I have mentally hit rock bottom. I have a question though. I see many women post that they have mets to their liver.
What I think and what I am trying to understand is that I seen a photo of a breast cancer tumor and a 5 cm tumor is the size of a lemon.
I have three tumors, one is 5.1, one is 7.1 and one is 11.1 cm in my liver as of my last scan on 8/23. Now that I know what the size of a 5 cm tumor looks like, is my breast cancer that is now in my liver (this started in Feb. of this year) is considered more advanced.
My palliative care doctor started to tell me I should start hospice at home, even though for now I can walk, shower, take care of myself. She said it would be better for me to start getting hospice at home now. She said I would be given a case worker who will come here to talk with me to see what my needs are.
My palliative care doctor (Dr. Egan) works at the same cancer center as my onco. I adore Dr. Egan...I have no faith in Dr. Burdette at all.
But is my cancer in my liver much more advanced than most ladies who just state I have mets to the liver. Dr. Egan tries to be very kind. She understands the difficulty of living alone and how hard it is for me. Yesterday, she mentioned adding a anti-depressant and I said NO, enough meds already.
So for those of you who have it in your liver, do you have tumors and several of them. I do not know if what I have in my liver is much more advanced or is what other ladies have also.
Dr. Egan, without coming out and saying it (she of course has access to my scans also) made me think that the cancer in my liver is much more advanced than most. I would appreciate if somebody could let me know.
I would appreciate if those who have it in their liver let me know. Financially, things are getting harder. A former coworker, who I had not seen in about 6 years and suddenly got back in touch with me has agreed to be my health care proxy, and I have named her on my life insurance and a cancer volunteer lawyer is calling me tomorrow to do a power of attorney.
I mean this is someone I was friendly with but that that close too but she offered and I had nobody else and I know she has money (alot that her father left her) so she would not be doing it for a few thousand dollars.
But it shows how far removed I am from anybody who really cares. Thanks for responding. If I am sure I am done with treatment, I will remove myself from this board (after all this is supposed to be for support, encouragement, and my depression and giving up is not what ladies on this board need to be reading. So then I guess there has to be a forum board somewhere for people who are going to pass from their cancer and know it.
Nobody is going to come to visit me in the hospital, nobody is going to visit me in hospice. And even the former coworker, we have never spoken by phone, it has all through been email. But I had nobody else.
My onco is supposed to call me on 10/7. Something about piqray (NOPE) and something called Enshur (I know that spelling is wrong), but the other two months on treatment did not work so I lost time by taking them.
Thank you in advance.
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Dear Kearnan: I don’t have a specific response to your questions. However, my heart is heavy as I read your post. I pray you seek God through His Word, the Holy Bible, and He gives you wisdom on which path to take and peace of mind about your future both here and eternally. May you get comfort as you seek His will for you.
Thank you for your kind reply. I do read the Bible but I am quite angry with God right now I do not pray for a miracle. All I pray for is that it happens quick and with as little pain as possible. I am just tired. At this point, I am thinking my onco is just throwing stuff at me and I am at the point where quality of life is much more important than quantity. I never married, have no children, have no siblings, so I do not have the desire that many women on here have to fight to the end. I guess if I had attachments to people like children, grandchildren, maybe I would feel like they do. I am just tired.
Dear Kearnan: I understand. The whole roller coaster of MBC is frustrating & very tiring at times. I’m a big advocate of Quality of Life too. I have found that reading the Bible & trusting in Jesus Christ’s finished work on the cross to save me from my sins gives me hope & grace each day in this life and even more in eternity where there will be no tears, disease, & death.
I pray for a painless death too. The New Testament teaches that when Christians are absent from the body, we are present with the Lord. That gives me great peace.
God certainly uses the trials of life to draw us to full dependence & hope in Him. I pray your anger is transformed into trusting and loving God.
This life is so temporary compared to eternity.
You are a very smart person who has suffered much emotionally and physically.
As Christ said, “Come to Me, all you who labor and are heavy laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and lowly in heart, and you will find rest for your souls. For My yoke is easy and My burden is light.” Matthew 11:28-30
its difficult to say whether theres too much cancer in your liver to treat as theres so many factors to take into consideration. Id advise asking the doctor who you trust and telling them your concerns.
If you dont want treatment then palliative care would be appropriate as they will manage any pain you might experience.
stay positive,I too have it on my liver first diagnosed 2020, it’s in many other places too but so far it’s treatable ,my last bloods showed liver function up so stay strong just a matter of getting chemo to blast it ,wishing you all my love 😍
Thank you for replying. I have been in palliative care for over two years now. I am on 75 mg. fentanyl pain patch, plus 20 mg. oxycodones, I get 240 per month. But now after two years, they are almost like aspirin.
The other day I felt so very sick. It was awful and I thought OMG....here it comes. Then when I looked at my calendar I realized I had left the pain patch on one day too long. (You are supposed to change it every 73 hours.)
I instantly realized my mistake and put a new patch on and within one hour, I felt normal. So what I was going through was fentanyl withdrawal. It was not pleasant and I will not make that mistake again. At this point, I do not know how much more they can do.
Please consider the anti depressant. I have been taking Effexor since my dx and it has helped me handle the ups and downs of MBC. Even if you decide you are done with treatment it will help you live your remaining days to the fullest.
I have been on xanax for over 20 years. I was prescribed it so many years ago before it was even a controlled substance and they did not realize how addictive it is. I tried about 10 years ago to find two withdrawal specialists and they both told me I had been on xanax for so long, it would be too hard to wean me off it so just to stay on it.
So I am on 4 mg. of xanax per day, ambien to sleep, inhaler to breathe, fentanyl pain patch and oxycodone bc of the pain in my spine and gabapentin bc of the pain in my breast.
I have severe dry mouth bc of all these meds. I have to have gum with me at all times bc it gets so bad that I can't even talk or it sounds like I am drunk. So I need to chew gum.
I cannot deal with another medication. I am already terrified that if I start hospice, that they will not give me all the medications I am on now, and that I will go through withdrawal.
My palliative care doctor (who worked in hospice for 10 years tells me that they will not do that). If I start hospice, then I lose my palliative care doctor from the cancer center and they take over.
A heck YEAH! to the antidepressant as Nshaft states. Watch for Seratonin syndrome - and mention to pallative care as your other meds will dictate what should be prescribed.
Liver mets - ive got 3. 13mm, 1.9cm, and 8mm Dx in 2021 after 5 years remission with Arimidex. I am early stages, BRCA2 and liver functions are normal. On ibrance, Xgeva and Faslodex. There are 10+ lines of treatment for MBC. Get another opinion. Get a liver biopsy so you know what type of cancer you are treating or the treatment will not work.
I've read your comments, Kiernan, and my heart goes out to you. You live in literally the medical capital of the world, and have a grouchy onc you have outgrown. Its a total pain in the ass, but get another set of eyes on your history and formulate a better plan moving ahead. As for financials - there is always a work around with payment and you may need a patient advocate to see what you qualify for and help you get additional resources. Check with the American Cancer society to see what is available in your area.
It is worth it. You are worth it. Hospice sounds like a great idea and I encourage you to do that in addition to the other things you are doing to regain a sense of control of your situation. Hospice is not just for end of life: it is for at home care.
I have a 15 cm tumor, a 12 cm tumor, a 8 cm tumor and now numerous other tumors that grew so quickly from my last Scan on August 23rd. None of the grown ones are less than 5 cm and new ones she said are all over my liver and this rapid growth was just from August 23rd.
Very sorry to hear this, Kiernan. I do hope you are reading fellow posters/sisters and know that you are in our thoughts and not alone.
Read your recent updates and emapthise with your situation. Unless your palliative care team is coming to your home, I suggest you start hospice now because you can still organize and plan. Many wait too long for this step and cheat themselves of the full benefit Hospice can offer.
My Father died from primary liver cancer 7 years ago and declined any treatment. He had an oncologist who was in no way helpful and my Dad decided to focus on spending his last months living on his terms. There is power in that, making your choices for yourself and the dignity you have by making your own decisions. He worked on his end of life plan, called “The Five Wishes” so that when he could not advocate for himself, he had a document that clearly stated what to do to make him more comfortable.
Patients are in the driver’s seat, always.
I often think what could have been had my Dad had better medical care from the get go. Once my Dad declined treatment, he was then ‘written off’ by his doctor, pushed to palliative and things eventually came to a predictable conclusion 6 months later. And that was 100% my Dads choice, and he was comfortable and passed at home surrounded by his hospice nurses and his family just the way he wanted it (given the circumstances). Unfortunately, he only started hospice in his final two weeks. They were a godsend and should have been onboarded much, much earlier.
I wish you all the best on your journey, wherever it takes you. Just make sure it’s on your terms, not by some medical ego who is ‘phoning it in’.
You deserve better than that- we all do. I wish you peace and love. Sending hugs.
everyone's cancer progresses different. hard to say if yours is more advanced than another...by that I think you mean aggressive? but yes, I will say your cancer is probably 'advancing'/'spreading quicker than some others....but also, you are on no treatment meds. are you 100% sure you want to stop treatment. your notes make me wonder if you are really ready to give up on treatment. you could still give that zeloda at 1/2 dose (2,000mg/day) a try and see if more tolerable on lower dose? please do some real soul searching on that question.
also, I have another suggestion. you yourself have said that 'mentally you are hitting rock bottom'. we all have our 'breaking point'. could you let your palliative care doc, Dr. Egan, know you are experiencing a severe 'mental crisis', due to your disease progression, and need to speak to a psychologist/therapist asap. you need a 'real' human to speak to who can help you sort your feelings....no matter what your decision. it is amazing you have made it thus far without outside help....you are a very strong woman. but kearnan... I truly believe you would benefit greatly by talking to a professional. and an 'in-person' mbc support group could also be a huge help. the social worker should be able to help you locate a group....once again, with real people to talk to. human contact is so important.
as for leaving the board....please do not. this forum is for those with mbc....no matter where they are in the journey. that includes you💛.
Thank you for replying. My palliative care dept. does have a psychiatrist. I was referred to palliative care by my onco two years ago. Same building. I had told my onco one day I just woke up and my lower back pain was unbearable. I could not even walk a block without stopping and leaning on something. It was scary bc I live alone. I would walk 1/4 of a block and would have to stop and lean on a building or a light post. It became like a game almost. I would look down the block to see what I could lean on next.
My onco told me it was my age (I was 60 then). She said NOT everything is related to cancer. I was very inexperienced with all this and I said to her But how does this pain happen overnight. I can't even walk down the block. She told me to take extra strength tylenol! I was popping like 8 at a time the pain was so bad.
My next CT scan showed that it was in my spine. She then referred me to palliative care bc they write the heavy duty pain meds. My palliative doctor then prescribed me percocet. OMG. I felt great. I felt no pain. I finally was able to leave my home. I remember walking to the store and feeling so happy that I could do this with no pain. (I Had been stuck in the house for over 2 months bc of the pain.)
Then COVID hit two weeks later. I felt like I lost two years of feeling good.
I had radiation done to my spine bc they said it was getting close to my spinal cord and that if it got there, I would be paralyzed.
When you first get referred to palliative care, they make you see the psychiatrist. He kept asking me if I had thoughts of hurting myself. I said no. He again asked me like four times the same question. I said to him why would I hurt myself when I have stage iv cancer. That will hurt me. He did not even know I was stage iv. I said this won't work for me.
My palliative care doctor called me (we do phone consults now only bc controlled drugs you have to do so). She could hear the stress in my voice and wanted to prescribe something and I said no. I have the xanax that is enough. Yeah, I am tired. The isolation, getting the papers ready so that a former coworker can take care of things when I can't is so so stressful. I had somebody else then they said they could not do it, so I had to redo everything again. I have to go to cancer center on Friday to meet with an attorney to do a power of attorney. I am just overwhelmed and tired.
I echo Carole and Aquamoron. I also sent you a DM with a quote from a woman on another board who was given 3-6 months like you, and has now been on Xeloda for a year. There are so many stories like that. Will it be yours? Who knows. But if you give up it definitely won't be.
On the tough love theme--you are at a critical juncture. You can give in or push on. Mindset is so crucial. When I experienced clinical depression from the Tamoxifen back in my stage one days, one of my symptoms was feeling physically unable to do what was best for myself. It was as if I was afraid of things not being dreary--this was the hardest to overcome, depression not thriving became my comfort zone. It took a force of will, and time (and giving up Tamoxifen) to change--but it was worth it.
You have been given excellent advice on this board--and I hope you stay regardless of what you decide. But reading your posts and responses to advice, what I think I am hearing is a reluctance to take the steps necessary to potentially extend your life--getting a second opinion for one. Yet I am also hearing a fear of NOT taking action, and a will to live. You might want to sit with that for a moment and try to figure out what you really what you want.
You probably need a liver biopsy to see if your cancer has morphed into a different type--or even a blood biopsy which is less invasive but can yield similar information. This will inform treatment options if Xeloda is intolerable. Depending on the location of your tumors in the liver, there may be radiological treatments such as ablation or Y-90 that could shrink the mets--for this you need to consult with a radiologist, not just your onc. Most of all, you definitely need a doctor you are not at odds with.
If I was you, and now I'm going to be very blunt so prepare to hate me, I would spend less time worrying about what will happen to my body after I die and more about how to take care of it now, while I'm still kicking. Not to sound woo woo but how you think does impact how you feel--if you tell your body it's about to die, it might just take you up on it. I am not advocating toxic positivity or unrealistic expectations--we are all terminally ill, But even within that frame, You DO have options. There ARE communities out there who will welcome you. There ARE other doctors. You are NOT alone.
I don't normally encourage antidepressants for lots of reasons, but in your case they might help.--but in any case PLEASE find a therapist. Working with someone to freely express your anxieties and also to get guidance in gently starting to shift your mindset could be life changing. Whether you have 3 months or thirty years left, you have the power to make it the best possible. But you have to take action. It is hard to take the first steps but once you start, you'll be surprised.
Sorry to be blunt, this is all meant in a spirt of kindness and love.
Our situation sucks. No way around it but through.
Thank you for replying. Your remark ....." what I think I am hearing is a reluctance to take the steps necessary to potentially extend your life--getting a second opinion for one. Yet I am also hearing a fear of NOT taking action, and a will to live. You might want to sit with that for a moment and try to figure out what you really what you want" was right on point. I read it three times bc it is exactly what you said.
I am tired of the isolation and the pain and I can't imagine that any other onco has a miracle in their pocket if I am this advanced. As to the Y90 and all that, apparently my cancer center (and it is a well known one in Brooklyn) do not use that and my onco was not even aware of what that is.
I am angry with her bc when it moved to my liver in February, she did not change my treatment plan. She kept me on the 50 mg. of Verzenio and falsodex injections. I was under the impression that once it spread to a NEW ORGAN that meant the treatment was no longer working.
So three months later when I had my next CT scan, the report said the cancer in my liver had INCREASED SIGNIFICANTLY. (Radiology had it bolded and in all caps.)
When I said to her, why didn't you change my treatment when it was first spread to my liver. She got very defensive and a bit upset.
I am spending more time and getting so stressed about preparing for my own demise than I am about living. It is stupid but I need to have everything in place bc the thought of strangers and my LL going through my things upsets me. I know that is ridiculous but I can't shake it.
Just getting someone to agree to take care of things once I am gone is stressful enough. My onco said 3-6 months without treatment. She does not even know the side effects of these drugs.
She actually told me THAT I AM ON THIS FORUM BOARD TOO MUCH (and I am not on this every day, maybe once a week or every two weeks.) I was telling her about how I had to take the Xeloda and she was who told you that. I SAID I READ THE PAMPHLET THAT CAME WITH THE DRUG BC YOU NEVER TELL ME ANYTHING.
Then she used her phone to google something I said about a side effect and I said Oh, I should not come on this board where I hear from ladies in real time what they are taking and the side effects and ways to manage them but you are GOOGLING to find out about the drug you prescribed to me.
I am so disgusted with her. Quite frankly, I knew I wanted to leave her about two and half years ago but then I met my palliative care doctor and that is what made me stay.
I told my palliative care doctor that I know she is trying to help people, but I have absolutely not one ounce of faith in her anymore. I think she just goes by some book and does not know how to treat stage iv. I told her that I think my onco dislikes me as much and that now she just prescribes me meds with the worse side effects (although I know that is not true.)
My onco got scared when I said I was thinking of going for a second opinion bc she had told me if the Tamifoxen and afinitor did not work (it didn't) that that was my last option. All of a sudden she emailed me immediately (which never happens) and said there are other options left. Because she knows if I go to another onco, they are going to question what she did and told me.
But you are right. I am not ready to die and on the other hand, I am so stressed that I am just tired. Quite frankly, since I am not on any cancer fighting meds, I feel almost normal again and got my taste in food back although I know the cancer is spreading. It just feels good to feel almost like I did before I was diagnosed.
I think the advice above suggesting you think about it as stair steps. One at a time is good.
My daughter deals with anxiety and how she handles situations where there are multiple streps that seem insurmountable is to break it down on a list. Maybe sit down and try it? Hypothetically
1. Google “second opinion MS, NYU Langone…etc
2. Reach out to Pallatative care doc to see if she can recommend a colleague at different hospital for 2nd opinion
3. Call these hospitals to see procedure for getting appointment and what they need to access my current records
4 secure records from current facility
5. Make appointment.
Etc.
then just do one step at a time. I know this sounds very basic but I know when I face something like this it all becomes mush in my brain. Breaking it into chunks makes it seem easier—like a shopping list.
It may feel like a lot but just start with the list. Then do one thing a day.
Please stay. You are an important member of this community who matters greatly to all of us who follow you. Please follow the very good advice you have been given by kokopelli2017 and Pbsoup. Call Dr. Egan and your care team to let them know you need their support in locating a therapist to talk with right away. Let them know how critical it is. Cancer is too big for one person, that’s why we have a whole big care team to take care of us. You are in my thoughts and prayers 🙏
I never believed in therapy. I had to go as a child from like age 7 to 10 bc of various things in my childhood. I do not think unless somebody walks in someone else's shoes, that they can really do any help. I mean they go to school, get educated and get a degree but unless they experienced everything in one's life, what good can they do?
actually, from my own personal experience, therapy can do a lot of good. they were a huge help to me when I went through a mental crisis/breakdown. despite being a strong, independent woman.
Getting palliative care isn't the same as "the end is near!!" My onc referred me to palliative care so somebody else could focus on things like pain and mobility, somebody with more access to help with those kinds of issues. The palliative care NP I see changed pain meds, added a med for itching, and increased two of the meds I've been on awhile, which have all been very helpful for my quality of life (QOL). I had horrible hot flashes when I started treatment with Letrozole, as many of us do with the anti estrogen meds. Interestingly, the drug alot of us benefit from for hot flashes is the anti-depressant Effexor. It has been hugely effective for my hot flashes, and now the dosage has been increased, from 75 mg twice a day to three times a day. I was feeling more helpless than since I was first diagnosed and that added dose has helped that a lot and helped me feel more like myself. It can take anti-depressants awhile to work, often at least 2-3 weeks.
With liver involvement, I am pretty sure that liver function, shown by blood tests, is alot more important than the number and size of liver mets.
We each do differently so what works for one doesn't necessarily work for another. We have our individual paths on this journey, though we mostly "get" what others are going thru and how blasted hard living with MBC is! You don't need to leave for us, but if you do need to for yourself, do what you need to do for yourself! sending love and healing thoughts your way............
I noticed you said you got medicine for itching. I have started to experirnce the feeling of pins and needles all over my skin, but did not think it could be my medicines. I am on Letrozole, Ibrance and Xgeva. How did you figure it iut and what medicine are you taking?
Ask your onc if your meds ccould be causing that pins and needles feeling. It could be neuropathy, which some chemo therapy can cause. The itching I have is not like pins and needles but comes with rash. Hydroxyzine hcl 25 mg is the med that has helped the itching, four times a day, along with an Rx cream for allergic rash. It didn't work quickly but after about 4 weeks.
I have itching and bumps, have been sent to dermatologists over and over. They just give me ointments, mostly by prescription. Is Hydroxyzine hcl 25 mg an ointment or ingested?
My onco told me that my liver is still functioning fine. And I told her (and I guess I can see why doctors hate this) but that I had watched a documentary from a cancer surgeon from John Hopkins. He said he has seen patients with cancer (not specifically breast cancer) that covered their entire liver and that their liver just functioned fine regardless. That people think one with their entire cancer in their liver would die from liver failure and that is not the truth. They wind up dying from something called Swamp Gas (which is a condition that happens bc one's whole liver is filled with cancer.) So I told her the fact that my liver is working fine means nothing.
She gave me that sour puss look when I mention that I watch these videos
kearnan- please don't leave this board! there is a ton of encouragement here! As others have stated above....get a liver biopsy, talk to Dr Eagan, take the antidepressants! There are a lot of steps to this cancer trip....however, you DO NOT have to see the whole staircase....just the first step....then the 2nd...and so on. Don't give up. You say you have no one....as seen in the comments above, I believe you have a TON of support! All are reaching out to help you, as we help each other, to get through this. Good days, Bad days...we all have them! Please stay in touch with your friends here! You are loved and cared about!🌺
Hi Kernan! I'm writing from Italy. I have mets in my liver as well. I've been on Ribociclib and Fulvestrant for 25 months. At IEO, a famous Italian hospital in Milan, they have also suggested radiotherapy or ablation if necessary in the future. There are a lot of things we can do. Don't live the board and don't give up. Excuse me for my English
Hi. Thank you for responding. Your English is fine. I wonder what, if any side effects, you have from this medication and the dose you are one. Mine is in my lungs, spine and then it went to my liver in February. And it is continuing to grow. I cried bc verzenio (50 mgs.) and falsodex injections worked for a bit over three years. I hardly even felt I had cancer bc I was not tired and no real side effects.
She put me on tamoxifen and afinitor for two months, but it did not work. I am into this now for five years and I am tired of the drugs. She rxed me Xeloda 4000 mg. a day and I was in bed for a few hours then felt pain in my arms and legs for 1/2 hour. I hated it. I said no, I am not taking it. For me I do not want a couple of more months if I am going to feel that sick and not be able to take care of myself.
She is calling me on October 7th to go over some other options, but from the little I read these are harsh drugs and I do not wish to spend my remaining time experimenting and feeling sick from drugs that are not stopping it anyway.
You've been very courageous telling us your story and with everything you've gone through, I admire you. I can really relate to what you said in another post about staggering down the street looking ahead for the next lamppost to hold on to! I have mets in my spine too and at one point had terrible pain. It's mostly controlled now with morphine, thankfully.
I agree that quality of life is so important. I do hope you can get some substantive suggestions from your oncologist on 7 October, now that you aren't on active treatment I guess time is of the essence.
Do keep on the board -- it is a form of therapy in itself. And we are all rooting for you.
You’ve had such great advice from other responders so there’s not much I can add, but I can relate to having liver mets so maybe my experience will help.
At diagnosis in June 2021, i had three that were close to 2cm each and several cm sized lesions - too many to put a number to.
I’ve had 8 rounds of FEC chemo and then started Letrozole in Jan 2022 with ribo (that I was taken off because of side effects) and just started ibrance.
My latest CT scan in July indicated that all my liver mets are sub cm sized, so know that anything is possible.
As many others have said above, everyone’s situation is different and it’s important that we don’t give up hope. There are many treatment options available to us.
And please stay connected with the people on this Board. I feel well supported by family and friends but they can’t give me what this Board gives me every day, which is lived- experience from people who’ve been there.
Be strong. Advocate for yourself. Find the answers you need. Don’t give up hope ♥️
Great advice especially for you Kearnan….try to muster a little something from deep within and definitely do not leave the board…we’d miss you x
I will update you on my scan results soon. I had 3 cycles of cape/xeloda- and had complications with feet (too much walking and no tlc) after 3rd cycle had a 3 week break and now back on with a slightly reduced dose. I’m hoping 3 week break hasn’t caused havoc within 🙏praying for your inner strength to give you the courage you need.
That's so sad!😢 I'd like to share a rare jewel I stumbled on by accident on YT. Hope it brightens your day. Sorry it doesn't come in English.🤷youtu.be/1q1c9VcSmMM
Who remembers the fairies from the Japanese monster flick Mothera?
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I do not pray for a miracle. All I pray for is that it happens quick and with as little pain as possible. I am just tired. At this point, I am thinking my onco is just throwing stuff at me and I am at the point where quality of life is much more important than quantity. I never married, have no children, have no siblings, so I do not have the desire that many women on here have to fight to the end. I guess if I had attachments to people like children, grandchildren, maybe I would feel like they do. I am just tired. 
SBRT to liver?
Mom has stage 4 mbc. looking for hope. 
Spread to colon
Bone Only mets possibly spread to Lymph Nodes 
