Those of us with USPC...

Fluff, it's great that you have just one more chemo to go. Neuropathy is such a ****. (That's what I'm doing awake this late.) I completed my chemo for USPC in January, so I cannot offer any information about recurrence. I just wanted to congratulate you on hanging in there for treatment.

Warm best wishes,

Molly

I was gobsmacked when I was diagnosed with UPSC through a routine pap test in Sept. 2012 wih UPSC. My CA125 was 13.3 I had surgery immediately but was relucant to have chemotherapy ( won't go into detail why) so I didn't have it until the spring of 2013. After chemo ( 6 rounds of taxol/carboplatin)  my CA125 was 6.0. I got two years before the cancer came back.

I realized when I was diagnosed that UPSC was a very aggressive, highly recurrent cancer and I tried to learn everything I could about it. There  was a  UPSC 5 year Survival Blog that was helpful. The Cancer Society told me that KNOWLEDGE IS POWER and YOU ARE YOUR OWN BEST ADVOCATE. I knew I needed to be very proactive if I wanted to live. I decided to have a CA125 monthly.  When I was going through chemo in 2013 I realized that my family doctor was giving me more information on the CT scans & PET scans than my gyne oncologist. With all due respect to the the doctor who did my first surgery, I knew that he was not the right fit for me - I am BLACK ans WHITE so I changed gyne oncologists.  This was the best decision  I ever made.

When my CA125 rose to 14.1 in the summer of 2015 my gyne oncologist ordered a CT scan which really didn't show anything. He knew I wanted a PET scan and ordered one and as a result I had my 2nd. surgery in August 2015, followed by 6 rounds of carboplatin . My CA125 was then 7.5.

To this day I have never had a symptom or pain from cancer - for me it could be the silent killer - my gyne oncologist told me that for some people with UPSC by the time that they know the cancer is back it is too late for treatment.  The only way I know that I am no longer in remission is the CA125 or a CT/PET scan. I realize that the CA125 does not work for everyone but it really does for me.

A year and a half after the 2nd. surgery the cancer was back - nothing big enough to remove but I wanted chemotherapy before the nodules grew too large. I had two rounds of Caelyx, unsuccessful and( I got the foot and hand syndrome in the groin area - burned from the inside out) had to wait a few months until I healed and then had 6 Rounds of Cisplatin/Gemcitabine. This chemo shrunk the nodules but I never achieved the goal of remission. I took a break from chemo, went to Iceland on a vacation and 6 months later did 6 Rounds of Carboplatin. Again my CA125 shrunk but I never achieved my goal. I trook a break from chemo for 8 months,

In the fall of 2018 I asked my gyne oncologist if I could take dose dense taxol (one a week for 3 weeks then a week off) My CA125 was 643 when I started - after two rounds my CA125 was 9.5 - I did the 3rd, Round, then had a CT scan. I was in remission. Yes a year later the cancer rears its ugly head once again.

I just  completed 3 Rounds of dose dense taxol in April 2020 again  and although my CA125 is now normal the CT scan shows a soft tissue nodule that grew from 1 cm to 3 cm while I was going through the chemo. I am hoping to meet with a radiation oncologist this week to discuss the possibility of radiation before deciding on a treatment plan - including surgery.

Yes I choose to live but if you never had a symptom or pain from cancer - you would probably choose to go through chemo sooner than later too.

Yes Fluff, this is a very aggressive disease but always be proactive and remember we are all unique - hopefully the last treatment that you had maybe your last and you will be in remission forever. I am wishing you nothing but happiness and I pray for you.

BluebirdOne said:

Tequila

Thanks for your very helpful and detailed information about your recurrences. We all gain knowledge when we tell our treatment stories. I am sorry you had to go through all of this but glad you shared your story. Also, may I ask what stage you were at dx? 

 

Denise

Thank you Denise - I spoke to the pathologist - he said it was 1/11 into the muscle of the uterus but had gone into the right fallopian tube.

tequila said:

FLUFF THINK POSITIVE - BUT ALWAYS BE PROACTIVE

I was gobsmacked when I was diagnosed with UPSC through a routine pap test in Sept. 2012 wih UPSC. My CA125 was 13.3 I had surgery immediately but was relucant to have chemotherapy ( won't go into detail why) so I didn't have it until the spring of 2013. After chemo ( 6 rounds of taxol/carboplatin)  my CA125 was 6.0. I got two years before the cancer came back.

I realized when I was diagnosed that UPSC was a very aggressive, highly recurrent cancer and I tried to learn everything I could about it. There  was a  UPSC 5 year Survival Blog that was helpful. The Cancer Society told me that KNOWLEDGE IS POWER and YOU ARE YOUR OWN BEST ADVOCATE. I knew I needed to be very proactive if I wanted to live. I decided to have a CA125 monthly.  When I was going through chemo in 2013 I realized that my family doctor was giving me more information on the CT scans & PET scans than my gyne oncologist. With all due respect to the the doctor who did my first surgery, I knew that he was not the right fit for me - I am BLACK ans WHITE so I changed gyne oncologists.  This was the best decision  I ever made.

When my CA125 rose to 14.1 in the summer of 2015 my gyne oncologist ordered a CT scan which really didn't show anything. He knew I wanted a PET scan and ordered one and as a result I had my 2nd. surgery in August 2015, followed by 6 rounds of carboplatin . My CA125 was then 7.5.

To this day I have never had a symptom or pain from cancer - for me it could be the silent killer - my gyne oncologist told me that for some people with UPSC by the time that they know the cancer is back it is too late for treatment.  The only way I know that I am no longer in remission is the CA125 or a CT/PET scan. I realize that the CA125 does not work for everyone but it really does for me.

A year and a half after the 2nd. surgery the cancer was back - nothing big enough to remove but I wanted chemotherapy before the nodules grew too large. I had two rounds of Caelyx, unsuccessful and( I got the foot and hand syndrome in the groin area - burned from the inside out) had to wait a few months until I healed and then had 6 Rounds of Cisplatin/Gemcitabine. This chemo shrunk the nodules but I never achieved the goal of remission. I took a break from chemo, went to Iceland on a vacation and 6 months later did 6 Rounds of Carboplatin. Again my CA125 shrunk but I never achieved my goal. I trook a break from chemo for 8 months,

In the fall of 2018 I asked my gyne oncologist if I could take dose dense taxol (one a week for 3 weeks then a week off) My CA125 was 643 when I started - after two rounds my CA125 was 9.5 - I did the 3rd, Round, then had a CT scan. I was in remission. Yes a year later the cancer rears its ugly head once again.

I just  completed 3 Rounds of dose dense taxol in April 2020 again  and although my CA125 is now normal the CT scan shows a soft tissue nodule that grew from 1 cm to 3 cm while I was going through the chemo. I am hoping to meet with a radiation oncologist this week to discuss the possibility of radiation before deciding on a treatment plan - including surgery.

Yes I choose to live but if you never had a symptom or pain from cancer - you would probably choose to go through chemo sooner than later too.

Yes Fluff, this is a very aggressive disease but always be proactive and remember we are all unique - hopefully the last treatment that you had maybe your last and you will be in remission forever. I am wishing you nothing but happiness and I pray for you.

 

 

Tequila, that is an amazing and inspiring history.  You're incredible.