How are people with liver mets doing?
Comments
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Hope, I'm so sorry you had so much pain, and a frustrating ER experience. Glad to hear you're starting to feel a little better - and surprised you're still considering another y90 treatment. You're a tough lady.
BAP - I hope you get some answers that calm your mind soon. There's got to be a way your docs can answer your questions.
LFF - Hoping for the best news possible - whatever that is.
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BAP: I think the pseudocirrhosis is just an artifact from having killed the diffuse mets, and that since the cause is known, the cirrhosis is not going to progress as the cause is eliminated. If the pseudocirrhosis had a different cause, a liver disease, there might be more need to worry. Your highest liver values in my opinion are no where near dangerous. It is when liver values get many multiples outside of the range where it indicates a life threatening condition. Or a duct is blocked and bilirubin values climb. I really hope your doctor can set your mind at ease. The pseudocirrhosis is more of an observation, a physical feature that shows up on the mri, than a diagnoses. The radiologist who writes up the reports on my wife's MRI's always says something along the line of cirrhosis or pseudo. And time and time again the Oncologist pretty much brushes it off.
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Husband,
Thanks again for commenting regarding this. It really does put my mind at some ease
I called my nurse due to some other symptoms and made sure to mention that as well. So she sent a message to my MO and hopefully she will give me a call. You're right in that my Enzymes are good and pretty much what I'd expect given the circumstances. I've been off chemo for a month so perhaps they're lowering. I think I've reached a level of frustration yesterday where it felt like I was damned if I did, and damned if I didn't (do the treatment). Of course, when you google all this , it paints a very bleak picture. I felt like " Okay, I can do this for the mets, things are improving!" But then when you see things are improving but " Oh by way your liver is damaged from everything and that can be detrimental to you" it felt like all of a sudden I was swimming against the current...again. I always like to think that I'm super level headed and rational, but sometimes I'm get overwhelmed by this whole experience. I'm 33 and have been doing this for 3 years , and I possibly had a mini snap yesterday about how unfair it all is. I really do appreciate your help. It puts things in perspective for sure.
If my MO calls, I'll update so if someone else is looking for answers on this particular issue, they might find some comfort here
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LFF- Thinking of you for your scan.
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LFF..we understand, the fear can be overwhelming. Positive energy that your scans will be better than you think and you can get the tx you need and to continue your life.
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thanks for being in my pocket. No new lesions seen on this scan. Several are gone. There are a few ( like 10) that are slightly larger by a few mm. RO not worried as difference could be as simple as comparing new scan to one taken years ago. Different machines, different measurements. Will rescan head in 3 months.
Now yo move up CT/ ZpEY scan to see if there is any systemic reason for the change in my tumor markers.
One weight lifted.
Thanks for the support.
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Anyone heard from JFL or Bliss yet?
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Dear BAP, I can only second to what Husband11 said. My wife's ultrasounds show small dots in liver, that stayed not changed in past 40+ months, and ultrasound specialist call it fibrosis. MRI though looks smooth with good echogeneity all over liver. So, I'd better call it fibrosis than cirrhosis, i.e. scar tissue that will stay always the same. Your liver numbers seem good, and some liver ferments or cordyceps synensis, could bring them down. Please, ask your MO to prescribe something - liver, even healthy, sometimes needs little help, depending on your diet or other regiments.
Nicole, good point. We for so long haven't heard from JFL and Bliss...
Sauius
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Salius,
Thank you for chiming in as well That is comforting . I think what bothered me as well is that it mentioned my portal vein has decreased in size but was unobstructed (which I know is good) . I do think I just had one of those moments of overwhelm and frustration that I’m dealing with any of this. I take things in stride a lot. But the other day I had a hard time. I’m feeling a lot better about everything My MO did call and apologized that this caused me stress . She basically said the same as you and husband and that if it was an important finding , we would have discussed it. She said it’s one of those things they see reported quite often and they just file it away because it doesn’t change liver function (which is not what ive read but I’ll trust my MO over the Internet) .
Ive been having a lot of fatigue and some upper GI pressure which was compounding my anxiety( for obvious reasons) butwe agreed it could be tamoxifen (since I just restarted it a month ago) . She even gave me the option of taking a break from it to see , and said the latest scan was so good that she’d be comfortable with that if that’s what I wanted. I don’t want to stop it but it’s nice to know.
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Cross posting with a couple of my go-to Threads----
Ok I am home from my MO appt and want to post while it is fresh in my mind. Though I am very tired from the long day--- travel to the center, lab work, MO appointment, and Xgeva injection.
So the conversation took a turn I was not expecting. 3 months ago, my MO presented my case to the liver tumor board and came back to me that they did not have any recommendations but "watch and wait" for now. So, this time I was thinking systemic treatment change options. I was ready to discuss PARP's or Xeloda due to my biopsy results (biopsy done in April). I had my scans on Friday and had not seen the results before today's appointment. Scans this time show I had 1-3mm changes in all 4 liver mets again this time. So, since last September, there have been small increases of 1-6mm in each tumor each scan. Slow, steady growth. So today my MO starts discussing liver resection or ablation. I said "I thought the liver board did not advise on that". She said she will ask them again. She said that she hates to change me to a PARP yet. That they are hard on the blood counts and that prolonged use of PARP's can cause leukemia. ??!! That she wants to zap these tumors and keep me on Ibrance/Letrozole. That we can use I/L for a long time with minimal side effects, I guess minimal compared to other meds.
So now I am at a loss as to what I should do.
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Candy, Is there a way for you to have a consult with an Interventional Radiologist about the options your MO mentioned? I think you could get a lot of info specific to your own situation if you did. My consult was set up by my MO’s office. If you could have a local treatment to take care of the mets and stay on I/L afterwards, that sounds good to me. It sounds like the small progression and no new mets makes you a candidate for local treatment. An IR could explain which treatment would be best and why.
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Candy- resection(surgery) is the gold standard. “Get it out if possible!” Remember the liver regenerates. I know there are complications to this major surgery, but seriously consider it.
I was supposed to have surgery but was told to find a systemic that worked first. That did not happen in time, so I chose y-90 to whack-a-mole the liver and SBRT to the lung.
So I agree with others- consult an oncology surgeon and an IR specialist in local liver treatments, even an RO for SBRT which is now being performed on the liver. They will each give you their perspective, risks and benefits. You can then make an informed choice.
My humble opinion, not intended for medical advice 😉
Dee
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I do need more specific-to-my-situation information. Seems my MO wants to do the consulting, talking with her colleagues. But I want a chance to ask questions. I will message MO nurse and ask how this goes. Do I make appts with IR, RO, surgery for discussions or what.
AlabamaDee- I guess resection sounds the best as far as "get it out". My tumors are in segment 3 and 4 of the liver. But, I live alone with no support system. Major surgery and recovery sounds daunting when dealing with it all alone.
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Dear Candy, wow, I am impressed by your MO - he/she is really proactive and in control. Respect. I know it is frightening but if it can be resected, it is a big and good thing. There's a probability, that if resection is successful, your liver can be cured (damn, I am not afraid to use this word anymore!), regenerate, and if you can control your bones, you can live forever. It is good things are slow-progressing, so that your time-window for decisions is not limited. As for living alone... your friends/relatives should come and stay with you, or at least visit you daily, or stay overnight - this is the least thing that anyone could do for a friend. Saulius
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Candy re-section in "theory" I think is awesome..but I have heard that when the liver re-generates it does so (most often) with cancer in the new growth......also that is a surgery and may be a very hard recovery.....
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So I have been thinking about all this. I have been up since 5am with my mind busy. It is now 8am. So...
1. If resection is "gold standard" then why are not more on here getting that surgery?
2. Several on here have had local therapies--- Y90, ablation, etc. But it seems by the posts that they, the patient, started the conversation and sought out the IR and the procedure. Why are not more MO's being the one to bring up this topic and pursuing this option?
3. Seems the ones are here if there is progression then they go to another systemic treatment.
I see the theory of getting rid of the tumors (especially if they are in the same area of the liver), but as Nicole said, a new tumor can pop up somewhere else in the liver. And this is a BIG surgery and a lot to go thru just to possibly have another pop up later. Do I really want to go thru all that????
BSandra Yes a friend should help out. But..... people have lives of their own. One of my friends is having health issues herself. I could not ask her to stay with me when she is ill herself. Another friend works full time, like 6 days a week, 48 hours a week. My circle of friends is small. Most are older and have issues with health of themselves or their spouse. My family, ha, that is another story. I have a dysfunctional family. No help there.
I just need more info--- risks and benefits of each treatment. Downtime, pain factor, being off my blood thinner (I had a PE in May), where is my tumors- close to ducts or colon wall or blood vessels.
Do I meet with the RO or IR or surgeon? For an office visit or Zoom? To discuss pros and cons. Can I meet with the Liver Tumor Board?
What do I do??????
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Candy...yes a new tumor can pop up at anytime...but what I was saying above is that when the new section grows back it most times grows back with cancer in it....(Just want to make sure you know what I meant). Like...I had the Y90 and it killed all the tumors in my liver ...essentially my liver WAS NEAD...but I believe now...6 months later I have a new tumor or tumors (s) as I have pain in a new area and my itchy bites are acting up...which for me, is indicative of cancer growing in the liver
.......I would consult with an RO, then IR and then Surgeon . I don't believe they all do that at the same time unless of course you are using all the doctors from the same place (same cancer center etc). I did consults via tele med (zoom) so I am sure you can as well they just need your discs of your scans.
You just need to start setting up those appts and see which will have least side effects, least risk and least down time.
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Nicole- I understood you.
And it may or may not come back elsewhere in the liver. I guess I want guarantees. Go thru a major surgery and be cancer free in the liver at least. But, to go thru major surgery and then have cancer in the liver again, well crap. 0 -
Candy- you have good questions that only the doctors can answer. Living alone with no support can be a problem for surgery. I would ask your MO to get referrals for the appointments with the 3 specialists. You deserve to talk to them yourself if you want. It’s your life and your body. Hoping for the best!
Dee
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Update---
I messaged my MO nurse (thru the portal, I use that A LOT) and asked how this will all go. She said my MO will meet with the Liver Tumor Board and discuss my case. They meet on a weekly basis. Then she will contact me with what they recommend.
And, I asked about a Zoom appt with the RO or IR. The nurse said that I would go thru my MO with questions/ pros and cons to decide. And whatever I/we decide, then the "procedure" would be scheduled. That the IR does not meet with patients for appointments. They just do the procedure ordered by the MO.
So you all that "talk" with your IR, you are lucky, I guess. Doesn't work that way here.
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Candy, Edited: just saw your update, most of what I wrote about meeting with an IR is not applicable anymore, so I deleted that part
As far as immediate care after a procedure, I know someone who stayed extra nights in the hospital due to living alone. I would imagine this would be covered by insurance because it's medically necessary?
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I will speak up as a minority on the subject of liver rescue toon. I had one back in July 3015 for a single tumor. I then had several years of NED in my liver before I had another liver tumor show up. Maybe I was lucky but I was out of the hospital in 3 days and taking care of my 4 kids in my own 4 days after. The hardest part of recovery for me was the hepronnshoyts I age to give myself for a few weeks and the dangers taking blood thinners can bring. I had no complications.
Happy to discuss the experience in more detail if anyone wants.
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Rosie- I would have to look into the staying extra nights at the hospital. I do not know how that works with insurance. It would be done at my larger cancer facility, not my rural community hospital. So I would be at the larger hospital 2 hours away from home.
Thanks LFF for your input. I had my mastectomy and went home from the hospital the next day. I was alone at home. I had a dressing and a drain. But it was hard.
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I appreciate that Candy. Recovering by yourself is hard. It would be helpful if you could get some hrlp. Maybe insurance could pay for at home care for a few days? Probably less expensive than them paying for extra days in the hospital.
I hope you find something that can work for you.
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Candy- it may help put hour mine at ease if you can discuss your insurance coverage for different scenarios in advance. As far as why more people don't do it? In my case, it was not an option. My two largest tumors were too large, independently, to consider resection, and I had numerous others.
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Candy, I am dropping in here. I had liver ablation of my one tumor 3.5 years ago, and my liver has remained clear. While, I still have small lung nodules that keep me way too focused on cancer and treatments, I am very grateful that I had the liver ablation and don't have to stress about that area of my body. I live alone also, and I am always asked when I have a procedure if I have help. I believe you can stay in the hospital longer or get home health care. While this isn't brought up at your regular oncologists office, it is usually brought up when you have a procedure. ~Kar
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I don't know, candy. I know you are more accepting than I am. I have tumors in my liver and you are telling me, doc, that I am not allowed to consult with doctors who specialize in treating liver tumors?? No. I'm going to have a conversation with some experts and not play this game of passing questions through a middleman. It is not fair for her to ask you to consider liver surgery but not allow you to have a conversation with the expert in that and in alternative treatments. When a person has a conversation with a doctor, the answer to one question prompts the next question, and the patient's input tells the doctor what to bring up next. One needs more than someone to relay one or two questions. Also I wonder if liver resection is the only thing on offer because that is all they know how to do at that hospital? That seems the most difficult option. (?) What about microwave ablation, Y90, SBRT etc? Your onc would not want a PCP directing your cancer treatment and trying to answer all your questions because the PCP does not have the expertise. Why should she direct your local liver treatment and pretend to answer your questions about it? There are times when a specialist is appropriate. I'm sorry if I seem I unrealistic and I know I don't know how it is where you are. I just think that I would push back when so much is at stake.
Also, please make sure you can discuss this need with your onc and not just relay it through the nurse! Sometimes nurses try too much to protect the doctor from patients, or they take on more power than they should.
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SP- I am in agreeance with your post.
I use the patient portal messaging system in between face to face appointments with my MO. I know the messaging system is monitored by the nurse, who takes those messages to the doctor (I hope). I messaged yesterday, after my Monday appt. The nurse said that the liver board meets weekly at the end of the week. And, after they discuss my case, the nurse or my MO will reach out to me with what recommendations the tumor board had. I did mention that I would like to have a discussion with the RO or IR, even with Zoom or phone, and was told what I was told, that they do the ordered procedure and that I would ask my questions to the MO. I know my MO is not the expert in these procedures, and that concerns me. I voiced my concern in my portal message. But what can I do? If the system doesn't work the way we think it should, we may not be able to change the system.
My MO did lean toward resection, as my tumors are all in segment 3 and 4. But she also mentioned ablation or radiation (SBRT?).
I will just have to see how the conversation goes. I can see the rationale of zapping them, and keeping me on I/L longer, but I am not totally on board with local therapies either. Not risk free.
And, if they are growing while on I/L, then wouldn't they (or new ones) grow if I stay on I/L????? Sounds like I/L is helping some (with the slow growth) but not working as good as it used to or should. Sounds like systemic treatment needs to be tweaked. And how about my bone mets?? No bone scan in a year, no PET in 2 years.
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Candy..something sounds wrong with this medical group.
You NEED to see a RO asap. My IR spends all day in surgery but is in contact with my RO. Please be a pain in the butt and insist on this appt. The MO should be able to set appt up, otherwise call RO office.
Is this a community based hospital or are you at a cancer center?
I was never a candidate for surgery, my liver mets in 2016 were many tumors and diffuse. My MO said probably in both lymphatic and blood systems.
I had successful SBRT to one 2 cm liver met just recently. Unfortunately, while it was dying a whole new crop appeared.
Msybe your MO is thinking you are oligometastiatc? But you have cancer in bone?.
You need answers and I hope they will get this straightened out for you, otherwise another opinion is wise. Personally, if you like your MO and don't want to change, call the RO office directly.
S
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Sandibeach- The cancer center I am going to is a NCI designated center in a large city. It is not my old, rural cancer office that I got treatment from before. The hospital where I had the liver biopsy and where I would have any ablations or such would be a large city hospital.
I guess I will wait and see what the Liver Tumor Board recommends. I cannot attend the Liver Tumor Board meeting, right? I do not think patients attend those at any cancer center. Then, when they recommend whatever, I will ask about meeting with a RO and see if that is possible. RO is for radiation, SBRT, right? IR would be ablations, etc, right?
I think my MO thinks I have oligoprogression. Meaning that I have no new liver mets, and the current 4 are all growing at a slow pace, for now at least. Yes, I have bone mets. My MO says they are stable, though I wonder how she knows since I have not had a bone scan in 1 year and last PET was 2 years ago. But the CT of the chest mentions the sclerotic areas on the spine that is visualized on the CT.
I do not have another cancer center around here for another opinion. Just the rural office in my hometown, and my current cancer center, that is 2 hours away--- NCI designated.
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