Monitoring UPSC

Abbycat2

Good Morning, Ladies,

I saw my gynecologic oncologist yesterday for a three month checkup and so far so good- I am 5 months out from my last treatment and am presently showing NED.  My doctor said that there are three things he monitors regularly: 1). How I am feeling physically; 2) my CA-125 (11 now) and 3). my internal/external exam.    I am comfortable with this to a point.  I am reminded that Ro10 never once had a symptom and so her gyn oncologist uses CAT Scans.  I had a CAT Scan in April and may ask for another one six months from the last one.  I was diagnosed with UPSC, Stage 3A.  Is there anyone among you who gets CAT scans regularly and if so, how often and why does your doctor recommend it?

 

Thanks and wishing you all a wonderful and blessed day!

Cathy   

It happened to Me

I'm in same boat.

Cathy,

My last check-up was the 11th.  I am 7 months out and my doctor says the same thing.  My CA125 is currently 5 and was only 9 when diagnosed.  The only symptom I had was bleeding and spotting for several months.  They told me that they will do an X-ray once a year.  Unless I have symptoms, they are not planning on doing any more CT's.    Will be anxious to hear other responses.

Jeanette

Kaleena

Scans

Hi Cathy

Although I have endometrial cancer I was having CT scans at least once a year for five years.   Then because of different insurance company they would not allow any scans.  I went without scans for about two and a half years. Recently I have had CT scans within six months of each other because the insurance company wouldn't allow me to have a PET scan unless I had another CT scan.   so I had that and a PET scan and will now have a PER/MRI in September.

I don't think there is any right or wrong way but what makes you feel comfortable.  

Kathy

 

 

 

joannewtta

Kaleena said:

Scans

Hi Cathy

Although I have endometrial cancer I was having CT scans at least once a year for five years.   Then because of different insurance company they would not allow any scans.  I went without scans for about two and a half years. Recently I have had CT scans within six months of each other because the insurance company wouldn't allow me to have a PET scan unless I had another CT scan.   so I had that and a PET scan and will now have a PER/MRI in September.

I don't think there is any right or wrong way but what makes you feel comfortable.  

Kathy

 

 

 

Boatload of UPSC

I'm six months out of treatment for UPSC. Stage 3, Grade 3c. CA 125 is now 11. I posted as 7 the other day and was mistaken. My 3 month CT scan was clear and have had two 3month exams with an all clear. My understanding is the blood work and pelvic plus any symtoms are pretty much what my doctor will follow. I wanted my port out at the 1st 3 month check up but he wants to wait a year. I feel good but I know each one of us wants some sort of magic mirror in our body to keep an eye on what is going on. I agree with all those posting what a great support his board can be. There does seem to be a fair number of us with a rare cancer. I'm heading out for a port flush this afternoon and it is always great to see my chemo nurses and say thanks again.They are my unsung heros. Each and every one of them were caring and compassionate. I have done special things for them and I will always have a special place in my heart for them.

By the way my name is Joanne and I live in Vacouver, Washington. Right accross the Columbia River from Portland.

nempark

Hi Guys!!!

November 2014 will be 5 years since dx endo MMMT stage1a grade 3.  Doc does not like scans neither ca125.  Just internal exams.  Constant abdominal pains when I wake up and before I go to bed.  Pains equal to period pains goes away when I move around but it is there. one year ago did cat nothing showed.  So I guess I have to Live with this discomfort.    Love and good health to all of you.

Ro10

Cathy

The reason I have CAT scans is because my CA 125 is always on the rise.  If your CA 125 is normal and you have no symptoms I would not worry.  I have never had the luxury of having normal CA 125's after I am off of chemo.  At first I had the CAT scans more frequently.  They thought the rising CA 125 meant the cancer was growing.  But as we got to know that my CA 125 rises after chemo, my CAT scans were less frequent.  It was a year since I had my last one.  

Try to enjoy each day and live in the present.  Worry does not change what's ahead, but robs you of enjoying the present.  In peace and caring.

It happened to Me

Ro10 said:

Cathy

The reason I have CAT scans is because my CA 125 is always on the rise.  If your CA 125 is normal and you have no symptoms I would not worry.  I have never had the luxury of having normal CA 125's after I am off of chemo.  At first I had the CAT scans more frequently.  They thought the rising CA 125 meant the cancer was growing.  But as we got to know that my CA 125 rises after chemo, my CAT scans were less frequent.  It was a year since I had my last one.  

Try to enjoy each day and live in the present.  Worry does not change what's ahead, but robs you of enjoying the present.  In peace and caring.

Ro10

Your sentence about worry doesn't change what's ahead... really hit me.  That's the best description of worry I've ever heard.  Thanks.

Jeanette

Hybridspirits

scans

I was diagnosed 12/12/12,  started chemo 1/2013 and finished 4/2013, had 3 internal radiaion treatments ending 5/31/2013. I have been getting scans every 6 months with a base line one at end of treatment and one extra when a lymph node was slightly enlarged

i was staged 1A, grade 3,  not USPC

i have switched to having MRI with this laat scan as no radiation. 

I believe i will continue every 6 months for a little but will find out at my next oncologist appt in September

My insurance has supported to date, including the MRI

hope this helps

sunflash

Hybridspirits said:

scans

I was diagnosed 12/12/12,  started chemo 1/2013 and finished 4/2013, had 3 internal radiaion treatments ending 5/31/2013. I have been getting scans every 6 months with a base line one at end of treatment and one extra when a lymph node was slightly enlarged

i was staged 1A, grade 3,  not USPC

i have switched to having MRI with this laat scan as no radiation. 

I believe i will continue every 6 months for a little but will find out at my next oncologist appt in September

My insurance has supported to date, including the MRI

hope this helps

I have had only one scan

I have had only one scan (June 2011).....post surgery and before treatment started. I'm almost 3 years post treatment. 

My doctor monitors the three things you mentioned......physical symptoms, CA125, and pelvic exams.

She told me she'd order a scan for me if I wanted one, but I declined, feeling no need since I've had no symptoms.

I know different doctors have different opinions on this.  

debrajo

scans

I am four years out from chemo with UPSC 1a/b, C/3.  I had one scan before surgery in 09 and one after surgery in 09, and have not had another since.  I have also had the same three things checked...1.Feeling unwell, 2. Ca 125 which was 15.8 in May, and 3. Physical exam.  I have questioned this, but dr. is adament about not getting any more radiation than neccesary.  I had the six Taxol/Carboplatin and five internal radiations.  So far, so good!  Debra

Abbycat2

debrajo said:

scans

I am four years out from chemo with UPSC 1a/b, C/3.  I had one scan before surgery in 09 and one after surgery in 09, and have not had another since.  I have also had the same three things checked...1.Feeling unwell, 2. Ca 125 which was 15.8 in May, and 3. Physical exam.  I have questioned this, but dr. is adament about not getting any more radiation than neccesary.  I had the six Taxol/Carboplatin and five internal radiations.  So far, so good!  Debra

Thank you!

Thank you all for your responses.  I am feeling much better about my situation in terms of how my cancer is being monitored.  Like you, Jeanette, I was moved by what Ro said about worry.  I copied her words, pasted them to a new page and printed it.  I am going to post it here at work right on my computer so that I can read these words often.  I am doing much better when it comes to worrying about my future and the "what ifs", but I still have a ways to go.  Each day is just a bit easier.  I particularly enjoy the ever-increasing minutes when I don't think about cancer at all! 

Thank you for being such an awesome, interested, interesting and compassionate group of women!  Each of you has touched my life for which I am very grateful.

 

Best Wishes,

Cathy

 

trustingHim

Ro10 said:

Cathy

The reason I have CAT scans is because my CA 125 is always on the rise.  If your CA 125 is normal and you have no symptoms I would not worry.  I have never had the luxury of having normal CA 125's after I am off of chemo.  At first I had the CAT scans more frequently.  They thought the rising CA 125 meant the cancer was growing.  But as we got to know that my CA 125 rises after chemo, my CAT scans were less frequent.  It was a year since I had my last one.  

Try to enjoy each day and live in the present.  Worry does not change what's ahead, but robs you of enjoying the present.  In peace and caring.

Worry

Thanks, Cathy.  I copied and pasted this on a sticky note on my computer screen so I can look at it everyday.  My doctor says I worry too much.  He says we are working towards a cure and to stay positive.  I will be embracing your profound statement everyday.

Donna