Bile duct stricture could be ILC mets
I’m reaching out here to ask for any input about ILC mets to the common bile duct. Because of symptoms suggesting gall stones, (including elevated bilirubin, alp, ast, alkP; pain below sternum, orange urine, and itchy jaundice) I had an ultra sound. A stricture of the common bile duct was seen. I’ll be getting a CT scan next, and then I suspect an endoscopic retrograde cholangiopancreatography (ERCP) in which a catheter carrying a camera is sent down the throat. I suppose a PET-CT as well. And there will be a biopsy. Lucky me.
This could be something benign but I don’t have a good feeling about it. It could be primary bile duct cancer, for which I have an increased though still small risk because of MSH6 mutation. My low normal breast cancer tumor markers perhaps suggest this. But I think the most likely thing is weird ILC mets.
If you have any experience with this, please share advice, warnings, scientific papers, best place for diagnosis and treatment, your experience. This is a whole new subject for me and I need to get up to speed quickly.
Thankfully I am at an NCCN center, and my onc is moving things along quickly for me. I went for my blood test a couple days early because I wanted my bilirubin checked even though a urinalysis (of my orange urine!) last week showed no bilirubin. Lousy lab? (Not at my cancer center.) The blood test results won me a same-day ultrasound. One worry I have is a scenario where liver function declines and I can’t have chemo. Also worried that surgery or procedures could keep me off chemo for too long. I don’t want this to snowball.
ShetlandPony
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hi Shetland. It's frustrating when no one fits the mold, and can respond helpfully to a post. I've posted of few of my own like ghat. It can feel lonely. I hope someone comes through with some info for you. In the meantime, tests suck. Good luck finding your answers my friend.
Sunset
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Thank you, Dear Sunset. Very kind of you to post for me. I’m going to do some more searching here to see if anyone who has dealt with this is available to chat.
CT done. Expecting onc to call with results and Gastro appointment.
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Shetland, I am praying for you. ILC is so weird and sneaky. Hopefully the mass, whatever it is, can be removed. My dad passed of bile duct cancer. He had some incompetent doctors - it's a long story, but if it is bile duct cancer make sure you see an onc that specializes in it, as it is so rare that most oncs would only see one case every 5-20 years, and do it quickly. If you want more details I can give them, but bile duct cancer is nothing to mess around with. I hope it's just a really big gall stone or something.
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Thank you, hapa. If it turns out to be bile duct cancer, I will take your advice and check on the doctors’ level of experience with it. So far I feel I am in excellent hands. I think the chance of an ILC met is greater, but I won’t say I’m not worried.
The CT showed something there, and this week I will be having the ERCP which will include the draining of backed-up bile, an ultrasound-guided biopsy (hopefully enough for regular pathology and genomic testing), and placement of a temporary stent. Thank goodness I get general anesthesia. Home the same day or one night in the hospital.
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Shetland, I cannot offer any information about bile duct cancer, but I can tell you about ERCP. My DH had the procedure done several times a few years ago. He found it easy to tolerate, and no real recovery time was needed. He also had a biopsy done with no after-effects. He had a stent put in (actually he had the stent replaced twice since they were only temporary). His bilirubin returned to a normal level relatively quickly once the stent was in place. I hope that your pathology report shows that whatever is there is benign. Regardless of the results, I am sure you will have excellent care. You are in my thoughts and prayers.
Hugs and prayers, lynne
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Thank you, Lynne! It is good to know your DH did not find it too difficult. Can you recall any tips for after, such as what foods I should get in stock? Was it a core needle biopsy or something smaller? Did your DH have a sore throat or abdomen after the ERCP?
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My dh’s throat was a bit scratchy after the procedure, and he was hoarse for a couple of hours. He didn’t suffer any abdominal pain. He was told to take it easy for the rest of the day, but he was able to resume regular activities the next day. I don’t remember that he had any dietary restrictions. At the time, my knowledge of biopsies was minimal, and I don’t know what type it was. I wish I could provide you with more information. I am sure you are anxious to put it all behind you and get the answers you need
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Well, “the patient tolerated the procedure well” but wow, that was a bit hard on my body. There were some days of bad gas pain and some constipation, along with sore throat/weak voice and tiredness. I knew I needed to walk in the days after, but I felt so weak. So it was walk a tiny bit, lie down, repeat. There was an immediate reduction in jaundice itching, though it took a full week for the jaundice to really clear. Good quality fruit popsicles and egg drop soup got me through.
I got the draining and a temporary stent, but they could not safely get a biopsy with the equipment on hand, so back I go, probably in a few days. I am a bit ticked off about that — why couldn’t they be better prepared? And I know there will be at least one more time to replace the stent. Still, I will not complain because they did work hard to get me in right away and I got the big endocsopy guru so I am not afraid of incompetence or anything. Also pleased that my enlightened anesthesiologist gave me toradol (reduces inflammation that can promote metastasis), good anti-nausea meds including a patch to get me through the long ride home, and she used my port so no painful IV. I do not remember leaving the hospital and DH said I was pretty “floppy”.
Are we having fun yet?
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Glad you got that done, Shetland. What's next?
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Labs, meeting with endoscopy guru, biopsy, genomic testing. Then once we find out what it is and what meds to try, treatment plan.
Do you get to see your onc this week, Grannax2?
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Shetland, glad you made it through the procedure well. I can't imagine the frustration you must feel about the medical facility not having the proper equipment in the room to do the biopsy. I hope the next procedure takes care of that.
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Shetland-So sorry you have to go through that again. Ugh. At least the fruit popsicles and egg drop soup sound good and am glad the jaundice is gone.
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Shetlandpony..when is your procedure? Happy to hear your jaundice is clearing.
I remember Taradol. It stopped my pain immediatelyafter a Neulasta injection caused horrific bone marrow pain. I guess all those white cells were rushing to get into my bloodstream!
I think of you every day. You will get your dancing moves back.
S
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Thank you, JFL, Chicagoan, and SandiBeach. Yeah, they said the equipment is not used often so they do not stock it. Not a good excuse in my opinion. But I’d rather go back than have an accidental hole poked in the duct. Stocked up on popsicles, will make sure the Asian take-out place’s number is on DH’s phone. I figure later this week for round 2.
Sadly, I have skipped some dance classes recently, feeling tired and unmotivated. Didn’t want to put on my makeup and my smile. I think it’s the stress of knowing something bad may be happening here but not knowing just what it is. I would feel better if I went. I’m gonna get behind and blow my reputation if I’m not careful.
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Shetland- so glad the jaundice cleared. But, big bummer about the biopsy- tho I am glad some cowboy didn’t plow ahead with the wrong equipment and hurt you irreparably. Silver lining?
By the way- are Islandic horses related to Shetland ponies? Saw a picture of one in a guide book and looked like your moniker. Something to ponder.
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Shetland, it must be frustrating about the dance classes. It is a conundrum of not wanting to go but knowing you will feel good if you do. Don't be so hard on yourself. You will be back in no time!
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Shetland, I'm glad you are feeling better. And sorry you have to go back. Ugh,
I, too, hate the term "tolerated". I mean, what's the alternative?
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Yeah, and when you get home and have to recover, you think, “Wow, if this is tolerated, I’d hate to see what didn’t tolerate means!” JFL, I did make it to a class this week and it was such a great mental break. Nkb, you are so right. I would rather have a cautious doctor than a reckless one.
I had very informative visits with two specialists at my cancer center. There is still some discussion about what the mass is, but the liver/biliary specialist agrees with my onc that it is more likely ILC and not a new bile duct cancer. He did some creative detective work with my last two years of scans, pointing out a lesion near the bile duct that could be the origin of the present blockage. Really smart guy. He agreed with the endoscopy specialist that the best course is to first biopsy the one recently enlarged liver lesion rather than first go for the more difficult and uncertain attempt at the bile duct mass. Both lesions grew at the same time. If this is ILC, we might eventually do local treatment on the presumed two rogue mutants, and continue with Xeloda which is controlling the rest of what used to be numerous diffuse liver mets.
I feel so very thankful to be at this NCCN center where these rockstar doctors are conferring. My onc is really listening to me, advocating for me, making sure I see the right people in a timely manner. I love her. So next step is liver biopsy rather than another ERCP, assuming that the biopsy doctor agrees it can be done safely. We will get genomic testing.
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Thank you for your update Shetlandpony. You seem very comfortable with your MO and respect is flowing both directions.
I am happy (you know what I mean) they suspect it is ILC and not a new cancer. At least with ILC, you know the beast. What local treatment do you think might be used? I guess you have to wait for all bx results.
S
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I like the way you put that, SandiBeach — respect flowing in both directions. Yes, much less complicated if this is the known beast. The doc ran through a description of local treatments quite quickly but I remember he liked microwave for the liver lesion and some kind of radiation for the bile duct one. Of course, next thing is the biopsy.
Nkb, good eye! I found a phylogenetic tree of 50 selected horse breeds from Texas A&M University. It shows the Icelandic Horse most closely related to the Norwegian Fjord, and the pair of them most closely related to...the Shetland Pony!
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Shetland- this equine info is very good to know. I plan to seek one out in September.
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Shetland,
Should you head for a microwave ablation of the one spot, I did that on July 5th. It was relatively quick -- in and out of the CT procedure room, home later that day. Felt great on day 2 & 3 -- very tired and some pain for the next week or so ( I probably overdid it on days 2 & 3.). Pain controlled by Tylenol Extra Strength. At almost 3 weeks out, I am pretty much back to normal. Good luck!
Bev
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Shetland, sorry to hear what you've been dealing with, but I agree with Sandi that the devil you know is better than a new cancer. ILC is more treatable than bile duct cancer. Keeping my fingers crossed for you.
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Well this is a fine how-do-you-do! I am stuck in the hospital getting IV antibiotics. I got a low fever and some discomfort in the area of my stent, reported it, and ended up here. They didn’t want me to go home with pills, but rather stay and get IV antibiotics for the 48 hours of waiting for all the cultures to come back. I was happy that we were planning a liver biopsy instead of an ERCP one, but now I fear I am in for an ERCP soon. Waaah! I don’t need complications!
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Shetland- well-that's a crummy deal- I hope you respond quickly to the antibiotics and can get out of there tomorrow. I hope someone will be bringing you something good to eat -let me know if you are nearby and I will conjure up something.
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The hospital has a surprisingly good and varied menu. It’s like ordering room service. I find I can’t eat too much at once because of whatever is happening in my upper abdomen, but the nurses will put things in the fridge for me and bring them later.
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Thanks for the info about the microwave, BevJen.
Hapa, yes. I hope my biopsy does not get delayed.
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Well, blah. At least it sounds like you aren't feeling really sick, but hanging around hospitals are no fun. Hope they let you out of there tomorrow!
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Did anyone see the truck that hit me? Or was it that liver biopsy I just had? My fever subsided and then this happened. I can't believe how much it wiped me out. But I had no pain other than the lidocaine stick. I don't know when I'll go home or how long for results or if they got enough tissue for genomics.
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Whew..so glad you got that liver biopsy. Now you can move forward when results come back to take care of that bile duct.
Is your MO waiting for the bx results before deciding on radiation to that duct?
I am so hoping that you can continue Xeloda with ablation/radiation on the liver lesion/bile duct to get you back on track.
Get pampered in the hospital! Din't forget to move your legs and feet to keep your dance muscles in shape!
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