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What are your thoughts?

thank you
Posts: 77
Joined: Jun 2009

Hello everybody. My mom had her 2 year post surgery follow up. Her Ca125 is 23.5, remains between 20-24 for the whole last year, I think this is the new baseline. The truth is that it was never so high, pre surgery was 54.
Her gyn onc found everything normal when examined her. We are waiting on the PAP results.
She is doing well, no pains, no troubles at all. Working on a healthy diet and lifestyle. Started psychologically feeling better, and hoping that this all will be a remote nightmare after a while.
There is a controversy between the oncologist and GYN ONC. Oncologist says NO NO MRI or CT or any imaging unless she has symtpoms. The GYN ONC would like to have an MRI.

My mom wants to forget all about cancer and enjoy a wonderful summer in Greece. The last 2 summers she suffered a lot, first with the surgery and chemo, and last summer with repeat surgery and the fear of recurrence. I want her to relax. I know some of you have CT every 3 or 6 months and some don't. I would just like to hear your thougths...

Thank you,
Chrysoula

cathyK's picture
cathyK
Posts: 88
Joined: Jul 2009

I asked my gyn/onc if i should have a CT and she said, yes it has been 6 months, and due to the stage 4b diagnosis. but future ct scans will be sparring due to the risk of radiation from the ct/pet scans so that is all I can help with , hope it helps

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

My gyn onc did scans 3 months after I finished treatment. He told me that he would not do any more scans after than unless there were symptoms or concerns identified on exam as the risks of radiation is significant. He does order an annual chest x-ray.

That's my story...

Am so glad that your Mom is doing so well and I am sure she will thoroughly enjoy her trip back to Greece. She deserves to relax and enjoy life again!!

Karen

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I completed chemo July '09 and told me he'd be doing a CT scan, blood work and physical exam every 3 mos for first 2 years. Last round March '10 we spoke prior about the excessive radiation from the CTs and agreed we could do CTs every 6 months and then rely on blood work (CA 125 to be exact) for other times. Told me if my CA 125 was off, we'd at that point do a CAT scan....it was fine so no scan. In June I'll have my CT and blood work.

My CA 125 is a very predictable rule to follow as when was first diagnosed with cancer it was well over 400. AFter each chemo session it went down each time which was great. Last chemo it was 3 and has been that after each and every follow-up appt. Oncol told me he can rely on this for me as sees a good pattern, but doesn't work for everyone.

Karen, your doc sees it differently which is good too. Each doc has their own procedures and we just must follow along within reason. How long ago did you complete your treatments? I just love your picture by the way!!!

Best to everyone and hang in there!!
Jan

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

I finished chemo December, 2008....was Grade ii/iii, Stage 111C, endometrial. So far, NED!
I see my gyn onc on May 12th and after that exam, will move to every 6 months I believe.
Am enjoying each and every day!!

Karen

Kaleena's picture
Kaleena
Posts: 1020
Joined: Nov 2009

Chrysoula, First of all, I am glad to hear your mom is doing well and going to Greece! All we ever want to do is forget about cancer and go on.

My surgery was in Sept and Oct of 2005, (everything was negative) (however had chemo and 3 brachy rads) had my first CT scan in Nov 2005 and have had a CT Scan every year since. This past July (my new doctor ASSUMED I had a recurrence after my yearly CT Scan) ordered PET Scan (it was negative). In October I got another PET Scan and an MRI. I am going for another PET Scan at the end of the month. (By the way, I had surgery and nothing was found except for a small microscopic cell in lymph - the reason for the recent PET/Scan).

My CA125 never came into play. In fact, I recently said why do I even have to pay to have the test done every three months or more so I haven't had it taken for awhile.

I still have a port in as no one seems to want to remove it so I go monthly to get it flushed out. It bothered me because like your mom I didn't want to think about cancer. I think after awhile it just goes to the back of the line in your head.

Tell your mom enjoy the summer and go to Greece. I am going to Italy with my family in July. It will be my first international trip. Also, I am going to be 50 in June.

Live, Love and Laugh!

Kathy

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

hi chyrsoula,

i'm having my first ct/pet scan 6 months after last chemo. my doctor has been relying on my ca 125, but thought i should have a scan at this point. otherwise, no scan unless compelling symptoms/and or spiked ca 125. i'm wondering why one of the doctors wants an mri, if there is apparently no reason for it. i'd want to know that, as well as what he sees as the advantages/disadvantages of getting an mri at this point. if his reasons aren't compelling, i'm all the way with your mother. in the final analysis, she is the one whose decisions trumps everyone elses.

hope her trip is wonderful, no matter what her decision; she deserves it.

warmly.
maggie

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

If your mother can truly NOT think about cancer, not wonder what's going on inside her,...if she's the 'out of sight / out of mind' kind of person who can honestly live in the moment, then maybe she SHOULD take a complete break from close monitoring. But if she needs that reasurrance, proven by a test, that she is still in remission, she may be happier to get routine testing.

I don't even know that answer about myself. Having a recent clear CT/PET is a fabulous feeling. But the lead-up to it, the knowing that one day you are feeling reasonably secure in your (near) future, and the next day the results of some test can pull the rug out from under you and leave you unsure and afraid.....all on the HOPES that the results will buy you 3 months of normal stress-free life.

I will tell you that when I was told 3 months ago that I could safely take a break from chemo, I jumped at having SPRING, such an unexpected GIFT I'd almosr given up hope of ever having again,...a spring of being able to dig in the dirt and plant a garden and breathe deep the smell of lilacs without being nauseated, simple unexpected blessings like having eyelashes again and being able to go away with my husband for a vacation. I NEEDED this break, safe to take it or not. If you think your mother needs a REST from it all, maybe you shouldn't fight her on it.

There's a study that I posted here long ago and I probably can't find it now for you, that showed that starting chemo BEFORE cancer was detectable on a CT-scan (like when detected via a CA125 or Pet-scan) didn't really increase overall survival time. It pretty much said that chemo knocks back a 1 cm tumor almost as fast as a tiny tiny one, and in the big picture the chance for bone marrow to recover from treatment during a prolonged chemo-break balances the advantage of super-early recurrence detection. So a couple extra months of treatment-free living isn't that risky, in the long haul. I'd take my lead from your mother and not fight her too much on her decision. (((hugs)))

thank you
Posts: 77
Joined: Jun 2009

It is very important for me to know your thoughts, since I am the caregiver, and the one who knows all the truth and makes the decisions for her care. My mom does not speak English, and hasn't read much about her disease. And she does not even ask questions to the doctors. She is the kind of person " I don't want to know"..... because she doesn't know how to deal with bad news... But now, she really believes that her adventure has finished. She is very happy to go back to Greece, looking younger and healthier (she had physical therapy and yoga here, and exercised a lot).
I am the one who would like to have a CT every day if possible to make sure she is OK. Especially now that she will stay in Greece and I will not see her for a year - they are not allowed to enter the US for a year with their tourist visa.
After reading your thoughts, I think it is better for her not to see any doctors for a while, unless she asks me. The truth is that I also need to take a break.
It is so strange, I visit this site very frequently,hoping that if I read your feelings I can predict my mom's feelings. We never had a deep frank discussion with my mom, about our fears or our hopes. I was always telling her: this is NOTHING to worry about. I know that this is what she wanted to hear. And she believes me since I am a doctor. I hope I helped her. For the last year she was here, I was telling her about the appointment with her doctor 2 hours before the appointment. At the end of the appointment (she couldn't understand what I was discussing with the doctor) she was asking me: when is the next appointment? And I was telling her: the doctor said it depends on you, only if you have any problems. I was loosing my sleep 2-3 weeks before the follow up, why should she be stressed at the same time?

Wonderful ladies of this site, please know that your family LOVES YOU and NEEDS YOU even if they don't say it very frequently.
I wish to all of you the best,
Chrysoula

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Chrysoula, What a wonderful daughter you are! Your Mother is so fortunate to have you watching out for her and helping her on this journey. I know she will be so happy to be back in Greece and I agree, you probably need a little break too!

I hope that some day you will be able to share your hopes and fears with her! She can probably sense a lot of that! One thing she definitely knows is your love and deep commitment to her!

Enjoy the moment!!

Karen

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

You are a great daughter!

I agree with the ladies...now let's raise our glasses and say "Opa"!

Laurie

thank you
Posts: 77
Joined: Jun 2009

OPA!!!!!!!!!
Take care,
Chrysoula

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