And I thought I just had a pinched nerve...
but they found cancer to the bones. I came here three years ago after my initial surgery and really didn't think I'd be back here this soon with progression. I guess no one really does.
Today I see the oncologist. I'm sure he was shocked when my orthopedist called and told him that the MRI they did to figure out what I did to myself after an injury while working out shows lesions.. I had been feeling a few tingles here and there- pinched nerve tingles- and even told the oncologist's nurse practicioner about it in April while I was there. But it raised no red flags. My bloodwork was perfect.
I'm still shell- shocked. My husband is coming home to take me to the onc, who is scheduling radiation as I write this. I can't believe it. I really can't.
Thank god for all of you here who I know will make this journey easier. I am grateful that my kids are grown. That was my first thought.
Comments
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I am so sorry! Are the MRI results definitive? Or, is there a possibility that the lesions that appear on the MRI represent something other than mets?
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So, so sorry to hear this.
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(((((((((hugs to you and yours)))))))
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I'm so very sorry. You know you can come here anytime to cry, vent, rant, or whatever you need. Please keep us posted. I'll be thinking of you and keeping you in my prayers.
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sandilee ~ I had the same thought as kittymama... Are they absolutely certain it's bc, or could it possibly be arthritis? It just seems odd that you haven't had any pain (which seems like it's often the first indication that something is wrong), or anything amiss with your bloodwork.
Hoping they're jumping the gun on the dx... Deanna
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I am so very sorry to hear this news. Can you explain what happened that made you seek the MRI? It seems so surprising that this would be the outcome. It's so sneaky, this crappy disease! I am very sorry this happened but hopeful they can get it right under control. ((((hugs))))) to you.
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Thanks everyone. I just got back from my onc who is asking some of the very same questions about the lesions. He said that it could be something else, so they took 4 vials of blood to rule out some other types of cancers that show up in the bone. It was 5pm ( he saw me after normal hours) and then he sent me immediately over to the radiation clinic and had me get started on radiation. I really didn't expect that, but the problem is that I have numbness in my torso and legs, and I have a compressed vertebre pressing on my spinal cord, exacerbated by the swelling and probably the tumor.
So he put me on really strong steroids for the inflammation (Dexamethason) and I'll be going for radiation of my spine every day for 3+ weeks. I also will have a CAT scan and bone scan this week and see my onc this Friday to discuss treatment, and hopefully by them we'll know what I have for sure.
So, probabaly BC, but possibly another type of cancer instead. Proabably not, imo.
I discovered this because I was doing a new workout with the triainer I'd had for the past 9 months. It was the TRX suspension device, where you use your own weight to pull yourself up. It felt fine while I was doing it, but the next day I could hardly get out of bed. All of my muscles ached, so I thought it was just muscle strain. I did gradually get better, but not completely.
Then, last Tuesday,I noticed that my torso was numb, and then my legs. I called an orthopedist immediately, and they took me and gave me x-rays. The x-rays showed some disc degeneration, but not cancer or really bad compression. The ortho ordered MRIs to get a better view, and here we are.
He called me this afternoon and said that the radiologist found the compression and lesions. He said he was really sorry- and never expected this. He called my onc, and got the ball rolling.
I was in my onc's office in April for blood tests and check-up. My blood chemistry was perfect-- three months ago.
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I sent you a PM. Kinda freaked out cause I have an area of numb skin on my hip for the past month
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I am sending you prayers. While it is so hard to bear right now I know that there have been huge advances in treatment for bone involvement. I know what you mean about being grateful your children are grown. Sounds like your team is on their toes. I do hope the pain in your bones can be lessened, immediately. This discussion board seems like a great place to go and find kindred souls. I am glad I found it today.
I go tomorrow for a biopsy. I had IDC diagnosed almost 6 years ago. I had a lumpectomy, chemo and rad - one node involved. Since then have had all the scans known to science every 6 months. I've had mammos every year since I was 22 and I am now 58. My last complete bone scan was last month and they found nothing. Last week a mammo showed a lump in the same breast. My family history is one for the books, only one female out of dozens, on mother's side, have escaped this dreadful disease and until this week I was the only one that had not had it twice. The males on my mother's side get esophageal cancer. What's strange is that some of the women have the BRAC2 and some don't. My doc last time think there may be a second gene. We come from all over the country, east to west. Unless there's a miracle and the biopsy comes back negative, I am having a bilateral mastectomy. If my docs want me to have radiation I will push for the tiny implant and directed beam - I think it's bracytherapy? All that radiation and chemo last time did not keep me from a recurrence. I would like to have the reconstruction started during surgery, but don't yet know if that will be possible. I will just have to sit tight. Tonight I am having a glass of red wine and trying to think positive. I've read a lot of great stories and learned a lot from reading posts here. Sounds like we are all hitting this road together and the comraderie really helps right now. For all of those reading this tonight, THANK YOU !!!
Deb
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I had the same sort of intro to by bone mets 4yrs ago.. i was a marathon runner, like you i thought I had a trapped nerve.
I discovered that my mets were in lots of places in my body.
The good news is that that particular one was radiated and now fine. I take Femara and monthy infusions of Zometa for my bones.. So far healthy.
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Sandilee, You're living every Stage 1 gal's nightmare. We keep getting told we're virtually cured, then the other shoe drops...I am so sorry you're going through this. It sucks. Maybe it's NOT bc, but it really doesn't matter. You're under the gun no matter what.
I hope rads helps relieve all the neurological problems you're experiencing. I'll be thinking of you.
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Thanks again, you all, for the encouraging words. I have a CT scan today to see where else this disease has made a home in me. Then tomorrow a bone scan. Then back to my onc on Friday to see about treatment plans, and hopefully some more answers.
I'll keep you posted. This site really is a spirit-saver.
I put the mri disc in my computer last night to take a look at my spine. It looks worse than I thought. I compared my images to google images of healthy and non healthy spines, and there's no mistaking it. Ugh.
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Sandilee,
So sorry you are going through this. Please keep us posted..let us know what the plan will be for your treatmdent. LOL I do the same thing when I come home.. I have my own private library of the last 9 hears.. I have copies of all the reports and copies of all the CD's. I compare them to my previous scans and I google images to see what normal looks like.. Thinking of you, keeping you in my prayers
Donna
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So glad you found us...so sorry for the reason.
I'm 51, married 25yrs, six children(one in heaven), youngest 16.
I was dx stage IV from the get go.
Told my bone scan lite up like a Christmas Tree.
Had chemo(two kinds at once), mastectomy(one side), radiation, hormone therapy now.
Dr told me I'm STABLE. Feel great.
Thinking of you and hoping for your peace of mind and strenght of spirit...kick the cancers BUTT!
Blessings
Jean
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I received the results of my bone and CT scans today, and all things considered, I'd call it good news.
They didn't find any more cancer active in my tissues or bones with the exception of what we're already radiating- the spot on my spine where I've broken the vertebra. Horray for now! Knowing that it's fairly contained so far really does take some of the sting out of the metasasis, although not entirely, of course.
The most urgent concern about my immediate situation is that the tumor and broken bone are pressing on my spinal cord, affecting the nerves in my torso and legs, creating numbness and difficulty walking. I'll be talking to a spinal surgeon next week to see what the recommendation is for surgery. I have a hard time imagining operating on previously cancerous and irradiated bone. Would this even work? Would it spread the cancer, as I assume I still have cancer circulating in my blood stream if it could take over my vertebae like that. But if I don't do it, will I ever walk normally again?
My onc will be putting me on Faslodex next week, off Aromasin. Then when the radiation is finished and the bone has healed a bit, I'll get a bone strengthing med along with it- one of the bigger guns, I believe. Both will be given by injection or intravenously, I think.
Today I'm just resting and processing. It's been an exhausing week. My back still hurts if I move around a lot, but I'm taking the pain meds as well as the steriods for now. Apparently, part of the job of my T3 vertebra is to hold up my rib cage, which explains why I've been having the painful ribs from time to time. It's not doing the job, because it's broken.
Still have to call my 23 year old son who lives a few hours away and tell him about the mets this afternoon. Not looking forward to that at all. But at least we have answers about how far the cancer has spread at this point, and it could have been much, much worse.
I guess I should update my profile to fit my new diagnosis. Stage IV, officially.
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Sandilee - I know a woman here in the UK who has had bone mets in spine and pelvis for 23 years. She is still doing brilliantly well.
Very best of luck with the treatment that lies ahead. Hopefully they will find a way to get you back on your feet again asap.
Take good care. And please keep posting.
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Hi Sandilee, I am sorry you have the bone mets. Very sorry. But I am really, really happy that they only found it in that one spot and you are already treating it. That is a great thing.
Did your docs speculate that the tumor broke the vertebra or did the activity from your rigorous gym program break it where it was perhaps already weakened by the tumor? I bet you anything they are going to be able to stablize it surgically once you finish rads, especially since it sounds like it is just one specific area and not a wide area of mets.
You are going to kick this thing to curb!!
Thinking of you and sending you positive energy and prayers.
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I think the doc believes, as do I, that the cancer weakened the bones, and the activity broke it. The MRI shows shattered vertebra as if something smashed into it in a way that the cancer wouldn't do by itself. Also, it's strange to have so much damage in one place without it materializing anywhere else. I think when people have spinal compression due to cancer, it's usually more widespread than mine appears , which points to direct damage to that weakened spot in my case.
Thank you for the good thoughts. It was hard telling my son- he's my soft spot. I think listening to his reserved, somewhat stoic but suppportive reaction was the first time I've teared up over this. Maybe that's a good thing.
We have a trip planned to visit him in a couple of weeks- and his hugs will help me heal, I know.
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Gosh, creepy as it sounds, maybe that gym workout was the best thing - it caused you to go to the docs where they could spot this problem early on. I really, really think they are going to get it right under control. Glad you will soon visit with your son, he sounds very kind.
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Hey, hey hey! This is not good!
OK. Things are not as simple and straigthforward as I thought when I left the doctor on Friday.
After our long talk, his concern about my cord compression/walking issues, etc., he said that I didn't have any other bone or soft tissue issues. Today I sat down alone with the reports for the first time(ok, I should have done this earlier, but I thought I was getting the whole story, and I was having trouble focusing/ processing as it was.) There is a lot more on the CT scan than he mentioned. The report sounds much, much more involved than he indicated in our conversation!
Bone Scan findings, it says,Findings: Multple focal osseous abnormalities are scattered throughtout the skeletal structures. These included multiple foci bilaterally in the rib cage, the most intense focus in the right thrid or fourth aneterior fifth, intense increased activity in the upper throracic spine, and a focus in the left posterior of the iliac bone. Less forcal and intense irregualrities are seen in the lower thoracis spine as well. Lower extremeties are normal. Renal outline is fainly viualized bilaterally."
Impression:
"Multiple focal osseous abnormalities involving the ribe cage spine and left ilia bone as detailed above consistent with osseous matastatic desease based on bone scan pattern."
That's more than I was expecting to see. The rib isn't being radiated, nor the iliac. Now I have a lot more questions and am thinking that the surgery for my back isn't as necessary as getting thes mets under control. I certainly don't want back surgery if I have cancer other places in the bones- why be laid up for a couple of months when time is so precious. I'm confused now.
What chemo treatments are effective for bone mets? I know that my onc is going the bone and hormonal route right now, but I wonder if I'd be better off going for the big guns right now. My lung seems in jepardy if my ribs are involved.
I doubt that my insurance will pay for a PET, but I think I can find a place that will do it for about 5000. I think I will ask about that. I want to know if I need chemo, and I'd rather do it sooner rather than later. Is that overreacting? All of a sudden I feel like the cancer has really taken hold of me.
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Overreacting? No no no. I would feel exactly like you do - deal with the cancer first and everything else second. Not sure about the chemo side of things - friends of mine have radiotherapy and hormone therapies as primary form of attack for bone mets - along with IV bisphosphonates. Perhaps chemo is kept in the arsenal in case it is needed at a later date?
Is an "osseous abnormality" always cancer? I know my friends with mets have needed biopsies to define exactly what "abnormalities" are.
If I were you I would try and pin the doctor down over this report so you know exactly what you are dealing with.
Cancer hasn't got you - you are in control. Hang in there - once you get a plan of action and a clear idea of what you are dealing with I am sure it will help.
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I don't have bone mets so no advice there, but there a many on the stage IV forum who do and can give you tons of advice. The rest of us there can give you support :>
If you are stage IV, the insurance should not have an issue with a PET scan. I used to get them once a year, and lately it's been every 2 months and I don't hear a peep from the insurance. I do know that some bone mets only show on a PET and others only on a bone scan. There are two different types....there's osteoblastic versus osteolytic.
Best to you, and just know you are not alone on this journey!!! lisa
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sandilee:
((((((((((((((HUGS))))))))))))))) So sorry to hear this.
I'm going through similiar process. They think I have a 'pinched nerve' with burning pain in my leg. I'm on prednisone and the pain has eased a bit in the past 2 days. I should be going for an MRI soon.
Was your 'pinched nerve' pain a burning pain like mine?
You are in my prayers
Jan
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Jan- my back did burn from time to time, but it's really hard to know if it was the mets or just nerve pain, since nerve pain is often burning, whatever the cause.
Good to know about the PET. I do need to finish my rads before I do anything else,which will be in two weeeks. But then I am going to get serious about the PET scan. It might make a difference in treatment if it has moved beyond the bones. My bet is that the cancer is in process of doing that, and I want to make it as difficult as possible to get a hold on my lungs, etc. Sometimes I think that the oncs have seen so much of this, that whether it may show up on the rib vs. just the spine may not seem that significant to them, as the treatment is probably the same in their mind. Makes a big difference to me, though.
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I don know much about how to read this report, but you will sit down with your onc and get the detail filled in here. It may be that picking up areas of "abnormality" is par for the course on this type of test and they are only really concerned with abnormalities bearing certain signatures , etc. This is certainly true of MRI, for example.
Don't jump the gun here; if your doc is worried about just the one area, there is probably a reason for that. He'll explain it and til then, don't read too much in. (((((hugs)))) to you! -
I had a bone density test last month which showed my bone density go from -2.5 to -1.5 and my spine was normal. Would that test have shown any bone cancer?
Jan
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Jan508 - No, the bone density test does not show any cancerous lesions. A special bone scan is used for that. You drink special fluid first then have a whole body scan. If suspicious areas show on the bone scan, an MRI would then be done to identify cancerous areas.
That's great that your bone density improved!
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thanks for the reply.
Jan
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Unbelievable! Just when you thought it was safe to go back into the water. I'm not trying to make light of the situtation, but this is what I thought when I read your topic. Fortunately there appears to be lots of options in breast cancer treatment these days.
Sorry to hear this and best of luck to you.
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Sandilee, sorry to hear about you joining the club. It's always a huge shock, especially if they told you you were "cured".
Don't feel bad about your onc not telling you everything. Mine told me I had a "spot" on my spine, when in reality I had 5-6, plus one in my hip. I didn't know until I decided to pick up my scan reports myself and read them,and look at the bone scans. Ever since then I usually pick up the reports prior to me seeing my onc, even though I know it pisses him off - too bad! That way I have the full story, and not just what he wants me to know.
There is a procedure they can use on a compressed vertabrae that's done as an outpatient, and there isn't any real down-time. It's called kyphoplasty. They insert a balloon into the compressed vertabrae, and expand it until the vertabrae is decompressed so to speak. Then they inject bone cement into the body. You stay for 4 hours while the cement hardens, then go home. Apparently you can resume normal activities almost immediately afterward. I have a lumbar vertabrae, L-3, that is really affected by a tumor, and the MRI showed about 25% compression in an endplate. It hasn't fractured, but if it does, that would be the procedure they would use to stabilize it. You might want to ask your onc about it, since it might be a good option for you.
Actually, antihormonals seem to work well on bone mets, probably better then chemo in some cases. So that would be the first logical treatment, rather then using the big guns first. Most oncs go that way, unless the tumor load is heavy. Some other women on this board have gotten great results from Faslodex on their bone mets. If you post over on the Stage IV forum, you'll get some feedback on it.
I hope they have some good answers for you. Having your spine affected that way is quite scarey.
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