De Novo Stage IV
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I hope the scan gets reassuring results, KBL. And if it does not, there are still a choice of treatments available. When Ibrance failed me after a four year run, I went on Xeloda (after a couple of months of great fear of "real chemo"). It has not been too terrible so far, and my April scan showed regression of several tumors.
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KBL, There is a newer imaging technique, FES-PET, which picks up breast cancer activity by taking up an estrogen-like dye, and is good for determining whether or not the cancer remains endocrine-sensitive, and is also much better at detecting lobular cancers, it was developed and is used at Fred Hutch in Seattle. It was FDA approved two years ago but most places still don't offer it, however times are slowly changing and you might find one near you. I see there is a clinical trial but only for testing newly diagnosed patients, however looking at the locations would still tell you which places have this type of scan. This is one case where MBC advocates could make a difference by demanding this be more widespread:
https://clinicaltrials.gov/ct2/show/NCT02398773#co...
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Thank you, Snow-drop, SeeQ, and NineTwelve.
I know my next line will be either Xeloda or Afinitor. The problem is not knowing if I have progression because the stupid scans don’t work for me. I don’t want to switch too soon and don’t want to wait. All I know is I’m still as covered in cancer as I was two years ago. My tumor markers came down about 100 points in the beginning but have not dropped since. There is progression, but then there is stagnant, which gives no answers, just like scans.
I think I also think that even though I technically was diagnosed two years ago, it’s been running through my body for eight. I’m on my first line, but that doesn’t really mean anything since I went six years with nothing.
I just wish I had the answers I need. That’s the hardest part. I’m always searching for the answer, am I progressing, are the medications helping?
I’ll keep you all updated. Thank you for the good wishes. Endoscopies are easy for me. It’s the easiest of all testing and gives me the answers that I need at the time about my stomach.
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After many phone calls and following up finally I gotthe mri report. It said perineural cysts and fatty filum in lumbar spine, radiologist did not bother to locate those cysts. Funny the radiologist mentioned neck pain and neck trauma as reasons for mri!!!!! Wow just wow They are either sleepyhead, drunk or high... I keep telling neuro oncologist nurse and NP that I have a bad pain in sacroiliac joint area since mid January, the nurse refused to add pelvis in mri order when she said we cannot simply order mri of your hip because you are saying you have pain! so now it is a proof, I hope they believe me now... Good to know at least what is cause of pain.
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Snow-drop, I can totally relate at how frustrating medical care can be. Getting anyone to listen is so hard.
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KBL. Sorry to hear about possible progression and the extra measures you've had to go through just to get it checked out. I do hope the endoscopy (and other imaging too?) help to clarify things. Identify with both of you, KBL and Snow-drop, about the constant pushing with doctors this takes. A friend of mine marveled to me that I'd done so much research....I thought, yeah, to the ongoing postponement of my own work. Shouldn't this be their job?
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Thank you, prairiesea. Absolutely, it’s their job, but it seems we fall through the cracks. I had a telehealth call yesterday, and when I told her I set my abdominal MRI, she laughed and said she’d never met anyone like me. After a few minutes, I asked her what she meant by that. She said she’s never had a patient set their test before it was actually ordered by the doctor. I’ve been asking to have this abdominal MRI since last October. It takes forever to set them, so while she was away for the week, I went ahead and set it so I could have it as soon as possible. It’s whatever. I don’t even care anymore what they think of me. They should try to walk a mile in our shoes.
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KBL, that sounds awful. I left my former GP a decade ago because she laughed at one of my questions. Big loud laugh right in my face. They should understand that our symptoms can be unique to us and that pain always has a cause.
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NineTwelve, wow. I guess maybe they need some bedside manner training. They have no idea what’s ahead of them if this abdominal MRI shows anything, since I wanted it six months ago and was in the outfit ready to go and had paid for it already myself and they told me no. I hope, for their sake, it says all clear.
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KBL, what do you think of Cure-ious' suggestion to seek an FES-PET? If your docs are willing to go to bat for you, I think they can make a good case that you need it as other modalities are not helpful.
https://lobularbreastcancer.org/lbca-scientific-blog/
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Hi, Shetland. I have been in contact with a clinical trial for the FES PET that is recruiting in Utah. I have to have a positive biopsy for ILC within 12 weeks of test. I have been having some stomach issues again, so I have endoscopy tomorrow. I'm going to ask doc to take plenty of samples. Once the results are in, I will contact the folks in Utah and see what the next step is. My husband does not want me going alone right now because I'm having eye issues and head weirdness that I don't know what it is. Once I'm set, I'll see who wants to fly with me to Utah. If nothing else, I may be able to help someone else if I have the PET. I'll keep you posted.
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That sounds good, KBL. Does the endoscopist know you need this for a trial? Is it just a definitive diagnosis they need for the trial, or do they want tissue? (If they do you wouldn't want your current cancer center to use it up.)
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I’m going to tell him tomorrow. He usually takes 12 samples. I’m going to tell him to please make them a little bigger. I tried to have a test for PIK3CA, and none of my biopsies had enough, including my bone biopsy. Ugh. I’m going to tell my doc not to touch any samples until I say it’s okay. I’ll be Miss Bossy Pants. Lol. I would assume they’ll want tissue, but I’m not sure.
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Good! My last liver biopsy I was also Miss Bossy Pants. I said, "Listen, I really need enough tissue for Foundation One. Do not waste it checking ER and PR again. Just get enough for F1. I told him the previous biopsy the IR took seven cores and only one had some cancer cells in it. He said, "I'll get it." He was on the phone with my onc as I waited, probably telling her he had her Miss Bossy Pants patient there and confirming what we needed.
We got our F1 and shortly after that, by my onc's request, we were able to use it for trial entry instead of yet another biopsy.
Sounds like you will need it to show bc that lacks e-cadherin and thus lobular, along with enough for F1 and/or the trial? Maybe your onc needs to call asap about what the trial wants.
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Shetland, I've done all the work, as usual, finding this trial. I told her about it, but I'd rather do it myself. Here is the list of criteria below. This is my fifth biopsy, four of the stomach and one of bone. He took 12 samples the second and third time. You'd think they would have had enough for extra testing, but there was never enough. I have cancer all over in my stomach. He will get enough for me tomorrow so that I have it for this and anything else I might need in the future. Lol.
And good for you for being Miss Bossy Pants too. We become semi expert at taking care of our health. I want to be here for a while, but I want to do it with as little pain as possible. This.last few weeks I've gone downhill. My.pain level is getting silly. I was doing pretty darn good up until now. I must figure out why.
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KBL, ummm... You're talking to an ophthalmologist and considering a brain MRI (the one test modality that works for you), right? The last visit with my ophthalmologist (and the first one after my very new diagnosis), she was specifically looking for eye mets, which I didn't even know was a thing. I'm not sure what you mean by head weirdness. I know you don't need one more thing on your plate, but... Sorry if I'm out of line. I'm so new to this, but that just doesn't sound right.
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Hi, SeeQ. I never think anyone is out of line, so no worries at all. I am trying to tell anyone who will listen something isn’t right, so I’m going one step at a time. This morning is going to be an endoscopy because I’m having symptoms of my stomach mets and want to make sure they aren’t progressing. Next week I have an abdominal MRI, which I’ve wanted since last October. I’m not taking no for an answer next week. Then my brain MRI is on May 5th. I totally agree what I’m dealing with isn’t normal. I had an eye exam by an optometrist in December and specifically asked him to check anything weird. This was before the head symptoms I’m having now. He said all was good.
It’s so hard to describe how my head feels. It’s less than a headache but a feeling like a headache is going to start or just a thickness feeling in my head, and then my eyes are feeling very strange, like a heavy feeling and not quite focused. I can’t drive right now because of it.
I’ll write each time after a test to let you know how it’s going.
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Endoscopy done. He said it didn’t look much different than last June but took biopsies in numerous places. He didn’t mention gastritis at all. I guess that’s finally taken care of. Will post results when available.
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KBL - Oh good. I didn't want to be overstepping. Of course you're on top of all of it! Sounds like preliminary good news from the endoscopy. I'll be thinking of you on the 5th - that's same day I see the endocrinologist for the first time. I know you need an explanation for what's gong on. I pray it's an easily solved one.
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KBL, Thumbs up for being miss bossy pants 👍👍 you’ve done great job pushing your care team. Wish you all the very best for tests and the trial. I keep checking to see your update.
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KBL, I’m sorry you’re dealing with all of that and I certainly hope for some non-cancery reason for your symptoms. But, if they do find brain mets, please know that they are often surprisingly manageable and treatable. Good luck to you.
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Thank you, SeeQ and Snow-drop. I appreciate you.
Illimae, I follow along with you because I know you have a lot of experience with the brain. I truly don’t think it is brain mets, but then I get to go down the stupid rabbit hole of figuring out what it is. I’m so tired of the answers not coming easily. That’s what’s so frustrating.
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cyathea, my mets also have signet ring cells. My symptoms started in October of 2018 with being only able to take a few bites of food and feeling I couldn't eat anymore, immediate nausea after eating but no vomiting, and a 17-pound weight loss in a very short amount of time. I was not overweight at the time. I've never gained that weight back.
This was my fourth endoscopy. I just want to make sure it isn't worse. It's all throughout my stomach, so I'm just making sure. He said it didn't look worse than last June, but when he first did the endoscopy, he said he thought my stomach looked normal but took biopsies anyway. I thank him all the time because he was my hero for finding what was wrong with me.
This finding is the first true finding I had breast cancer, but it went to my bones and bone marrow first, without being diagnosed for six years. If it had been diagnosed sooner, I may have been able to keep it in my bones only.
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KBL, thanks for sharing. You are the only other person I know that has had signet ring cells.
I can relate to that feeling of relief when they finally figure out what is wrong when you don’t feel well. It took years for them to find my Grave’s Disease. Some doctors told me I was just having panic attacks and I am cool as a cucumber so I knew they were wrong. But I hated that they made me doubt myself.
I’m wishing you and me good results on our endoscopies.I have not been able to schedule mine yet due to a potential issue with my blood (but I think that was just contamination of the sample rather than a real problem). I’ll get my blood re-tested on Thursday.
I have gained rather than lost weight, but recently my weight has stabilized. I do have nausea as well. That may be my gallstones but we’ll see.
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cyathea, I'm sorry they made you doubt yourself about Grave's. Hyperthyroidism can sometimes be worse than hypothyroidism because it seems harder to treat. I have hypothyroidism. The thyroid is a pain.
It's also hard when you have something not a lot of other people have. When I was first diagnosed in my stomach, I couldn't find anybody like me.I think symptoms of stomach metastasis will vary, just like other symptoms of this awful disease. Is this your first endoscopy? Even though my doc thought my stomach looked okay, he took biopsies. I hope your doc does the same. My doc was so shocked when he found out it was positive. He felt so bad, he made my primary tell me.
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Somebody posted that they demanded certain checks for mutations vs others. How do you do that?. I am feeling really discouraged with the results from CARIS, and before I pay the bill,plan on contacting them and asked if they screwed up. Already knew I was ER+, HER2-, no BRCA etc from test 2 years ago that looked for specific BC mutations. Almost all biomarkers checked were "indeterminate". A footnote on the report "An initial attempt for mutation analysis by next generation sequencing did not yield results due to a technical failure and there was not enough DNA remaining nor sufficient tissue to make a second attempt......." My oncologist was not too concerned, stating that there were no treatments yet, for the other mutations listed indeterminate. Is it worth more biopsies if they were willing to redo tests at no charge to me?
A question on the FES-PET. Utah would be doable for me, if being in a trial would help. It sounds as if it might be better at finding cancer as well as determining if certain hormonal drugs would have any benefit. Knowing if a drug would be beneficial is valuable information. DId I read that right?
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BlueGirlRedState, are you ER+? I also had Caris with crap results. I have not gotten a bill. If you do get a bill, I would call them and tell them you don't think you should have to pay. Did they already send a bill? My insurance didn't cover and said I would owe something like $900. I didn't ask for this test, my doc sent it without my okay. I'm not paying for it. But they have not billed me.
FES PET trial is for lobular. Are you lobular? I can get you info if you need it.
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KBL - please send the info. I think the first BC was lobular. I am ER+ .
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https://clinicaltrials.gov/ct2/show/NCT04252859
Here you go. You have to have a biopsy within 12 weeks of test that had a histology of lobular. Paige isn’t working on it any longer, so contact Matthew if you’re interested.
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