What are the best scans?

My mother, Joy, has stage IIIC PPC/Ovarian Cancer.

Surgery - 9/25/08 

Prior to surgery she had CT Scan that underestimated the disease.  Gyn/Onc says it didn't show the cancer in and around intestines and another post surgery/pre chemo won't show it either most likely.  I thought she should have had a baseline Ct Scan prior to chemo after surgery because she had unresectable disease.  The Onc said not necessary only important post chemo and will do CA 125 before every chemo cycle.

Pre surgery CA 125= 290.  4 weeks post surgery CA 125 =400...the day before she started 1st round chemo.

It is so frustrating knowing which scan to push for.  Ct Scan, Pet Scan, Ct/Pet Scan (Onc said false positives and that cost in not a factor for him).

 Suggestions?  Input?

 Thank you,

Chopps

On 11/1/2008 Caren wrote:

My mother, Joy, has stage IIIC PPC/Ovarian Cancer.

Surgery - 9/25/08 

Prior to surgery she had CT Scan that underestimated the disease.  Gyn/Onc says it didn't show the cancer in and around intestines and another post surgery/pre chemo won't show it either most likely.  I thought she should have had a baseline Ct Scan prior to chemo after surgery because she had unresectable disease.  The Onc said not necessary only important post chemo and will do CA 125 before every chemo cycle.

Pre surgery CA 125= 290.  4 weeks post surgery CA 125 =400...the day before she started 1st round chemo.

It is so frustrating knowing which scan to push for.  Ct Scan, Pet Scan, Ct/Pet Scan (Onc said false positives and that cost in not a factor for him).

 Suggestions?  Input?

 Thank you,

Chopps

2 years ago I was diagnosed with Peritoneal cancer with a CA125 of 1800 by the time surgery was done.  The only scan that proved what I had was the PET scan.  I'm in my second series of chemo since the surgery and the PET scan is telling us how much cancer is still there.  I receive a combination of Carboplatin and Gemzar which appears to be working.   My oncologist gives me a PET scan as often as insurance/Medicare will allow.  She checks that against my CA 125 which is now at 9, but we know there is still cancer.   

 I have a problem keeping my WBC up and have tried both Neupogen and Neulasta.  Now my Dr. is trying Leukine which I don't like due to the constant fevers I have afterwards.  What is Joy taking for chemo and how is she keeping up her WBC?

D. Gayle 

On 11/1/2008 Donna Gayle wrote:

 

On 11/1/2008 Caren wrote:

My mother, Joy, has stage IIIC PPC/Ovarian Cancer.

Surgery - 9/25/08 

Prior to surgery she had CT Scan that underestimated the disease.  Gyn/Onc says it didn't show the cancer in and around intestines and another post surgery/pre chemo won't show it either most likely.  I thought she should have had a baseline Ct Scan prior to chemo after surgery because she had unresectable disease.  The Onc said not necessary only important post chemo and will do CA 125 before every chemo cycle.

Pre surgery CA 125= 290.  4 weeks post surgery CA 125 =400...the day before she started 1st round chemo.

It is so frustrating knowing which scan to push for.  Ct Scan, Pet Scan, Ct/Pet Scan (Onc said false positives and that cost in not a factor for him).

 Suggestions?  Input?

 Thank you,

Chopps

2 years ago I was diagnosed with Peritoneal cancer with a CA125 of 1800 by the time surgery was done.  The only scan that proved what I had was the PET scan.  I'm in my second series of chemo since the surgery and the PET scan is telling us how much cancer is still there.  I receive a combination of Carboplatin and Gemzar which appears to be working.   My oncologist gives me a PET scan as often as insurance/Medicare will allow.  She checks that against my CA 125 which is now at 9, but we know there is still cancer.   

 I have a problem keeping my WBC up and have tried both Neupogen and Neulasta.  Now my Dr. is trying Leukine which I don't like due to the constant fevers I have afterwards.  What is Joy taking for chemo and how is she keeping up her WBC?

D. Gayle 

Hi D. Gayle,

Joy just had her first chemo last Thursday of Carbo/Taxol.  She has Kaiser so not sure if will give PET or PET/CT Scan.  She is taking Neupogen for WBC.  Thank you for letting me know what you are doing.

Did the PET Scan for you show all your cancer and where it is/was?

I have also heard during chemo a PET might not be accurate.

 How long were you in remission after your first chemo and what were you on?  What stage PPC when diagnosed and how did you realize initally you had cancer?

It is so frustrating knowing how much to push the doctors and when.

Caren

Hi Caren,

My cancer was stage III (can't remember if it was A,B,C, probably C)  I began chemo 3 weeks after the surgery and it was really tough.  I had a serious of treatments which your mother probably has - day 1, day 8, day, etc. for a total of 12 treatments.  They knew the cancer was still there and that I would NEVER be cured, but they would be able to treat it for years. 

The cancer was in remission from Nov. 06 to May 08.  We tried several things to lower the CA125 & CA 26.29 - Tamoxifen and Arimidex.  I forgot to mention that I  also had breast cancer 11 years ago and  a spot under my breast bone  showed up on the PET scan.  They assume it is breast cancer come back and it is inoperable.  Both CA126 and CA 26.29 began going up so in June I had a PET which showed cancer hot spots to the left of my breast bone and in my abdomin. I immediately began the new chemo series of Gemzar and Carboplatin.  After 4 treatments (day1, day 8 X2) I had a second PET the end of Sept. which showed no cancer in my breast area and the peritoneal cancer had been reduced dramatically with a smaller area and not as much activity (called hot spots.) 

I have two oncologists -  a breast C specialist and Peritoneal C specialist.  They both look to the PET scan for best results.  I have never heard that the PET might not be accurate during chemo - I will ask my Dr. that question.

Currently I'm doing the 6th cycle of chemo (just had my 11th treatment) and I will continue the chemo until there are no spots left on a PET scan.

Something I have learned to do:  Ask questions, keep records of every scan, blood draw, every medication received.  I have begun to know what shots and meds are best for me in order to get through this, but every chemo seems to be a new experience in pain and discomfort.

 I hope this is helpful...how is Joy?  Give my best to her.

Gayle

On 11/2/2008 Donna Gayle wrote:

Hi Caren,

My cancer was stage III (can't remember if it was A,B,C, probably C)  I began chemo 3 weeks after the surgery and it was really tough.  I had a serious of treatments which your mother probably has - day 1, day 8, day, etc. for a total of 12 treatments.  They knew the cancer was still there and that I would NEVER be cured, but they would be able to treat it for years. 

The cancer was in remission from Nov. 06 to May 08.  We tried several things to lower the CA125 & CA 26.29 - Tamoxifen and Arimidex.  I forgot to mention that I  also had breast cancer 11 years ago and  a spot under my breast bone  showed up on the PET scan.  They assume it is breast cancer come back and it is inoperable.  Both CA126 and CA 26.29 began going up so in June I had a PET which showed cancer hot spots to the left of my breast bone and in my abdomin. I immediately began the new chemo series of Gemzar and Carboplatin.  After 4 treatments (day1, day 8 X2) I had a second PET the end of Sept. which showed no cancer in my breast area and the peritoneal cancer had been reduced dramatically with a smaller area and not as much activity (called hot spots.) 

I have two oncologists -  a breast C specialist and Peritoneal C specialist.  They both look to the PET scan for best results.  I have never heard that the PET might not be accurate during chemo - I will ask my Dr. that question.

Currently I'm doing the 6th cycle of chemo (just had my 11th treatment) and I will continue the chemo until there are no spots left on a PET scan.

Something I have learned to do:  Ask questions, keep records of every scan, blood draw, every medication received.  I have begun to know what shots and meds are best for me in order to get through this, but every chemo seems to be a new experience in pain and discomfort.

 I hope this is helpful...how is Joy?  Give my best to her.

Gayle

Hi Gayle,

Here is my direct email.  I would love to stay in touch more directly 

Joy is doing great.  A little up and down which is to be expected.  She is 9 days into her 1st cycle of chemo.  She likes to get out and do things and gets frustrated with fatigue.  She also has heaviness in her belly and she hates that.  She is 5 weeks post op.  She is walking 3 miles, 3 times a week and gets out watching bowling and golf.  The Dr. said she could start bowling and playing golf which is great.

Gayle sometimes I think she is ready to really fight this and sometimes I am not sure.  In general she is a fighter.  She is old fashioned about Dr.'s and what they say is the word.  You sound like your doctors are amazing, I'm not sure her oncologist is.  We all like him, however, it sounds like your doctors are doing everything they can to help you live as long as you can.  The communication is difficult because I can ask a lot of pointed questions, I'm just not sure it's the best thing for my mother or that she will want to hear the response.  She has really not educated herself about this disease and leaves it to what the Dr. tells her.  My sister and I are at every appointment, meeting etc. and have a list of questions to ask the doctor.  No Dr. has said you can fight this and get it into remission.  Here is what you need to do!  I'm careful about what I ask in front of Joy too, however, we then don't get the whole story.

If we request a PET scan they will say that it is not needed, the course of chemo is the same.  We'll see where her CA125 is on the next cycle of chemo.  Also,  I didn't really understand what you did on different days of chemo.  It's pretty standard for my mother.  She goes in for chemo, then does some shots for 6 days and that's about it.  I wonder if they give you a PET scan because you had breast cancer earlier?

Gayle, you are an inspiration and I really feel you've helped to give us some direction.  Please continue to share and update us on how you are doing.

If I can help in anyway please let me know.  Where are you located?

We are in Marin County, in the San Francisco Bay Area.

Caren