How are people with liver mets doing?
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Well, this page needs a bump! After our road trip at the end of March, things began going downhill for me. Moving away from Trodelvy, my 1st dose of eribulin (Halaven) put me in the hospital with neutropenic fever. That bought me a week’s worth of IV antibiotics.
Upon discharge, I was home for a little while but then readmitted to investigate the cause of my low back pain. We concluded that cancer had not invaded my spine however 2 steroid injections were only effective for 2-3 days. I skipped chemo for 3 weeks with all that happening.
After that, I asked to start PT & obtained a TENS unit. I once had a friend in that profession call her colleagues “physical terrorists”! My right leg is numb, causing me to rely on a cane for safety. Needless to say, not much house or yard work is getting done.
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Vlnrph - So very sorry to hear about what's been happening for you lately. Good that you bumped the thread. I wish I had some knowledge and ideas for you, but I just don't. I do hope that you find some sort of answers and relief! You do have us, so please continue to let us know how things go. Sending a hug.
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Vlnrph - I will bump the thread too! And add my so sorrys to your current troubles. I can't help either, but know I will add you to my prayer list. My liver biopsy showed a mutation that qualified me for Orserdu and my first scan after starting it three months ago showed some improvement. So maybe some hope?
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Thanks for bumping this thread.
I am stable on Lynparza (3+ years on this treatment). My next scans are mid-July. Still anxiety with each scan, as we all know the stability will only last so long.
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I'll throw in my update too. Just got back from a few days in the hospital as a result of ascites. Lots of ascites. I need to sit down and do research on this more, but I think it's a result of liver mets. And I will tell you that I am never doing that again, even though people keep telling me I will, I WILL NOT!
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Well, looks like I'm joining this group on a more permanent basis now. I've been dropping in here now every once in a while over the last few months, because they've been saying that the spots they've been seeing on my liver now for well over 2 years are looking more and more like metastases. They'd been calling them "hypodense lesions" for years and always reporting the same size. Last fall they were still reporting the same size, but for whatever reason, started referring to the "lesions" as metastases. The oncologist has been wanting me to get a liver biopsy for some time, which I haven't been eager to do, but I did agree to consult with an interventional radiologist about the whole mess. I did that yesterday, and he and his nurse practitioner who was part of the consult, just posted their note to MyChart this morning and they are definitely calling these lesions metastases now. I've asked them all why they are so sure that these same lesions, of the same size, that they have been noting for years now are all of a sudden "metastases" and they say it's because they have gotten better views of them, and they think one is a little larger now. They want to talk to me about Y90 treatment after my next scans that I will get during the first half of June. They tell me it is a 2 day procedure, but that I will go home both days, and will need the driver/escort, etc. They say the procedure can be uncomfortable and that then I will feel like crap for two weeks after. Then I might need more treatment later. So here I am. Talk about ruining an otherwise reasonable decent day!!!! Maybe ruined an otherwise relatively decent week and month too. This disease is just so horrible.
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sending love to you. I don’t come on here much anymore. But I’m going on a year with liver Mets. Way less hair and energy, but doing fine. I wish you the best.
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threetree, I'm so sorry you’ve had to join this thread because your scan found liver metastases.
I want to share some tips and my experience, hoping it helps you navigate what may come next.When the IR says they now have a “better view,” it often means the lesions are becoming metabolically active, in other words, the tumors are now active. The general protocol at this point is usually to perform a biopsy, then either local treatment or change in systemic treatment.
tissue biopsy or liquid biopsy gives lots of information about tumor's DNA, any possible mutations and HER2 status. In your case, it sounds like they might have decided not to perform tissue biopsy because the lesions in your liver are still too small but you can ask for liquid (blood) biopsy instead. your MO may want to keep you on your current treatment plan and locally treat the lesions, which is reasonable if your liver tissue is healthy and there's minimal risk of spread elsewhere.
Y90 radioembolization) is a two-step process. first mapping procedure, a catheter inserted through your groin vein all the way upto your liver. you’ll be lying on your back on the X-ray table, awake but sedated. IR will map out the blood flow to the lesions taking many contrast images. sometimes they’ll ask you to take a deep breath in and hold it. these images show those branches supply blood to the tumors and those that need to be closed off during the Y90. the second step will be scheduled about a week, they’ll again go through your groin. IR will block off the branches that carry blood away from the lesion (to prevent radiation from affecting other parts of the liver/body) and inject the radioactive beads into the vessels that supply the tumors.
Both procedures can be long and require you to lie still for 4–5 hours afterward. The mapping is usually painless, but after the Y90, you may have some discomfort. I recommend having Tylenol or ibuprofen on hand after discharge. you might be given steroids and antibiotics.
Recovery is very important for a few weeks after, avoid standing for long time, lifting heavy items, or doing high activity. rest as much as you can.
despite all the discomfort the good news is that Y90 is effective, it'll kill tumors!
histotripsy is an alternative option, newer and way less invasive treatment and much easier recovery, using ultrasound to destroy tumors.
you’re not alone in this 💗
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Bossmom - Thank you so much for your comments and good wishes. Glad to hear you are still chugging along after a year. This is all just so unpredictable and confusing for us. I wish you the best also, and hope you have a nice holiday week-end.
Snow-Drop - All the information you've provided is so interesting and helpful. I really appreciate it. Yes, they do want to do a biopsy, but I have been dragging my feet about it. The idea of all those "needles and knives", as I call it, and them taking a chunk out of my liver is just terrifying, not to mention all the stuff they want to do afterward, e.g. Y90, possible ablation, change in treatment meds, etc. I did ask about the liquid biopsy business, hoping that might stave off an actual biopsy, but my oncologist says that what he needs to know at this point can only be gotten from a "real" invasive biopsy. He said the liquid ones are definitely useful for lots of things, but not whatever it is he wants to know about this issue. He does have concerns that the genetics of the liver lesions might be different than the rest of my cancer. I was really hoping a liquid biopsy could be my "out", but guess not. Your description of the Y90 is everything I've been dreading too. Just so much to deal with and for some time apparently. My oncologist did tell me about the histotripsy and I'm interested in it, but he says it's still actually considered "experimental" and currently only available at one hospital here in my city right now. They don't do it at my hospital. I brought it up with the interventional radiologist and he too said pretty much the same as the oncologist. He said the location of the tumors makes a difference, because the sound waves used in histotripsy don't go through everything, e.g. bones. He said that they are currently trying to figure out just which types of patients are good candidates for the procedure, and that that is one of the things they're not real up on yet, hence the "experimental" label. Well, like you say, the fact that the Y90 is really successful with tumors could make all the uncomfortableness worth it, but I'm a "slow processor" and it will take me a while to wrap my head around all of this and be willing to "submit". Ugh. Thanks again, Snowdrop, and it is a real comfort to know that I am not alone in this. I am glad for your support.
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@threetree , really, my liver biopsy was kind of a non event. Twilight sedation. Some shoulder pain afterwards but oxy for that
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Thank you, AJ. I know you said before that your biopsy really wasn't too bad at all, and I have remembered. I've been hearing everything from not really a big deal at all to terms like "agonizing", so it sounds like it can have a wide spectrum. I've mentioned theses things to my onc and he says that the "agonizing" sort of thing really is the exception to the rule. I also told the interventional radiologist about all my fears and he too said that they usually aren't too bad. He said they use a real thin needle and that the amount of your liver they take out is actually quite a small, thin bit. He seemed to think the initial lidocaine injection was about the worst part, because it stings so badly. He said the location of the tumor(s) can have a lot to do with just what kind of experience a person has. Some places are just more difficult to reach and work with than others, understandably. I just need some time to talk myself into this. My natural first reaction to these things is to run away and pretend it's not happening. I'm not as brave as many here. I do really appreciate your comments and they help a lot. I'm also glad that you have been doing fairly well for a good long time. Hope you have a nice 3 day week-end too! Looks like much of the rest of the country won't be getting our sun and 70. We're lucky this week-end.
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Oh Dulcea, I must’ve spaced out and missed your post… I’m so sorry for what you’ve been through. I went back to the X thread reading your posts... you mentioned having abdominal pain and that the ultrasound didn’t show anything. I had a similar experience, and I don’t think ultrasound is always a reliable test for diagnosing ascites. did they drain the fluid, or you put on IV antibiotics? I’m so sorry you had to go through all of that. wishing you a speedy recovery and keeping my fingers crossed for Enhertu 💗
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@threetree , yes we are lucky here. The weather and springtime makes me happy. I hope you can figure out the best thing for your liver mets. I know that I’m lucky not to have too many problems with treatments. You just never know how you’ll react to things that they throw our way!
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not to scare you but I had a bad experience with the liver biopsy. I had extreme referred shoulder pain. It was so severe during the biopsy I almost passed out. And had very bad shoulder pain for a few days after. I guess it can happen to people and I’m one of the lucky ones
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AJ - Yes, looks like another nice day that we will have today. It motivates me to get outside and be active. I've noticed that you haven't had a lot of trouble with treatments in general and it's inspirational to know that some get through this fairly well (relatively speaking of course). I think they want to wait for the results from the scans I'm getting somewhere around June 9 before making any further decisions, but they have been wanting to mentally prepare me for what could be down the road. So far both tumor markers and scans are indicating very slow, "iffy", and mild progression, but progression nonetheless.
Bossmom - I appreciate hearing about the bad experiences too, and I'm truly sorry that that happened to you. I like to know about the range of possibilities, because just as with drug side effects, I think that the medical people tend to downplay the negatives that can occur with these medical procedures. I can understand that the majority of procedures go fairly well, but again just like with the drug side effects, for those who might be in the smaller percentages that have serious problems, it's a real big deal! I can't be satisfied with the usual, "Well most people do just fine" sort of thing that the medical people tend to tell you. Not all of us are "most people" and it's important to know the "outside the Bell curve" experiences too. Yes, it probably is most likely you will experience the routine thing, but I think we should all be mentally prepared for the fact that something could occur outside the routine and ordinary. I've heard from several people here who've had bad biopsy experiences, just as I've heard about ones that were "no big deal". I imagine most are somewhere in between, but I appreciate hearing about them all.
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@snow-drop thanks for the well wishes. It was a traumatic experience for me even though the ascites was considered "moderate". I feel like I have become more of a wimp lately though. I had attempted to find out the reason for the abdominal pain a number of times. "Go home and take tylenol". I did finally have a CT which showed very, very mild ascites around my liver. Fast forward a month or so and OH BOY! No one warned me or educated me concerning this.
I am surprised that there is not a lot of information about ascites on here, although that may be a bad sign. I am recovering well but was pretty sick. As for my symptoms leading up to it, I was so hungry all the time (??), all my skin wrinkled up like I hadn't had a drink of water in days, of course my belly become distended (thought it was constipation) and I actually fell twice because my center of balance was off due to the distention (thought it was due to Enhertu). Had my third UTI in my life (related?). There may have been other symptoms too but I feel stupid for thinking it was not ascites since that is what the MO said. Lesson learned.
The good news is that there were no cancer cells in the fluid.
Why has nothing helped my liver mets? It just progresses every three months, but my bones are stable from day 1. Frustrating to say the least, as you all know.
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@dulcea - I'm so sorry for what you're going through. I appreciate you sharing your experience with us and I hope your next treatment is "the one" that finally solves your liver mets. I'm assuming local treatments are not an option?
@threetree - I've had two liver biopsies; both were uneventful. I did need some pain relief at the hospital after the first one, but was fine after that. The second one was essentially painless, and my biggest "reaction" was to the adhesive on the stupid latex free bandaid they used.
I'm coming up on my 5 year cancerversary - still on my first line treatment (Verzenio and anastrozole). Thanking God and crossing my fingers at the same time.
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@seeq Five years on your first treatment? Wow! That's great. Praise the Lord! I just had my ninth cancerversary but I am on my fifth treatment. I also am allergic to adhesives and am very vocal about anything they use on me. My bone mets have been quiet for a long time so we are targeting the liver mets now. Just taking it one day at a time.
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Threetree- I too do not want to scare you, but here is my liver biopsy experience. I had a liver biopsy in 2017 to diagnose the liver lesion as indeed mets from breast cancer. It was relatively easy. Not too much discomfort. Sore after but healed quickly. My second liver biopsy was in 2021 due to progression, and we wanted to look for mutations and changes in hormone receptors. It was not so good. The interventional radiologist that did the biopsy (different radiologist and different facility) could not seem to get a good sample. He kept poking and prodding. I was on the biopsy table for 3 HOURS!!! 5 days later I developed a blood clot in the lung- a PE. If I need a biopsy in the future (which is a good possibility) I am going to verify that the interventional radiologist has experience in liver biopsies and tell them they get 1 chance to get a good sample and that is it.
Moral to the story: ask about the doctor's experience and speak up for yourself.
As far as the Y90, my previous MO did suggest the procedure, but I did not ever do it. I am still doing well on systemic treatment. I have read on here about others that did the Y90. They got some more time, but still eventually passed, as the cancer is still there microscopically. They cannot get every cell.
Each person has to research and do what they feel is right for them.
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@threetree You echo my opinions in the above advice to Bossmom. I always want to see the statistics but realize that none of us are just a “number”! I also have scans coming up in early June. My palliative care physician has given me a respite in the form of a Medrol Dospak
PT was not really helping my low back pain due to herniated discs. The steroid taper is just a temporary fix so I need to be careful in my choice of activities. Laundry is a priority! Yesterday, 3 friends came over to clean up my yard. It’s not had much attention over the past couple seasons.
Once eribulin fails, I can go to vinorelbine (Navalbine). My oncologist mentioned phase 1 clinical trials however I’m not interested in dose finding studies. Due to pre-meds & other treatment parameters, I haven’t had any diarrhea and don’t care to experience that with a new chemo…
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Dulcea - Like Seeq, I am wondering if local therapies are or aren't an option for you. You've described chemo treatments, but have they offered you anything like Y90, ablation, histotripsy, etc?
Seeq - Thank you very much for describing your biopsy experiences. Every bit of information is helpful to me. Did you have to have two biopsies because you developed more lesions later? Also, I absolutely know what you mean about the adhesive being THE problem sometimes. I too have sensitivities and have sometimes had no troubles other than the tape they use, and it can be bad! Hearing that you've gone five years with liver mets is very inspirational for sure. That is truly a wonder to behold and I'm real happy for you!
Candy - Don't worry about possibly scaring me. I want to hear it all, besides this whole breast cancer business is nothing but scary to me - everything about it, so what's one more thing anyway 😉? Yes, right now I'm looking at what you experienced with your first biopsy I think. They want to confirm that it is indeed mets (they seem sure anyway) and get the genetics/pathology info, so they can decide next steps. I sure hope I don't have to have more than one, but from what I'm seeing with these liver mets (always seem to become numerous), it might be par for the course? Re getting a good sample and possibly having complications, the interventional radiologist I spoke with said so much of that depends on the location and size, etc. of the lesion itself. He said the needle they use is very thin and usually all goes well. I mentioned to him what Intolight had reported about 3 attempts through different ribs, winding up with lots of pain, and he suggested that that would have been a location issue. He doesn't think at this point that I have any significant location problems and that the lesion they want to biopsy currently appears to be "easily" reachable. As for the level of experience these people have, I agree with you absolutely about researching their backgrounds and experience levels. The interventional radiologist I spoke with seems to be some sort of "division or section head"? and a bit more than "just" an interventional radiologist and he did seem to know his stuff when he spoke with me. I also liked that he was very thorough, explained things in detail, and was very open to questions and took time to give detailed answers. That's a big one for me. I asked him if he would be doing the procedure and he said that I could request him and that then he would do it, but otherwise it would likely be assigned to "any of his colleagues", so I am going to ask my onc to make the referral specifically to the IR I spoke with. "Any colleague" isn't good enough for me. Re the Y90 and other possible procedures they've brought up, I think they have to get all those specifics from the biopsy before they know what they might actually really do. I also might want to consult with someone at the only hospital here in my city that does the histotripsy. I want to learn more about that and they don't do it at my regular clinic/hospital system. Thank you so much, Candy, for taking the time to give so much detail. It's very helpful.
Vlnrph - I'm sorry that you've got the disc problems that you do, and I hope the steroids help. No fun at all! That said, it is so nice that you had 3 friends who would come help you with your yard! I don't live in a house any more, so no yard concerns here, but if I did, I don't think I know of three friends who would be willing to do that. All my friends are older now too and have their own health problems and wouldn't be up to yard work. You are very lucky there! I don't know if I'd do a clinical trial or not. I guess it's a bridge you have to cross if and when you get to it. I hope this Eribulin gives you some relief and works for a long time.
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@seeq @threetree from my initial stage IV diagnosis, my liver mets were small but "innumerable" and greater than 20. I believe it was less than 3 liver mets requirement at the time for local therapy. I will ask my MO next time as well as my second opinion doctor. I hope they would have suggested it if it was ever an option. I might question another liver biopsy too since my liver seems to be on it's own course compared to my bones. The original biopsy showed cancer consistent with BC and with the same mutations at the blood biopsy, so I'm not sure it's worth it.
threetree, I am another whose liver biopsy was uneventful. Went in, had novacaine and light sedation, had it done, had a sandwich, they made me lie on my liver side for and hour or so (or longer?), took a nap, went home. The novacaine was the worst part and I think that was what actually hurt afterwards. No significant pain afterwards.
@intolight nine years! You go girl!
@vlnrph I commiserate with you on the herniated disks. Mine had been calming down a bit until I went to the hospital for a few days and their beds have made things worse.
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Dulcea - Thanks for clarifying your situation. I know that when there are many lesions they are more limited in what they can do, but from what the interventional radiologist told me, they can sometimes combine treatments and get better results. As an example, they said that they might be able to do Y90 on my larger lesion and then use another ablation technique on the other smaller ones (they think I might have 5 spots altogether). I'm also interested in learning more about this new technique called "histotripsy". My understanding is that one of it's advantages is that it can treat multiple mets all at the same time, and I'm wondering if that could be of help to you. I know little about this though, so I'm no expert. The other "nice" thing about it is that it is non-invasive. They use sound waves that wind up liquifying the lesions and then they are just absorbed into your body and gone. Just how many they could do, I don't know, but my sense was that it was a lot. It's also still deemed "experimental" and not available everywhere. I live in a major city and there is only one hospital here that does it. I was thinking about requesting a consultation with them though, just to learn more about it. It does have limitations and one example the interventional radiologist gave me was that of the inability of sound waves to travel through bone, so if a lesion is behind a rib or something, it might not work on that particular spot. Again though, my understanding is that they can employ these various techniques in different ways and in different locations and that way they can get more than they could otherwise. I do really hope they can offer you some or all of these possibilities since the chemo hasn't exactly been stellar so far.
Thanks too for telling me about how your biopsy went. Yours sounds like what the interventional radiologist told me was typical. Like you, he said that the lidocaine they use going in was usually the worst part, because it stings so badly. I'm glad to know that you had a reasonably good experience and haven't had to have more.
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@threetree - I had a second biopsy when something subtle showed up on two sequential PET-CT and MRI scans about 1½ years ago. The second biopsy suggested it was a previously treated lesion. It hasn't shown up on any scans since then.
@dulcea - I had large and numerous liver mets at initial dx. I don't know if that disqualifies me for local treatments in the future, but I will be asking about it when the time comes. Histotripsy sounds promising. I was under the impression that it's approved for other types of liver tumors, but maybe still experimental for bc liver mets, for now. That's how the other local treatments started out, too.
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Seeq - Thank you for the info re your second biopsy. Very glad to hear that the spot doesn't show up anymore!
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@dulcea My thoughts exactly regarding a herniated disc in the spine made worse or caused by the hospital bed! I landed as an inpatient twice last month, first for neutropenic fever. After a week of IV antibiotic, I was discharged but went back to investigate my low back pain…
When I met my 1st interventional radiologist, it occurred to me that here was a doctor who began a residency thinking they would be looking at films or computers all day. However, they must have decided having a little patient interaction would be more interesting & rewarding.
Either that or they didn’t have the mindset to be a surgeon but could do some invasive work to help people with diagnosis/treatment. How nice you could have a sandwich after the procedure. I now make a practice to bring a bag of pre-packaged snacks to all my appointments.
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@vlnrph I also wondered about the IR doctors. Do they go into it thinking they will be poking people? I know regular radiologists do (ie. in the Breast Care Center etc.). Thankful for them anyway. I have had a few very experienced IR Docs.
I now have a hospital bag at the ready. Besides having babies and one night for a mastectomy, I have never stayed overnight in the hospital. It won't help my back but it will make my life a little more comfortable there. My family or I can grab it if needed.
Snacks are a good idea too!
@seeq I also will be asking about local treatment so thanks to @threetree for the info. I won't get my hopes up though. I wonder if larger ones are easier to target.
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The interventional radiologists are an interesting group because they're a combo of radiologist and general surgeon. I'd never heard of them before I got into this breast cancer business, and then only when I had to go for a bone biopsy. I don't know just when they emerged on the scene or how much experience they generally have. The one who did my bone biopsy seemed to know what she was doing and she really put me at ease too. Sometime later I read her online bio, and she had been a military doctor for years initially. I had wondered if she could do this liver biopsy they want me to get, but I found out she got "kicked upstairs" so is no longer available for actual procedures. Seems like when they do get experience they can be pulled from day to day work for administrative roles, but then that sort of thing happens in all kinds of work/business systems.
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I also have been following this topic, as I have what are called "hepatic cysts" on my CT scans, and have wondered if these provide an easy target for mets.
I will be thinking positive thoughts for you as well as crossing my fingers for a good outcome.
I wish you peace and quick healing.
Eleanora
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Eleanora - Thank you very much for the good wishes. They are very helpful.
Re the hepatic cysts, my basic understanding is that they are quite common and usually no big deal at all. When I had all those initial scans when I was first diagnosed in 2018, my surgeon pointed out a cyst on my liver and told me it all that, i.e. that it was nothing to worry about and lots of people have them. Throughout this treatment business the radiologists who have read my scans point out that same cyst sometimes, and never bother to mention it at others. It seems to just sit there doing nothing. When I had this consultation with the interventional radiologist recently, he pretty much said the same thing. He walked me through a lot of my old scans to show the evolution of things, and he too indicated that those routine cysts just kind of sit there and are nothing in particular that they worry about. No doctor has ever told me that having a cyst could make you more prone to liver mets, but I can see how you could wonder and worry about that. If these doctors hadn't told me what they did, I would bet that I'd be more concerned about a cyst too and wondering if it was just some sort of precursor to something like mets. Hope this helps in some way.
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