CSN Login
Members Online: 10

You are here

When did you have your first PET scan.

Sharring
Posts: 24
Joined: Sep 2017

i had only a ct scan and a vaginal ultrasound in The emergency room prior to being referred to another hospital for treatment.  I then had total AH and was diagnosed as stage IIIc grade 3 Uterine carcinosarcoma with metatastic para aortic lymph node involvement.  I then went straight to chemo and have just completed round 3.  I was told I wasn’t scanned because my ca125 marker was stable.  But I have read this marker may not rise with metastasis outside the pelvic region.  How do I know for sure it hasn’t already spread elsewhere?  Should I have expected a scan after surgery?

CheeseQueen57's picture
CheeseQueen57
Posts: 820
Joined: Feb 2016

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
Posts: 891
Joined: Jun 2016

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.

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2614
Joined: Mar 2013

Well said, MAbound.  

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

The only CT scan I had was right after my hysterectomy when I also had a chest X-ray. Nothing showed up.  I'm two years NED and my oncologist's PA said they don't order them anymore unless they suspect something. Too much radiation to justify them without cause.  My CA125 had never been a marker for me so after three tests that was discontinued too.

Love,

Eldri 

Sharring
Posts: 24
Joined: Sep 2017

So if no scans, what’s considered “close” follow up then.  What should I expect?  No wonder the prognosis is so dismal for carcinosarcoma.  Seems archaic to just be winging it when everyone knows it’s goung to reoccur.  I guess I’m just confused about how I’m going to know what symptoms are important and which are not.

Sharring
Posts: 24
Joined: Sep 2017

That’s what I actually anticipated would happen but I’m being told by my team they will do 1 ct scan after chemo (I’m suppose to have external and internal radiation as well ) and then 1 a year.  

CheeseQueen57's picture
CheeseQueen57
Posts: 820
Joined: Feb 2016

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. 

CheeseQueen57's picture
CheeseQueen57
Posts: 820
Joined: Feb 2016

Ultimately, I think the side effects from the treatments are what leads to our demise. So is early identification of a reoccurrence significant? I think my doctor has been trying to insinuate early treatment of a reoccurrence may not be best. It sure is a dilemma if there’s little hope for a cure. 

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

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
Posts: 24
Joined: Sep 2017

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....

Jairoldi's picture
Jairoldi
Posts: 217
Joined: May 2017

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.

CheeseQueen57's picture
CheeseQueen57
Posts: 820
Joined: Feb 2016

My philosophy was hit this monster with all they have to try to kill it the first time and avoid reoccurrence. Unfortunately I lost in that lottery. But I would probably do all that again for the chance of not having to deal with it again. 

Sharring
Posts: 24
Joined: Sep 2017

My oncologist is also really pushing to throw everything we can.  I would jump if I was so terrified of the possible side effects, which would eliminate any quality of life hope.  And  I fear I’ve never had much luck with lotteries either.  It’s such a crap shoot but most accuse me of giving up when I talk about passing on it....

CheeseQueen57's picture
CheeseQueen57
Posts: 820
Joined: Feb 2016

Well, I didn’t have an easy time with chemo. Taste perception, fatigue,hair loss, minor neuropathy and a stroke. After radiation I suffered bladder problems for months, nausea with the radiation. I had a insufficiency fracture of my sacrum and a lumbar fracture. The radiation basically destroyed all hopes of a normal sex life. Despite all of this, I’m alive and a year out from my frontline tratment my QOL isn’t that bad. Bladder issues are gone just a little incontinence remedied with a liner and I’ve been able to travel to Italy, Spain, Alaska with my family and am going to Newfoundland next week. It’s a crap shoot but I intend to live every day to the fullest and I believe the treatment bought me some time. Yes, there’s a new normal but none of us come out of this unscathed and all of us have to make the decisions that are right for us. Good luck. 

MAbound
Posts: 891
Joined: Jun 2016

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!

 

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

I had my first CT scan after completion of chemo but before starting radiation. I had my first PET scan 3 months after completing radiation. I did not have sandwich treatment as my doctor disagreed with that approach; instead I had 6 rounds of carbo/taxol over 18 weeks before radiation. My post-chemo CT scan revealed mets to my retroperitoneal lymph nodes, indicating that (1) my cancer is platinum resistant, and (2) radiation is my best hope for a 'cure'.  Based on the location of the mets, they expanded my radiation field to include my pelvis and my entire abdomen, up to my breast bone. I had concerns about radiation but no reservations whatsoever, as I knew it was my best - at that point probably only - chance of getting the rest of the cancer out of me. I was far, far more afraid of dying from metastatic cancer than I was of any after-effects of radiation. I was exhausted and nauseous almost from the first day of radiation, because they were treating such a large area. The whole experience was not fun BUT I DID IT, and I lived through it just fine. I'm now 3 months out and have no lasting effects except that my appetite hasn't come back entirely (not a problem as I was pretty overweight before) and my blood counts are still a little low, but that's predictable given all the treatments I've been through. I have a lingering tendency toward UTI's, which I can hold at bay by using a perineal irrigation bottle (great tip from this board) after I pee. If I do that religiously, I have no irritation or after effects. I have to use the dialators, and my vagina has definitely shrunk, but I had a radical hysterectomy that took the upper 1/3 of it out and I now have no ovaries/estrogen, so the shrinkage can't be blamed on radiation per se. I understand that log-term effects can take awhile to show up, but I wanted to add my two cents that, while the effects in the moment weren't fun, three months out I'm relatively okay. 

Sharring
Posts: 24
Joined: Sep 2017

i wrote radiation off so quickly because I heard some horror stories for sure.  MAbound...clearly I need to do some more research and its real life experiences that help me most.  I will head to those links.  My radiation sessions are to be done after I complete chemo.  I’m somewhat young...56.. and seem to be handling chemo ok.  I want to be proactive and I certainly don’t want to die. I just feel if I’ve only got a few years left I don’t want to spend them sick.  Chemo is moving quickly so radiation is right around the corner.  I can’t tell all of you how much I appreciate your sharing.  It surely does help me to stay strong.  I’m going to make notes so I have questions ready because I’m not sure what kind but like you dermaus, they are planning on total abdomen due to positive para aortic lymph nodes.  Lordy sometime it takes all my fight just to keep from giving up!!  Thank you all for sharing ...it means the world to me.

MAbound
Posts: 891
Joined: Jun 2016

Radiation doesn't start immediately after chemo. I had a bit more than a month to recover from the last infusion and have the usual lab work and the CT scan done and to meet with the radiation oncologist to discuss that plan of action before actually getting into it. 

CheeseQueen57's picture
CheeseQueen57
Posts: 820
Joined: Feb 2016

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. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2614
Joined: Mar 2013

I did the sandwich but really struggled wrapping my head around radiation.  One of the possible side effects freaked me out so completely that I think that didn't help.  I will say radiation gave me such fatigue like I had never known....

Sharring, I think you see that we have all had different experiences and reactions.  I agree that it is doable.   

MAbound
Posts: 891
Joined: Jun 2016

Things about radiation just keep coming back to me and I just wanted to bring up the issue about your immune system. During chemo my RBCs and WBCs always dropped dramatically between infusion but generally bounced back before I was due for the next one. During and after radiation my blood counts dropped slower but steadily and stayed down for some months after I finished radiation. The fatigue persisted while I was anemic and I had to be careful how much I went out in public during cold and flu season while my white count was down. If you haven't had a flu/pneumonia shot yet, be sure to discuss when to get one before radiation with your oncologist. As long as it isn't a live vaccine, it should be ok to get one, but you'd want to double check on that while still going through chemo. Be really careful of places people take there kids to like church, grocery stores, and public restrooms because you can't count on them to be careful with their germs. Taking a probiotic will help a bit, but not as much as your white blood cells do. It's not a bad idea to be a bit of a germaphobe while your immune system is subpar.

Jairoldi's picture
Jairoldi
Posts: 217
Joined: May 2017

That is a good reminder. I am in the middle of radiation and asked about the flu shot. My doc encouraged me to get it so I did. I can't imagine having the flu during treatment. 

Sharring
Posts: 24
Joined: Sep 2017

I have to work full time during all this. So far chemo has been manageable with a few xtra days here and there.  I am fortunate that my superiors and co workers have been extremely supportive.  Every three weeks is one thing but...5 days a week for 5 weeks of radiation is going to be really tough for me I think.  I’m trying to save in case I need some extra time off.  My counts dropped right away so I have been on nulasta throughout chemo.  Would that mean I will likely have probs during radiation as well you think?  Also, i didn’t get a flu shot but thought I should.  Is there a better time during a chemo cycle that would work?  Again, really great info gals!!

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

i had my radiation late in the day so,I could work all but the last half hour and someone covered for me.  The radiation itself, did not last long.  I did have a problem with fatigues and diarrhea.  Imodium became my best friend and I invested in Depends.  For me, it was easier than chemo and I made it working. everyone is different though.

Hugs and prayers, Lou Ann

CheeseQueen57's picture
CheeseQueen57
Posts: 820
Joined: Feb 2016

Although you have to go every day for radiation, it only takes about 15 minutes. So if they run on time, you are in and out fairly quickly. I always tried to be one of the first patients in the morning. 

barnyardgal
Posts: 227
Joined: Oct 2017

This thread has been very helpful. I haven't had a PET scan yet but recently had the CT scan which came back fine.

I don't really want to have to do radiation (or chemo for that matter) but I'm going with the doctors recommendations to try to kick this cancer to the curb. The doctors want me to do the sandwich treatment, too, so I'll just have to gut through it. I'm just trying to remind myself that by spring, all recommended treatment should be done. Hopefully with not too many lingering side effects but it is a little scary. Then again, so is cancer.

 

Sharring
Posts: 24
Joined: Sep 2017

lots to think about for sure.  We are lucky to have so many willing to share before us.  Real life experiences. Just when I think I’m not strong enough or lack the courage to go forward every one before me reminds me that I am.  There are pitfalls and everyone is different. Sadly we all share a common goal, survival despite the odds.  I often wipe the tears dripping onto my iPad when I first logon here but more often then not, sleep a little better having gained strength from all those before me.  If I had one true wish it would be to round table with all the others in this thread, face to face, if for no other reason than to thank everyone in person.  For as long as I’m able to continue my fight I will try to contribute and provide support.  Today was some bad news for me but I’m going to regroup and pray I pick the right path. Sheesh...I’d rather be peacefully knitting a new winter sweater for my chihuahua!

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

go ahead. It helped me. 

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

Like cheese and MAnound I had extensive radiation. I was lucky in that I live very close to the center, so the daily track wasn’t a problem. I just had a ct scan more than a year passing . My oncologist is also reluctant to give them very often because I’ve already had so much. I’ve had a couple others before surgery and after chemo ended. Some lingering after effects of chemo and radiation areneuropathy and constipation. Still I’m alive and no reoccurance so far after August 2015 diagnosis, so so far I’m grateful.

Violet123
Posts: 27
Joined: Nov 2017

My MD ordered a PET scan for prep for surgery.  My insurance said they take 45 days to authorize PET scans so he ordered a CT scan with contrast prior to surgery and the insurance authorized it sooner. A few weeks after surgery the authorization came in for the PET scan, but my MD said that now that I am on Chemo it wouldn't be of benefit.  He said 3 months after I complete the current treatment plan, taxol/ carboplatan, and then radiation, he would order the. PET scan.  And my chemo port has to stay in for 1 1/2 years after treatment is completed in case there is a reoccurrence.

Anne0803's picture
Anne0803
Posts: 15
Joined: Nov 2017

I had my surgery last October 28, 2016, started my Chemo treatment December 20, 2016 till April 2016.  My platelets only started to go down after my 3rd, so I had a week delay for my 4th, 5th and 6th treatment.   After a month rest I had my External Beam Radiation treatment for 25-28 days on June 2016

I had only minimal side effects from Chemo (my knees are weaker) and a little numbing in my finger tips while a diarrhea lasted after 2 weeks of my last Radiation treatment.

I was pre-occupied during the treatments as we just bough a 39 MY boat, even I'm tired or weak, we still take her out.  And we enjoyed a 32 days of boating this summer up North of Vancouver Island.

After all the treatment I did ask my doctor about how can I be sure if the treatments worked.  The Gynecology Oncologist I met wasn't not the one who did my surgery.  She said If I have unusual pain, bleeding just let her know.  No other test was done.  So I decided to contact the Gynecology Oncologist who did my surgery to get 2nd opinion.  Because I started to feel some back pains and throbbing in my pelvic area.  He agreed and it is reasonable for me to get a CT Scan (the result was clear). Praise God! And also I had a follow-up check up with my Chemotheraphy Doctor and my CA-125 was clear too!!! This all happens last September 2017.

BTW I don't have insurance.  So I can choose any doctor or hospital which I feel it works for me.  

What I have right now is Christian Healthcare Ministries, I've been a member since 2015.  And they were true about helping me financially so far I received 80% of cost of my hospital bills etc.

Subscribe to Comments for "When did you have your first PET scan."