FES PET scan for lobular

KBL

Hello, everyone! I wanted to come and make a separate post about my experience.

I applied to be in a clinical trial for the new FES PET scan for lobular. As a lot of people know, my disease is extremely hard to see on imaging, and I’m really hoping this works for me. I am at the clinical trial now and have finished up the testing.

Day 1 was an optional FDG PET scan that I said yes to so they can see that it doesn’t show anything with that tracer.

Day 2 was the FES tracer.

Now I wait to see how that went. I am hoping beyond hope that this tracer is the answer for me so we can monitor my disease properly.

It’s just hell not knowing if I’m progressing or not.

The FES isn’t widely available, which is why I chose a trial. If it does help me, I will find where it is available and ask to be monitored that way.

I will come back once I learn how my body did with this new tracer. I can use all good thoughts that it will finally give me the peace of knowing imaging can work for me.

ShetlandPony

KBL, I am eagerly awaiting the results of your scans. It is so hard on you, not knowing. I would have done what you did, get both scans to compare. 🤞 Is there any more to do for the trial, or is that it?

KBL

Hi, Shetland!

Thank you. At this point, I think they may monitor me for two years. That's what's supposed to happen, but I'm not sure. I know I'm only allowed to get the scan the one time. The trial was 2,300 mikes from home.

Anonymous

wow that’s a long way to travel but hopefully it will be very worth it for you! So glad you are getting to participate, sending all good thoughts your way

candy-678

Good luck KBL.

I thought the FES PET was to visualize the uptake of estrogen. Am I right?

I wanted to ask my MO at my next appt if our cancer center had access to FES PET due to my liver biopsy showing flip from ER+ to ER-. I was wondering if some of the liver lesions, or bone lesions, could still be ER+ and fed by estrogen or if ALL of the sites are ER- now.

Am I thinking wrong that the FES PET could show if hormonals would still work for me, or if they would not- if my lesions are not taking up estrogen anymore.

KBL-- You said you are looking for a facility that does FES PET to use for your monitoring, but then you said that you can only have this scan done once. ????

Snow-drop

Best wishes, KBL, you’ve been in my thoughts. I am glad you made it there. Hopefully the trial and fes pet is able to answer all unknown questions. Big hug ❤️

KBL

IT WORKED!!!! The preliminary report sees the cancer in my stomach. First imaging that shows it. There is none showing in my other organs. Woot. It's seen in all of my bones and even in multiple lymph nodes on my right side, which have never shown on other imaging. No cancer showing in my breast, so I'm still occult.

Candy, this scan is for ER+. I don't think it works for ER-, but please ask. I can only have one scan from this clinical trial. The tracer has been approved by the FDA, so some places are offering it already but not where I live. I'm going to find out where I can keep getting monitored this way.

The FDG PET showed nothing. I helped them and they helped me. I will do anything for these people that they need because I finally have something that works for me to monitor progression.

I am flying back home tomorrow one exhausted pup.

Thank you for all of your good wishes and hugs.

ShetlandPony

Ah! Wow, what news! You have an imaging mode that will work to monitor your treatment. Will they give you your discs and reports even though it is a trial? I bet they will help you find out where you can go to access this, and maybe justify it to insurance as well. I remember talking to Dr. Ulaner at the first ILC symposium, and he later answered a question I sent him. He seems like a great guy.

I'm sure the trial folks are pretty glad not only for you but for the good results you've given them!

KBL

Hi, Shetland. I will definitely get a report. I haven’t asked about a disc yet. I will, though. Dr. Ulaner is who I saw in a video first when I was researching. I’m so appreciative that people are trying to help us with the imaging aspect. This will mean I don’t need future biopsies on my stomach because this scan can monitor.

ShetlandPony

Hallelujah!

(I left out of my previous post that I mentioned Dr. Ulaner because when I met him in 2016 (?) he was talking about this new thing they were working on, FES PET scans, and nobody knew when it might become available.)

Anonymous

Oh, such good news, so happy for you! This brings much peace of mind, I’m sure and enables more effective treatment. Celebratory hugs!!

Anonymous

KBL - I am so happy for you and give you huge kudos for finding the trial and traveling to it. I know you have researched and advocated all along and I can imagine how scary and frustrating it was to have disease that was not detected by regular scans . I am also thankful for doctors like this Dr. Ulaner that continue to work towards improving our care and extending our lives.

KBL

Thank you, Shetland, Olma61, and Aprilgirl1. It does give me peace. I think back about if I had been diagnosed in 2013 when it all started. I would not have had Ibrance. And now the FES PET has come along to also help us ER+ girls and guys in my situation.

I did this not only for me. I have a sister and daughter. God forbid they ever get this disease, I don’t want them to have to go through the nightmare that is imaging if they don’t work. No guarantees about the FES PET for everyone, but I so hope it helps others in my situation.

I appreciate you all. Only you truly understand the frustration.

candy-678

KBL--- I am happy you have finally found an imaging avenue for you. I hope you can continue this for monitoring your mets. Hopefully you can find a place relatively close to your home to continue these PET's.

I am going to ask my MO about IF they have access to FES PET at my center, and what she thinks about it for me. My thought was, if 1 liver met is ER- (the 1 we biopsied), but the others in the liver are still ER+, and my bone mets are ER+ too, then I have not went totally to ER- and I can still use hormonals. Maybe I am wrong in my thinking.

SeeQ

KBL - Yaaaay! I'm so glad for you that there is finally a scan that shows your cancer. And, I am so thankful to you that you traveled so far - not just for yourself, but for the advancement of treatment. Your two back-to-back scans are irrefutable evidence for you, your doctors, and your insurance company (can't leave them out :-/ ). I hope it's not too long before they bring that to our party of the country.

Did I understand this correctly? You can only get one scan 'in the trial', they'll follow up on you for a few years, and you could get another FES scan 'somewhere else' if it became available.

KBL

Candy, I would definitely ask. I think if you have ER+ anywhere, which I remember you do, it’s worth it to have the scan.

SeeQ, thank you. You are exactly right. One scan for trial and they follow me.

prairiesea

KBL: This is wonderful news, so happy that the scan worked. I hope you can find a facility at a reasonable distance that does it!

KBL

Thank you, prairiesea. I agree, although I’m so happy I went to Utah. It was a wonderful group, and I had a great experience, albeit very tiring.

GlobalGal

Dear KBL,

Thanks so much for educating all of us about the FES PET scan for lobular breast cancer!

As I have posted elsewhere, my breast cancer is occult (no evidence in breasts with mammograms, ultrasounds, MRIs, biopsies, and 4 FDG PET scans), but found in my neck's 3 central lymph nodes following a thyroidectomy for papillary thyroid cancer.

There wasn't much surgical tissue to analyze...enough to establish that it was breast cancer,"possibly lobular", they speculated, but not quite enough to determine HER2 status (my oncologist is assuming triple positive).

Although clear so far, I suspect the regular FGD PET scans aren't giving a complete picture of what's happening inside my body.

Best wishes,

GlobalGal

KBL

GlobalGal, thank you. Our stories are quite similar, although I do know I’m Her2-

Unfortunately, this scan doesn’t work with Her2+. I had to have a biopsy within 12 weeks of going, which I did with my fourth endoscopy.

If you research Dr. Ulaner, he says if you do an FDG PET scan and it doesn’t show the lobular cancer, it probably never will. As I stated, I let them do an FDG to show it doesn’t show. That was my fifth one with absolutely nothing showing.

I’m sorry you’re also having issues with scanning. It truly sucks, and I felt like I wasn’t going to stop until there was something that worked to show my stomach mets.

KBL

I got the final report yesterday. I learned something new. This scan is not good to find mets in the liver or small bowel or places like the omentum. Sadly, those are some places I was hoping to get the all clear and thought since they weren’t mentioned, that’s what it meant. I feel like I’m sort of back to square one because it only tells me where I already know the cancer is.

The other thing is I did an FDG PET for comparison. This kind of PET has never shown anything. This time they said they do see bone marrow involvement that did not show in a March 2020 PET scan. They said it’s new since then. More confusion. Is it progression or something that was there but wasn’t seen? I keep going down these rabbit holes.

I am going to have to let having to know go. I am going to have to accept that this cancer is truly sneaky and is not going to reveal itself easily.

I’m still glad I went. If it can help someone else, it will have been worth it.

For me, I think the only thing I can do is continue to have the MRIs of my spine and hope I have a good radiologist who can see if there’s progression. I’m covered from head to toe in bone and bone marrow metastasis, so I don’t know how it’s going to work.

ShetlandPony

Ugh. You are taking this really well.

Regarding the bone marrow involvement not seen on the March 2020 FDG PET, did the radiologist who recognized it on the recent FDG PET look at the March 2020 images also and not see it, or is it just the case that whoever read it back then did not see it? I'm wondering about having the recent radiologist give you regular second opinions on future FDG PET scans and other scans. I figure the radiologists involved in this study are probably exceptionally good at reading scans for ILC, and it could be useful for you to have one of them look over all your scans of whatever kind.

KBL

Hi, Shetland. Thank you. I think after dealing with this shit show for eight years, it’s just another setback on my journey to find it before it spreads where I get the symptoms.

This was for a clinical trial, so I don’t think he’d be able to give me second opinions, but I may ask him if he knows someone who I can hire to do this. I do have a connection now at the place I get the scans who realizes my situation, so I may contact him and ask him how I can go about having him look at each scan after I get it read.

The clinical trial radiologist did look at my March scan. When I went, I brought a stack of discs with me, and they took what they wanted and put it into their system.

I am having a lumbar/pelvis MRI July 16 for a progression search. I have them every six months. I will be seeing if I can get a second pair of eyes on them. I may also ask the radiologist I have contact with to look at the last two I’ve had. The last one said it was stable.

2019whatayear

Thanks for participating in this trial and sharing how it went and your results KBL!

KBL

I sure do hope it can help others. Thankyou, 2019whatayear.

candy-678

Update from me---

FES PET would not be good for my situation per my MO because with the liver mets it is not good imaging for the liver. And she said if the bone mets are not active then it would not show if estrogen is a factor there either.

KBL

Thank you for the update, Candy. I’m sorry it won’t work for you.

LillyIsHere

KBL, did you have a chance to watch The International ILC Virtual Symposium, questions for patients today, a couple of hours ago? They mentioned ILC patients where any scanning didn't work. What I understood was in several cases, the cancer cells didn't take the sugar injected and this caused the cancer cells not to show up on the scan. Dr. Ulaner said that we ILC patients can have cancer metastasised to other parts of the body and none of the scans will catch it.

KBL

Hi, LillyIsHere. Yes, I watched. I came on as Dr. Ulaner started speaking. Missed Dr. Jankowitz. I’ll have to watch her piece when they post it.

That is exactly my problem. CTs and FDG PETdon’t pick up my cancer. That’s why I wanted to see if FES would. It did pick up the cancer in all the places I knew I had it. I was a little disappointed to hear if it doesn’t show up, that may not mean it’s gone but that the ER meds may not be a good fit, but it did pick it up for me, so it should be working.

Here is the other thing. I still have extensive disease all over, in my bone marrow, bone, and stomach from my skull all the way to my femurs. I have never been NED or even close. I don’t know if Ibrance and Letrozole are even helping or if my cancer is just so slow growing it’s been stable on its own.

I’m having another lumbar MRI on July 16th to see if the cancer in my lumbar and pelvis are still stable. The one from August 2020 to the one January 2021 showed stable, so no worse than they were, but there’s a lot.

Thank you for thinking of me. That’s very sweet.

LillyIsHere

KBL, I thought of you, us all who are ILC club members. Considering that ILC keeps changing while it metastasizes, I wonder if it shows up one day and new mutations don't show up on future scans. My MO told me if a little or a lot of metastasis, it will be the same treatment and that's why he is not in a rush to scan any ache and pain I have. I guess the volume of cancer cells doesn't matter on treatment recommendations.

Good luck on July 16. Let us know how it goes.

Hugs.

KBL

Thank you, LillyIsHere. True, whether a lot or a little. I’m just not sure if I’ve progressed. That’s why I would need a medication change. Next line will probably be Xeloda, but I’m in no rush if Ibrance and Letrozole are working