How do you advocate for yourself when... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

6,809 members8,426 posts

How do you advocate for yourself when your pet scan is deemed “medically unnecessary!?

lynzer profile image
18 Replies

I haven’t been able to get one in 2 years. Can they do that?

Written by
lynzer profile image
lynzer
To view profiles and participate in discussions please or .
18 Replies

I don't get PET scans, only CT scans every 3 months. Are you worried about new cancer activity?

JustmeMary profile image
JustmeMary

I also only get CT and bone scans every three months. My oncologist says PET scans are expensive and difficult to get approved by insurance. CT and bones scans are just as good (in his opinion).

Beryl71 profile image
Beryl71 in reply toJustmeMary

I get CT scans every six months, have had two bone scans but this time they deem it unnecessary. I'm happy to go with their recommendations.

My insurance won’t cover PET scans. My oncologist says she gets the same information from the bone scan and CT scan which I have every 3-4 months.

Totheriver profile image
Totheriver

I can’t get pet scans either. Just ct and bone scans every 3-4 months.

Lakelifenh profile image
Lakelifenh

I’ve had one pet scan at diagnosis five and a half years ago.

Iwasborntodothis profile image
Iwasborntodothis

My oncologist can only order them if labs and symptoms warrant it and then only after a peer review. I’ve had 3 in two years. It stinks because my sister in 2011 had one immediately and after every major treatment milestone. It has to be insurance driven. We were charged $3000 for mine in January this year because I hadn’t met my deductible yet - well I have now! 🤪

lynzer profile image
lynzer in reply toIwasborntodothis

Wow….didn’t know. I feel like if I have insurance, I should be able to get one once a year!

Iwasborntodothis profile image
Iwasborntodothis in reply tolynzer

You can force it but you will have to pay for most of the cost

love2golfwell profile image
love2golfwell

Are you able to get other types of scans? It would seem if you are undergoing some type of treatment that scans would be important to see if there is any progression. I know that PET scans are not always approved by insurance because of the expense, but I would think it should approve a CT or bone scan. When initially diagnosed I had a CT and bone scan, now I have just had 2 PET scans, 3 months apart. Although I am on Medicare and also have a good supplement insurance I am sure that eventually PET scans won't be covered and I will have to go back to CT's and bone scans.

SusieIM profile image
SusieIM

It stinks but it is a insurance issue, still you should be able to have some kind of test done, to see if there is progression.

lynzer profile image
lynzer in reply toSusieIM

I’m getting a CT and a bine wcan. Cancer spread to bone and liver.

cpidacks profile image
cpidacks

I had a PET scan at initial diagnosis two and a half years ago. I have an MRI every three to four months. I was also told by my oncologist that it is hard to get approval from the insurance companies.

queeneee profile image
queeneee

I also only get CT scans every 3 months.. I asked about PET scan and was told that for liver mets it CT gives the best results.. also PET has more radiation involved.. so I am keen to avoid them!

Goldenhair profile image
Goldenhair

Hi Lynzer, Here you are deemed not to have a scan and I'm trying to not get scans. I had Pet Scans every 3 months. The last 2 scans showed no growth but Cyberknife (radiation treatment center) wants me to get another scan. I don't want them taking so many scans as each scan is like having 37 x-rays (give or take scans depending on what the technicians are focused on) at once, which can give you another cancer. I'm not a doctor. I went to basic medical school and received a certificate, worked in emergency at Swedish Hospital and later, furthered knowledge with electrolysis and reverse electrolysis to opened my own business. School is when I learned about the over abundances of x-rays at one sitting (laying down actually) and that it can lead to cancer. I was first diagnosed with breast cancer in 2004 and treatments for 4 more years. In 2019 I was diagnosed with bone cancer. I was surprised that the medical field hadn't advanced further than they are. Even so, I'm very leary of perpetual scans. If my next scan shows not growths then I'd suggest one scan a year for me. After all, it's my body. You have the initial say as to what others advise you to do with it. However, if it is insurance that is putting a stop to your scans and you want them, I would change insurance companies. I have a health advisor who's job it is to keep on top of what insurance companies advise. I tell him what I have and if he thinks I'd have better coverage elsewhere he'll switch me to that company. I wish you the best! -Goldenhair

lynzer profile image
lynzer in reply toGoldenhair

Hmmmm thanks for the info

8576 profile image
8576

The way I advocate for myself is to get a second opinion. Good luck.

Cheers, June S.

michelangelina profile image
michelangelina

My insurance also stopped approving PET scans once I was stable. Now I get bone scans and CT scans, which seems to be fine in terms of monitoring.

Not what you're looking for?

You may also like...

Moderation team

See all
Jslanovich profile image
JslanovichAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.