NED and Scan frequency?

[OceanBreeze3]

If you are NED - how long apart is Dr or insurance recommending scans? Still every 3 months, or 6 months, 1 year? Just trying to figure out when they don't become "medically necessary"? Thank you!

[Wintervt]

Hi Oceanbreeze3,

When I first started treatment I had a great response. I had bone scans every 6 months, visited my oncologist every 3 months and had blood work monthly. Every situation is different, so I think it would be a good conversation to have with your oncologist. Wishing you all the best!

🌈Jade

[blms]

I chose my scan schedule during That time of NED abut every 6 months

[Cowgirl1951]

Bone scans did not detect my cancer. My onc said insurance would pay for 2 areas at each MRI visit. She would rotate between chest, abdomen and pelvic every 3 months. In Sept 2020 had a Petscan found mets in sternum and T5. Had radiation. So far I have had a Petscan in Dec 2020 with another schedule the end of March

[Barbteeth]

Hi thereLadies with MBC are never totally NED because we are stage 4 and incurable so I personally would want scans every 3 months or I would worry that something was happening and it wasn’t being picked up

My opinion

Barb xx

[OceanBreeze3 in reply to Barbteeth]

Agree. However, insurance companies don't see it that way. Mine (BCBS) just refused to cover any future scans, saying "its not medically necessary" unless you have symptoms or progression they wont cover it. Seems extremely ridiculous to me considering its MBC and the federal government will give you 100% disability.

[diamags in reply to OceanBreeze3]

That is odd. Are you diagnosed as Stage IV? Metastatic? I've been without progression for many years and get scans every 4 months. Insurance has never questioned it.

[OceanBreeze3 in reply to diamags]

Yes, Stage IV, MBC....talked to my Dr today and he is writing a letter to my insurance. As he said to me " someone in a cubicle that doesn't know anything about MBC is checking off the "not medically necessary" box." He's is confident that once he updates insurance etc that future scan's will not be a problem. I've never had an issue with BCBS before this.

[diamags in reply to OceanBreeze3]

I think your onc is right!

[Andibo in reply to OceanBreeze3]

I like your oncologist. THese insurance companies need an education in MBC.

[Barbteeth]

It is ridiculous...I’m on BUPA in UK and I’ve never been refused treatment apart from genome test so I paid myself Barb xx

[USIrishcolleen]

Hello OceanBreeze3,

I just finished hormone therapy, a lumpectomy/lymph node biopsy and radiation. Currently I am “tumor free.” My radiology oncologist said that my medical oncologist would determine how often scans should be. I see him next week. Congratulations on the NED!

Best,

Colleen

[Beryl71]

I have mine every six months anyway, and last year not til eight months after diagnosis. My levels are decreasing but not NED yet! Forever hopeful. Carolyn x

[OceanBreeze3 in reply to Beryl71]

🙏

[hurricaneheather]

for this body, scans have been NEAD and stable since March 2016. PET/CT scan was switched to every 8 months and blood work, with tumor markers, every 4 months, a couple of years ago. i am comfortable with the choice, as i have a respectful relationship with the onc; if i feel a need for blood work or a scan sooner, she would pursue. fortunately, no challenges with insurance for the scan transition from 3 months to 6 months to 8 months.

[hopenowandtomorrow in reply to hurricaneheather]

Hi Hctrojan: I have been NED since 11/20/19and I get PET/CT scans every 5-6 months. I would love to have blood tests only once every 3-4 months BUT I am on IBrance which requires monthly blood tests to determine blood counts. Are you on IBrance? If so, how are you able to skip the monthly blood tests?

Thank you!

🙏❤️🙏

[hurricaneheather in reply to hopenowandtomorrow]

i have been taking Ibrance since Aug 2015. the dose was lowered to 75mg in Dec 2015. a few years ago, the oncologist expressed monthly blood tests were not required due the length of time on Ibrance; monthly was necessary in 'the beginning' to determine how the body responded.

[viennagirl]

Even though my scans are showing no evidence of disease (NED) my oncologist still requires me to continue taking Ibrance and Letrozole. I take 100 mg and stay on my 21 days on - 7 days off schedule. But I now don't have to have another scan for 6 months. I don't know what happens if I continue to do well. Maybe I can go off the drugs. I just don't know about that but I do believe I will continue to be well.

I feel good - sometimes I get tired easily because at the end of the 21 days my blood count is quite low. But after about 3 days of rest I recover and feel good again. I will continue with all the things that I do quite regularly. I believe my belief in the healing power of the body is what is helping me get well. I know many wonderful ladies have died of mbc in the past but we now know so much more about health and how to heal ourselves. Our immune systems play such a big role. Drugs are helpful but we can add to the effect of the drugs by doing so many more health promoting things. We need to support the drugs but not just rely on the drugs. I feel like I am in partnership with the drugs. And I believe that science is going to help us too.

I have just started doing something new. I also think it is good. I learned about the healing power of cold showers from Wim Hof. So now I have a cold shower in the morning after my warm shower. It is invigorating. Not easy to do to begin with but I am getting used to it and feel so good after that I will continue this practice. Hugs M.

[Merma]

Hi,I’ve had two recurrences and now I’m on Ibrance and anastrazole. If I didn’t have scans every six months, they wouldn’t have found the recurrences. Therefore, even though I have NED, I still get scans every 6 months and insurance covers it.