Bone Mets Thread
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Raisan, you are in the right place. The shock of the diagnosis is very hard. I also have very extensive bone Mets in just about every bone in my body. One of the first things my onc reminded me of was the fact that the treatment will work on all of your bones, weather it's one or all of them. Read through this thread and know that many of us are doing well. I am almost 3 years out and very stable on my first line of treatment. My onc also told me to ignore the statistics...they are outdated and do not reflect the new treatments that are now available
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Granny, my onc also insisted in a bone biopsy first. Maybe you could ask yours why he would start you on something without knowing if it’s the same?
Raison, am so sorry you joined us, but there are wonderful women on this site that will help you with lots of information. I’m much older than you, and have no children left at home, so I can’t imagine what you are going through, but I can tell you that even without children stage for diagnosis is always scary. That being said, there are so many new treatments,
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raisinangels, chemo and hormone therapy should begin to improve your situation. It’s harder on some but doable. I recommend joining a chemo group, if/when the time comes for additional info related to side effects but otherwise, many of us can live relatively normal lives for several years. Don’t worry too much about anyone giving you an expiration date, there are many treatments and variables with this disease. It’s not all sunshine but it helps if you intend to defy the odds, you’re stronger than you realize
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Welcome, Raisin. We hate it that you have to be here, but it's a wonderful, supportive place to be.
My onc, too, ordered a bone biopsy immediately. They took a small plug (sounds gross but was out-patient and not a difficult procedure) out of my spine before doing anything else.
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At least I assume it was my spine. It was somewhere on my back, down low. So I take back my statement that it was from my spine.
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Raisin - You are in the RIGHT place. Welcome to the club no one wants to be part of. The first few months processing the situation are really hard. We can only cheer you on for the work ahead ... which involves shock and panic and trauma. Almost all women develop PTSD symptoms in their first few months. You've got rogue biology taking over your system so this is normal.
No one can say how this will play out for you but many people fight back from the position you are in and do well. Bone mets are more manageable than soft tissue mets. The treatment options are expanding. Not as fast as anyone would like, but I expect you will stay in the game long enough to see new treatments that will work for you. We lose lovely strong women on this thread all the time. I don't want to downplay the seriousness of the pile of crap you just stepped in.
The toughest part is keeping your head in the game... waking up and going through your normal day and dealing with treatment with this Thing trying to kill you. I feel the most important thing is to have a Reason because it's really hard. Sound like you have two little reasons that will keep going through the worst of this. Hold them tight. I am so grateful for my family. They are both a powerful distraction and powerful motivation. You've got the key.
This is a great group of women. Please check in frequently and tell us what is going on and how you are feeling.
IMO the extent of the mets doesn't matter much, it's more about whether they respond. It sounds like your doctors have chosen to hit the cancer hard with chemo. It's going to really suck but most likely work.
>Z<
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Hi, I have a four year old too.. Don't know if it's any consolation now, but it's true that after the first couple of months of treatment one actually gets to a weird equilibrium. This happened despite myself, who I'd describe as a glass half-empty person pre-MBC. Trying to live in the moment is key for me - I am spending more time with my kids, I'm more attuned to their needs. I found the clutter falls away and you're left with what matters.
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Raisan, first of all, it totally sucks that at such a young ageyou are diagnosed with stage iv bc. So unfair.
You found a great site, tho, and I hope you can find the support, insight and information here that I have found.
There is a great thread for newbies of stage iv, and when you have a bit of time, read through it. You might even jot down a few notes here and there from some of the advice you find helpful. There really isn't anything I could add here that hasn't been mentioned on that thread in terms of how to find coping strategies to deal with this effing disease. Link: https://community.breastcancer.org/forum/8/topics/...
You are smart to not look up any kind of statistics. One of the very first things my doctor told me after I was diagnosed was not to turn to dr. Google and scare myself. It was good advice. I will tell you, though, that I was scared sh-tless to even click on the link on this forum to the stage iv section. Scared, scared, scared! And then when I did, I found the most wonderful group of women who helped me, immensely, come to terms with this thing, over a period of time.
It sounds like you were set for chemo till the stage iv came about. Maybe your treatment plan will change. Take this one step at a time, and try not to project yourself to some far off future that no one can predict. I am middle aged and have been over seven years now dealing with stage iv from the start, and refer to this as living with the disease, not dying from it. Best wishes.
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Grannyof3, I am sorry to learn of your latest scan. Where you placed on a certain kind of treatment last year when you were diagnosed with metastases? I am not sure why you are asking for a bone biopsy now if you were diagnosed in May last year, and wonder why you are only starting taxol and herceptin now if the scan lit up in November. I do want to mention that I am not her2+ so I don't know how treament is approached for it.
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Raisan_angels
I was diagnosed in June 2016 with stage 2...and after a PET scan and a bone biopsy in 3 weeks..I got the news that it was bone mets. I found this site and got some great info. There's an abundance of support and love here.
I still needed to process what I'd been told. I was scared to pieces. I had been scheduled for chemo but never had it. Do you have a treatment plan in place?
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RaisanAngel- I will chime in and second the advice that everyone has told you. Your life is NOT over, not even close, so don't let your brain go there- and you will help yourself enormously if you can find a safe corner of existence in your brain where you vanquish all concerns over this disease. Maybe meditate on the idea that a cure could come out somewhere just a few years after your first line of treatment, or if not an outright cure then something that extends current treatments by years and years. You would not want to survive but have lived those years with severe PTSD. You need great sleep, great nutrition, some exercise, some fun, some hope for the future, and a ton of love from those kiddos!! And I know the feeling of lying in the MRI machine silently counting out how many years one would need to survive in order to see your kids hit their teenage years, or college, etc, That alone nearly made me faint from daring to hope that I could live so long. But the reality is that in the near-term you can expect some very powerful drugs with few side effects, very little change to your life with the exception of whatever life changes you decide to make to be sure you get the most out of life, and in the longer term there are incredible treatments coming along that could completely change what it means to be diagnosed with metastatic breast cancer. I don't agree with doctors or anyone calling this a terminal disease, in my view you are terminal if your doctor says you have a year or less to live, other than that, you are no more terminal than everyone else walking around on the planet. I come on this site daily for inspiration and to learn all of the details that the women here have to share, and so I hope you find that space and advice that you need right now.
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I got advice when I just got diagnosed that has been helping me this week full of doctors and hospitals. I got it form my dentist who is a little nuts (he was Shirley McLaine's dentist). He had/has an "incurable" cancer for decades. As I discussed with him my diagnosis and interactions with my doctors, he would periodically look up at the ceiling restraining himself, then briefly look out the window. Finally, he sat down, exhausted at the listening to me, and angry too. He said, "What you need to understand is that by the simple act of telling you that you have a terminal illness, a doctor can kill you. Do you understand this?" And I do.
We are each on your own path and no one knows what that path will be like. We like to know where things are going. Our minds will latch on to "certainties" from the mouths of authorities (doctors). But we don't know, they don't know. It's hard but necessary to stay in the moment. When you do project into the future, visualize how you want things to go and leave it at that.
>Z<
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Thanks for the responses. Apparently I'll need to push a lot harder to get that bone biopsy.
Mrs. M
When I was initially diagnosed with my bone mets, I was already on TX for my skin mets. This wasn't my first bone scan. (Just the scariest) He has tried 2 different TX since my bone mets dx. From August until mid December I was on AC. My tumor markers decreased quite a bit but the November 27 bone scan showed progression. MO called me with results. Said to go ahead and finish my AC TX, then take a break for the holidays. I saw MO on Tuesday and SAW my bone scan results for the first time. When he called me he said I had progression. He failed to mention I could have lit up my Christmas tree. So far no TX have slowed the bone mets. I thought since I haven't had a biopsy, maybe my dx has changed? Would it make a difference? He said it's hard to biopsy bone mets. Especially in the spine. Since I have them everywhere I don't see why that's a big concern. Maybe I need a new MO. My very cynical son said “mom, you have Kaiser, do you really think they have your best interests at heart? They probably wish you'd die so they don't have to keep paying for treatments" gotta love him lol
Have a great pain free evening
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Grannyof3, thanks for the further explanation about your situation. Honestly, it does not sound like your onc has your best interest as heart. If it were me, I would get a second opinion. Your intuition is saying, hey, maybe there's something more going on than her2+, but the onc is dismissing your concerns. It also sounds suspicious that the onc only considers the difficulty of getting a biopsy thru the spine when you say there are scattered bone mets. It is your body and your life, and as much as we want to place our faith in the experience of doctors, we are often our own best advocate. Imagine if this were a loved one. You would want the best care for that person. Now do the same for yourself. Get the best care. Plus, I am not sure I like that the onc had you take a treatment break for the holidays after your scan lit up like a Christmas tree. What is your gut telling you? Listen and see if you think you should adjust your approach. Best wishes to,you.
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Granny of 3, I'm right there with Divine...I'd be thinking about another opinion quickly. I'm also not comfortable with that treatment break, either. At least for me, this should be pedal to the metal until things are in hand.
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Grannyof3, I have a cynical side, also, and while I couldn't say whether your son is right with his view of your situation, I can understand where he's coming from. I've had cynical thoughts about my own treatment from time to time. How old is your son, if I may ask?
It seems in this day and age, it is even more important than ever to advocate for ourselves. We simply don't know all that goes on behind the scenes in the medical and health insurance fields, and all offices, hospitals and doctors are different. I definitely know there are some doctors who minimize and trivialize the concerns of many patients, and I also feel that it happens to women more than men.
Some of my cynicism has been fueled by a couple of well documented books I read recently on the opioid epidemic. It is rampant in Ohio where I live. The criminal behaviour of unscrupulous doctors and of course big pharma are exposed, amd it isn't a far leap to question other areas of the medical field. Granted, it doesn't mean I am suspicious of all, but I do feel it pays to be AWARE that some doctors only have their own best interest in mind.
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Hello, I have been a member for years but never reached out, actually I was so helped by all of the existing communications that I didn’t need to:) thank you all for this support! Anyway now that I have just recently moved up to stage 4, I have lots more questions/concerns/fears! Really needing support! Here goes, I have been Ned for 4 years after having stage 3 node positive, then starting having hip pain, went to multiple gps then orthos, but nothing much came from it, they wanted me to do pt! Long story short onc finally ordered bone scan, mri and pet scan. We’ll my hip has a big hole in it, they said immediately stop all weight bearing. Surgery on the 31rst to replace top half of femur with titanium rod. This is all so scary and sudden! My onc hasn’t even met with us yet because he says he needs biopsy results before he can make a game plan. I also have multiple other spots. Bones, lungs, liver, breast, and nodes. Anybody relate? Husband, 5 amazing kids to live for:
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Chef, we all know only too well how scary this diagnosis can be. I know that you could strangle those doctors for missing what they should have been on top of. I'll be back-up to the strangling, right there with you. It makes sense to me that your onc wants a bone biopsy so that he/she can determine the very best treatment for your situation. Just keep them moving forward with it quickly so that you can get moving on a treatment plan. There are good meds out there, and they're being improved and developed every day.
I learned the hard way that even well-respected docs can be overwhelmed and/or so busy (I'm trying to put the best light on it, as this was a supposedly stellar doctor, to whom I had gone for 10 years before stage IV) that they just aren't paying proper attention to you. I am a huge advocate for reading, asking questions, and paying attention, to be sure that what your doc is doing/ordering seems to be in line with standard practice (i.e., mine neglected to order the loading dose of Faslodex, wasn't checking my blood counts during the first 6 weeks I started Ibrance, forgot that I was coming in for the reading of my first scans....). I made a change quickly.
Keep us posted!! xox
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granny and raisin- chiming in to welcome you here. A place nobody wants to be, of course. I agree with the wonderful women above who have shared their wisdom. We are all in your corner and will offer up whatever we know and have experienced.
May the force be with you-MJH
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chef- so much to absorb, I'm sure you are still numb and reeling. Good to get the biopsy to know just what your dealing with as the bleeping cancer cells can mutate. Try to take one thing at a time(yeah, tough place to get to). There are so many good treatments and you'll get on one of them and get back to some degree of normalcy. My thoughts are with you now as you process this all. You need that surgery to put out the first fire, and then the others will get under control. Sending love and best wishes. MJH
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Wow, it’s so nice to have actual people respond with support:) what a great place! Thank you! I’m looking forward to better figuring out how to develop friendships and navigate this site. I am hoping someone who has had surgery for bone mets will pop in:) and yes, drs missing the mark!! What can we do about that?? My husband and children are furious! If they know that it most often spreads to bones why aren’t they more vigilant?? I mean I had an X-ray of my hip 2 months ago that was completely normal, not even arthritis!! So the dr just said hmm, well there’s nothing wrong with your hip, let’s do pt for 6 weeks and teach you some strengthening exercises. Well I couldn’t afford it so I just left feeling defeated and uncared for. Had my regular check up with onc, who had known of the pain all along but I hadn’t had an office visit. He immediately ordered bone scan, it lit up all over, still it could be arthritis, ordered mri, showed lesions on spine, still hope, then pet scan, called immediately after to say no more walking! How could this huge cancer that has eaten nearly thru the bone have been so hard to find? I think the protocol needs to change
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chef, when I had severe pain in my left arm, the insurance wouldn't pay for the MRI until I had an X-ray. The X-ray was completely normal but thank God that my primary then ordered the MRI which found the cancer. My bones were full of it and the only pain I had was in my left arm. Go figure.
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Thanks to all for your responses. You're all great! I sent a message to my mo requesting a bone biopsy. (Again)We'll see what he says. They've also recently hired a new MO at my facility. I'll see about seeing her for a second opinion
Mrs M
My son is 29. I also have a daughter that turns 27 next month. She has 3 kids. They are what I'm fighting for. How about you?
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I want to here from you all on your thoughts about this....
I have mets to bone and liver. My MO wants to do CT scans of abdomen every 3 months to watch the liver lesion but he said he is not as concerned about the bone mets. I am on Letrazole and Ibrance and am ER/PR positive. He said the CT will monitor SOME of the spine areas, but not all my areas---shoulders. He seems hesitant to do bone scan---I ask him about one. He said he would do testing if I wanted it, but acted like I would just be doing unnecessary tests. I know the liver lesion---8cm at first--is very important, but I would like to monitor the bone also and monitor if it invades more bone or gets worse.
What do you think? What tests do you have routinely to monitor progression??
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Grannyof3: my kids are 7 and 5 years old. I fight to see them graduate from high school some day.
Candy-678: I have bone mets only, however my docs certainly also check my lungs, liver, etc periodically. After my CT scan of thorax and abdomen last time, they will do a full body low-dose CT next time (3 months later). They are not keen on bone scans, because they are rather inaccurate, e.g. one can mistake injuries, arthritis and even bone healing with progression. Since I had pain in the liver region at time of my last staging, they also performed an MRI of my liver because it can detect smaller lesions. PET-CT is not so common here in Germany, because it is so expensive and health insurance will not pay easily for it. Btw, one could see quite a lot of my spine in the CT scan last time, because thorax and abdomen scans cover almost all of it.
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Hi Candy,
I have had a couple of bone scans and, in my case, they were completely useless. The last one indicated no further progression but there was a note that based on the comparison with the CT, a bone scan seriously underestimates the burden of my disease.
I have to admit I side a bit with your oncologist. The bones are not that big a deal for the most part and you will catch progression with the CT. In my case, the problematic mets are in my pleural lining and around the capsule of the liver. I don't give the bones that much thought. If things progress I think I will know as I will start to get pain.
Also, you need to consider the type of mets. I have sclerotic mets (bone growth) rather than lytic mets which eat into the bone. It's difficult to tell the difference between bone healing and new sclerotic mets on the scan which is another reason why my MO does not focus on the bones much.
Not sure if this is helpful but thought I would chime in.
Pat
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Granny, I don't know where you are in So Cal, but I do know within Kaiser there are some physicians who are also affiliated with another major medical center in the area. Lots of UCLA and Cedars docs also do days at Kaiser. At a minimum, I suggest a second opinion. Kaiser can provide wonderful care, but as with everything I think we need to push sometimes to get them to really do their best. It would be interesting to know if your current Onc has treated many stage 4 patients or not.
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Candy, I was diagnosed with MBC in Feb 2017 (almost one year ago) after 27 yrs in remission. Shock!! All mets are to the bone, extensive and scattered throughout the skeleton, and most are sclerotic.
My onc does CT scans of thorax (chest and abdomen) every 3-4 mo. I have had three sets since dx. He also did bone scans (nuclear) with the first 2 sets of scans but not with the last, as he said that they really don't give you much good information. He wanted them for a baseline, I think. I asked him if and when he might do a PET scan (purely because I read on this site about others having PET scans), and he said that it would "probably be a good idea" to do one this next time and leave off the CT scans. I suspect that going forward, unless the PET shows something unexpected, it will be CTs of thorax every 3-4 mo.
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Candy, after my initial bone scan to diagnose, I've never had another one. Going on 3 years now. I've had 2 different oncs and both say Ct scans are sufficient enough.
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Joyner, I wasn’t scheduled for the loading dose of Faslodex either, but since it had only been one month, they picked it up today and then will go back to monthly
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