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What type of follow-up exams and scans are you receiving after treatments?

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

Diagnosed last year with uterine adenocarcinoma stage 3C. Having completed all my treatments last July my next 2 years doc informed me would be every 3 months, blood work (watching closely the CA 125) and CT-scan. All plans were in place until I read the news about the high-radiation from CT-scans. Convinced my doc to do the scans every 6 months vs. 3 months sticking with the other side of the plan. Now if the CA-125 comes back with issues (time when not schedule for the scan) he'll then proceed with a scan. Thusfar, all scans and numbers are excellent.....crossing fingers & toes!!

Today I just completed my next 6 month scan and have questions as to why I'm having it???? Few others on this site have mentioned to me -- ask for a PET scan or something with less radiation? Or...don't have a CT-scan unless the blood work isn't good. I've heard many times with uterine the first chain of tests which insurance will cover is CT-scan. Then if issues, possibly to MRI or PET. I know I had one issue on my first CT and they had me do an MRI.

Made me stop and think what are others following from their doctors. Any suggestions for me as next Tues I will see my doc for followup on the scan and my blood work? Might be good time to possibly suggest a change. Just eats me up inside knowing I'm getting more radiation, after having been hit with 33 sessions during treatments.

((((( hugs )))))
Jan

shortmarge
Posts: 296
Joined: Nov 2008

I am 1 1/2 years out of treatment. I see my oncologist every three months for pap and CA125. She doesn't recommend a CT scan unless we feel it's necessary. She does not recommend every three months. I was Stage IIA, UPSC and clear cell.

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

Thanks for the response. Is this the standard you had from day one? When would doc suggest a CT-scan...at time when your CA-125 or other numbers from blood work have changed causing concern?

This really makes me feel no scans unless blood work isn't where it should be.

((((( hugs )))))
Jan

Cecile Louise's picture
Cecile Louise
Posts: 135
Joined: Dec 2009

I'm 2 years out from chemo (2-1/2 years from surgery). I was diagnosed stage 1b grade 3. From day one, my CA 125 was low and my onc said that it would not be a good indicator for me, so it is not ever tested. I'm still seeing him every 3 months for a pelvic exam and pap - I have a CT scan every six months, but that will decrease to once a year after my next one in October comes back clear.

Love,
Cecile

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

I was diagnosed 2 years ago with Endometrial Adeno, Grade 2/3, Stage 111C. I had a CT scan after radiation and before chemo and then 3 months after I completed treatment. I had pelvic and Pap Smear every 3 months and have now "graduated" to every 4 months. My gyn-onc says no more CT scans unless I have symptoms or something is picked up on exam due to risk of additional radiation. CA-125 was not a marker for me so that is not done. I do have an annual check x-ray. This seems consistent with After Treatment section I found on this web site.

In addition, CT scans don't always pick up everything either (or not read correctly?) My Cancer had eroded through the entire uterus but was stated to be "consistent with fibroid" when I had a CT scan trying to figure out what my left sided pain was.

Karen

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

Good Morning Ladies,

Great to read what others are doing according to their doc setups for followups. Most of you are 1-1/2 to 2 years out from treatments and still seeing doc almost every 3 months, not many with CT. Cecile I wonder why your doc still does the CT every 6 months? Oh who knows but interesting as opened my eyes to a nice talk with my doc about possibility of not doing CT unless see some symptoms. It does sound scary to NOT have a scan, but then Karen mentioned they don't show everything either. Kinda like a crap shoot!

Some of this could depend on the doctor experience and what he feels will work for each of us, and according to the type of cancer we might have. I've got 2 different types of cancer and the less aggressive one was found in 1 pelvic node -- thankfully no where else. In the uterus the 2 very small tumors had the very aggressive cancer.

Hugs...
Jan

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

This whole journey is definitely a crap shoot! We each do what we think will give us the best odds...and we hope we win! Maybe we should just pack up and head to Vegas with Maggie! :)

Hoping the best for all of us!

Karen

culka's picture
culka
Posts: 161
Joined: Oct 2009

End of August end of radiation, 6 week later 1. follow-up (exam only), 6 months later exam and after CT and later MRI (finally clear), 6 months later (October 2009) exam again and discharge. So I`m done I guess.
Oh and stage IIb, grade 3 clear cell and originally UPSC.

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

Just received a call from my doc office and CT-scan is NED (no evidence of disease)...yeah! Now have to wait for CA-125 and appt with doc next Tues. I've gotten some great information from everyone here and now loaded with details to discuss with my doc.

Karen, I'm ready to pack up for Vegas. We're all in the gamble of life, so why not enjoy it with the flashing lights and dancing girls around us.

We go to Destin FL every year and this year looks like it will be challenging. Not sure to make plans in hopes they stay clear of oil, or look towards the Atlantic side around Mrytle Beach. If the hurricances start that will really throw everything into the whirls of oil. What a disaster!

Jan

Cecile Louise's picture
Cecile Louise
Posts: 135
Joined: Dec 2009

Wonderful news on the CT scan!! That's just the kind of good news I love to hear!

Love,
Cecile

Kaleena's picture
Kaleena
Posts: 2023
Joined: Nov 2009

Hi Jan:

I too, am concerned about the amount of radiation from scans, etc. Having said that, you should be able to see me glow from where you are. IN January of 2009 I had a CT Scan, then a CT in July of 2009, then a CT/PET Scan in July 2009, then another CT/PET Scan in October of 2009, a chest X-ray, then an MRI in Oct of 2009, and just recently a PET Scan in June of 2010.

Reason for so many (very short version), thought there was a reoccurrance (saw in a CT scan but doctor failed to see that the mass was there from 2005), got a positive biopsy, however, all CT Scans/PET Scans/MRI, etc. came back good. I did have surgery in February to remove the tumor which was biopsied (it all came out negative). Yippee! Although I did have one lymph node removed which had a microscopic cell (the reason for the most recent PET Scan and that scan was negative!)

Since 2005 (original surgery date and then finding Grade 2 Stage ii/iiia endo adeno..) I have had a CT Scan every 6 months. Don't forget the yearly mammograms too! Plus dental x-rays. And I still have my port in even though I finished chemo in May of 2006.

For awhile I was concerned about it. Now I just go on working, enjoying my family, and getting tests done (when necessary). I had changed doctors a couple of times when my original doctor retired. The most recent doctor is the one who did my recent surgery and he is about 2 1/2 hours away from my home, but he is worth the trip.

This stuff can drive you nuts! You also have to think about microwave ovens, even granite tops gives off radiation.

Anyway, great news on your CT Scan! We can do the "Happy" dance!

Kathy

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

My oh my, you must light up light a Xmas tree. Sounds like yours couldn't be avoided with the issues of what was going on and needing to find out via tests.

I know MRI and PET don't release any rays....right? Just the standard CAT that is rough on us and we want to avoid....difficult when insurance requires this before ever getting to the other 2. I might have to fight if want the others....we'll see.

You mention microwave ovens, mammograms and dentist xrays, yep those play into the picture too. I learned from my nutritionist to just use less of the microwave and if must, stand 3 ft+ away while in use. I'm watching it more as last nite heated up some leftover food in the oven, normally use the microwave...trying little by little!

All we can do is try and avoid them but like your case tough isn't it. At least you came thru with flying colors...you go girl!

You've had your port in since 2005?

Thanks for your information...
Jan

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

karen, wouldn't that be fun, all of us meeting in vegas, since what we're all dealing with is such a crap shoot, or somewhere else? i know people have talked about meeting up with one another, but we all seem so far flung probably not so feasible. still, we could aim for a date somewhere in, say, 3 years.....

susie, have fun in vegas; just don't stay at the rio unless you're into the world series poker tour. they're really tight there, and the place is getting on the shabby, but not chic, side.

sisterhood,
maggie

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

Maggie....meeting in Vegas would be fun. I haven't been there for years! and generally there are lots of cheap flights from most anywhere! Since you are familiar with that area, you can be our tour guide! Such fun!!

Sorry you didn't win the big jackpot, but you are still a winner. You got away for some some fun and relaxation AND you have returned feeling calm and confident about your approach your next steps in this Journey!

Big hugs!

Karen

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

you're right, i really have returned more relaxed and confident about my approach. meanwhile, nothing medical, hopefully, to do for a couple of months, thank goodness. there's a poker tournament we're going to next weekend in a local casino/resort, cache creek (isn't that a perfect name for a casino?); i feel like we're now on the poker tour ourselves. i can't tell you how much fun it is, and i've become a much more confident player as well. it's strange playing with mostly men; they really don't expect women to play very well, and are always shocked when we do...gives us an advantage. i guess that's making sexism work for you.

a french woman won the big women's event in vegas, and a danish woman came in second, finally an american in third. it was quite a big haul--$200,000 for first place. it was really history or herstory to watch the final table play. it's a little ironic that so much of our own journeys ride on luck, just as does poker. you can't win poker with skill/talent alone, but you can with luck alone. so, we hope for luck, and do all we can to make our own luck. it's so much out of our hands, yet as claudia has said and i believe demonstrates, you can have some effect on how that journey goes.

big hugs back to you, karen.

maggie

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

Wow....I didn't realize how big those poker prizes might be....am thinking we need to brush up on our poker and start winning for research dollars! Or find some REALLY good poker players who would donate their winnings!!

Just a thought!! :-)

Karen

susie1143's picture
susie1143
Posts: 109
Joined: Aug 2009

I haven't been on for a long time due to computer problems. Maggie: I'll be going to Vegas this Sunday, June 20th until Friday, the 25th.

I have some questions regarding follow ups:
1. I have never had a CA-125 and I asked 3 doctors and none of them seem concerned.
2. Last year was last pap which was done at my yearly annual check up. (Pap came back showing the cancer cells) At D&C, Grade 3 cell but after surgery Grade 2 cell. Final staging was Stage 1C, Grade 2.
3. No CAT-SCANS since brachy therapy last November.

I live outside of Tampa, FL and feel like I'm not getting good follow up. Since, I work for the school, I have off for the summer and I'm thinking of going to CT or NJ for another opinion regarding follow ups.

Thanks,
Susie

Kaleena's picture
Kaleena
Posts: 2023
Joined: Nov 2009

Yes, Jan:

I had my port in since 2005. My original doctor retired and he kept putting it off about taking it out. The others didn't seem like they wanted to remove it. Maybe soon. Its just that every month I go and have it flushed out. Further, its not even a PowerPort.

Also, with my previous PET scans it was a CT/PET scan so it was really both a CT Scan and a PET Scan. My most recent PET scan was just a PET Scan. I didn't have to have the contrast and all the other stuff I had done before like getting a catheter, drinking the liquid stuff. I just needed the isotope in the vein and resting 45 minutes.

Kathy

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Hey girl, congrats on the NED news. Enjoy dancing with Ned!!

Mary Ann

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

Thanks so much! It was so exciting to have a good call from my doctor's assistance. Normally they don't call.....I'll take all the good news that one can handle.

This makes me more determined to keep up with the good eating as you and I have shared, and the exercising. You still doing the walking like that 4 miles you did last week? Just read an intereting article on how much exercise helps with cancer....keeps that evil devil away longer and longer. Get out and huff and puff!!!

Jan

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I'm up to 45 minutes a day - striving for an hour. It's huff and puff and lots of sweat. Keep up the good work too.

May we both enjoy much good news from our docs!!

Susie, I'm surprised that this test is not being given mainly because it seems like it is the standard with most here on this site. Is your doc an gyn-onc? I would just ask why they are choosing not to and if you want - go ahead and ask for it.

Best wishes. Mary Ann

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

you don't mean you've had 33 CT scans do you???????

here's the thing-CT gives lots of radiation
PET none i don't think, and it will let you know if your body has any active cancer sites.
PET/CT offers the benefits of the pET with a monumentously lower dose of radiation than a regular CT.
neither MRI nor CT will show the metabolic activity that alerts to a spot being cancer.

if you have really had 33 CT's, ah???? I would get some second opinions. also it would be a good idea to get the cd's of your scans so should you go to another doctor you can take them with you. Plus they are oodles of fun to look at and often the radiologist has mentioned things that you might note your doctor hasn't mentioned, even though they were of concern to the radiologist. it's your little body, take care of it, girlique.
also, i hate to say this but find out if your doctor is paid according to the tests he/she orders, some are and those of us who have those doctors tend to get more scans, sometimes.
CT's can give you the dna damage to cause cancer so really cut back is my advice. i have changed doctors when they want to have follow-up CT's every two months. There should soon be laws out there to limit and track the amount of radiation a person gets cummutively.

let's keep our fingers crossed that those days are soon to arrive.

A chest x-ray have minute amounts of radiation in comparisson to a ct. spelling is optional today

Best of luck,

claudia

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

Oh my gosh no I did't mean 33 CT's ---- 33 rounds of pelvic, external radiation -- part of my protocol for cancer. If that had happened I'd have lit up like a Christmas tree.

You hit the nail on the head with the amount of radiation on the CT and opt for possibly the PET or MRI's. Don't know if my insurance will cover the 2 latter until I've had the original CT completed, then they'll cover. Had this with first CT, as found fibroid cyst on liver and recommended an MRI which showed just part of me....lucky girl!

How often and what type of follow-ups do you have, knowing you're 2 years out? Curious...

You're just loaded with oodles of goodies and I love reading your posts.

Keep'em coming Ms. Claudia....
Jan

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