Who has been diagnosed with bone, liver, and lung Metz
today my onc told me after the ct scan that I have bone, liver, lung Mets. They will look at PET scan soon.
Did any of you have all 3. What are my chances. Onc told me in last years they have so many more options
They will do a liver biopsy on Thursday. Not sure why the liver. I was shocked about the lung,
Can I get to NED
My 5 yr mammogram was clea
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Positive2strong, we're so sorry you got this unwelcome news. Sending best wishes that your next treatment works for you. Good luck!And please let us know how biopsy goes on Thursday. We're thinking of you!
The Mods
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So sorry to hear about the mets. It's never easy to hear.
As for the biopsy, perhaps they're doing the liver because the mets are bigger and more accessible there? Sometimes mets are either too small or too difficult to access, and based on your scan, it might have shown that your best chance is the liver. It is always a good idea to get the biopsy done.
As for NED, I say nothing is impossible. It all depends on how the mets respond to your treatment. There is a woman I follow online and was diagnosed with Mets 12 years ago. I don't know if shes NED but she has been stable a really long time. She said she had 52 brain mets , mets to the bones , and liver. But she's doing amazing. So I say nothing is impossible.
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I have all 3 now but started with lung and liver only.
Loacation of mets, number of mets and your homorne profile all matter with regard to prognosis.
Do you actually want stats? Because there is a study that has good charts of median survival based on location of mets and hormone status... I can post it but sometimes people actually do not want to know.
And bottom line is you never know where on the graphs you will fall and how well you'll respond to treatment. There are some super responders who get to ned, and others who are not lucky at all and their cancer progresses rapidly. Also, I've met some long timers how have never been ned - they just have very slow growing indolent cancers.
Let me know if you want the study/charts.
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BAP thanks for your comments, some people say don’t plan your funeral but it is hard to think positive, so hearing someone is 12 years is great.
Moth thank you too maybe I’ll wait on the data
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Moth,
They have not told me how many Mets I have or the hormone profile. I guess I should ask once the PET scan comes back
I have MRI today on leg and measured for radiation. Where you in a lot of pain what helped did you need to make adjustments in your house. today I feel worn out but still have liver biopsy tomorrow.
I would love to also read the woman’s posts that is doing well for so long. My onc just said we have so many new therapies in past 2 years.
oliver Newton John uses cannibus I think or maybe Cbd oil. Do you have any knowledge with that.Thank you taking the time with me. My DH just says we will get this fixed.
I think he just wants me walking so we can go places. When you have radiation external was that to the bone and did it help
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Positive2strong, what a shocking report you received. I'm sorry this is happening to you. Don't despair, just let your onc take it step by step and get you on a good treatment plan. I think you will find good support here on BCO. In addition to conversing on this thread, you may want to mark these as favorites:
Liver mets thread
https://community.breastcancer.org/forum/8/topics/809420?page=573#top
Lung mets thread
https://community.breastcancer.org/forum/8/topics/780588?page=73#post_5673056
Bone mets thread
https://community.breastcancer.org/forum/8/topics/789492?page=862#top
(I see you found this one.)
Then when you know your treatment, you can join the thread for that too. Be sure to mark as "favorites" the ones you want to keep track of.
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Positive2Strong, so sorry to hear about these results but at least now you can move forward with treatment to try to alleviate the pain and mobility issues.
As far as hopeful stories, NED etc, here’s a page that offers the stories of some long term survivors and not all reached or stayed NED -
http://mbcn.org/blog-3-columns-masonry/
One of those women, Sandra, I believe, never reached NED but survived about 25 yrs. She did recently pass away but she ha a good long run regardless...and was close to or over age 70.
Yes the “stats” are grim but somebody has to be at the right end of the curve - why not me, why not you?
As Robert F Kennedy once said -
“Some men see things as they are, and say why. I dream of things that never were, and say why not.”
Best of luck with starting your treatment.
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Positive2strong, I had external radiation to the bone (T11 in my spine) and to the lung. I didn't have pain with either of them. The intent of my rads was to kill those mets.
Radiation for painful bone mets seems very effective - so many people here get excellent results from rads.
I think it isn't until you start treatment and see how you respond that you get a better sense of how things look.
I don't think there's any real good evidence for cannabis controlling the cancer but some get good pain relief from it.
Hang in there!
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Hi,
MBC is an unusual world to live in. There is data and lots of ongoing research regarding tx, but none of that speaks to you as an individual i.e. none of it is predictive of how you’ll do. There really is no way nor even logical explanation as to why some progress and others don’t. That is truly an unknown but it does provide some hope.
Cannabis is very useful for symptom relief, pain, and as an appetite stimulant but there is NO legitimate evidence that it cures cancer. Everything you may read about it being a cure is anecdotal and all the anecdotes in the world don’t equal data. I would also take medical recommendations from celebrities with several large grains of salt! Here is our thread on cannabis: https://community.breastcancer.org/forum/79/topics/874792?page=3#idx_70
Let me know if you have any other cannabis questions. I am a huge proponent of cannabis for medical use, but cure? Show me the data and then we’ll talk. Take care
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exbrngrl
I think I should have said cbd oil. I have never smoked weed but I was wondering about cbd
I don’t have answers just searching
I am not even sure yet what treatment I will receive.
I will have my first radiation treatment today.
I think they are trying to get me to walk
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moth,
Thanks for the information. Are you able to do things. How many radiation treatments did you have
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Positive2strong - for the spine met I had 5 fractions. I had no issues with mobility. Just fatigue hitting me once in a while but I think that's from the constant chemo.
I hope that your treatments get you mobile again quickly!. Do you have a referral to PT as well? If you've been struggling with mobility for some time you will need a proper rehab program to rebuild your strength and range of motion.
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Moth,
No PT yet. I have not been told the results of The biopsy or the PetScan yet
No prescriptions either
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this is my 3 rd day of radiation and I am feeling awful with leg pain. I did get crutches and that helps.
I picked up prescription of Norco but doubt I will take an opioid
I have heard nothing from onc about any of my results
Wondering when any of you started to feel better
I really can do nothing in my house and not eating much
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Positive2strong: I read your post in "Life Doesn't End With MBC" post - and clicked on your name to see where else you might pop up. I am truly sorry to find you here and I understand the shock and fear you must be feeling. I find THC-free CBD oil to have a calming effect. However, I do have the occasional toke of Indica if I find I am not sleeping very well. A few puffs and I start yawning.
We will all tell you the first few months (or more) are the worst times. There are a lot of threads to go to, for the wisdom of so many women. Micmel's living room "My Husband, my life........." is a fabulous place to go to chat about all things.
Have you heard back about the results? It has been over a week since your last post.
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Elderberry,
I have finished 10 treatment of radiation to the upper right leg thigh area and left pelvic.
I have finished a liver biopsy, pet scan, mri, ct scan and then another mri after radiation as I still can not put weight on my leg.
The onc was on vacation last week. No one has told me anything about biopsy results or my plan.
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Positive2strong
I joined today after receiving a stage 4 dx last week. I have a hip biopsy and PET scan scheduled this week and have been an anxious mess. Reading your words helped me. I have been in moderate to severe rib, sternum, femur and hip pain and thought I was the only one having this much physical distress so early inthe advanced CA journey (which has my mind thinking imminent death).
I hope your tx helps the pain. Keep sharing how it goes.
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Endora, sorry you find yourself here. We have a bone mets thread which I encourage you to check out. Radiation for bone mets is effective in reducing pain.
Once you know your hormone markers from the biopsy you will know more about possible systemic treatment options
https://community.breastcancer.org/forum/8/topics/...
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Endora,
I too was wondering if others had extreme pain as I read about so many that seem to be able to function. My husband is 16 years older than I am and I have done everything. In fact one year after my lumpectomy he broke his neck, C2 and arm and was in a brace and recliner for 3 months. I did everything. In 2019 we did travel to Italy and Monte Carlo. I drove 3000 miles as we couldn’t handle all the walking etc.So much of our trip was parking the car in 5he city and I d bring lunch to the car and we’d people watch. He has many relatives there and we did stay in their homes.
Now I am the one that can’t even walk. He is faster than me. I am on crutches but it wears me out to walk much. I am wondering when I will feel better. My onc finally called me today, my husband went to her office twice and called twice today. I really have not gotten any details. Of course she called on my cell, I have bad reception at my house, I said can I call you back and she said how fast can you get to your landline as I have a meeting in 5 minutes. my roomba was running and I could hardly get all the info. My husband insists I get a second opinion. I asked her how many Mets I have and she didn’t know the report just says multiple. I really wanted to ask am I severe stage 4 and in my case how much time do I have. She did say I will be on Ibrance, a monthly 2 shots in the butt of flaxinet (SP) and then a monthly shot for osteoporosisWhere do you live…..I am usually good at using my computer but these past 2 weeks I have felt so awful. I dream of walking up and able to walk.
I hope you get relief soon…..my son has sent me some cbd oil and he believes it will reduce my tumors. I know people feel hopeless.
My husband keeps asking me if I want to go to our regular late music places and he thinks I will feel better. He just doesn’t know how much pain I am in
Hang in there and read the posts from the women that have survived for 5 - 10 years
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Positive,
I am sorry that you're still in so much pain. Beside the physical issues, it can wear you down mentally and emotionally. Please speak to your doctor about pain relief. CBD with a very small percentage of THC (not enough to make you high) is good pain reliever for many and can help with sleep. Sorry to say that despite tons of anecdotal evidence and some very small human trials ( in vitro doesn't hold much weight with me), there is no credible evidence to show that any cannabis product shrinks tumors or cures cancer, I am a huge cannabis advocate and a regular user but I believe in evidence based science with respect to tumor shrinkage or cure. I hope federal legalization happens so large scale research can be done as cannabis may have great medical potential, or not. Take care.
PS: I see that you’re in CA. You should have a good choice of responsible, professional dispensaries if you are interested.
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Exbrngrl,
I understand about cbd. I will do all the things the onc prescribes
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Thank you, moth. I will head on over
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Positive
I hope our levels of pain are not equated with a low response to treatment. That’s something I plan on discussing with MO on Monday. I wish I could say otherwise, but my multitude of flaring locations feels foreboding. Unlike you, I don’t want to know the number of lesions, I’m more interested in the grade. I fear level of aggression. Lordy, this is one heck of a mountain.
I’m in MD, to answer your question.
I hope your pain is diminishing and your mobility is increasing.
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Normally I don't intrude on a Stage IV thread, but this one is open to all.
I don't know which cancer center you are going to, Positive2strong, but being here in LA you have some really good options for a second (or third) opinion. There's Cedars Sinai, UCLA, Keck/USC and of course City of Hope, which is where I get my care. I have friends who have been seen at all of them. All of them are internationally recognized cancer centers.
I believe all of them will do a virtual second opinion so you don't have to tra el while you're in so much pain.
I hope everything works out for you.
Endora, I'm guessing you're a fan of either the character on Bewitched, or the actress, Agnes Morehead. I had the privilege of meeting her many times when I was a child. She and my great uncle, Otto, were the closest of friends for over 50 years. Truly a lovely lady.
Again, sorry for intruding. Best wishes to both of you. May you find effective, gentle treatments.
Trish
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Trishyla,
Thanks for your post. I live very close to Cedars. My surgeon was Dr. Kristi Funk. My onc is with Cedars, but I will get a second opinion.
Probably at UCLA .
Keep in touch
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Endora,
yes, I want to know the grade also.My pain is the same, how are you doing
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Positive
Right now, my pain is borderline unmanageable. I took my first opiate last night and have the first PET in an hour or so.
Back, hip and chest/rib pain is ridiculous. Needless to say, I'm terrified bc that's too many areas yelling at once. Last week surgeon looking my lumbar CT said, "There's a fairly large area that will be good to biopsy." To which I responded, "Fairly large? That's not good." And he countered with blah, blah, blah, "No, it is. Easier target." I didn't need positive reframing, I wanted his truth.
I spent way too much time reading on here yesterday and am feel rather hopeless. Hip biopsy tomorrow, though I don't know how they're going to get me in position with the chest/rib pain.
Too many areas, erupting very fast, and each with significant pain.
I'm not in a good way right now, so signing off. Thanks for asking. Means a lot.
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Endora,
How did you do today.? Some days I am hopeful and think I will be able to go places again…and then other days I am really down. I am basically bedridden. My husband is fighting getting any help.
Today I got a call that a Cedars Ortho surgeon wanted to talk to me stat and they were sertting up surgery for Monday. My onc said we may need to consult an orthopedist
Then I had another text to come in Tuesday for my first shot.
It is crazy. I also have been too tired or depressed to read much about these shots in the buttocks
Stay strong and as my onc said in the last 2 years there have been many advances
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Hi there everyone, I just wanted to say hi since I'm in a similar situation. Bone, liver, and lung mets. Also dura mets, mediastinal lymph node mets, and some other miscellaneous mets.
My pain levels have really escalated as the cancer has progressed. I think being in pain is distressing from a mental and emotional standpoint, because it reinforces our fears that we're dying or really doing badly. I resisted taking stronger pain medicine for a long time, but I've had to incorporate it into my life now. It actually does help me feel closer to "normal." I also got a referral to a palliative care doctor who handles most of my pain issues now, which is great because they go into more detail than I did with just my MO.
I'm just sharing all this because I think there's a hesitance surrounding opioids, understandably, but for people in our situations adequate pain control can really help. Hang in there everyone. 🙏
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Oh Positive, how kind of you to follow up. Thank you.
I couldn't get up from the scan's gurney as my rib cage and spine were frozen. It was a nightmare. Fast forward fours hours later I haven't been able to get the pain under control. Got a call an hour ago asking me to move tomorrow's biopsy to later in the day, and I don't want to go. I know my new onc will want to see today's PET AND a biopsy result, but my gut tells me to see him first (Monday) and then proceed because like you, I will probably get radiated for pain management before anything else. We'll see. Onc is a lead Hopkins (Johns Hopkins) doc and they are notorious for being rigid with protocols. He might throw the book at me.
Not being able to get pain under control is scary.
Sounds like your medical team is moving fast, too. It's been eight years since I've been on this merry-go-round, and I forgot how overwhelming and in-your-face it can be. I hope you get whatever help you said your husband is fighting. (What's that about? ) I hope surgery is what you want and it provides relief. Being bedridden is majorly depressing. Totally normal response. Are you on an anti-depressant? If not, it might be something to consider. I'm thinking of adding one to my regimen. Constant pain is zapping my ability to problem-solve and feel strong. All I want is the suffering to stop
Please keep me posted on how you're doing. Sending care and concern.
x
Wendy
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