CA 125 test

Abbycat2 · May 2014

Hi , Ladies,

I finished 6 cycles of Taxol/Carboplatin in March, 2014 for stage 3A UPSC and am currently NED. I would like to know how often the ladies diagnosed with stage 3/4 , grade 3 cancer have had the CA 125 test done. If there is one thing I have learned in this cancer journey I never asked to go on is that I must advocate for my own treatment and evaluations because there is no medical personnel more vested in my continued existence then I am.

Thanks, Cathy

Luv2paint · May 2014

ca 125

Hi Cathy,

I was diagnosed April 2010, & i have Ca 125 done every 3-4 months, so far the results have been fine, NED. I did have aggressive Chemo & radiation done because

I opted not to have further surgery to have lymph nodes & omentum removed. The 3a UPSC was diagnosed, after the Da Vinci Robotic hysterectomy, due to another area of the

uterus having a UPSC lesion. Luckily it had not gone more than 50% through the uterine wall. I do realise that my being 75 yrs old now, gives me a different perspective than the younger

ladies. I do not look at the test results to decide if I would do more chemo, because I have already determined that I would not, and I am at peace with that decision.

I do have neuropathy in my fingers & feet, which is aggravating but not impossible to live with. I will be having a hip replacement soon, goes with the age I suppose.LOL

Wishing you all the best on your journey, NED forever.

MO

Kaleena · May 2014

Be your own advocate!

Cathy:

You are right that you have to be your own advocate. I say if you want a CA125 test done then ask for it. If you don't want to have it done, let the doc know that you rather not at this time. I had gotten to the point right after I was done treating that I would actually call the doctor's office a month before my appointment and tell them and ask them what tests or scans that I may be looking at. I then asked the PA to send me a script so that I could have those tests done PRIOR to my appointment with the doctor so that by the time I saw the doctor he/she would already have the results. It was so much better than going to an appointment, then getting scans and/or tests and then waiting for a call back. Also, this way if you have any questions or concerns you can ask the doctor face to face instead of getting an answer from the PA or others. It made me feel that I did have some control.

I hadn't had the CA125 test done for years, but just recently I began to request it. I just wanted to know.

In any event, I am glad that you have finished treatment. You must be so relieved! Time to dance!

My best to you,

Kathy

pinky104 · May 2014

CA 125 Test Frequency

I had stage IVb UPSC surgery in May of 2010, so I am 4 years out from surgery this month. I had the same chemo you had, nothing else. I've had CA 125's done every 3 months up until November, 2013, and now, I'm having them every 6 months. My next one is in June. My CA 125 at my last visit was 7. I wish you good luck like I've had.

Abbycat2 · May 2014

Luv2paint said:
ca 125
Hi Cathy,

I was diagnosed April 2010, & i have Ca 125 done every 3-4 months, so far the results have been fine, NED. I did have aggressive Chemo & radiation done because

I opted not to have further surgery to have lymph nodes & omentum removed. The 3a UPSC was diagnosed, after the Da Vinci Robotic hysterectomy, due to another area of the

uterus having a UPSC lesion. Luckily it had not gone more than 50% through the uterine wall. I do realise that my being 75 yrs old now, gives me a different perspective than the younger

ladies. I do not look at the test results to decide if I would do more chemo, because I have already determined that I would not, and I am at peace with that decision.

I do have neuropathy in my fingers & feet, which is aggravating but not impossible to live with. I will be having a hip replacement soon, goes with the age I suppose.LOL

Wishing you all the best on your journey, NED forever.

MO

Thank you, Mo!

Thank you, Mo, for responding to my post. I am sorry to hear that you still have neuropathy in your hands and feet; I guess this is a common side effect of the chemo. My neuropathy is in my toes and the balls of my feet. I've only had two Ca 125 test- one before and one after chemotherapy and both were within normal range, so I've wondered how useful the test is for me. Do you get CAT Scans and if so, how often? My last CAT scan did not show any signs of disease. I am 61-years-old and I want to grab as many more years of good quality life that I can so I plan to treat any recurrence I may get, if possible. I wish you the very best with your hip replacement and that you continue to remain NED.

Cathy

Abbycat2 · May 2014

Kaleena said:
Be your own advocate!
Cathy:

You are right that you have to be your own advocate. I say if you want a CA125 test done then ask for it. If you don't want to have it done, let the doc know that you rather not at this time. I had gotten to the point right after I was done treating that I would actually call the doctor's office a month before my appointment and tell them and ask them what tests or scans that I may be looking at. I then asked the PA to send me a script so that I could have those tests done PRIOR to my appointment with the doctor so that by the time I saw the doctor he/she would already have the results. It was so much better than going to an appointment, then getting scans and/or tests and then waiting for a call back. Also, this way if you have any questions or concerns you can ask the doctor face to face instead of getting an answer from the PA or others. It made me feel that I did have some control.

I hadn't had the CA125 test done for years, but just recently I began to request it. I just wanted to know.

In any event, I am glad that you have finished treatment. You must be so relieved! Time to dance!

My best to you,

Kathy

Kathy, I love your suggestion!

I like the idea of calling the doctor before the appointment and requesting the necessary tests. It would save me both time and money, since I pay $25.00 each and everytime I see a doctor. How often do you get a CAT Scan? I am done with treatment but I can't help but feel that I am in limbo somehow- waiting to see if the cancer returns or not, and being grateful for each and everyday that I feel good. Is the CA125 a good assessment tool for you? I've only had two CA125 tests done and the results were normal, so I don't know how helpful the test is for me. I always read your threads as you are a wealth of information and you are so positive and encouraging.

Best Wishes,

Cathy

Abbycat2 · May 2014

pinky104 said:
CA 125 Test Frequency
I had stage IVb UPSC surgery in May of 2010, so I am 4 years out from surgery this month. I had the same chemo you had, nothing else. I've had CA 125's done every 3 months up until November, 2013, and now, I'm having them every 6 months. My next one is in June. My CA 125 at my last visit was 7. I wish you good luck like I've had.

Thank you, Pinky!

It seems that many of the ladies on this board get the CA125 done every three months or so. Do you have CAT Scans done and if so, how often? Congratulations on doing so well now for 4 years! I hope that I am as fortunate.

Best Wishes,

Cathy

Kaleena · May 2014

Abbycat2 said:
Kathy, I love your suggestion!
I like the idea of calling the doctor before the appointment and requesting the necessary tests. It would save me both time and money, since I pay $25.00 each and everytime I see a doctor. How often do you get a CAT Scan? I am done with treatment but I can't help but feel that I am in limbo somehow- waiting to see if the cancer returns or not, and being grateful for each and everyday that I feel good. Is the CA125 a good assessment tool for you? I've only had two CA125 tests done and the results were normal, so I don't know how helpful the test is for me. I always read your threads as you are a wealth of information and you are so positive and encouraging.

Best Wishes,

Cathy

Tests and scans

Cathy

For awhile, I was getting a CT scan every year with a PET scan thrown in here and there. I quit getting CA125 tests because it was never an indicator for me. However recently, I started to get the CA125 and had gotten one every month for the last three months. I had to stop getting scans for about two years because insurance companies felt that it wasn't medically "necessary", if you can believe that. However, since the beginning of the year, I have gotten two CT Scans and a PET Scan. I had to get another CT Scan prior to my PET scan because of insurance wouldn't allow a PET without a current CT scan. YIKES! Also, I usually get a PAP smear every six months. One test you may want to ask for is a Vitamin D test. It seems that a lot of patients are low in vitamin D. I was a 14 - normal is 38 and above. Since I have been on Vitamin D, my pain level has greatly decreased.

For your information, if you ever need a PET scan, now ask for a PET/MRI. It is supposed to be better and has less radiation than a CT. I had just missed the study when I had my recent PET scan.

Hope you are having a great day!

Kathy

ConnieSW · May 2014

Abbycat2 said:
Thank you, Pinky!
It seems that many of the ladies on this board get the CA125 done every three months or so. Do you have CAT Scans done and if so, how often? Congratulations on doing so well now for 4 years! I hope that I am as fortunate.

Best Wishes,

Cathy

Ct scan

I will be 2 years out from the end of treatment in August and that was my last ct scan.. I get a ca125 and exam every three months.

Abbycat2 · May 2014

Kaleena said:
Tests and scans
Cathy

For awhile, I was getting a CT scan every year with a PET scan thrown in here and there. I quit getting CA125 tests because it was never an indicator for me. However recently, I started to get the CA125 and had gotten one every month for the last three months. I had to stop getting scans for about two years because insurance companies felt that it wasn't medically "necessary", if you can believe that. However, since the beginning of the year, I have gotten two CT Scans and a PET Scan. I had to get another CT Scan prior to my PET scan because of insurance wouldn't allow a PET without a current CT scan. YIKES! Also, I usually get a PAP smear every six months. One test you may want to ask for is a Vitamin D test. It seems that a lot of patients are low in vitamin D. I was a 14 - normal is 38 and above. Since I have been on Vitamin D, my pain level has greatly decreased.

For your information, if you ever need a PET scan, now ask for a PET/MRI. It is supposed to be better and has less radiation than a CT. I had just missed the study when I had my recent PET scan.

Hope you are having a great day!

Kathy

Vitamin D and the PET/MRI

Hi, Kathy,

I've read on the board before about vitamin D being an issue and so I will ask to be assessed. I had such a battle with my insurance company with regard to paying for a PET Scan- after 6 months and my continual effort to resolve the issue- BCBS has agreed to pay it. Hurray!

Blessings to you,

Cathy

Abbycat2 · May 2014

ConnieSW said:
Ct scan
I will be 2 years out from the end of treatment in August and that was my last ct scan.. I get a ca125 and exam every three months.

Congratulations, Connie

Congratulations, Connie, on approaching your two year anniversary. I wish for you and all the wonderful, strong and caring women on this board that the time will come when you will forget about this particular anniversary as the reason for it will no longer be an issue. Everyday brings us that much closer to better treatment and a cure.... I for one would love to see this Uterine Board fall to the wayside due to lack of use (although I would miss you all.)!

CA 125 test

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