Bile duct stricture could be ILC mets
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Yes, I’m glad that liver biopsy is behind me. I have to confess that I got a little tweaked. It was so sudden, the nurse telling me they were coming to get me, and my DH who has been with me for everything was gone (sent home to sleep) and I felt very alone and vulnerable, and then when I got to the room it was not the doctor I had been expecting. I’m sorry to say I had a bad attitude in between bouts of tears. I grilled the doctor, and I insisted on talking to my onc on the phone before I would agree to proceed. I did apologize to the IR who was actually very good.
They tell me I have an interventional radiology consult soon, but I don’t think we will actually do any ablation until we have pathology results. Now I worry and wonder whether the endo doc is right — he thinks it’s bile duct cancer; or my onc and the liver/biliary doc are right — they think it’s ILC. Since this liver lesion and the bile duct lesion showed up at the same time, we are assuming they are the same. But theoretically if the liver spot is ILC, we still don’t know for certain about the other one. On the other hand, if the liver spot is BDC, we can safely presume it is a met from the bile duct. How crazy it is to be hoping I have ILC progression.
Hospital, yes, I take a walk around the halls every day and look out the windows and at the art on the walls. It feels like I have been here for weeks. Thank goodness for the bit of nature outside my window, and for my links to the outside world: texting and internet. The biggest presence in my days and nights is the blasted IV pole that I have to take with me everywhere including into the bathroom. I’m always afraid I will make a wrong move and yank out my port needle. The darn IV machine will start beeping loudly in the middle of the night for reasons known only to itself.
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ShetlandPony, I'm sorry. This stuff is so hard. It sucks. I hope you get answers and can go home soon. Any estimate on when you can leave the hospital?
Edit: it could also be a new liver cancer that has spread to the bile duct, which is a thing that happens. If you get another inconclusive biopsy, you need to start asking about what else it could be.
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That is another theoretical possibility. I think the pathologists here will be good at their job.
I think they will spring me soon and send me home with antibiotic pills. The infection apparently stayed local; the blood culture result finally came back and it was negative. So that’s good.
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Shetland, sending you a virtual cake with a saw baked into it, in the hope it will help get you out of there soon. Good news on the infection staying local - you were due for some. Now let the good news continue with the biopsy results. I hope you have an appetite so you can keep your strength up for whatever comes next. Sending massive waves of support your way ~ JL
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Good to hear from you Jaylea. You've been thru your own tough patches.
S
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Shetland-- Wish I could be there to help make the time go faster in the hospital--visit the gift shop, look at the artwork, and talk. I hope you get answers soon and can formulate a plan. Liver biopsy results how long? Today Tuesday. Maybe Friday. Definitely Monday. Then they should know ILC, liver cancer, or bile duct cancer right? So sorry you are going through all this. Hugs from here.
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Jaylea, thank you for sneaking me the saw. I did escape the hospital and continue with antibiotic pills at home. Candy, in a way you and the others WERE there with me. It was really good to be able to open my iPad and talk to you guys. I really hope I hear path results before the weekend. My onc will call. She knows waiting is awful. Right now I’m trying to dwell in a nice little bubble of denial.
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Shetland- i totally love denial.
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The pathology from my liver biopsy shows breast cancer, not bile duct cancer. Whew! We are waiting for more details from pathology, such as whether it is more ILC. The IR could not get enough tissue for genomics so we will do a liquid biopsy. Then we can make a treatment plan which may include ablation. I am also interested to know what will be proposed regarding the other tumor that caused the bile duct blockage. Theoretically it could be bdc there but the docs think that the two lesions would be the same since they appeared at the same time. Perhaps if the new treatment kills that tumor in the next two or three months we can simply remove the temporary stent? And maybe at that time if there is still tumor there the endo doc can try to grab a sample? These are just my musings; will talk more with my onc soon. I think the liver/biliary specialist is going to do a tumor board meeting with that team, then talk with my onc. The fever and discomfort are both gone now so I know the stent infection is gone. I learned the hard way that a little applesauce is not enough food to prevent nausea and vomiting after my early morning antibiotic dose. Fortunately I had some Zofran on hand.
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Shetland-That is a relief. Glad to hear you are dealing only with one cancer instead of two. (A few years ago they thought I might also have kidney cancer so I can relate). Hope you have a good weekend now and are able to relax and eat something, then onward to the new treatment plan!
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I like you sense of humor regarding the applesauce..tells me you are coping the best that you can.
Sounds like your specialists are leaning towards breast mets for bile duct. If it is and also ILC, what thoughts do you have for next line?
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Shetland- “good” news! Hard to eat when you have nausea- though ginger has been my friend in many of its iterations. Maybe a nutrition packed smoothie could go down without too much trouble. Just “tolt” on down the esophagus. ;
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Lol, Nkb. Fortunately, I found that if I eat a bowl of cereal before taking that pill, I don’t get the nausea. It’s a bit difficult at 2 AM, but I’m trying to space out the pills evenly to make darn sure no infection returns. After the week’s course is done, I want to get back to the 13-hour overnight fast. So as far as treatment, Sandi, when I did a Guardant 360 liquid biopsy two years ago (at treatment change to xeloda), the only actionable mutation of any significance was a Her2 aka ERBB2 mutation, and neratinib (Nerlynx) was suggested. So if my upcoming G360 still shows that, we will employ neratinib. I am asking my onc about adding it to xeloda, since xeloda is apparently still controlling all the other liver mets. The liver/biliary doc and I discussed zapping the two tumors based on the idea that they are the only xeloda-resistant ones. Bottom line, I am waiting for the docs to make a plan and for more from the pathology report and the G360. Chicagoan, I’m glad we both only have to deal with one kind of cancer!
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ShetlandPony, I'm so very sorry to hear of everything you've been through, and I hope that your strength begins to return very soon. It's good to know that you're not dealing with a second cancer, and I hope the ILC responds beautifully to your next treatment!
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I'm going to have to agree that one cancer is better than two. Glad you finally have some answers, hope you can get a plan soon!
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Thank you, Bestbird and hapa. I’m almost finished with the antibiotics and hoping I will feel more normal when I am off those
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Sending you hugs and good mojo to recover quickly! It’s progress that they’ve found out what’s happening so you can start an effective treatment. Hoping this is just a bump in the road for you!! A little dance music while you are on the couch polishing up your dance shoes💃🏻
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Thank you, Iwrite.
If anyone is still following the saga...I have been getting back to my yoga, dance, and household chores and feeling more my normal (what passes for normal when on Xeloda anyway) self. BUT I am losing sleep because of the unknown. I worry about what my treatment plan — when I get one — will do to my quality of life. I am not even finished unpacking from my move.
The liquid biopsy tells me nothing helpful, as far as I can tell having not talked to my onc yet. The Her2/ERBB2 mutation from two years ago, for which there was a drug recommended, went from 17% to Not Detected. All the smaller percentage mutations from two years ago went to Not Detected. The only new ones are variants of unknown significance: BRCA2 at .2% and MET at .1%. I talked with a scientist at Guardant. It may be that low tumor volume, low degree of progression, and/or recent chemo are keeping the mutations below detection level. Not shedding much DNA. ND does not rule out the presence of a mutation. But we are left guessing which one could be a driver. One thought I have is that the two new mutations should be blamed for the new activity, so maybe use a PARP inhibitor on the suspicion that the BRCA2 is pathogenic. Or pick one of the ones from two years ago — neratinib for Her 2, or alpelisib for PIK3CA.
With low tumor volume and no alarming test results, you might think I could just wait and monitor, see if it stays stable. BUT one of the two lesions blocked my bile duct and what are we going to do about that? The stent is only good for two or three months. I think ablation makes sense but I don’t know how safe that would be near the bile duct. There’s some pretty important plumbing right there. I need to talk to the liver/biliary doc and the IR as well as my onc. I wish I could meet with everyone at once.
My onc is on vacation for two weeks! My nurse practitioner is great, but for this I need to talk to my onc. Feeling kind of lost right now.
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you sound very coherent if it is of any consolation.
Do not they do interdisciplinary meetings at your hospital re speaking to them together? I know you would not be there but the professionals would
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They do tumor boards but in particular teams, such as The breast cancer team and The liver/biliary cancer team. I really feel I need both at once! And I would like to be there to hear and understand everything and ask a couple questions. Also I want my onc to talk to the scientist at Guardant so I can double-check my understanding and be confident my onc has all the info they have to offer. Everyone is so busy and working hard, and I don't want to be demanding. But I am the one watching all the balls in the air and I am the one who stands to lose if one gets dropped. My onc will network. But she is gone right now. The non-bc world has no idea how much it takes for me to keep calm and carry on. I have that sense of holding terror at bay, that seems to come with each diagnosis/progression.
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Yep. Do you have anybody uou confide all the minutae of your thoughts and plans on cancer ?
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I told my DH a bit about how I feel. We also discussed the Guardant results. He is a smart man, good scientific mind, good problem-solver. But I have read a lot more on the subject of mbc than he has. I wish I could talk over the medical choices face to face with some of our “brainiac" BCO sisters who follow the research.
Who do you talk to, Anotherone?
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Of course they would not be able to relate be cause you do not relate everything to them. I talk a bit with my friends, sister and soon to be ex partner. But yeah loneliness as palpable. He did not talk much even when we were good so as we separating and with stress of cancer he talks even less. When I have said to him "do you realise , as I am having a port placed it will likely be for life" he responded "oh,that's a cheery thought" while passing me on his way upstairs and that was it.
. I can not imagine more insensitive response.Edited to add. I think we know and think that much on the subject compared to other people as it does not feature much in their lives that there is no way to avoid feeling isolated and it would be unfair to expect anybody else apart from medically inclined partners to be 100% as into it as we are.
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Shetland- is there anyone from BCO or other support group that lives close to you that you could meet for tea or something that would be willing to listen and talk for a few hours without getting anxiety? Bounce off ideas, commiserate in a non pity way? I met with someone yesterday from BCO and it was a relief to just talk non stop about it. Most people without cancer can’t tolerate it or worry about you.and most people I know don’t even know I have cancer- which ultimately works for me, as I have to talk about other things.
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I too wish I could meet BCO ladies and talk face to face. Shetland are you close to me? I doubt it. Sorry. You can PM me anytime. I am not a "Brainiac" though.
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This is one of the great things about our big online group. Everyone helps in their way, whether listening, commiserating, supporting, advising, cheering up, or discussing the research. I appreciate you all.
I’ve met three BCO ladies in real life. Two of them are gone now.😢
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yeah attachments formed in this community are peculiar - all the chances are that either one or another going to be gone before soon.
What I find difficult as well is that sometimes I am in a matter of fact mood , sometimes I am in a sensitive mood when straight talk feel insensitive and makes me teary - I am conscious that others are like me or likely worse as I have almost no limitations physically at present time which is a big factor in one feeling down. So , if others are like me what I say here has potential for hurting u offending people . But then filtering everything may feel wrong as well ..
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Shetland- oh! that is hard.
I have noticed that there are a lot of ILC posters on here- esp Stage IV - way more than the 8-10% incidence. When I read over the old Afinitor posts, felt like they were almost all ILC. Have you noticed this?
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I am. lobular person and have only been active on BCO for a few months, but strangely, yes, it hit me too that there seem to be a lot of lobular people on these boards. I mostly look at the Stage IV posts, and it's hit me in the face.
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Yes, I have had the same thought, that there are a lot of stage iv ILC people here, more than expected given the percentage of new diagnoses of ILC vs. IDC. One time I tried to tally the number of IDC and ILC posters on a stage iv thread that our late sister Zarovka started called How many are we? I wanted to compare the percentages to the percentage of bc diagnoses that are IDC vs. ILC. But it was difficult to tally because some people posted more than once. Now I can’t remember what the counts were!
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