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What kind of follow-ups?

Flufff's picture
Flufff
Posts: 68
Joined: Apr 2019

Hi all. 

Just wondering what kind of examinations you are getting at check-ups?

Im in Denmark so here it’s normal to get scans. At least for uterine cancer. I’ve had both. My current oncologist prefers CT scans over PET/CT. She’s the head doctor of the oncologist department. Yes, I’m a bit lucky there ;) Bit it’s just a bot strange that it differes so much?

Ive also heard of women that doesn’t even get a scan. Just a talk and perhaps a pelvic exam. I’m just thinking. That doesn’t show a recurrence in eg lungs or liver or lymph nodes??

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1734
Joined: Jun 2015

I am currently on a 6 month interval for checkups. I do not get scans. I only get a pelvic exam. CA125 was not a good marker for me so they stopped those about 2 years ago.

I will be moving to an annual check up with a regular GYN starting in January.

EZLiving66's picture
EZLiving66
Posts: 1467
Joined: Oct 2015

I'm on annual checkups with my GP. She is much more concerned about my diabetes and kidney problems which, she says at this point, almost five years NED, will kill me long before the cancer does! I tend to agree with her. 

She said if I have any unexplained pain or other symptoms to let her know but otherwise, it's, "I'll see you in three months after your blood and urine tests."

 

Love,

Eldri m

Forherself's picture
Forherself
Posts: 492
Joined: Jan 2019

I am on 6 month checkup..  just a pelvic exam and physical.  Questions about pain anywhere.  I think CT scans and PET scans use ionizing radiation that can damage DNA.  MRI's don't use ionizing radiation.  Doctors use them with caution. A case of the treatment being worse than the disease.   PET scans are expensive too.  I had CT scans before my surgery and have not had anymore. I do not have a CA 125 done either

cmb's picture
cmb
Posts: 625
Joined: Jan 2018

I had a pre-surgery CT-scan, then CT-scans after I completed chemo and radiation. But my doctor doesn't do routine CT-Scans.

However, I have had two other CT-scans, but only when I reported a problem. Once was for an unexplained incident of bleeding and the other for persistent stomach aches. None of the scans since the original pre-surgery one have shown any signs of cancer.

I saw the gynecological oncologist once every three months for the first two years after treatment ended. Now I'm on a 4-month exam cycle that I believe will continue during the fourth year. During my fifth year I'll change to exams every 6 months. He does a physical and pelvic exam during each of these appointments, except for the televisit I had a couple of weeks ago.

We haven't discussed if I'll continue seeing the gynecological oncologist after five years (assuming I stay NED that long) or switch to a regular gynecologist then. I do have an aggressive form of uterine cancer, so I'm rather hoping I can stick with the gynecological oncologist for the annual exam.

MAbound
Posts: 1101
Joined: Jun 2016

I have moved to a different city from where I was originally treated for my cancer and so had to change doctors for my follow-up care. 

My original gyn-oncologist was 69 years old and tended to do things the old school way, whereas my new gyn oncologist is much younger and tends to stick to what the current protocols are. I made the move about 18 months after I finished chemo and radiation.

The original plan plan for me was appointments every 3 months for the first three years after frontline treatment with my CA-125 and other labs checked before every appointment and alternating between a chest xray to check for lung mets for one visit and then a CT the next time to check for mets from pelvis to neck. He counted time in remission from when I finished radiation rather than chemo. He also had me taking Megace as an added insurance after I finished radiation because of my advanced stage and high grade adenocarcinoma. When I got to the 3 year mark he planned to cut me back to every 6 month visits and then see me annually at the 5 year anniversary for the rest of my life or his, whichever came first.

Things changed a bit with my new doctor in Boston at Dana Farber. He took me off of Megace right away and cut me back to check-ups at 6 month intervals before I was 24 months out of treatment. (He counts from when I finished chemo instead of radiation, too). He does not do CTs, chest xrays, or check CA-125s. At about 38 months he decided to count my annual gynecologist visit as one of my six month check-ups because she is part of his medical group, so technically, I'm only seeing him annually during my 3rd and 4th year after frontline treatment. I suspect I'll be turned over to just seeing the regular gynecologist when I hit the 5 year mark.

It was kind of a leap of faith to make all of these changes because I was really attached to my old doctor and felt like I was in the best of hands with him. The thing is, I've also been really impressed with how on-the-ball and easy to talk to my new doctor is. I had a really hard time getting a new gyn oncologist to take me on for follow-ups when I moved, so I felt like I hit the jackpot when one of the top ones at Dana Farber who wasn't taking new patients helped me to get in with a younger associate in his group. Everything for me has been so-far-so-good, but should I have a recurrence, I feel like I'm in with a really good medical group. I sleep ok with this at night because I have learned from the rest of you on this forum that follow-up practices are kind of all over the place depending on the doctor. There really are no absolutes about how aggressive follow-ups need to be in terms of testing and that sometimes less can be safer than more.

 

BluebirdOne's picture
BluebirdOne
Posts: 370
Joined: Jul 2018

I just returned from  my last 3 month appointment and I was NED, no scan, just an internal and CA-125, even though at dx mine was 17, now 6. I will be two years from dx in July, but late October would be my 2 year mark for my last chemo and radiation, so I was surprised that they pushed it back to 6 months this visit. Maybe this is a good thing with Covid. It has been 11 days since I was seen in person, and so far no Covid. Had a CT scan immediately after my hysteroscopy, before surgery due to extreme pelvic pain. Negative for any mets. Had another CT in November 2018, immediately following my last chemo and radiation. Had another CT February 2020 due to pelvic pain, negative. Otherwise they told me no more scans unless there are medical reasons. Pretty much on my own. I did read that there was no difference in OS whether scans are done or not, which I get intellectually, but it scares me to not be scanned as how else do they find something early? 

xxoo

 

Denise 

barnyardgal
Posts: 272
Joined: Oct 2017

I have a Ct scan every year. Just had my last 3 month checkup and will switch to 6 months after the next test. As I had a ruptured appendix last month,  I had a visit via video, so I need to get my internal in June after I heal completely.

LisaPizza's picture
LisaPizza
Posts: 336
Joined: Feb 2018

I was initially on 3 month follow ups, now more like 4 ish months. I had stage 3a and treatment (surgery, chemo, and external rads) ended in June 2018, so I'm just coming up on 2 years. I get a CT every 6 months, because Ca125 wasn't a marker for me (although she still checks it for some reason, I  guess because it's easy to check). I think the important thing is the pelvic exams, to catch anything there early. The CTs can be be difficult in their own way. You think it will be a relief if they're normal ... but they're never really normal. There's always, and I mean always, something that's read as possibly abnormal but probably not ... leaves you always wondering. I've had kidneys cysts, lung granuloma, "hypodensity" in the pancreas, thickening in the colon, small amounts of fluid here and there, etc. It's hard not to worry a little even when the radiologist downplays it - after all, I had a cyst in my ovary that gyn wanted to just follow up later with ultrasound  ... turned out to be full of cancer. On balance, I'm glad I've had them.

Theskinnyscot's picture
Theskinnyscot
Posts: 31
Joined: Dec 2019

so I had an authorization for a chest ct to check for lung cancer but I didn't schedule it as I wanted to check with my oncologist if he was going to request one from neck to mid thigh then we could essentially kill two birds... Great plan on paper, but then comes covid and the authorizations have expired so have to be resubmitted. Also my insurance company is having some brain farts and even though I have paid all my deductibles and co pays they keep Saying I haven't !. since I have a had (too much) time on my hands, I am thinking do I even need the lung ct? I had a pet/ct in October before surgery. If I had lung cancer it would have shown then, no? Also since I had a bad reaction to the contrast dye last time (many years ago) I had a ct I have to take a pre med before hand but it still makes me nervous. I would push for a pet scan again but it is a lot more radiation and I just finished 25 rounds of pelvic IMRT at the end of January. That along with the removal of 20 lymph nodes gave me lymphadema. 

I have to call my Drs office either way but I wanted to see if any of you ladies had any input. He is not very approachable and I feel pressured when he suggests anything. Thanks in advance. Y.

Tamlen's picture
Tamlen
Posts: 294
Joined: Jan 2018

I'm allergic to the contrast dye used for CT scans (like, really allergic -- anaphylaxis) and CT scans without the dye don't give great imagining of the abdomen. So I mostly get PET scans. Initially it was every 3 months, now it's every 6 months unless my gyn onc sees something worrisome, then we go back briefly to 3 months or add a CT to the mix. Fortunately, my insurance has never denied coverage for a PET scan, perhaps because there's no alternative for me. I do worry about the cumulative results of these scans if I last a long while, but on the other hand, at Stage 4B, it feels dangerous not to scan.

I have two oncs I see regularly -- my medical onc and my gyn onc. I fuss with the schedule a bit so I see each of them about every 3 months. I get bloodwork and a physical exam.

It's interesting to see all the different treatment patterns among us -- good reminder that oncology is an art and a science.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1734
Joined: Jun 2015

Good to see you Tamlen. Would your doctors consider using MRI instead of the PET / CT scans? I'm asking because that is what they use to monitor my sister. She had reached the limit on her body tolerating the radiation. She has had 5 different cancers over the last 20 years.  I wonder why all of us aren't able to do the MRI surveillance? Maybe it isn't as accurate? Any of our members that have knowledge on this are welcome to come back and explain!

Love and Hugs,

Cindi

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