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Topic: FES PET scan for lobular

Forum: Stage IV/Metastatic Breast Cancer, Open to All To Contribute —

Topics here are started by members with a Stage IV/Metastatic Breast Cancer diagnosis, but open to all members to contribute to discussions. Please note that there is a separate forum, Stage IV/Metastatic Breast Cancer ONLY, where topics are open only to those members.

Posted on: Jun 16, 2021 10:58AM

KBL wrote:

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.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)
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Jun 16, 2021 11:10AM ShetlandPony wrote:

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?

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Jun 16, 2021 11:20AM - edited Jun 16, 2021 11:28AM by 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.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)
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Jun 16, 2021 11:54AM Olma61 wrote:

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

10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/30/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/30/2019 External: Bone
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Jun 16, 2021 01:10PM candy-678 wrote:

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. ????

Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo for the Stage II, then found Stage 4 and switched to hormone therapy/targeted therapy. I consider myself de novo. Xgeva use for bone mets. Liver bx Apr 2021 shows ER- now. Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 7/11/2017 Lymph node removal: Sentinel; Mastectomy: Left Chemotherapy 7/31/2017 AC Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Hormonal Therapy 11/1/2017 Femara (letrozole), Zoladex (goserelin) Targeted Therapy 11/1/2017 Ibrance (palbociclib) Dx 4/2021, ILC/IDC, Stage IV, metastasized to bone/liver, ER-/PR+, HER2- (FISH) Targeted Therapy 9/3/2021 Lynparza Hormonal Therapy 9/4/2021 Zoladex (goserelin)
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Jun 16, 2021 04:51PM Snow-drop wrote:

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 ❤️

De Novo stage IV Dx 9/2019, IDC, Left, 4cm, Stage IV, metastasized to bone/other, Grade 2, ER+/PR+, HER2- (IHC) Hormonal Therapy Zoladex (goserelin) Hormonal Therapy Femara (letrozole) Radiation Therapy External: Bone Targeted Therapy Ibrance (palbociclib)
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Jun 16, 2021 05:13PM - edited Jun 16, 2021 05:35PM by 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.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)
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Jun 16, 2021 05:35PM - edited Jun 16, 2021 05:43PM by 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!

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Jun 16, 2021 05:48PM KBL wrote:

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.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)
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Jun 16, 2021 06:21PM - edited Jun 16, 2021 06:24PM by 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.)

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Jun 16, 2021 08:28PM Olma61 wrote:

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

10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/30/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/30/2019 External: Bone
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Jun 16, 2021 10:41PM aprilgirl1 wrote:

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.

recurrence in lymph nodes (superclavicle/mediastinal)"You can do it like it's a great weight on you, or you can do it like it's part of the dance." Ram Dass Dx 11/7/2008, IDC, Left, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 11/13/2019, IDC, Left, Stage IV, metastasized to other, ER+/PR+, HER2- Surgery Lumpectomy: Left Hormonal Therapy Femara (letrozole) Chemotherapy CMF Radiation Therapy Whole-breast: Breast Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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Jun 17, 2021 01:56AM KBL wrote:

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.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)
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Jun 17, 2021 06:28AM candy-678 wrote:

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.

Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo for the Stage II, then found Stage 4 and switched to hormone therapy/targeted therapy. I consider myself de novo. Xgeva use for bone mets. Liver bx Apr 2021 shows ER- now. Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 7/11/2017 Lymph node removal: Sentinel; Mastectomy: Left Chemotherapy 7/31/2017 AC Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Hormonal Therapy 11/1/2017 Femara (letrozole), Zoladex (goserelin) Targeted Therapy 11/1/2017 Ibrance (palbociclib) Dx 4/2021, ILC/IDC, Stage IV, metastasized to bone/liver, ER-/PR+, HER2- (FISH) Targeted Therapy 9/3/2021 Lynparza Hormonal Therapy 9/4/2021 Zoladex (goserelin)
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Jun 17, 2021 06:39AM SeeQ wrote:

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.

Diagnosed de novo Stage IV; numerous liver mets; single small breast tumor identified 4 weeks later Dx 6/2/2020, IDC, 6cm+, Stage IV, metastasized to liver, ER+/PR+, HER2- (IHC) Hormonal Therapy 7/3/2020 Arimidex (anastrozole) Targeted Therapy 7/10/2020 Verzenio
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Jun 17, 2021 09:13AM KBL wrote:

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.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)
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Jun 18, 2021 12:47PM prairiesea wrote:

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!

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Jun 18, 2021 01:04PM KBL wrote:

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.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)
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Jun 19, 2021 10:54AM GlobalGal wrote:

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

De novo stage IV metastatic breast cancer with metastases to 3 central lymph nodes in neck following complete thyroidectomy for papillary thyroid cancer WITH NO PRIMARY BREAST CANCER IDENTIFIED and NO OTHER METS (so far) Dx 3/20/2019, Stage IV, metastasized to other, ER+/PR+ Hormonal Therapy 6/4/2019
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Jun 19, 2021 02:45PM KBL wrote:

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.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)
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Jun 21, 2021 10:51PM KBL wrote:

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.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)
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Jun 21, 2021 11:03PM ShetlandPony wrote:

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.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Jun 21, 2021 11:11PM KBL wrote:

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.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)
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Jun 22, 2021 09:48AM 2019whatayear wrote:

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

5/6/2019 IDC 2cm, micromet 1/9 nodes, BRCA2+, ER+, PR+, HER- BMX 6/2019, A/C & Taxol 2019, Radiation, BSO - preventative 2/2020, Letrozole 3/1/2020, Started Lynparza for 1 year preventative on 7/18/2021
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Jun 22, 2021 10:10AM KBL wrote:

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

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)
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Jun 28, 2021 03:37PM - edited Jun 28, 2021 03:39PM by 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.

Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo for the Stage II, then found Stage 4 and switched to hormone therapy/targeted therapy. I consider myself de novo. Xgeva use for bone mets. Liver bx Apr 2021 shows ER- now. Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 7/11/2017 Lymph node removal: Sentinel; Mastectomy: Left Chemotherapy 7/31/2017 AC Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Hormonal Therapy 11/1/2017 Femara (letrozole), Zoladex (goserelin) Targeted Therapy 11/1/2017 Ibrance (palbociclib) Dx 4/2021, ILC/IDC, Stage IV, metastasized to bone/liver, ER-/PR+, HER2- (FISH) Targeted Therapy 9/3/2021 Lynparza Hormonal Therapy 9/4/2021 Zoladex (goserelin)
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Jun 28, 2021 03:51PM KBL wrote:

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

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)
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Jun 30, 2021 11:58AM LillyIsHere wrote:

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.

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/30/2019 Femara (letrozole) Targeted Therapy
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Jun 30, 2021 12:22PM KBL wrote:

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.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)
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Jun 30, 2021 01:06PM LillyIsHere wrote:

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.

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/30/2019 Femara (letrozole) Targeted Therapy
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Jun 30, 2021 03:35PM KBL wrote:

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

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)

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