New PET Imaging Tool for MBC Patients - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

4,622 members5,579 posts

New PET Imaging Tool for MBC Patients

hopenowandtomorrow profile image

Hi fellow MBC’ers: On May 20, 2020, a new radiopharmaceutical agent was approved by the US Food and Drug Administration (FDA) for use with PET imaging: Fluoroestradiol F 18 (FES). Known in the US as Cerianna™, the radiopharmaceutical is an estrogen analog (16α-[18F]-fluoro-17β-estradiol) and the first F-18 PET imaging agent to be indicated for the detection of estrogen receptor (ER)-positive lesions as an adjunct to biopsy in patients with recurrent or metastatic breast cancer (MBC).1,2

The scan will show all ER+ cancer cells in your body to help with better treatment options. Interesting article.

siemens-healthineers.com/en...

Always hope 🙏❤️🙏

28 Replies

That's good info, thank you for posting! God bless you and heal us all in Jesus name, amen! <3

That's wonderful news for those fellow MBC patients that first of all qualify for a PET from an insurance point of view and live close to a center that can facilitate this new delivery. It will take awhile I presume before this is done main stream. I don't get PET scans but I have so much mets that I would light up like a 🎄 if they did this procedure to me. Lots of positivity for MBC in the future.

Sandra

Pbsoup profile image
Pbsoup in reply to girlsptz

The disparities in health care are so frustrating. What is the point of all the R&D if most people don't then have access?

girlsptz profile image
girlsptz in reply to Pbsoup

Yes I agree. As a Canadian I read about new or coming technologies and drugs all the time but I know they won't be available to me anytime soon.....we tend to be at least 3-5 years behind. Funny but not funny.....when I click on this link it has an option to click if you are from Canada and of course there is no mention of this technology at all. Sad but made me laugh.

Sandra

Pbsoup profile image
Pbsoup in reply to girlsptz

Well, if it makes you feel better, when we first relocated to SF bay area from NYC, with, I may add, gold standard health insurance, I could not for the life of me find a doctor who took both new patients AND insurance. And this was when I had all the symptoms of MBC.

UCSF, one of the leading cancer centers, told me flat out that they "don't take new survivorship patients..." (this was pre-diagnosis) It is a long, boring, story of how I FINALLY got diagnosed with MBC, but suffice to say it involved several doctors, multiple wrong turns and in the end someone who is on the board of my husband's non profit who is also on the board of UCSF to get me in the back door there. WTF! I got lucky, but it shouldn't take knowing someone who knows someone to get diagnosed with a serious disease!

Now my husband has symptoms that are probably not serious like mine, but still need attention and he is in the same situation... a full time job to find a doctor. One who came highly recommended told him he only took new patients who pay a $2000 a month concierge fee. "Offices in my neighborhood are expensive,' he explained, as if that made sense. Needless to say, my husband is still looking ....

Wish I was making this up. I'm not.

girlsptz profile image
girlsptz in reply to Pbsoup

Wow. Crazy stuff certainly. My GP I recently found out from my oncologist dropped me as her patient. Apparently she moved and now set up a micro clinic with has no staff to cut costs. When my oncologist tried to send her a courtesy report of how things are going with me she got a call that she had dropped me because she wasn't taking on complicated patients. Well I saw her once in 18 months to get my blood pressure pills so I guess that makes me complicated.....makes no sense and she didn't bother to contact me either. I asked my oncologist if she would just take over ordering things outside of oncology and she has kindly agreed. I couldn't be bothered to waste my time looking for another GP.

Hope your hubby finds someone soon to take him on as a patient.

Sandra

TammyCross profile image
TammyCross in reply to girlsptz

Sandra, I didn't know you had a million mets. I have a pretty good gp -- but she was young and new when I started with her, one of her first patients, and I insisted on being tested for cancer for 3 months while she refused. She thought losing 15 pounds in a couple of weeks was fine. It wasn't until I couldn't walk from my bed to the bathroom that she reluctantly order an xray. Now, 3 years later, she has 750 patients, and barely has time for me. Instead, a rheumatologist I had for an auto-immune disease that I had before cancer acts like my primary. I guess it doesn't matter who it is as long as that doc pays attention. He looks at all my tests, orders others and orders my primary doc to order others, explains my scans to me because my oncologist doesn't do that well, and gets me early appointments with specialists as needed, intervenes. So I see my primary doc once a year, and the rheumatologist every 3 months, and more often if he is worried about something. He calls, his receptionist calls, and they respond to the whole person.

My conclusion from this experience is that it doesn't matter who functions as your gp as long as they care. If it is your oncologist, fine.

Pbsoup profile image
Pbsoup in reply to TammyCross

It is nuts. I had similar difficulty being diagnosed--although I now have great care. Self advocacy is key. Glad you feel you have someone on your team!!

Pbsoup profile image
Pbsoup in reply to girlsptz

That's crazy about your GP. Does complicated equate to "badass and smart?" if so, then take it and run!! :-)

girlsptz profile image
girlsptz in reply to Pbsoup

That's funny....because my oncologist said something similar as she was so mad that I had not been contacted. At least with my oncologist handling everything...and truthfully I mostly tell them what I want anyway😜 ....my oncologist is a smart cookie so I am happy that she is willing to take over my total care.

Sandra

TammyCross profile image
TammyCross in reply to Pbsoup

That is a horrible story. Health care may be good but if you can't access it....I think this kind of thing happens in smaller cities with a high-income privileged class. My sister-in-law was a federal government employee in DC, had great insurance (not the excellent one that members of congress get), but could not find a doctor that takes new patients except for concierge. All taken up. Had to range far afield in Maryland.

Pbsoup profile image
Pbsoup in reply to TammyCross

i wonder if the concierge thing should be illegal. When I lived in NYC it took forever to find a pediatrician that took insurance...

Dragonfly2 profile image
Dragonfly2 in reply to Pbsoup

I know and understand this same frustration…as all other things, you get what you can pay for and it’s certainly the same with healthcare. I’ve paid thousands and thousands of dollars into the insurance companies throughout my life, but now I have to wait to be OKd by them for a procedure or treatment. Ugh, R&D is for the rich…but eventually it may trickle down to our grandchildren.

Pbsoup profile image
Pbsoup in reply to Dragonfly2

This sort of inequality is going to bite us all in the rear. I see it in healthcare, in education (don’t get me started on college admissions), in so many things. The trouble is it’s all so politicized and polarized that we often don't come together to address what is the common good in constructive ways.

Of course there are a lot of good people who do care and who are trying to make a difference. Let’s hope they prevail.

In the meantime off the billionaires go to space! 🙄

Phew I woke up on a rant. BREATHE P BREATH 😂😱😂

TammyCross profile image
TammyCross in reply to Pbsoup

Great rant.

I had that test! Just a few days ago. I had a PET-CT scheduled, and was surprised that I didn't have to fast. When I got there, they explained it was a new radio isotope just for ER+ breast cancer. They said it was JUST approved by the FDA. You say it was approved a year ago. Hmmph. I have had 3 or 4 scans in that time, and am supposedly at one of the best cancer centers in the US. They just got around to it?

Hi Tammy: Which cancer center do you receive your treatment?

Thank you!

❤️🙏❤️

Columbia Presbyterian

That's a really great article. Thank you for sharing. My only concern would be the need to wash out all the estrogen blocking drugs in my body (Fulvestrant, Arimidex) before the exam. As those are keeping me alive, I wouldn't want to stop them.

girlsptz profile image
girlsptz in reply to diamags

Interesting thought and very good point. Agree that I would not be keen on removing the drugs from my systemic system either as you say they are keeping us alive. The test isn't available to me so I don't have to investigate farther.

Sandra

diamags profile image
diamags in reply to girlsptz

Yes, I was thinking that if you were newly diagnosed, it would be good. But I have a problem of getting my drugs out of me!

This sounds very promising. I have been having PET scans with the regular glucose injection and this sounds like it would be more accurate in detecting cancer cells. It will be interesting to find out how long before the test a patient would need to flush out the estrogen blocking drugs as that would be a concern. Looking forward to more information on this! Thanks for sharing.

I didn't have to flush when I had it last week. I am on an oral SERD. That is an estrogen receptor block. (Results tomorrow. Hope I am not overly optimistic. Now I wonder if it will be accurate.) It's not possible my oncologist doesn't know about this flush.

Hi Tammy: What is the name of your oral SERD? I was under the impression that the only FDA approved SERD is Faslodex shots. I know of many oral SERDS currently in clinical trials.

Thank you for sharing! ❤️🙏❤️

Correct. Not FDA approved. I am in a clinical trial.

Greetings Sister/warrior. "Each one teach one." Thank you for sharing this important information. Every advance in fighting this disease will help to save so many lives. GOD bless you sister/warrior. and over-comer😇

So I got my first scan result using this new radiopharm. Funny, it seems more succinct. I guess because it is more specific. Now I am trying to find where I posted that I was getting my first scan after switching to an oral SERD in a clinical trial. Just got results back.

Tammy: How were your results? Praying you have improvement!

🙏❤️🙏

You may also like...