Lobular Sucks!
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Okay, fellow lobular cancerites.
I had a CT yesterday. I've got the report in my patient portal already, but I don't have a Telehealth appointment with my MO until Jan. 25th. For the most part, it looks stable. However, there were a few terms on there that I hadn't seen before on a readout on a CT, and I'm wondering if anyone else has had these and what the upshot was. I have mets to my liver and to my bones.
Comment #1 related to my liver. So first, understand that that radiologist said that his observation was similar to that in October, where this terminology was not used AT ALL -- this was the terminology: Pseudocirrhotic appearance to the liver -- then the rest of the sentence proceeded to state that it was treated sections of my liver (I've had microwave ablations three times to my liver). I understand that pseudo cirrhotic roughly means "false cirrhosis," but I found an article that made it sound that this is not a good thing in our situations. Anyone out there seen this on a report?
Comment #2 related to my mesentery and omentum. This one said: New mesenteric/omental haziness and then said a small amount of ascites. However, I tripped over my daughter's very large dog about a month ago and really whacked my liver area and then bounced and hit my ribs in the back (damn dog). Re the ascites, I know that I tend to develop these with any disruption to my abdominal area -- developed them after one of my microwave liver ablations and the interventional radiologist at that time said they would go away once the area calmed down (and they did.)
Thanks for any info that you might be able to provide. This is me with my post scanaxiety, freaking out.
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BevJen, I don’t have, as far as I know (stupid scans don’t tell my story) have it in my liver, but I would say the first or second CT scan said I had omental haziness. Then the next one said it was gone. I can’t really help with either of your questions, but I did want to tell you that showed up in a scan about six months after I was diagnosed. I’ve also had free fluid listed in my pelvis, but they don’t mention that anymore either. I’m sorry I can’t really help.
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Thanks, KBL, that's useful info. Right now, after Rabbit passed away, I don't know how much credence to put in any of these scans, but I figure I should try to see if this has happened to others.
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BenJen, I am not sure if I should be here because I am not Stage IV but in case you find it a bit helpful, I had a CT scan that had some disturbing words for my bone scan. I asked my MO and he said it is radiological noise. Sometimes the words we google sound scary but interpretation from the doctor is totally different. Sending you hugs.
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Thanks, Lilly, I appreciate it. I'm pretty sure the dog incident did something to me -- I now truly understand "getting the wind knocked out of you" -- and I feel like that, more than anything, affected the CT, but we'll see what my MO says.
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BevJen, I know, I am so very sad about Rabbit. Please come back and let us know what your doctor says.
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ShetlandPony, please check in if you can and let us know how you’re doing.
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Thinking of you SP. I hope the new treatment is going well.
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SP- Hope you are home, comfortable, warm, and getting relief from recent issues! Thinking of you
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Hi, Guys. I suppose I am behaving like a wounded animal that slinks away and hides. That is not very nice of me when there are people who care and wonder what is happening! Thanks for asking about me.
I am in a very strange limbo, waiting to see if Enhertu will make the cancer retreat. I am unable to eat because of cancer clogging up my digestive system. So all my nutrition is TPN which home health delivers and my DH administers through my PICC line. I am hooked up 18 hours per day lately. I have a G tube coming out of my stomach to drain away bile and anything I drink. This is to keep me more comfortable. My belly is big and bloated; onc thinks it is air. And I have the nephrostomy bag as well. I am very underweight and weak. I use a wheelchair to get around the cancer center. My mouth is always dry. So here is what I have: Visiting with friends or family, sitting in the garden, watching shows or reading, and enjoying the flavor of tea, juice and popsicles. I can't wear my regular clothes, take walks, take a real shower, eat food, work in the garden, maintain my home.
I have not needed painkillers for a while now, so that is good. Day three after Enhertu I did, but otherwise I can't see that I had any effects from the infusion. We put my TPN pump and bag in a rolling suitcase, and hung the G tube bag on the outside, so I can get around the house to visit the bathroom or make my own tea if I can drum up the energy. DH is an angel and a very good nurse. Some family and friends have come by to help with housework, deliver groceries, etc.
(Please forgive me for not following everyone's story right now. As you can see I am just hanging on.)
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ShetlandPony, I responded in your other thread as well. Just sending you extra hugs. I totally understand not commenting when you’re so weak. Please know you are in my thoughts.
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SP,
Thinking of you, as always, my friend.
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SP-Hugs
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Shetland, also sending you love and hugs. Hoping the Enhertu will work and send the cancer into retreat. ❤
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ShetlandPony- Hugs to you, my friend.
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SP, Thankful you aren’t having pain…the rest is more than enough. Glad DH is there for you! I hope Enhertu works to help you get your life back soon Gentle hugs!
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SP thank you for letting us know. I hope you are having a nice cup of tea right now and enjoying a warm climate. I am asking Enhertu to be good and to help you. That's what it is designed to do.
Sending you hugs.
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Thanks for all the hugs, my friends!
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Hi, ladies. Did any of you have a 18F-FES PET/CT using the imaging agent 18F Fluoroestradiol (Cerianna)? I searched the forums, and found a few previous discussions, and would like to see if there is any more recent experience.
My mom was diagnosed of ILC a month ago and we are still awaiting on the staging conclusion. CA27-29 is 10 times of the normal upper limit which indicates metastasis. Bone scan shows 2 uptake spots on the opposite side ribs. But the FDG PET/CT is negative - the SUVmax of the 6cm original ILC tumor is even lower than the baseline liver SUVmax (meanwhile a separate CT with contrast says on the liver there are a few punctate low density lesions "too small to definitively characterize"), which probably means the FDG PET is also useless for the liver when the whole liver has a higher SUVmax than the tumor. I read that ILC has low sugar uptake, so mets may not show on the PDG PET.
One of the MOs we saw for additional opinion said he never ordered FDG PET for lobular patients because it's not sensitive for ILC. He also mentioned the new Cerianna agent and is checking if their radiology department can offer that.
If any of you had the 18F-FES PET, can you share your experience regarding how it compares to the FDG PET? Does it detect things not shown on FDG PET? Or did FDG PET help identify things for you? Any advice is truly appreciated!
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Ivla, I had the FES PET in a clinical trial in June of last year in Utah. We did an FDG PET for comparison as well.
I have had a few FDG PET scans, and I'm loaded with cancer. The FDG showed absolutely nothing.
The FES PET showed the cancer where it is, full spine and also my stomach, which has never shown on any imaging before. It was only found through endoscopy. The thing I was sad about is it isn't good for showing mets to certain places, like the peritoneum because it takes up too much of the agent to tell anything. If I'm not mistaken, it's not good to show the liver either, but I may be wrong on that.
Also, if your mom is on fulvestrant, she would have to come off of that for a period as well. I don't know why, but they don't do it if the patient is on fulvestrant.
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IVIA - I went down to Hoag Center this September to see a radiologist, Dr. Ulaner, in Southern California who is running a FES PET clinical trial to see how well it can identify ILC. It wasn't able to find any mets during my visit., but previous FDG PET's couldn't either. Finally a month later a FDG PET /CT with Contrast did pick up some activity in my pelvic fluid and omentum. My markers had risen dramatically and it took at least 4 months to locate the source so I could immediately switch drugs (I went from Xeloda to Taxol) which has dramatically reduced the markers as of today. You can call him and ask him questions, he is very knowledge and readily shares his opinions and information about FES and Lobular Cancer. In the past FDG has picked up some lobular spots for me (liver, anal node) so the blanket statement from the MO about no FDG for a ILC patient does not sound very professional.
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Ivla, I don't think we can make blanket statements about imaging ILC. Each patient has to figure out with their doctor and radiologist what works for them, depending on the characteristics of the cancer and the location of the metastases. Here is an article for you:
https://lobularbreastcancer.org/imagingilc/
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Thank you for sharing your experience, KBL and Nina. My mom's CA27-29 is in the 300s and she has some abdominal pain, so I'm worried if there are other things besides the two rib uptakes shown on the bone scan. Haven't done a bone biopsy yet. What range are your tumor markers, if I may ask?
I found Dr. Ulaner's page at Hoag and also read a couple of his published papers. Found his corresponding email in the papers and will try to reach out. I'm in the process of talking to the MOs about how to get the FES PET study and will report back. Thank you again.
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Hi, ShetlandPony. Thank you for sharing the article - I will read it through, as well as the LBCA website. The original tumor was never caught on mammograms or ultrasounds for years - while she could feel the hardness/firmness area on the breast, the images were still negative. Now I am worrying about the same thing on detecting the mets.
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Hi, KBL and Nina. Another question - how long was your wait time between the injection and the actual scan, for FES and FDG PET, respectively? I remembered my mom's FDG PET wait time was 45-50 min...was wondering if that's adequate. I saw some cancer centers' FDG PET instructions say 60-90 min wait time. Not sure about FES. Thank you!
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Hi, Ivla. I believe for the FDG it was around 60 minutes. I want to say the FES was 45-50 minutes. I have had a number of FDG, which are useless for me. I know it wasn’t over 60 minutes on any of them.
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I only wait 50 min for FDG, can't remember how long for FES but I do remember you don't have to fast! - you can eat whatever you want up to the scan. I think. NINA
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Question. I got what I think may be my last CT scan, at least for a long while. I’m so tired of every scan saying something different. Has anyone had their report say this, stable apical parenchymal scarring? That has to do with my lungs. Nothing has ever been said about my lungs before. I will ask doc on my Monday visit. Other than that, I am fine. They don't mention anything on this scan that has been seen on other scans.
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KBL, the different scans saying different things makes me feel crazypants. I've had reported biapical scarring in my lungs on my scans, and I ended up meeting with a pulmonologist (because I was having a dry cough). She said I had minimal scarring due to chest wall radiation in 2020 but it was so minimal it would not result in a cough. Turns out I have post-nasal drip 🙄. Better than more cancer, obviously, and I try to chuckle that of course I assume ANY symptom I have now is more cancer.
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Thank you, SF-Cakes. I’ve never had radiation and don’t have a cough, so nothing that would say there’s an issue. I’ve had so much testing off what scans say. I had an emergency room visit that the scan said I had bilateral hydronephrosis. Nope. More testing and negative results. I’m very appreciative that it was wrong, but the expense of all the extra testing is enough to drive me crazy. I’m done. No more tests until I have an issue.
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