can do as far as diagnosis.

I have never heard this cancer described as a "film" spreading inside us. Will have to learn more about that.

JoAnn

california_artist

JoAnnDK said:

I also knew
.....from the beginning that CT scans only show growths of a certain size. One of my best friends is the radiologist who did my first CT scan and she told me this just to warn me against euphoria because it was clean. She was right. So I try to temper my joy when I have a "clean" CT scan and a good exam. My CA 125 has never been elevated even the day of surgery. There is just not much else anyone can do as far as diagnosis.

I have never heard this cancer described as a "film" spreading inside us. Will have to learn more about that.

JoAnn

It is not the CT's that are limited in accuracy below a certain
size--1 cm--it's the PET that has these limitations.

That is one reason why it's relatively easy to have a CT and can be very difficult to get a PET, in addition to the cost of the PET being higher than the CT it is not always accurate at detecting smaller size tumors.

CT's detect turmors at sizes well below the 1cm size.

TiggersDoBounce

Ro, Ro, Ro...
Sending you healing thoughts...mind, body and soul....

So much uncertainty, worry and stress....sorry you are having to live thru this tough time.

Keep us posted on what the Florida docs have to say...why can't they conference with each other....

Keeping you close in thoughts and prayers...

Laurie

TiggersDoBounce

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.

Linda
Linda,

You remain a strong dose of inspiration, motivation and reality check-ness all rolled into one for us on this board...

Stay strong and let us be there for you..

Wishing you the best results possible. I hope you are getting some much needed rest this weekend...

Stay in touch...

Laurie

maggie_wilson

TiggersDoBounce said:

Ro, Ro, Ro...
Sending you healing thoughts...mind, body and soul....

So much uncertainty, worry and stress....sorry you are having to live thru this tough time.

Keep us posted on what the Florida docs have to say...why can't they conference with each other....

Keeping you close in thoughts and prayers...

Laurie

ro and linda
sisters,

i'm so sorry you're having to go through all this worry and angst, though i do appreciate you both posting. you've both been inspirational to me, and i can't say enough about how much that means to me.

my doctor compared upsc to parmesan cheese the way it spreads..been hard to eat parmesan after that. i had half a dozen ct scans and ultrasounds before i had a d&c and was diagnosed, and nothing showed up expect a couple of fibroids and a cyst on my ovary. i don't know what to make of pet vs ct. i do know that it's harder for my doctor to get a pet scan authorized than a ct scan.

in any case, i'm thinking of you both and holding you close to my heart. sometimes there's unexpected good news, too.

sisterhood and hugs,
maggie

Ro10

maggie_wilson said:

ro and linda
sisters,

i'm so sorry you're having to go through all this worry and angst, though i do appreciate you both posting. you've both been inspirational to me, and i can't say enough about how much that means to me.

my doctor compared upsc to parmesan cheese the way it spreads..been hard to eat parmesan after that. i had half a dozen ct scans and ultrasounds before i had a d&c and was diagnosed, and nothing showed up expect a couple of fibroids and a cyst on my ovary. i don't know what to make of pet vs ct. i do know that it's harder for my doctor to get a pet scan authorized than a ct scan.

in any case, i'm thinking of you both and holding you close to my heart. sometimes there's unexpected good news, too.

sisterhood and hugs,
maggie

Thank you everyone
Thank you so much for your encouragement and comments. They mean so much. I do apprecaite all the support that everyone gives.

I am of the mind-set that the CA 125 is "just a number" and I continue to enjoy each day. Will make my appointment when we get to Florida and find out what "the plan" will be. My onocologist here did not fax my records to the Florida doctor. He only sent it to my primary care physician. I was glad that others have heard of "the film" and how the cancer can spread. Not that I like it, but glad others have heard it from their doctors.

My doctor in Florida also believes in quality of life and not starting chemo and depleting the bodies defenses before you really need to. I hope I hear those same thoughts again.

Keeping you all in my prayers. In peace and caring.

barb55

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.

Linda
Linda-Just thank you. Please don't feel you need to edit for us too much- it is your warmth, intelligence and great honesty that got me into this blog in the beginning. I 'm sending my love and wishing you a good nights sleep- hope the oxycodone helps with your pain. Barb

Ro10

Songflower said:

You're in My Heart
Dear Ro,

You are in my heart; the recurrances are so hard. You have been brave and strong. My Doc doesn't really like PET scans; he prefers the pictures he gets with CAT scans. My Gynonc prefers PET scans. I have had both close together and really can't tell the difference in diagnosis. My Doc treated me years ago for breast cancer and he believes in hitting the cells when they are seeding. He also told me no one can tell you how long you have to live.

I hope you enjoy this trip. I am have surgery Nov 2 in which they "paste" the lining of my lungs together. I am doing well after the pulmonary embolus.

You show the world and have a great trip. Our Love is lifting you up!

Diane

Diane, been thinking about you
I wondered how you were doing after your pulmony embolus. That was serious stuff. I am glad you are doing well. Sorry to hear you are going to have surgery to "paste" the lining of your lungs together. Is this to keep the fluid from building up? I hope that all goes well for you with the surgery. You remain in my prayers. In peace and caring.

Double Whammy

Ro10 said:

Thank you everyone
Thank you so much for your encouragement and comments. They mean so much. I do apprecaite all the support that everyone gives.

I am of the mind-set that the CA 125 is "just a number" and I continue to enjoy each day. Will make my appointment when we get to Florida and find out what "the plan" will be. My onocologist here did not fax my records to the Florida doctor. He only sent it to my primary care physician. I was glad that others have heard of "the film" and how the cancer can spread. Not that I like it, but glad others have heard it from their doctors.

My doctor in Florida also believes in quality of life and not starting chemo and depleting the bodies defenses before you really need to. I hope I hear those same thoughts again.

Keeping you all in my prayers. In peace and caring.

To all of you dealing with managing and conquering recurrences
Gosh, I can't begin to express my admiration for you women! I don't have the words, but please know that you're all in my heart and prayers - and I hope you will continue to post to let us know of your health status, and mostly to seek our support and comfort, which I know we all give with love.

Suzanne

JoAnnDK

california_artist said:

It is not the CT's that are limited in accuracy below a certain
size--1 cm--it's the PET that has these limitations.

That is one reason why it's relatively easy to have a CT and can be very difficult to get a PET, in addition to the cost of the PET being higher than the CT it is not always accurate at detecting smaller size tumors.

CT's detect turmors at sizes well below the 1cm size.

CT and PET
The size of the smallest tumor picked up by CT varies with the machine...later models do 1/2 cm cuts instead of 1 cm cuts, but tumors of up to a centimeter can be missed if they happen to fall between the cuts.

CT scan can miss a lot of pelvic pathology. If your pelvis is a primary site, you might want to use ultrasound scans as well, and MRI if there are any suspicious lesions.

PET scans will highlight a high grade, active metabolizing tumor that is 7mm or larger. Low grade tumors will not pick up enough radioisotope to distinguish themselves against background, nor will very small tumors.

——from a radiology site

Cynthia Rose

Ro10 said:

Thank you everyone
Thank you so much for your encouragement and comments. They mean so much. I do apprecaite all the support that everyone gives.

I am of the mind-set that the CA 125 is "just a number" and I continue to enjoy each day. Will make my appointment when we get to Florida and find out what "the plan" will be. My onocologist here did not fax my records to the Florida doctor. He only sent it to my primary care physician. I was glad that others have heard of "the film" and how the cancer can spread. Not that I like it, but glad others have heard it from their doctors.

My doctor in Florida also believes in quality of life and not starting chemo and depleting the bodies defenses before you really need to. I hope I hear those same thoughts again.

Keeping you all in my prayers. In peace and caring.

How are you doing? My Mom
How are you doing? My Mom had her CA 125 done 2 Months Ago And It was 66, Now 2 months later It is 192. Her scan Is clear! Its hard not to worry. The Dr. said it could be her cyst causing the number to rise.Its a sensitive test.