Bone Mets Thread
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Sheila and others, I am watching how things go with your dx and tx, as I have developed r. hip pain also, which has been difficult to nail down. Tumors in the socket of the hip may be accounting for it. Different scans show different aspects of it. VERY annoying when a firm diagnosis would help a lot. Sometimes I can barely stand, but it works itself out rapidly, only to come again unpredictably. The radiation oncologist will zap the known tumors but I wanted to try advil twice a day when I am most active for a few weeks. The radiation field will include a bit of colon and bladder, which I want to save from impairment. They think it will be ok, just sore for a few weeks after tx. Feels risky to me.
I have had bone mets in several areas since 2014, but no symptoms until now. Glad to have others who are in the same boat, it seems to be quite a long haul.
Hugs to all, Mame
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I was wondering. It seems like most people I read about have had mastectomies as part of their treatment for ILC or IDC, and continued treatment with oral meds. My Onc says that a mastectomy is not needed at this time because the meds should slow or stop the cancer from spreading even the breast. But all I read is that mastectomies are needed even with metastasis to other areas. (I am moving real soon and needing to find another Onc. )
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Princess - My original dx was 10 years ago, but though a mastectomy was an option, I chose a lumpectomy with radiation. I thought of it as my “insurance policy"... if it came back hopefully it would come back in the breast tissue and then I could lop it off. Well, the crap came back but my breast tissue is fine. It chose to rear its ugly head in my lymph nodes and spine, ugh.
Mame - as much as it all sucks, you're right.. it helps to have someone else in the same boat. But dang! We should've splurged for a motor boat to speed through all the ugliness instead of this row boat
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OMG, y'all. I found this thread and I've laughed so hard! I started on page 1 and I'm now on like 147 when it hit me that you guys could probably use some humor too. It's called "you know you're a cancer patient when". Enjoy!
https://community.breastcancer.org/forum/31/topics/755825?page=148
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Princess, I've never had a Mas. I started straight away with an AL which allowed progression. A year later, here I am Stage 4 with mets to lungs (per CT scan 7/2018) My onc. thinks I might have mets in hip bone due to intense/unbearable/gosh- awful (pick an adjective. lol) pain that I have in my hip area. The pain just came out of the blue. No warning. So, we're trying to nail down the cause. To me, it feels more muscular than in the bone. But, we'll see.
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HELP!!!! These scans are driving me crazy!!!
I have an MO appt Nov 9 and we are going to have a talk, but I wanted to come to you all for advise before that and to try to figure out what is really going on.
I need to give some background.....
I was diagnosed in Sept 2017 with mets to bone through a PET scan. "0.6x1.0 cm osteolytic lesion C2 spine consistent with osseous metastatic lesion" "Rounded focus of hypermetabolic uptake in humeral heads" "Sclerotic focus 5x7 mm and 3x6 mm in T11 spine". Also on my CT's I get every 3 months shows " Stable sclerotic foci T5,T11, L1, L2, S1." We are treating the mets with the meds listed in my profile. I also showed mets to liver on CT ( 8 cm at start ). You also need to know that I have rheumatoid arthritis diagnosed by blood tests in 2014.
So now.....
I wanted a PET scan after 1 year of treatment, but my insurance denied it. Said they would agree to do one IF I have changes with scheduled CT's. So far stable CT's. So my MO ordered a bone scan. This is the first bone scan I have had. I am also having new pain in right rib area. And we wanted to see how C2 spine lesion is doing since CT's don't go up that far.
Bone scan done this week. "No definite evidence of metastatic disease. Increased radiotracer activity in the cervical spine, sternoclavicular joints, elbows, wrists, hands, thoracolumbar spine, hips, knees, and ankles with degenerative changes."
So what is being said????? Is the PET correct and I have bone mets or is the bone scan correct and there are no mets??? And my problem is arthritis not cancer??
I know different tests shows different things and I read somewhere that PET scans are the 'gold standard' for bone mets, but since I cannot have a repeat PET how do the MO's treat this?
DO I HAVE CANCER???!!!!!
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Candy, the test results are obviously conflicting. If it were me I’d be emailing my onc for a straight answer ASAP (I’m shocked you’re supposed to wait so long after scans for your appointment, I meet withmine within 2 days). Also, have you had a bone or liver biopsy?
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Candy, I second what illimae said. A biopsy will confirm it. I also know how you feel. My scans have given me no answers. Looking to LFT’s and TM’s for answers has been most accurate way. February of this year blood work went haywire. Onc said I’d need a bone marrow biopsy, sure enough positive for breast cancer infiltration. LFT’s started to creep up too. Ultrasound negative for liver tumors. CT scan negative for liver tumors but it did show enlarged spleen. MRI for a pancreatic cyst I have checked yearly showed a heterogeneous liver meaning it has highs and lows not a uniform shape like it was in last year’s MRI. Still no tumors seen, no uptake with T2 contrast. PET scan on 9/28 nothing lit up, report says no definitive lesions. Onc says could be diffuse mets not individual ones. Saw him on Friday, TM went from 182 on 9/28 to 632 on 10/26. I feel great but had been off treatment so that my wbc could rebound from my A/C chemo. Started faslodex last month. Im so confused. At one point the doctor reading the CT scan asked my onc “are you sure you’re treating someone with metastatic breast cancer?” Also my first bone scan came back negative because they were lytic lesions and very small <than 1cm. Hang in there
Jill
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Illimae-
I did have a liver biopsy Sept 2017 upon finding the lesion on the CT scan. It was positive for mets---ER+ PR+ HER 2 neg, same as my breast cancer. A bone biopsy was never discussed. I had breast cancer, positive liver biopsy, and bone mets on PET so we thought it all made sense. I had liver and bone mets.
My MO works every other week so her next week to work is the week of Nov 5 and I have a Nov 9 appt.
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What in the world!!!! Grrifff- What do we do? Our lives are turned upside down and the docs and scans cannot agree.
I will ask my MO about a bone biopsy. But is there anything else less invasive---MRI?? Or see if insurance will agree with a PET since conflicting reports with CT and bone scan??
Has anyone else on this thread been given conflicting info and think "Do I even have cancer"?
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Hi Candy,
I haven’t exactly had conflicting reports but bone scans always significantly under report the extent of my bone metastasis. This has created some confusion for me but the CTs definitely show mets. My TMs are also pretty useless - they have always been very low despite the burden of disease in me.
I know it’s frustrating but you biopsy clearly came back showing mets so I would take the latest confusing results as good news. To me, it sounds like you are responding to treatment. At least I am hoping that’s what it means.
Pat.
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princess- I was told by my oncologist that there was no medical benefit to having surgery. I was put on Ibrance/letrozole and that was it.
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candy, if you have had a cancer positive liver biopsy, then yes..you have cancer. I guess the question is "do you have cancer in your bones?."
A bone biopsy would be most definitive. I wonder if the PET would be clear enough to tell the difference between arthritis and Mets. I'm sure a radiologist would know that.
Sorry your feeling so frustrated. NOT knowing is often harder than knowing.
Sunset
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Princess, I had lumpectomy plus radiation. I understand once metastases has occurred, mastectomy is the proverbial closing the barn door after the horse has bolted.
To Snooky, MameMe, and everyone with muscular pain, hoping you find just the right combo of treatment to get significant relief.
SheilaMarie, I've added that forum to my favorites - thanks for the much-needed laugh!
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If you haven't already seen this, here is an interesting way to peruse ongoing clinical trials- the size of each "bubble" denotes the number of people in the trial, and if you click on a given bubble it takes you to an page that includes the trial description (still have to hunt around for it a bit); there is also a menu where you can have the bubbles sort themselves based on phase1-2-3, or MBC subtype, etc...
https://www.mbcalliance.org/clinical-trials-in-met...
BTW, the boxes below the diagram allow you to change the color designation- so if you click on MBC subtype, then HR-positive is purple, triple negative is blue, etc
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Candy, thanks for the additional info. Like a beautifulsunset said, the question is the bones and which test/radiologist is correct. Hopefully your MO has an answer soon 🙂
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My MO has always said that it is difficult to quantitate bone mets.
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Candy I went through something very similar - my bone scan was clear, CT and MRI didn't mention anything about bone mets, but my MO sent me for a PET/CT because of liver mets detected by one of the scans and he wanted to be sure about everything before I started treatment, Sure enough the PET/CT said my skeleton was riddled with so many mets that my MO discussed warning signs of imminent spinal collapse, etc.. How could that be, I had a clear bone scan just a few days earlier? I was so confused that the scans went from one extreme to another and wondered if I even had mets in my bones especially since I didn't feel I had any symptoms beyond aches and pains that I attributed to getting older and it was a de novo DX. How could my skeleton be riddled with cancer and I didn't feel anything? And since my liver mets were small I went through a phase of wondering if I was even Stage IV (maybe they made a mistake), but I guess it was wishful thinking. The only thing that clarified in my mind that I truly did have extensive bone mets is the follow-up PET/CT after four months of chemo showed drastic improvement in response to chemo. I had posted earlier that apparently it depends on what kind of bone mets you have (osteolytic vs osteoblastic). Because of that experience I'll never trust anything other than a PET/CT for my bone mets.
I'm so sorry that your insurance won't approve a PET scan for you. What really makes me mad is a PET/CT is typically billed to the insurance company for around $6000 (in the US), but if you pay cash it costs less than $1500. I've done both at the same imaging center so I have a direct comparison. That opened my eyes as to how much money is being wasted on administrative crap and markups and why our healthcare costs so much. If it was billed to the insurance company at $1475 I doubt we'd see people being declined so often. It makes me furious.
I'm so sorry for what you are going through.
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Candy, to answer your question”do I even have cancer?” Yes, conflicts in various scan always exists .
According to bone scan, I am still cancer free after 8+years.!
The two PET performed in 2012 & 2013 said no Mets, even two bone biopsies in 2013 & 2014 said negative, until MDA retested and declared I am stage 4 in 2014. I was originally diagnosed as IDC, two years ago I was told it is a typical ILC spread in sheets!
According to CT, I have Mets to bone when first discovered in September 2010, and CT is still the only one that confirms it now.
So, if tests or scans show conflicting results, believe in one most consistent test. Then, ask yourself how you feel. If you have pain, treat it, otherwise live as if you don’t have cancer.
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Hi friends, I don’t recall it being shared here but if I’m wrong please forgive me. While visiting friends in the liver Mets thread I saw the below post from Momallthetime letting people know that Babs had passed away. I first met the graceful and kind Babs here, what a wonderful, loving lady.
Oct 14, 2018 12:25PM momallthetime wrote:
With a heavy heart, i am informing you of Babs passing last night. She was comfortable, in the Hospital surrounded by her family. Just last week i took pictures of her and her family, even though she was heavily medicated, she managed to smile and was so happy her children were there. Babs was quite a lady!
She had been coughing a lot, trying to catch her breath. I don't think it's my place to point out when and where things started going down, but you know my feelings of docs, and i have my own thoughts. When she called me to say "no more treatment" just less than 2 weeks ago, i told her to expand on it, i could not believe it. She was still working, but she wanted to go out on her terms. Then she had an emergency with breathing and she stayed at the Hospital.
She was a good loyal friend. We laughed, cried, cursed together. We finally met for the first time a few months ago. We talked about you guys. I told Babs i would be posting about her.
If you would like to write something here, i'll collect it and send it to the family.
Love you all, ladies you are so gracious.
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This is SOOOOO SAD!!!!
I have been praying for her every day, and I was thinking about contacting Dani's mom, MOMALLTHETIME, to see if she knew how Babs was doing as I was also aware that Babs was discontinuing treatment.
My word, what a difference a year makes. I remember last year, she went to Israel, welcomed her new grandson, was still living her life and going to work. How fast things can change, literally on a dime as they say.
I will keep her lovely family in prayer. She was a wonderful, inspirational woman and will indeed be missed.
With tears in my eyes,
L
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she was also One of the first people that reached out to me here as well. Loving....caring....funny... and kind. Welcoming. I couldn't believe when I had read it on another thread. If I would say something to the family. I would have to say, thank you for sharing her with us.. thank you for allowing us to see what lovely people surrounded her. You were her stars. She is so loved here. No other way to put it. My sincere sadness and heartfelt emotion. ~M~
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Thanks to all the responses about my post. I need to take it all in and talk with my MO.
My concern is what about you all with bone mets only. I know I have cancer because of the breast biopsy and liver biopsy results ( the liver causing the Stage 4 metastatic classification ). But if I would not have had the liver mets, and there are conflicting reports on the bone, then how does the MO's state Stage 4 mets if it is not clear? Could we be classified as Stage 4 metastatic and not be? Why are there not scans that show it truly? That show the "swiss cheese" or "thickened" bone on an x-ray type picture. Why is bone mets so hard to visualize?
I just want it black or white, cancer or no cancer. Why does it have to be so vague.
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My deepest condolences to Babs family and friends. I am always deeply saddened to know of another one of our sisters (and brothers) passing.
Candy - I not quite sure I am totally following what you’ve been posting about but it is interesting that you bring up your questions. I am having scans tomorrow (CT from neck down to pelvis, and also a nuclear bone scan). I am not sure if the nuclear bone scan is the same as what you have had? All I know is that when I was originally scanned with the nuclear bone scan in April 2017, my skeleton was lit up like a Christmas tree. The next scan I had in August showed that there were basically no bone Mets and that the bones were healing. I am scanning tomorrow so I’ll report back.
I don’t want to be overly optimistic but my thinking is that maybe I have some active bone Mets that we will find (based on some pains) and then again maybe not (because maybe it is the AI that is causing all this pain in my neck and shoulders???).
I hope you are able to get some clear answers from Your MO.
I usually write down all my questions before I go in because I get all flustered and forget everything otherwise.
In my possibly overly optimistic mind, my scans tomorrow will show I am still stable and one day maybe I can lessen a few of the meds I am on and maybe lessen some of the side effects that I currently experience (fatigue, joint pain, emotionally bananas.)
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Candy, I might be missing something about your situation, but if I’m not, there may be another plausible explanation for what seem like conflicting scan results. If you’ve been on Ibrance with Femara for more than a year, what might have happened is that you might now be NEAD (no evidence of active disease) per the bone scan, while the previous damage/lesions to your bones will still show up on CT. Just a thought..
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LovefromPhilly - good luck with your scans tomorrow! I also have various aches and pains. The neck and shoulders don't sound like someplace that mets would spread to… on the other hand, maybe I have just never heard of that. I do have horrible arthritis (at age 50) in both my shoulders - I think chemo caused it. Sometimes it is so bad I literally cannot move my arms... really bad. The arthritis does show up on both my bone scans and my PET scans - differentiated from my bone mets, which have now healed and aren't active... maybe that answers someone else's question about a scan showing the difference in the two?
Candy - I am not sure I am totally following you either, but I would definitely pin your oncologist down. I think the worst part(s) of the cancer journey is not having answers... not knowing... waiting for results... being in limbo. It is maddening. If you know and you have a plan, it makes everything a little better, no matter what it is. I hope you can resolve your questions soon!
I am late on this - but welcome to the Foster Kitty Mom. Your journey sounds very similar to mine, although I was not de novo. I did have chemo, radiation, hospitalized for two weeks because of fever, continue with H&P, NED currently. So sorry you had to join us, but looking forward to getting to know you better.
XO
Andrea
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Thank you ladies for your welcome. Great to know that some of you are fellow cat lovers. I have 7 foster cats at the moment, including 2 kittens with ringworm in isolation and three baby 2 week old kittens being bottle fed every 4 hours. A job which my 15 year old daughter helps me with. I will get onto the Cats thread at some point soon.
Andrea, it does sound as though we have had a similar journey. I am not on any hormone inhibitors, not sure why, I must ask my Onc next time, I guess she may want to keep them up her sleeve for future treatment as I am still first line. I know the radiation Onc only did a single zap to my worst vertebrae as he said we may need that treatment in the future and he wanted to keep it up his sleeve.
Candy, I hope you find some answers, it all sound quite confusing, just what you do not need. Bone scans are not very accurate for extensive mets.
Princess, I was never offered a mastectomy. I could have pushed for one, but my medical team does not believe it would alter the outcome for the better in any way. I am not going to argue as I do not want unnecessary surgery and the possible problems like lympodema that could occur. My very small cancer only showed up on MRI and does not show up now, so we are assuming the chemo has cleared it up for now
I am very sorry to hear about Babs. I did not "know" her but she sounds like she was a very beloved member of this forum.
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No more pain for Babs. Many prayers for her family.
I feel bad sharing good news now. My tumor markers are down, I know a lot of people don't take much stock in those, but when I started it was over 300. Now, after almost a year of different treatments, they are 17. They said the cancer has been "shut off". I'll probably never be cancer free, but cancer off is good.
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Princess... you mentioned a mastectomy when metastasis is distant to another part of the the body. Why????
I'm metastatic to bone and lung ( no cancer in breast or lymph nodes with two pet/ct scans). Over treatment carries a whole load of unnecessary side effects. Sorry for your stress. Hugs J
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Congrats on the low TM’s Bigpeaches!
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