When did you have your first PET scan.

I had 3c, Grade 3 adenocarcinoma. I had a CT scan before surgery, before beginning chemo (I had 14 weeks), and every 3 months after that. I had 28 days of external radiation and 3 treatments of internal. I finished my frontline therapy in November 2016.  In August, my CT scan and subsequent paracentesis indicated a reoccurrence to the periitoneal area. My CA 125 has never been an indicator of activity and my doctor says she doesn’t do PET scans because a lot of areas frequently light up which may not be of concern. I had my last CT scan in October and am due in January. 

MAbound said:

PET Scans

Pet scans cost a lot more than CT scans (and those aren't cheap, either) and many insurance companies are stingy about under what circumstances they'll cover them. While they may pick up smaller areas of suspicious cell activity than a CT, their images are not as clear so it's kind of a toss-up as to which is of more value. I wouldn't worry about not having had one.

The only PET scan I had was before surgery to give my surgeon an idea of how far he needed to go for getting tissue samples to test. You are past that need. I'm stage 3a, grade 3, by the way.

The next time to be looking for a CT scan is after you are done with chemo to evaluate it's effectiveness. If you get radiaition therapy after chemo, there may be CT scans involved with that depending on what method is used to deliver it, such as in 3D-CRT or IMGRT.

CT scans expose you to a lot more radiation than chest x-rays do, so some doctors are more conservative about using it than others. That's not a bad thing. My gyn-onc alternates between chest xrays and CT scans while I'm in the 3 month check up stage and I suspect this coming year, which is my 2nd since treatment ended, I'll probably only get one CT scan.

The effects of exposure to radiation are cumulative, so I wouldn't be upset if your physician is taking the cautious road with them.

 

Well said, MAbound.  

Well, I know the CT scans have a lot of radiation but I had no symptoms and if we weren’t watching the ascites on my scan we wouldn’t know of the reoccurrence. Would that be better?  Will there be ultimately a different outcome. Hard to say. 

I usually have CT scans ordered by my radiology oncologist but this time an MRI was ordered.  That just seems unusual for checking for cancer...anyone else had an MRI instead of CT?  When I called to schedule and the imaging center said that was what was ordered it just seemed odd to me because I thought I heard him say CT scan followed by a PET scan a few weeks later...

Sharring said:

I agree cheese queen....

if the concern is too much radiation for a ct scan that may be key in early recurrence then why would they want to blast my abdomen with 30 sessions of radiation that few escape long term known side effects from? And brachytherapy?  especially when I can find no trial / article showing any gain for end of life statistics.  Contradicts the wait and see follow up care.  If their so sure they will catch a recurrence without such tools, why would I risk and suffer with organ damage, neuropathy etc while “waiting”.  I truly am trying really hard to remain positive but these are some tough decisions that I need to make quickly.  As always, thanks for everyone’s feedback.  I pray for the strength to make those hard decisions....

Hi Sharring, I asked my radiologist why I should have radiation after she told me all of the possible effects. Her answer was that although radiation would not extend my life it is geared toward better quality of life. I opted to go ahead with radiation. I'm not sure what would happen without radiation...Maybe more dire effects from the cancer than from the treatment. Wish I knew the answer to that.

Sharring, what you are feeling and are worried about is something that we have all had to deal with as we went through frontline treatment and were facing radiation. It seems to be the norm when we get the low-down on all of the potential side effects of radiation therapy. They are indeed frightening and tend to make us all freak out about them. Here was my experience: https:csn.cancer.org/node/305795 and the advice I got that really helped me a lot.

The thing to keep in mind is that what you are told about radiation is a lot like all of those drug commercials you hear on TV that have to list all of  the possible different side effects. They are possible, but that doesn't necessarily mean that they're all going to definitely going to happen to you. Even what you hear from other's experiences doesn't necessarily mean that the same will be what happens to you. It's this "we are all individuals" thing again. We all come with different strengths and weaknesses that impact how we're going to come through radiation. There are things like auxiliary health issues, age, weight (this time overweight actually has a protective effect during radiation), diet (I was told to follow a low fiber diet), at what point during frontline treatment you have radiation (before, sandwiched, or after chemo), method used to deliver the radiation (this would be a good area to familiarize yourself with and discuss with your radiation oncologist), and what you do to take care of yourself that all impact the outcome as far as side effects. This might be a helpful thread as to what you can do for yourself should you undergo radiation: csn.cancer.org/node/309702.

The most common side effects during radiation seem to be fatigue (so prepare to need to have plenty of rest), diarrhea or constipation (diarrhea seems more common but it was constipation for me), and bladder irritation (why drinking lots of water through radiation is still really important). I had no nausea, but that may happen more with the sandwich technique and I didn't have that.

The sandwich method seems to be the preferred method of delivery these days, but my oncologist waited until I was done with chemo because he felt that radiation damages blood vessels where it is delivered which would impede the chemo getting to those areas. Maybe that's not needed if radiation takes care of any cancer there, but from  what I understand, radiation in the middle of chemo can impact how well either is tolerated compared to the first three doses of chemo. Just something else you may want to discuss with both your gyn and radiation oncologists.

I'm doing well and tolerated the radiation ok. Constipation remains the lingering problem for me, but it is gradually improving from what it initially was. One has to have a lot of patience recovering from treatment because it can take a year or two or three. I had 3D-CRT as the method for radiation delivery. They can actually mold the beams to avoid areas they don't want to irradiate and minimize side effects to the bladder, hips, and colon. I had the full boat pelvic radiation followed by a vaginal "boost" (which is basically brady administered externally instead of internally). 

Hope this helps you to have less fear and make whatever decision you'd feel best about. This is a tough time during treatment, but you are making progress. Hang in there!

i also had radiation high because of positive para aoritic lymph node. Be prepared for increased nausea right from the first session and be sure to take your nausea medicine BEFORE the first session. I thought I was just being measured but they gave me a treatment and I wasn’t prepared. It was a horrible 45 minute ride home in the car. Nausea medicine helped but didn’t make it go awY completely. Also be sure to take probiotic such as Culturell. I had no problems with diarrhea. Drink lots of water. I’m taking d-mannose powder to prevent UTI now. Perhaps it would have helped then. And vitamin e vaginal suppositories help with dryness and stopped the burning I experienced.  Wish I had discovered those during the treatment also. Mentally I found radiation harder than chemo. Probably because it was every day for 28 days. But if I can get through it, you can too.