PET scans???

daisy366

Hi All,

I am a new member. I have (I assume) stage 4 UPSC - originally it was 3a but first PET after surgery showed distant mets in lymph system in the neck, thoracic cavity, and abdomen. Dr. never told me stage 4 but I assumed based on what I've read. I guess I should ask him to be sure - but I guess it didn't seem important at the time because "it is what it is".

Anyway, I finished 6 rounds of chemo 2 weeks ago. CA 125 after round 5 was 9 - down from over 200 before surgery. I was scheduled for a PET scan this week to determine status but it was canceled b/c Insurance company rejected it. They are requiring a peer to peer consult. My Dr. is going to advocate for the scan.

What has been your experience with PET scans, CT scans, etc. following treatment? When are they typically done in order to determine next course of treatment?

Daisy

lindaprocopio

I've never had a PET Scan.
Welcoome Daisy!

I don't think PET Scans are typically approved by insurance for uterine cancer as a routine test, but can be covered if a PET is needed to confirm whether something suspected is there or not if it can't be seen or diagnosed definitively in a CT-scan but is indicated by something else. Peggy posted an article that predicted that by April 2009 the FDA would come out with a recommendation that insurance cover PET-scans for uterine cancer. Hope so. Most of us get CT-scans every 3 months.

deanna14

lindaprocopio said:

I've never had a PET Scan.
Welcoome Daisy!

I don't think PET Scans are typically approved by insurance for uterine cancer as a routine test, but can be covered if a PET is needed to confirm whether something suspected is there or not if it can't be seen or diagnosed definitively in a CT-scan but is indicated by something else. Peggy posted an article that predicted that by April 2009 the FDA would come out with a recommendation that insurance cover PET-scans for uterine cancer. Hope so. Most of us get CT-scans every 3 months.

PET
I remember Peggy posting that article about the PET scan and a friend that works in radiology told me she thought it had been passed that insurance cos will have to cover PET scans if that is what the dr. orders. Don't quote me, I don't know where she got her info?

daisy366

deanna14 said:

PET
I remember Peggy posting that article about the PET scan and a friend that works in radiology told me she thought it had been passed that insurance cos will have to cover PET scans if that is what the dr. orders. Don't quote me, I don't know where she got her info?

Fighting for a PET scan
Hi all,

I'm fighting for my post treatment PET scan!! Insurance denied it twice - Dr and me are both appealing now - got info in to insurance and it's wait and see time now. I am hopeful this will fly. I guess Aetna and BC/BS are bad about denying this test but others approve - I have Aetna.

The Clinical Policy Bulletin 0071 that they used to deny me (denies endometrial totally - will pay for ovarian) had a couple of things that did apply to my case - so I approached the appeal with that argument.

My GYN/ONC group prefers PET scans over CT at least in my case - I learned that the PET shows actively growing cells. My first one (which insurance covered in Oct interestingly enough) showed mets in lymph nodes in many areas of my body - from abdomen to neck!! talk about scary. I hope that a CT would have picked that up. Dr. wants to compare initial PET with a post treatment PET not a CT scan. He'll do CT if PET won't fly.

Maybe this is an issue we need to learn more about and fight insurance companies for. Let me know what your doctors think about CT vs. PET scans. Are they not using because they prefer CT or because they are not covered by insurance??

Mary Ann (aka Daisy)

Deblittleton

Pet scan
Hi Daisy,
I am new also. Let me tell you about my experience with Pet vs Ct scan. Pre op on my abd Ct scan it showed a nodule in my left lower lung, a spot of my liver and various enlarged lymph nodes around my uterus. All I really new at this time was that I had uterine cancer.

A pulmonary critical care Dr., that I work with, discussed this with the head radiologist. It was decided to order a Pet scan the next day. The results were that several lymph nodes around the uterus "lit up", but the lung and liver showed nothing. It was presumed pre op hysterectomy that the cancer had spread to these lymph nodes. The very small nodule in the lung, possibly from a previous infection is to be followed up every 2 months with a chest Ct scan.

After the total abd. hysterectomy and 25 lymph nodes removed, ALL lymph nodes were negative! They "lit" up because of inflammation. So your other lymph nodes in the neck, thoracic and abdomen, have these been biopsied to be sure?

Deb

daisy366

Deblittleton said:

Pet scan
Hi Daisy,
I am new also. Let me tell you about my experience with Pet vs Ct scan. Pre op on my abd Ct scan it showed a nodule in my left lower lung, a spot of my liver and various enlarged lymph nodes around my uterus. All I really new at this time was that I had uterine cancer.

A pulmonary critical care Dr., that I work with, discussed this with the head radiologist. It was decided to order a Pet scan the next day. The results were that several lymph nodes around the uterus "lit up", but the lung and liver showed nothing. It was presumed pre op hysterectomy that the cancer had spread to these lymph nodes. The very small nodule in the lung, possibly from a previous infection is to be followed up every 2 months with a chest Ct scan.

After the total abd. hysterectomy and 25 lymph nodes removed, ALL lymph nodes were negative! They "lit" up because of inflammation. So your other lymph nodes in the neck, thoracic and abdomen, have these been biopsied to be sure?

Deb

PET vs. CT
Hi Deb,

No, the lymph nodes in neck, thorax and abdomen were not biopsied. This is a good question for me to ask my doctor. All I know is that after PET I went to Moffitt Cancer Center for second opinion and the consensus was that my UPSC had metastasized in the lymph system.

I am being patient with the insurance appeal and figure this thing will work out the way it is supposed to and I will either have a PET or CT scan soon. I will ask the questions that you have raised - could this be inflammation rather than metastasis?

Thanks for your information, Deb.

Mary Ann (aka Daisy)

Ro10

daisy366 said:

PET vs. CT
Hi Deb,

No, the lymph nodes in neck, thorax and abdomen were not biopsied. This is a good question for me to ask my doctor. All I know is that after PET I went to Moffitt Cancer Center for second opinion and the consensus was that my UPSC had metastasized in the lymph system.

I am being patient with the insurance appeal and figure this thing will work out the way it is supposed to and I will either have a PET or CT scan soon. I will ask the questions that you have raised - could this be inflammation rather than metastasis?

Thanks for your information, Deb.

Mary Ann (aka Daisy)

Daisy who did you see at Moffitt
I too am going to Moffitt Cancer Center in Tampa. I am seeing Dr. Sachin Apte. He is the one who did my robotic surgery in January.

It would be great if the "lit" up lymph nodes were inflammation rather than metastasis. That would be wonderful news. I hope you find out soon. The waiting is so anxiety provoking. Good luck with your appeal. I hope you get an answer soon. You remain in my prayers.

daisy366

Ro10 said:

Daisy who did you see at Moffitt
I too am going to Moffitt Cancer Center in Tampa. I am seeing Dr. Sachin Apte. He is the one who did my robotic surgery in January.

It would be great if the "lit" up lymph nodes were inflammation rather than metastasis. That would be wonderful news. I hope you find out soon. The waiting is so anxiety provoking. Good luck with your appeal. I hope you get an answer soon. You remain in my prayers.

Ro - Moffitt
Hi Ro,

I saw Dr. Roberts in October for a 2nd opinion. He could not offer me anything else (trial, treatment options, etc) than my local doctors - actually when he talked to me he looked pretty sad - when I asked if I "was a goner" he laid it out - if I didn't respond to chemo I would probably be dead in a year. Pretty scary stuff. I remember calling my onc nurse from the Moffitt waiting room wanting to start chemo that day!!!

None of the docs that looked at my PET mentioned inflammation but I guess anything is possible. I'm patiently waiting to hear from insurance - I'm expecting something will happen this week.

Where to do winter in FL?? It would be great if we could meet - when are you returning north? I live in Cape Coral- about 1.5 hours south of Tampa. If you are interested maybe we could meet halfway.

Mary Ann (aka Daisy)

lindaprocopio

daisy366 said:

Ro - Moffitt
Hi Ro,

I saw Dr. Roberts in October for a 2nd opinion. He could not offer me anything else (trial, treatment options, etc) than my local doctors - actually when he talked to me he looked pretty sad - when I asked if I "was a goner" he laid it out - if I didn't respond to chemo I would probably be dead in a year. Pretty scary stuff. I remember calling my onc nurse from the Moffitt waiting room wanting to start chemo that day!!!

None of the docs that looked at my PET mentioned inflammation but I guess anything is possible. I'm patiently waiting to hear from insurance - I'm expecting something will happen this week.

Where to do winter in FL?? It would be great if we could meet - when are you returning north? I live in Cape Coral- about 1.5 hours south of Tampa. If you are interested maybe we could meet halfway.

Mary Ann (aka Daisy)

How can they say things like 'dead in a year'??!!! ((Mary Ann))
I get so angry when I hear an oncologist say something like "dead in a year"! If your chemo doesn't work, you try a DIFFERENT chemo. or something else! I hope he at least followed that with something hopeful and encouraging! When I pressed my oncologist about the recurrance rates for UPSC, he said that "Yes, my cancer at Stage III-c has a poor prognosis no better than ovarian cancer"; but that my "PERSONAL prognosis is very good"! He always tells me we're "going for a cure here", and refers to me as "already in remission" even as my treatments go on and on and on. ((((Mary Ann)))) Should I come down there and kick his butt??! HA!

barb55

Breathe
Mary Anne, I have a magnet on my refrigerator door that says: Things to do today-Breathe in Breathe out. I follow this simple rule everyday. This sure can be overwhelming but You are not a statistic- and don't let that doctor treat you like one. Yes we need to be realistic and we have a serious cancer- we have to find a balance between battling this monster and still treating each day as a gift. My UPSC was spread to my lymph nodes and it will be just one year since my treatments ended.
Please know that you have every reason to believe that you will be okay. Sending you strength and sincere wishes.
Barb

Ro10

daisy366 said:

Ro - Moffitt
Hi Ro,

I saw Dr. Roberts in October for a 2nd opinion. He could not offer me anything else (trial, treatment options, etc) than my local doctors - actually when he talked to me he looked pretty sad - when I asked if I "was a goner" he laid it out - if I didn't respond to chemo I would probably be dead in a year. Pretty scary stuff. I remember calling my onc nurse from the Moffitt waiting room wanting to start chemo that day!!!

None of the docs that looked at my PET mentioned inflammation but I guess anything is possible. I'm patiently waiting to hear from insurance - I'm expecting something will happen this week.

Where to do winter in FL?? It would be great if we could meet - when are you returning north? I live in Cape Coral- about 1.5 hours south of Tampa. If you are interested maybe we could meet halfway.

Mary Ann (aka Daisy)

Mary Ann - Sorry you got such bad news
That had to really scare you to hear those words. My doctor told me was very serious but not hopeless. I still have hope that the chemo and radiation will work. I hope your treatment will work for you, too. I hope you hear about approval for the PET scan this week.

We winter in Treasure Island. The name is as nice as the place. We love it here. This is our third winter here, and I hope we have many more winters to come. We are on the intracoastal waterway and 2 blocks from the Gulf. We walk the beach many times each week. That is my favorite place to walk. I will miss it when we go back to Illinois. But then I do my passion of gardening. I am addicted to gardening, and am so glad I have the energy right now to do the gardening. I hope my energy continues while I go through radiation therapy.

We have a 4 day cruise scheduled for next week Thursday through Monday. I am looking forward to that as some friends from Illinois will be going along, too. Looking forward to seeing them. We will probably leave March 28 to get back for the radiation scheduling to get started with the treatments. Don't know what your schedule will be for that time period.

You remain in my thoughts and prayers.

daisy366

barb55 said:

Breathe
Mary Anne, I have a magnet on my refrigerator door that says: Things to do today-Breathe in Breathe out. I follow this simple rule everyday. This sure can be overwhelming but You are not a statistic- and don't let that doctor treat you like one. Yes we need to be realistic and we have a serious cancer- we have to find a balance between battling this monster and still treating each day as a gift. My UPSC was spread to my lymph nodes and it will be just one year since my treatments ended.
Please know that you have every reason to believe that you will be okay. Sending you strength and sincere wishes.
Barb

"dead in a year"
Dear Barb, Ro, and Linda,

Thanks for your feedback and encouragement. Linda, you are welcome to come "kick his butt". My husband feels the same. Maybe I was too much in shock to feel anger toward him. Anyway, He's not my doctor, but it would be nice if these pros instill more hope rather than fear. My local doc was like yours - "you are different, you are going to beat the odds...". I think my "ignorance" was by choice since I did not want to know too much about this CA b/c all I read was "doom and gloom". I am anxiously waiting the result of chemo - wondering if I am imagining some numbness in my neck or if it is real.

I'm working on being more "in the moment. and more accepting of the AA philosophy of acceptance and that "things are as they are supposed to be at this moment". Now that my "old" doctor has left the practice-(%$#@)- I plan to call the "new" doctor tomorrow and ask for his help in fighting this insurance thing. Something better happen this week or I will call you Linda - maybe you could be my spokesperson to the insurance company!! I have a co-worker that had lung CA and had same problem with insurance. She promised that her "husband would sue them if she died" and her PET scan was promptly approved!!! I haven't gone that route yet, but may this week!!

Peace, Love and Prayers to all!!

Mary Ann (aka Daisy)

daisy366

Ro10 said:

Mary Ann - Sorry you got such bad news
That had to really scare you to hear those words. My doctor told me was very serious but not hopeless. I still have hope that the chemo and radiation will work. I hope your treatment will work for you, too. I hope you hear about approval for the PET scan this week.

We winter in Treasure Island. The name is as nice as the place. We love it here. This is our third winter here, and I hope we have many more winters to come. We are on the intracoastal waterway and 2 blocks from the Gulf. We walk the beach many times each week. That is my favorite place to walk. I will miss it when we go back to Illinois. But then I do my passion of gardening. I am addicted to gardening, and am so glad I have the energy right now to do the gardening. I hope my energy continues while I go through radiation therapy.

We have a 4 day cruise scheduled for next week Thursday through Monday. I am looking forward to that as some friends from Illinois will be going along, too. Looking forward to seeing them. We will probably leave March 28 to get back for the radiation scheduling to get started with the treatments. Don't know what your schedule will be for that time period.

You remain in my thoughts and prayers.

Treasure Is.
Hi Ro,

We have friends from upstate NY (where we are originally from)who used to vacation in TI - they also loved it.

Enjoy your cruise - I've never taken a cruise - that's on my "to do" list. If you think it's possible for us to connect, I can travel on weekends or Tuesdays - let me know via this site or email (daisyelder@comcast.net).

I am a gardener too. Florida is hard to do vegetable gardening - soil is very sandy and not fertile. I am basically lazy and stick to native hardy plants. I'm not up to much gardening yet. Need to weed, etc. I'm into xeriscaping down here.

We will connect next year if not this. Enjoy your trip.

Peace, hugs, and prayers, Mary Ann (aka Daisy)

daisy366

daisy366 said:

"dead in a year"
Dear Barb, Ro, and Linda,

Thanks for your feedback and encouragement. Linda, you are welcome to come "kick his butt". My husband feels the same. Maybe I was too much in shock to feel anger toward him. Anyway, He's not my doctor, but it would be nice if these pros instill more hope rather than fear. My local doc was like yours - "you are different, you are going to beat the odds...". I think my "ignorance" was by choice since I did not want to know too much about this CA b/c all I read was "doom and gloom". I am anxiously waiting the result of chemo - wondering if I am imagining some numbness in my neck or if it is real.

I'm working on being more "in the moment. and more accepting of the AA philosophy of acceptance and that "things are as they are supposed to be at this moment". Now that my "old" doctor has left the practice-(%$#@)- I plan to call the "new" doctor tomorrow and ask for his help in fighting this insurance thing. Something better happen this week or I will call you Linda - maybe you could be my spokesperson to the insurance company!! I have a co-worker that had lung CA and had same problem with insurance. She promised that her "husband would sue them if she died" and her PET scan was promptly approved!!! I haven't gone that route yet, but may this week!!

Peace, Love and Prayers to all!!

Mary Ann (aka Daisy)

I'm folding them - Aetna wins
Hi All,

Remember the country and western song by (can't remember - was it Kenny Rogers??- is this a senior or a chemo moment??) that says - "know when to fold them and when to hold them"?

Well I actually decided to go ahead with CT scan so I would have some forward movement instead of waiting endlessly for Aetna to decide my fate -(and then just found out that Aetna upheld their denial of PET anyway)

Hopefully I'll find out result of chemo soon. I'll keep you posted.

Mary Ann

california_artist

PET/CT
Daisy,
(I was responding to something you wrote earlier-I didn't realize the determination had already been made. Perhaps you could appeal)

You were asking about PET and CT scans. A PET scan uses a radioactive dye that contains sugar. Cancer just loves sugar. So, you are asked to not eat for a while prior to the PET in order to render the cancer "hungry," then when you're injected with the dye combo, the cancer cells take in the sugar and the dye. When you go thru the tube, it's the metabolic activity of the cancer cells that shows up on screen. A PET scan is in a myriad of colors in order that the degree of activity can be better measured. However, the PET does not show bodily structure, a CT does. There is a new combo PET/CT that delivers the best of both worlds, it shows the metabolic activity and the associated organ or structure. CTs show only whether or not there is a mass of some kind but will not show if it's cancer or not. The PET also shows metabolic activity in general, so the bladder, kidneys etc and any osteo activity or infection also are visible. Look for a low X-ray CT so you aren't overexposed to unnecessary rays. In fighting with the insurance company, if that was you, contact the Cancer Society and ask for their recommendations for PET/CT, you should be able to use that as evidence that the scan is a necessary and standard practice not experimental.
Much love, hope and good thoughts,
Claudia
906 864-9827
claudiaallen27@yahoo.com
Happy to hear from anyone. It was almost 70degrees in the Upper Peninsula of Michigan today, surely that's some kind of a good sign.

daisy366

california_artist said:

PET/CT
Daisy,
(I was responding to something you wrote earlier-I didn't realize the determination had already been made. Perhaps you could appeal)

You were asking about PET and CT scans. A PET scan uses a radioactive dye that contains sugar. Cancer just loves sugar. So, you are asked to not eat for a while prior to the PET in order to render the cancer "hungry," then when you're injected with the dye combo, the cancer cells take in the sugar and the dye. When you go thru the tube, it's the metabolic activity of the cancer cells that shows up on screen. A PET scan is in a myriad of colors in order that the degree of activity can be better measured. However, the PET does not show bodily structure, a CT does. There is a new combo PET/CT that delivers the best of both worlds, it shows the metabolic activity and the associated organ or structure. CTs show only whether or not there is a mass of some kind but will not show if it's cancer or not. The PET also shows metabolic activity in general, so the bladder, kidneys etc and any osteo activity or infection also are visible. Look for a low X-ray CT so you aren't overexposed to unnecessary rays. In fighting with the insurance company, if that was you, contact the Cancer Society and ask for their recommendations for PET/CT, you should be able to use that as evidence that the scan is a necessary and standard practice not experimental.
Much love, hope and good thoughts,
Claudia
906 864-9827
claudiaallen27@yahoo.com
Happy to hear from anyone. It was almost 70degrees in the Upper Peninsula of Michigan today, surely that's some kind of a good sign.

SCAN
Thanks for the information Claudia. Good idea about the Cancer Society. I will get a CT scan Tuesday, but we are pursuing the PET scan appeal still. Have a complaint in to the insurance commissioner. It is an interesting journey!!

Mary Ann (aka Daisy)

Unknown

This comment has been removed by the Moderator

bellas1965

Dr APTE?
Hello,
I am consulting with Dr Apte on Tuesday regarding the need for a complete hysterectomy and removal of ovaries due to early stage ovarian cancer. Were you satisfied with your experience with Dr Apte? I read his reviews on vitals.com and healthgrades and they are not good. However only two people reviewed him and those two may be the only two disgruntled patients. Would you please share any insight you have with reagards to Dr Apte. I love Moffitt and hope I am comfortable with Dr Apte so I can have the surgery done there. I will be having the robotic assisted procedure.
Thank you so very much!!
Rebecca

Ro10

bellas1965 said:

Dr APTE?
Hello,
I am consulting with Dr Apte on Tuesday regarding the need for a complete hysterectomy and removal of ovaries due to early stage ovarian cancer. Were you satisfied with your experience with Dr Apte? I read his reviews on vitals.com and healthgrades and they are not good. However only two people reviewed him and those two may be the only two disgruntled patients. Would you please share any insight you have with reagards to Dr Apte. I love Moffitt and hope I am comfortable with Dr Apte so I can have the surgery done there. I will be having the robotic assisted procedure.
Thank you so very much!!
Rebecca

Dr. Apte did robotic surgery on me Jan 09. The surgery was long - 6 hours, but I went home the next day. I had no problems from the surgery and the recovery period was uneventful. I started chemo 3 weeks after my surgery.

Dr. Apte is very business like and will tell you what to expect. He told me he does not give results over the phone, as misunderstanding can occur. He told me the day I was discharged after surgery that I would need further treatment. When I went for my two week check-up, He told me about the treatment plan. I was diagnosed as stage III-C UPSC.

He has made it clear along that my UPSC is not curable, but treatable. It can be treated like a chronic disease. I had the sandwich treatment with 3 Taxol/Carbo, radiation and then 3 more Taxol/Carbo. He had no problem with me going back to Illinois to finish my treatments. He sees me when I am in Florida.

I think he is very knowledgeable, but does not have the same personality as my onocologist in Illinois. She is so positive and gives you a hug when she sees you. I have appreciated having Dr. Apte's expertise. So I would say yes, that I have been satisfied with my experience.

I hope your appointment goes well and you are in the early stages. In peace and caring.

nancygt

daisy366 said:

SCAN
Thanks for the information Claudia. Good idea about the Cancer Society. I will get a CT scan Tuesday, but we are pursuing the PET scan appeal still. Have a complaint in to the insurance commissioner. It is an interesting journey!!

Mary Ann (aka Daisy)

National Oncologic PET Registry
Daisy,
you may want to check recent post on this NOPRas they handle exceptions for Medicare and are sponsored by most of the radiolocig cancer societies. I was disappopinted in the ACS book that says "not routinely ordered and their role in endometrail cancer is still being studied". If they do not start studying USPC separately,nothing will change with regular enometrail having much higher survival rates (if you want to see my rant on that topic, I posted under the topic about reading ovarian data and research earlier this week).
Just a couple of quick points, my first insurer required that we do the CT scan and then they would reconsider. Fortunately (or unfortunately), the tumor was large enough to show up on the CT and the PET scan confirmed that tumor and showed a few smaller ones.So hopefully you are just being delayed.
My recent recurrence led to PET scan in Nov. and when we needed another one in January as baseline for chemotherapy, the insurer did have one of their consulting docs call my oncologost to discuss even though my insurance does not require prior approval for scans (pretty rare according to my radiology facility). he backed them off by telling them that what I hasd was essentially Stage 4 Ovarian and check their guideline for that.
I have to go on medicare as primary in July so I know I will have to go thought the exception process for the NOPR then (only good news is my secondary insurance has an annual out of pcoket maximum that I will hit based on 3 PET scans assuming the Medciare cost is similar to what United healthcare pays now which is just under $6000 for a PET).