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Unfortunately it appears I am back.

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Made it almost five years. I was concerned about slowly rising TM so had a CT last summer. I did see something on some of the vertebrae when they showed me the scan but was told it was just some arthritis. Returned this month and on what was to be my last routine CT scan, before they sent me off into the “every two year scan group” potential metastasis to T-6 and T-11 was noted. MRI the next day said unequivocally metastasis to virtually the whole spine, almost every vertebrae. PET following this week lit only T-6, T-11, sacrum and coccyx, but the new onco where I recently moved (not where the CT or PET were done) said that’s only because ILC doesn’t show well on PET, but that it is everywhere in the vertebrae. Bone only but virtually all of the vertebrae. I don’t understand. No pain until this week, annd even that is getting better without meds. All my labs are completely normal (not sure about CA 27-29). Normal calcium, normal AlkPhos (which historically for me has gone in and out of range with just a simple cold).

What I want to know is if the PET isn’t reliable for the bones, because of ILC, how then can I trust the PET that says it’s not in my organs and is “bone only”? I’m so confused. And heartbroken for my daughter who is still only 16, and I’m all she has. I do not know how to do this.

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  • moderators
    moderators Posts: 8,089
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    @kmom57, Sending you big hugs. There are so many effective treatments out there to manage the cancer, so try to take one day at a time! Also, we want to let you know we offer very supportive, moderated Virtual Community Meetups. There are a number of different groups and times, so if you're interested, please check them out here: Virtual Community Meetups. You'll meet other women in similar situations (we have 3 group for people with MBC).

    Also, you may want to talk with your treatment team about a FES pet scan (different from FDG) as they have been found to be more effective with lobular. https://www.columbiaradiology.org/patients/services/pet-ct/fes-pet-ct-breast-cancer#:~:text=An%20FES%20PET%2DCT%20uses,also%20known%20as%20CeriannaTM.

    We're all here for you!
    Your Mods

  • kmom57
    kmom57 Member Posts: 177
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    Thanks. I asked about the FES today and was told “it won’t add much” so basically “no.”

  • moderators
    moderators Posts: 8,089
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    hmmm. That's not been everyone's experience. Would you consider a second opinion?

  • kmom57
    kmom57 Member Posts: 177
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    Yes, I am looking into that at this time. If anyone has a suggestion where I might go for a second, I would appreciate it.

  • moderators
    moderators Posts: 8,089
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    Second opinions can be really helpful. But where to go will depend greatly on where you live, and likely also your insurance. Do you have other comprehensive cancer centers near you?

  • kmom57
    kmom57 Member Posts: 177
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    City of Hope in Atlanta is near me. Anyone have insight into that facility?

  • kbl
    kbl Member Posts: 2,742
    edited April 30
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    @kmom57 Hi, and I’m sorry this happened to you. I was a missed diagnosis for six years due to scans not working for me. It was all throughout my skeleton and bone marrow that whole time with no treatment at all. It then spread to my stomach, and I had symptoms of weight loss and early satiety and a lot of nausea. The scans failed me. I did go and have an FES PET when they were in clinical trial. It did see the mets to my stomach and all of my bone, but they take up too much tracer to really help with seeing other organs. I also have had normal bloodwork throughout, except I was a little anemic. As you know, lobular is very sneaky, so I have to really go by my symptoms and tumor markers. Emory may have the FES PET. Please let me know if I can help with anything. I’ve had the bone mets for almost 11 years, and my stomach mets have been five and a half years. Thankfully, lobular can be slow growing, and if it stays in the bone only, you can live many, many years. Hugs.

  • maggie15
    maggie15 Member Posts: 953
    edited April 30
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    I'm sorry about your diagnosis, kmom57. FES-PET scans are not easy to get. Here is a link to the current institutions that do them.

    https://www.snmmi.org/fes

    My MO wanted me to have one several weeks ago and while it would have been possible to transport the contrast from NYC to Boston a consulting radiologist at MSK said that the location of my "suspicious lesion" (posterior acetabulum) was not a good location for FES-PET and recommended a repeat MRI. That ruled out fracture, osteoporosis and osteonecrosis so what comes next will be determined on Monday. FES-PET seems to work well in some anatomical areas but not in others. I hope you can get the information you seek.

  • kbl
    kbl Member Posts: 2,742
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    @kmom57 I totally understand. My daughter was pregnant when I was finally diagnosed. I felt so bad. And I felt I was not going to be here for my grandson. He’s almost five now. Please keep me posted on your treatment plan.

  • kmom57
    kmom57 Member Posts: 177
    edited May 2
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    kBL, the plan is u/s for a kidney issue noted on CT (did not light on PET), and a bone biopsy. I was told that is to make sure it’s still ER+, but was told it generally doesn’t change so we are assuming it is. After that, they will start Faslodex and Verzenio, though how I’m going to pay for that I have no idea (no prescription insurance). I will also have a nuclear bone scan as a baseline as supposedly, that will be better for ILC? Then scans every three months. What I don’t understand is how they are going to rely on scans if they are simulataneoueky telling me they don’t believe the scans?

    Yesterday I was oddly at peace with this. Certain I was going to live a very long time in spite of it. Today I’m rapidly approaching basket case.

  • kmom57
    kmom57 Member Posts: 177
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    maggie15….thank you for the list. That’s very helpful. I did find a multi-center FES clinical trial that is recruiting and have contacted them to see if/how I can get in.

  • kbl
    kbl Member Posts: 2,742
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    @kmom57 I’m so sorry. If you are under a certain income, you can apply for help through the manufacturer for Verzenio. Also, do you happen to live in a rural town or a big town? There is a foundation that may be able to help if you’re rural, depending on income.

  • kmom57
    kmom57 Member Posts: 177
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    Another thing I don’t understand, and would appreciate insight if anyone has it……I saw my last labs last night. More normal than I think they’ve ever been. ALP and calcium not just in range, but mid-range. Even my slight anemia has resolved itself. My lymphocytes which have stayed low since radiation, and which I was told would likely never come back, are even normal. I don’t understand how cancer could be ravaging all my bones as this new onco clearly believes, and SOMEtHING not be off in my bloodwork? Also, the pain in my hip and buttocks which just started a week or so ago, and which the onco clearly assumed is cancer caused, is resolving. I still have discomfort but it’s not the same…it doesn’t HURT to walk like it was. My fatigue has also lifted. I don’t understand.

  • kmom57
    kmom57 Member Posts: 177
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    just saw my ca 27-29. Almost double what it was when I first was diagnosed with a lot of cancer. Does that mean it’s everywhere? I’m so scared and confused. I’m also so angry that they didn’t catch it when it was certainly there last July, and at myself for not staying at the place I was where they would have run the markers and found it then. Is it too late?

  • moderators
    moderators Posts: 8,089
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    @kmom57 CA 27-29 levels: Cancer antigen 27-29 (CA 27-29) is a protein that can be released by breast cancer. Higher levels of CA 27-29 can mean that metastatic breast cancer is growing, but it doesn't indicate where. It can be for some a helpful indicator to follow as you start treatment and help you make treatment decisions along the way. Take a look here at our article on biomarkers: https://www.breastcancer.org/screening-testing/tumor-marker-tests

  • kbl
    kbl Member Posts: 2,742
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    @kmom57 I understand your frustration, as the cancer was coursing through my bone and bone marrow for six years before they figured it out. My tumor markers were in the 90s in 2016, and the doc said it was because all of them were high, he dismissed it. If he had caught that three years earlier, it may not have spread to my stomach. The meds I’ve been on, three lines, have all worked for a time, two years, 28 months, and so far 7 months. It’s not too late for you. My bloodwork is also mostly in the normal range. My kidneys show normal, yet for two years they’ve told me they see hydronephrosis. I have no symptoms of that. My 27-29 was 490 in 2019 and today is 67.

  • kmom57
    kmom57 Member Posts: 177
    edited May 3
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    kBL I also have hydronephrosis. Noted on Ct back in July. I asked multiple times how could we be sure it was not cancer. This new onco followed up on that. I had u/s today. No results yet, but judging from questions the tech asked, I’m guessing he saw something.

    My ca27-29 was only 45 at diagnosis five years ago, and I ended up with like 2.5-8 cm total (there was disagreement on the size), and 8 nodes full of cancer. My ca27-29 is now almost 80.

    What I can’t get anybody to answer is how are they going to see if this is working, if they are telling me the scans are not reliable? My notes from doctor visit said the PET was significantly underreporting the amount of cancer in my spine. So why then are they assuming it’s not also underreporting what’s potentially in other organs? And onco says they are going to try Bone Scan to see if they can follow it better……how are we going to see it if it appears outside the bones? I’m so frustrated and exhausted and I’m not at all sure I can do this all again.

    I’m at the point I’m trying to decide where to move my treatment, and I’m seriously considering MDA solely for the imaging. Before my surgery, everybody said based on imaging i had one bad node. That’s all. MDA said there were 8. There were exactly 8.

    Edited to add: I also don’t understand why they won’t do an FES Pet. If I’m willing to go where it is and pay for it, why not?

  • kmom57
    kmom57 Member Posts: 177
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    Does anybody know of a facility/doctor that specializes in ILC? Knows how to treat it and what’s on the horizon. Or at least knows how to follow the damned thing on imaging?

    My initial cancer was missed for several years even though I was doing routine breast mri. They blew off the spot that was very clearly there two years before. When I saw the two images side by side (2017 and 2019 mri) even my completely untrained eye could see the spot in 2017 and that there was a distinct difference between it and everything else. I leaned over (in 2019 when I was diagnosed) and touched the 2017 screen and said “is that not it?” “Ummm……ummm…..yes it probably is. In retrospect should we have biopsied that? Probably.” This imaging thing has literally killed me…..I’m not going to let it take me any sooner than I have to. Anybody have any ideas where to go?

  • simplysue
    simplysue Member Posts: 2
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    Hi kmom,

    I'm so sorry you're dealing with this imaging issue. I too was diagnosed with ILC and am worried about this as well. If I were able to travel, I would definitely seek care at MDA, specifically with Dr. Jason Mouabbi. He does specialize in ILC. Below is a video of him discussing ILC. I have been following him since my diagnosis.

  • kbl
    kbl Member Posts: 2,742
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    @kmom57 I was also going to say Dr. Mouhabbi. As long as you’re not on Faslodex, I agree, you should be able to get FES. I have to go by how I’m feeling and tumor markers, and I’ve come to accept that’s how I have to deal with it. That is not how others have to, and I totally get where you’re coming from. Please keep me posted on your ultrasound. Are your kidney numbers normal too? Mine are, so what the hell are they seeing? I’m not having any kidney symptoms, so I have left it alone.

  • kmom57
    kmom57 Member Posts: 177
    edited May 3
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    Simply sue…..thank you so much for the name. I’ve been trying to get in at MDA but they have nothing available until mid-June. I’m going to keep trying.

    KBL….yes my kidney numbers are normal. Actually my eGHR is slightly high for my age, which I guess could be a problem? Everything else kidney related is in range. What they saw on mine was first, inflammation in the ureter. Also fat stranding and something else I don’t recall (thickening, I think) which worried me because it’s sounded ILC-ish if you know what I mean. That was six months ago and nobody but me was concerned. The hydronephrosis in that ureter hasn’t changed on this latest Cat but the new onco wanted to follow up. I’ll let u know what it says. And no, I have no symptoms either.

  • kmom57
    kmom57 Member Posts: 177
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    KBL…..u/s update you asked for….

    Have seen the report. It basically says yes, there is right sided hydronephrosis as seen on the last two CT, but it’s unchanged. Kidneys normal size. There were no masses noted, no stones, everything appears to be normal, if I’m reading correctly (other than the hydronephrosis). Finally a small spot of good news……

  • kbl
    kbl Member Posts: 2,742
    edited May 7
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    @kmom57 That is good news and sounds just like my situation, except for the thickening. I agree that thickening to me means ILC. I had it in a CT of my abdomen when I felt my stomach mets were back. I switched meds, and it got better.

    Just so you know, I’m somewhere right now with very little internet service, so if you don’t hear from me for a few days, that’s why.

  • kmom57
    kmom57 Member Posts: 177
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    Thank you KBL. I appreciate your support. A lot. I’m not doing so well. I wake up every morning feeling like I’m dying, and I go through the day that way. A heaviness that I can’t shake. I can’t even tell if it’s that my arms feel heavy from the tumor pressing on my spine, or if it’s my soul that is heavy. Yesterday was particularly awful. Both my daughter and I with an actual breakdown of sorts. This has killed something in her soul.

  • kmom57
    kmom57 Member Posts: 177
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    I need some advice. I got in to MDA but not til July. I’m worried about starting the treatment they are suggesting here where I am (Faslodex and Verzenio) because I’m concerned it might make me ineligible for any trials that might be better (I heard Dr Mouabbi mention Serena as being hopeful). I’m also worried because this MO seems completely uninterested in the Guardant 360 to see if there are mutations. I was told that will only inform us of what to try next if the Faslodex/Verzenio fails, and that’s not what I’m hearing elsewhere. Maybe I’m reading wrong, but it seems like the Faslodex/verzenio doesn’t work with certain mutations. I don’t know what to do. MDA says there is nothing earlier.

  • bighubs
    bighubs Member Posts: 29
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    @kmom57,

    I don't know if anything I can say will relieve your mind, but wanted to share anyway.

    My wife received her diagnosis of Stage IV ILC de novo just over a year ago now. Essentially out of the blue. Had been having some intermittent stomach pain off and on for a few weeks and began trying to diagnose that in January of 2023. Routine blood test showed pretty severe anemia, but no apparent bleeds anywhere. Subsequent bone marrow biopsy as well as an upper and lower GI scope with needle biopsies all came back on essentially the same day showing metastatic ILC breast cancer in bone/marrow and stomach/colon.

    Needless to say we were all in shock. She was only 45 years old, was otherwise in excellent health, and had 3 kids still in the house (the youngest being 13 at the time). It was horrible. The initial grief, anger, and frustration was almost suffocating. But many people on these forums, which I had heretofore been completely oblivious to for obvious reasons, reassured me that things would get better. Not immediately, and not quickly, but slowly and surely. And they were right. Once we realized what we were dealing with and that while the disease might curtail her life, it wasn't going to do it in the next week, month, or year in all likelihood, it became easier to manage. And it got easier still once a plan was in place for treatment and treatment began. She's been on the first line ever since and all signs continue to trend in the right direction.

    We lived in San Antonio at the time and were being seen by the folks at the Army hospital there. We requested and received a second opinion from the MDA folks in Houston and took a day trip over there to meet with the docs. They concurred with the diagnosis and treatment plan and said they'd be doing the same thing for her if she was being seen there. That was reassuring. We've subsequently moved to the pacific northwest and receive treatment at the Army hospital here, with the understanding that we'll get referred to the cancer center up in Seattle if/when the need for clinical trials or something occurs. Right now it's pretty standard treatment which she is responding well to. The only symptoms she tends to have are side effects from the hand full of pills she takes each day.

    I say all of that to say, "This too shall pass." When you are in grief it's hard to see the light at the end of the tunnel, but take it from others who have been where you are, there is a light coming. Cry when you need to, yell when you must, and hug more often than you did before. And reach out to others who are more than willing to encourage you on this road. It'll get better!

    ~Benjamen

  • kmom57
    kmom57 Member Posts: 177
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    BigHubs, thank you. I’m sorry for your wife and you dealing with all this too. I really do appreciate your taking the time to share.

  • tougholdcrow
    tougholdcrow Member Posts: 54
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    Just reading your story and I am so so sorry. I had spots on bone scan, CT, and PET that were dismissed as inflammation for many months before I asked for a biopsy. After that unhappy experience, I switched to a major NCI-Designated Cancer Center with an oncologist who heads a research team. This is our lives at stake here. I wish you strength.

  • kbl
    kbl Member Posts: 2,742
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    @kmom57 The only thing I would say about being on Faslodex is that it will make it so you cannot get an FES PET scan, so if you would like to get one, please do so before you go on Faslodex. The first line usually is a CDK4/6 and either an AI or Faslodex. I know you want newer medicines because you think they may be better, but I was on Ibrance and Letrozole for two years and then Faslodex for 28 months, so I feel they are good medicines too.

    I think having a Gardant360 would be good to have a baseline, but I think they are more often than not denied by insurance companies, which is probably why your oncologist is saying no. Maybe you could ask Dr. Mouhabbi his thoughts on that when you see him in July.

    @bighubs It’s so great to see you here and that your wife is having a great response. We haven’t talked in a long time. I am now on Orserdu due to the ESR1 mutation, and it’s going well so far.
    I appreciate your update here.