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Post-treatment CT Scan

nancibee's picture
nancibee
Posts: 49
Joined: Sep 2012

I had my first post-chemo and vaginal brachytherapy visit with my GYN oncologist, who is an amazing doctor and person who graduated from Harvard Medical School. I had stage 1 UPSC. I told her that I was concerned that my oncologist had told me that I would not be getting CAT scans because it seems like most of the UPSC posters on the boards were getting regular CAT scans and that even though recurrences were most common in the vaginal cuff, I was worried about remote recurrences. She told me that if I wanted a CAT scan, she would be happy to have one done but that she really liked to rely on CA 125 and examination. She said that CT scans showed things that look funny and cancer cells only when they get to a size where they have already presented symptoms. Also, it is pretty much a given that I will have something that looks funny on a CAT scan since I have benign hemangiomas on my liver and needed an MRI after my post-surgery CAT scan. Also, she says we already know I am at risk of cancer especially since I have other things going on like hypertension and MS so exposing me to radiation is not such a good thing. But she said, at the same time, if I feel stressed because I read the boards and everyone is having CAT scans and I am not, that stress is not good when it comes to cancer.

Anyway, I told her that I would like at least an annual scan and she said OK. I will be alternating visits with her and the oncologist so will be seeing oncologist in Feb. and her in Mar.

Just wondering what everyone has been told about regular CAT scans. Also my CA-125 which was 23 after my surgery is down to 18, completely normal.

HellieC
Posts: 432
Joined: Nov 2010

Hi
For what it's worth, I was worried too and got the same sort of reply from my doctors in the UK. They don't use CT/MRI scans on a routine basis to check for recurrence - for all the reasons you have quoted. I expressed the same concerns and my doctors said that I could have them yearly if I wanted but, in any case, if I reported any symptoms, they would have a "low tolerance" for ordering scans. This has worked well for me. I haven't had regular scans but have had them whenever I have reported anything suspicious.
Hope this perspective from another country helps.
Kindest wishes
Helen

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

Nanci, Surely can relate to feeling more comfortable with the scans, especially after much chatter on these boards. After my treatments ended in Dec '09 I had a CT which found the same thing you had on your liver -- hemangiomas. Never heard anyone on these boards with this on their liver.

CA125 for me is a very good indicator, but not for everyone. After the initial 2 CT's in 2010 and I read about lots of radiation from scans I had a talk with my oncologist. He and I both came to an agreement with following "symptoms" and my PAP and CA125. My last 6-month checkup was in July and next one in January he'll do a CT scan. Came to agreement we can do one every few years or so, unless I have some symptoms.

What I have found after being on another board for my MMMT cancer, many women are going this same route....less scans. Really in the end if it stresses you of the 'UNKNOWN' go with the scan....simply not worth more stress on your body. I figure if this devil is going to hit me again, it'll hit and I'll deal with it then. We can never be too prepared. I as well remember reading about detecting cancer recurrence earlier via scan, vs. simply waiting with no scan, and a person's life expectancy was just as long. Might try to find that information as very informative. Bottom line -- do what YOU feel is best for YOU!!! Go with your gut~

How many times haven't we heard about women who have their annual mammograms and 2 months later find a lump??? Nothing is perfect with technology.

Wish you the best in your journey!!
Jan

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

I like your doctor and how she thinks. She's looking out for your welfare. My doc who I respect highly also does not do regular scans but minimally once a year. He uses PET/CT. I think it's good when our doctors think outside the box and don't always follow a formula.

Also my doc told me that women usually find recurrence. In my case that was true. He said to report anything different in that lasts 2 weeks. I found enlarged lymph node on my neck. Next recurrence was found by CA125 which he monitors closely.

YOu are in good hands. Enjoy each day.

Hugs, Mary Ann

nancibee's picture
nancibee
Posts: 49
Joined: Sep 2012

Thanks folks. You know cancer has actually been the least stressful event in my life these past few months. I think it is beacuse I do feel as if I am in good hands unlike other things like the broken water pipe that caused major flooding in my home or my employment situation. Those types of things are all on my shoulders. With cancer, from the get go, I've always felt that it is what it is and whatever happens will.

My GYN oncologist was described as an angel by the nurses in the surgery recovery room. I am lucky to have her as my physician. I am also glad that I am being given a role in the decision instead of simply being told this is what we pay for and that is the end of the discussion. Kaiser practices "evidence based" treatment and Jan is correct. The evidence shows that there is no correlation between scans and improved survival. On the other hand, as Jan says, at the same time, we are told to think of ourselves as a statistic of one.

The boards are informative but sometimes cause me stress because with UPSC, there are a lot of different treatment approaches regarding chemo and radiation and followup and I want to make sure I am receiving what works best. A study came out in May of this year from MD Anderson saying sandwiching could be beneficial. So I was concerned that my oncologist did not choose to do that. I told that to my GYN/Oncologist and found out that she was totally familiar with the study and told me that it was not definitive as it was not random and did not have a big enough sample. I was amazed at how on top of current research she was.

So to make it short and get ready for my 12 mile hike, I will put my trust in my doctors and get a CT scan only annually. Thanks everyone. BTW, Dr. Chen has a really good home page with access to many resources and you do not have to be a Kaiser patient to access. http://mydoctor.kaiserpermanente.org/ncal/provider/annettechen

ConnieSW's picture
ConnieSW
Posts: 562
Joined: Jun 2012

Thankyou for sharing your doc's viewpoint about the sandwich tx. When I read about it, I was past the halfway point in my chemo so I didn't even bring it up with my dr. However, it troubled me that I may have missed a chance to improve my odds of beating this thing. I now feel a bit reassured. I had notice it was a small study.

sunflash's picture
sunflash
Posts: 152
Joined: Aug 2011

Hi ladies,
My doctor, who trained and used to work at MD Anderson has told me the same things I'm hearing you say your doctors have told you. She doesn't do regular scans unless something warrants them being done, even though she would give me one if I requested it. She feels that recurrences will present themselves first through symptoms and regular exams. She feels too many benign conditions would show on a scan which would cause additional worry and stress. She's also told me that survival statistics aren't improved with regular scans.
My CA125 is probably not a good indicator for me, as it was never elevated before or during treatment, and my last number was 4. I'm now 13 months post treatment and my next appointment is January 3, which will put me at 14 months. Still feeling great and going strong.
By the way, I received no radiation as I had been treated prior to this cancer with radiation and couldn't receive it again. My doctor told me she wouldn't have prescribed radiation for me anyway, and my second opinion doctor at MD Anderson told me the same thing. I trust my doctor completely, and it will be 6 years in March since the diagnosis of the first cancer. I feel fortunate that I was already being seen by a gyn oncologist before the UPSC, and it was caught very early.
I know what you mean about these boards causing more stress. I have to take a break from them from time to time. My job has been my salvation. I'm too busy to dwell on this....and thank God for that.
My prayers are with all of you, all of us here.

Ruffy7
Posts: 126
Joined: Sep 2011

Hello, I don't have uterine cancer - but had appendix cancer - the mucinous type. My current onc told me that getting a CT scan was like scanning a room painted white and then scanning it again after it was painted a different color - it would show no difference. We are still doing scans - not sure why if he thinks this but I still feel safer doing it right now. He relies more on my symptoms and blood work. I'm 18 months out from dx and no sign of any cancer now. However, I never had symptoms, it was caught during my first colonscopy. I know these 2 cancers are different but just thought I'd share. :)

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