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Jazzy Jan

hopeful girl 1
Posts: 454
Joined: May 2010

Jan,

Hi there my friend.

Question for you.....you mentioned in our other posting thread about the frustrations of follow up once chemos are complete. What were you referring to? Do you mean the apprehension of each appointment etc hoping that everything is ok and still NED?

Or do you mean the tests? I believe you mentioned your doc does a ct every 6 months or once a year?

I am not sure when they are planning to do a scan on me. My oncologist mentioned he is not big on scans, more on symptoms. He also feels the CA125 is a good marker for me since post surgery it was 300 and is now 5. But it is my understanding everyone or most here on the boards had a ct done following treatment.

When was your first ct following treatment?

Thanks!

Hugs!

Cindy

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jazzy1
Posts: 1385
Joined: Mar 2010

I was referring to the stress of having the scans and blood work pulled. You know every little pain or creek in our bodies, we jump on the band wagon telling ourselves it's cancer a gain.

I had my first CT 30 days after finished treatments. It showed some small growth on my liver so off we went for MRI. It showed a normal growth that never shows up until having the higher level scans. Three months later I had another CT (part of my checkup at that time) and before seeing doc to get CT results I was a mess. I couldn't know the crazy worry thoughts out of my head. After I asked my therapy group this idea, and how do they get the worries of the pre-scan? TOld me they all have same issues, just try and keep busy and not worry as much.

My doc at beginning of year told me we'd do CT every 6 months and blood work every 4 months. Since I just had my blood work completed a few weeks ago, I'm still NED. Doc suggested to not do scans unless I feel more comfortable. He'll just follow my CA 125 as it's a good marker for me....not everyone!! You sound similar to me as my CA125 was 400 before treatments and after treatments 4. Today still 3 or 4...yeah!

One thing he did ask me, to continue my yearly mammograms, every 2 yrs DEXA (bone density test) and colonoscopy. Did the latter last December and found nothing, so I'm clear for 5 years...yippee!!! Got rid of one doc and test.

I've found on these boards everyone is different on tests, scans and blood work. Might be due to type and stage of cancer. Think?

You sound ready to get on with the follow-ups and your life. Do you have some good support for after treatments? FOr instance, I go to a non-for-profit here called THE WELLNESS CENTER. Everything is free and this place has saved my life! They have wonderful support -- classes, doc seminars, cooking classes, yoga, nutritionist one-on-one appts, etc, etc. See if you have one in your area.... I found I needed so much support after treatments as we're thrown to the wolves thinking now that treatments are gone, we must just go back to our normal lives..... Doesn't happen that easy.

Good luck to you and keep me posted on your progress....feel free to send me a personal message if easier.
Jan

hopeful girl 1
Posts: 454
Joined: May 2010

Thank you for sharing your experience following the end of treatments. We do sound very similiar in our cases and our outlooks.

I am starting to feel nervous now that I am at the final stretch and soon to enter the follow up stage, and getting back to the new normal. I too, feel that I will be quite the worrier about results of follow up tests etc., and it reminds me of all of the tests I had when first diagnosed and how scarey it was. CT's, pet scans etc.

I do have a Wellness Center in my area, and they do have a support group for gyne cancers. I only went to one meeting after my first chemo or so, and found it to be a bit of a downer rather than uplifting. But they do also offer yoga classes, nutrition and all of the things you mentioned as well, so when my counts are stronger I do plan to back and participate in some of these wonderful opportunities and classes.

If I understand you correctly, originally your doc was going to do scans every 6 months, but now has decided they are not needed, unless you are more comfortable having the scans. Do you think the docs want to avoid the excess radiation of tests as much as possible for us, for those of us that the CA125 is a good marker test? That is my guess.

I will find out more in three weeks what follow up will be done for me. Nothing has been mentioned so far about scans, except for my oncologist to mention that he is not big on scans. I would imagine that they would at least have to do one following the completion of treatment to check everything out. Do you still have follow ups with your radiation oncologist as well? I am told I will see him periodically for two years.

Did your first scan include just the pelvic area, or was it a larger scan?

Hugs,

Cindy

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jazzy1
Posts: 1385
Joined: Mar 2010

I find with most therapy groups, just depends on the people in the group. Just as with any of these on-line message boards...depends on situation with the people and whether you're in same area of health care as they are. Mine was started before treatments, therefore, I've acquired a good bond with these women and look forward to helping them and listening to their advice for myself. Worth it to at least try yoga or any presentations by the various docs.

I remember reading and hearing on news, losts about all the radiation from CT scans. I went right into my next appt with my oncol and mentioned my concern. Asked him if I need one every 3 months? His response, well not really as we'll skip the next one and then as time goes and I'm fine with bloodwork, etc, he pushes back the scans. So no my doc doesn't push them, but one must be persistent and stand up for ourselves if we feel we don't want as many scans. I did!!!

My first one didn't cover the whole body, but when I had an MRI due to liver spot, then I had full body. Doc in fact asked me when had one and he looked at notes...Told me don't need one now.

Radiation doc -- yes I was seeing him every 6 months and since I last saw him June, he told me no reason to see me earlier than one year. My oncol chemo doc is doing all the testing and scans so not much for the radiation doc to do...why waste his time and mine.

Good luck to you,
Jan

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