CAT Scans and CA125 testing for follow-ups for advanced cancer

Kaleena said:

Bravo Moli!   My kind of gal!

Bravo Moli!   My kind of gal!  My husband and I learned early in this that you must continue to laugh at stuff.  If not it could drive you crazy.

Get this mental image (i am at an appointment to see about a recurrence and this occurs).  My radiologist oncologist does an internal to "feel" the mass, then the gyne/onc does the same thing.  Then a group of medical students come in to my room and they let one of them do an internal.  So here I am laying on the table with my legs apart, my husband beside me in a room with my radiologist oncologist, my gyne/oncologist and a group of medical students.   I looked at my husband and said - Really?   And we have to pay them to do this?   I don't even think anyone will ever believe this - lol   And to boot, the gyne onc said he couldn't operate because it would be too long a surgery and he wouldn't do it and he just got up and left without even discuss chemo or anything, the radiation oncologist said if he radiates I couldn't have any more radiation and eventually it could be fatal.

Believe it or not, my husband and I left and looked at each other and said this is so messed up.  But by this time, we had our plan in place that if it doesn't seem right, feel right, then get up and leave.   I went to another provider in a totally different state with great success.  That was over fives years ago.

Thanks Moli, for all the encouragement you give me and to the ladies (and gentlemen) on this board!

Kathy

Kathy, I can't imagine what you went through! Incredible! 

Tikvah, it seems that we uterine cancer patients have similar treatment, but not always. I did not have a Ca-125 prior to my hysterectomy, as my uterine biopsy did not indicate that I had UPSC, a grade 3 cancer ( i.e., aggressive).  it is not uncommon for UPSC not to show up on a biopsy, but after surgery and after analysis of the tissue does it raise it's ugly head.  I have 2 oncologists- my gynecologic oncologist in Melbourne, FL, who is located 30 miles from my home.  He does my internal exams and has been the "leader" in my treatment which also included 6 rounds of Taxol and Carboplatin. I also have a local oncologist who provided the chemo. He never does internal exams and like my other oncologist, orders the CA-125 test. Since my stage 3a diagnosis 1 year and 9 months ago, I have had 1 Pet scan and 2 Cat scans- all clear. My gyn onc told me that Cat Scans do not provide a survival benefit as symptoms occur about 3 to 4 weeks after a Cat scan reveals a recurrence. Cat scans produce a lot of radiation exposure, but I can tell you that I am more likely to die from UPSC than cancer caused by too many Cat Scans. 

Cindi, you mentioned that you go to Moffitt. What town do you live in if you don't mind me asking? I live in FL as well and have been to Moffitt, too ( for a 3rd opinion).

Wishing you all peace in your lives,

Cathy

Abbycat2 said:

Kathy, that's incredible!

Kathy, I can't imagine what you went through! Incredible! 

Tikvah, it seems that we uterine cancer patients have similar treatment, but not always. I did not have a Ca-125 prior to my hysterectomy, as my uterine biopsy did not indicate that I had UPSC, a grade 3 cancer ( i.e., aggressive).  it is not uncommon for UPSC not to show up on a biopsy, but after surgery and after analysis of the tissue does it raise it's ugly head.  I have 2 oncologists- my gynecologic oncologist in Melbourne, FL, who is located 30 miles from my home.  He does my internal exams and has been the "leader" in my treatment which also included 6 rounds of Taxol and Carboplatin. I also have a local oncologist who provided the chemo. He never does internal exams and like my other oncologist, orders the CA-125 test. Since my stage 3a diagnosis 1 year and 9 months ago, I have had 1 Pet scan and 2 Cat scans- all clear. My gyn onc told me that Cat Scans do not provide a survival benefit as symptoms occur about 3 to 4 weeks after a Cat scan reveals a recurrence. Cat scans produce a lot of radiation exposure, but I can tell you that I am more likely to die from UPSC than cancer caused by too many Cat Scans. 

Cindi, you mentioned that you go to Moffitt. What town do you live in if you don't mind me asking? I live in FL as well and have been to Moffitt, too ( for a 3rd opinion).

Wishing you all peace in your lives,

Cathy

Cathy,

I guess it comes with the territory.  We should all right a book (comedy trama - lol)     They found my cancer too after my hysterectomy so I didn't have a CA-125 either.  After my staging surgery which was a month later, it was a 21.

You are right about the CAT scans.   They do have more radiation exposure but insurance companies don't allow PET scans as frequently.   Even if your oncologist orders it they can deny it as it not being "medicallly necessary" - which is the pits.

Hoping you are having a fantastic day!

Kathy

Abbycat2 said:

Kathy, that's incredible!

Kathy, I can't imagine what you went through! Incredible! 

Tikvah, it seems that we uterine cancer patients have similar treatment, but not always. I did not have a Ca-125 prior to my hysterectomy, as my uterine biopsy did not indicate that I had UPSC, a grade 3 cancer ( i.e., aggressive).  it is not uncommon for UPSC not to show up on a biopsy, but after surgery and after analysis of the tissue does it raise it's ugly head.  I have 2 oncologists- my gynecologic oncologist in Melbourne, FL, who is located 30 miles from my home.  He does my internal exams and has been the "leader" in my treatment which also included 6 rounds of Taxol and Carboplatin. I also have a local oncologist who provided the chemo. He never does internal exams and like my other oncologist, orders the CA-125 test. Since my stage 3a diagnosis 1 year and 9 months ago, I have had 1 Pet scan and 2 Cat scans- all clear. My gyn onc told me that Cat Scans do not provide a survival benefit as symptoms occur about 3 to 4 weeks after a Cat scan reveals a recurrence. Cat scans produce a lot of radiation exposure, but I can tell you that I am more likely to die from UPSC than cancer caused by too many Cat Scans. 

Cindi, you mentioned that you go to Moffitt. What town do you live in if you don't mind me asking? I live in FL as well and have been to Moffitt, too ( for a 3rd opinion).

Wishing you all peace in your lives,

Cathy

Hey Cathy, I live in Inverness.  About 75 or so miles North of Tampa.

I have to say, I highly recommend Moffitt to anyone looking for cancer care. 

My doctor is the best. He is funny, humble and down to earth. I have never been so comfortable with a doctor in my life. And he knows his stuff.

I'll be posting a new thread in a few minutes on my experience.

Take care,

Cindi

molimoli said:

I understand Kathy my

I understand Kathy my sister,but hope and pray that your up days will out-weigh your down ones ,you have been through a lot and still manage to encourage, share  and educate,daunting task to pull off but you do it well, Thank you.

Each and everyone of you lift my spirits with your wisdom, strength, advice, stories and sense of humor. I have often wondered how I would've put one foot in front of the other without the support of CSN and this group. 

Warm Wishes,

Cathy

molimoli said:

No Choice, laughter is our anchor

The laughter balances the tears so we don't tip over ,every minute ,every hour,every day.

We love you Cathy thanks for the warm wishes.

Moli

I wish they would put a like button on this site.   Sometimes I don't have the words but like what people are saying.

Love you girls!   May you all smile and laugh today.

Kathy