Bone Mets Thread
Comments
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Thanks Chrissy for the advice, I did sleep well, dex has sure helped aches yesterday and today. I dont really like the dex but it is good for a lot of things. I did take a tramadol last night slept ok, but I think dex kept me awake too. oh well. there is always another night. to sleep.
Thanks everone!
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Chrissy, I see you were diagnosed in 2003? So you r ten years with mets? That is great to see!
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Hi RangerMom--
Just checking in to see how your treatments for your new dx are going. I've been thinking about you, and hope that you've been able to enjoy some holiday time with your family, particularly with your new grandson. I would imagine that he is fascinated with all of the Christmas lights (aren't we all?). Sending hugs and prayers, and hoping for pain-free days and good news in 2014!
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I hope you ladies don't mind me posting a question here. I was wondering if any of you could tell me the symptons of mets to spine! I am being treated for lymphedema, truncal, I think! Anyway, since finishing rads, I've had this intermittent pain in my back, it comes and goes, but mostly comes when I "use" it! It's hard to explain when and how the pain comes and goes, but it has me scared. I talked to my MO and he doesn't seem concerned, that is when he decided I needed therapy for the lymphedema, I've had 3 sessions and so far, the area in my back has not improved, not worse, but def not improved!
Thanks for any responses!
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Hi Nettie. Some of us did have back pain when our mets were found and some did not. For me, there was definitely intermittent pain that I attributed to getting older, and I even started working with a trainer to strengthen myself overall.
We aren't going to be able to add a lot because back pain can be from many causes. I would suggest that you not drop it if you are concerned. Request a bone scan. You are a year out from diagnosis and it's very possible that bone mets could have developed. It also could be some other issue, but if the pain comes and goes for more than a few weeks, it's perfectly reasonable to get it checked out.
And an X-ray often will not show spinal mets. It takes a bone scan or MRI, or PET.
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Hi Nettie,
I don't know if this helps. I have mets all over my body - spine, skull, ribs, pelvis, thighs etc etc. The only pain I had was in my ribs - and then after I started treatment I had a lot of trouble walking with pain in my groin and weakness (after a bunch of MRIs of spine to look for trouble - I eventually had PT for that and it turned out there was also a crack in my pubic bone that appeared after the groin pain started that we don't know how it got there as I had not fallen). Anyway, I did not have any pain in my spine from the mets there. They found them by MRI initially, confirmed by PET/CT and then followed by CA27.29.
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Wow, your initial diagnosis didn't seem so bad, how in the world did it metastasized so quickly.
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Nettie- I don't know the details of 20130502's diagnosis, but in my case it probably was in the blood but not visible on scans when I was first diagnosed as Stage I. I had no node, involvement so it spread through the bloodstream to my bones.
It seems likely when one finds mets so soon after the first diagnosis that it was already there but undetected.
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I was stage zero and chose BMX as prevention. 8.5 years later when I took a tumble that led to X-rays that led to biopsy that led to my stage 4 dx., I was told that pathology doesn't look at all of the tissue, they would be years and years, that something else could have already spread at the time of my original surgery.
And yes, the bloodstream to the bones is probably what happened. All these 2.5 years I have been scanned every 3 months, looking for any spread outside the bones, goodness, I had a very large amount of bone mets when discovered, thankful I am still walking on my own, pain controlled with a boatload of meds and prayers.
Anita
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Ok, so I'm not very knowledgable, but how did they miss it in the blood work? That is very scary to think that it can be missed in the blood work!
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ctc, or circulating tumor cells, have never been checked on my blood work. Seems like so much is based on my symptoms.
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I got a call from my nurse yesterday morning that the bone scan only shows one bone met now, yeah! (There was a smaller one on the PET scan but it may not show up on the bone scan or possibly, the femara took care of it.) In any case, she stated that they are leaving me on the current treatment since it is working. So good news! (I did think that would be the case but it is great to have it confirmed).
Happy New Year (as happy as possible) and best wishes to all of us in 2014 and God bless!
PS - The 2 comments I hear the most since dx are "Hang in there" and "You'll be ok". I guess it's better then having them say, "You are so stupid for believing your primary physician" (but that's the one I keep repeating in my head).
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Musiclover; now that's what I like to read about!!! Awesome!!
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great news musiclover! Happy new year indeed!
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Thank you, I hope femara keeps going like this forever...now that would be a miracle I could go for!
Katie, I saw your comment to Chrissyb. She had a recurrence like yourself but I think she has over 3 years at stage IV and she has such a positive attitude. You can click on the member's name and some times read about how they got to where they are. Have you started a tx yet? If so, which one and I hope it is working well for you. Did you do chemotherapy with your original dx?
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In regards to spine pain, I thought it was my arthritis and EDS. During the time of my mastectomy I was having groin pain and doctors just brushed it off. I continued to have groin pain and not able to step up on a curb or steps without a lot of trouble and major pain. Then I started to have pain in my ribs where I had my mastectomy my PCP said it's arthritis, and I knew it wasn't such, so I walked over to my OP and said I need to talk to her or her nurse immediately. I said I don't think my PCP is taking the thought of recurrence a serious situation. They asked me if I could do a PET Scan that day and it was done and I had cancer in my ribs, spine, right hip, femur and lungs, (since then more in spine, liver and kidneys), the pain in my groin area was the typical pain that comes with hip and femur mets. So if you are having pain, go with your gut, push for a MRI or PET Scan. I think most of us ladies know when things are changing. I'm feeling so good because I haven't had any cancer gone from such areas but I've kept stable with the cancer that is throughout my body. I believe I have years of life ahead and know that I'm the one that is driving where and what treatments I have and because of such I've kept myself in a stable situation. I will never be NED but keeping things from getting worse is the best news one can have in my situation. Again I think we know if things are not right, then push all you can to make sure that the right tests are done and that your feelings are then acknowledged or shown that nothing new exists. Just to let those know I have never had an increase in my blood test for my cancer, my markers have always be in the low normal while cancer was growing throughout my body. Even now my cancer doesn't change my blood markers. My Oncologist says I'm one of those people in which cancer markers never show up in blood, which is many of us that she treats per our conversations.
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Hi all!
Katie, I was dx first at stage II grade 2 no nodes in 2003 then stage IV in 2009 with mets to bone. My first treatment at stage IV was Arimidex but had a small progression after 15 months and was changed to Femara which took care of the progression and has kept me stable until now........It will be five years in May and I have just had my ten year cancerversary a couple of weeks ago.
This disease, on the most part, can be lived with for a long time and life can go on as normal but as is always true, life is what we make of it. There are always hick ups and obstructions placed in our path.......it is how we deal with them that can make it hard or easy. I just take each day as it comes and deal with what ever pops up on the day.
I know right now that I have had another progression, I am just waiting confirmation when I see my doc in a week but other than a change in meds my daily life will be the same and as far as this disease is concerned, it is what it is and there is nothing I can do other than slow it down a bit with the help of medicine. Right now I am doing just fine, I can laugh and appreciate the world around me, love my DH, children and grandchildren and spend time with all of them ..........all is right in my world.
Hoping you all are comfortable and as SE free as possible.
Love n hugs. Chrissy
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Oh, what a happy New Year, Musiclover!!
Chrissy, you are an Inspiration. I hope the new med(s) work on the old and new buggers.
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Musiclover, that's great news! I am delighted for you.
Chrissy, I echo Heidihill, you truly are an inspiration. Here's hoping the new meds will work as well as femera did for you.
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Musiclover, that's great news, I'm really happy for you!
Chrissy, I'm sorry to hear you've had progression, but I wanted to say that I love your attitude! I'm in the same boat as you at the moment; I'll be changing treatments after the holidays so I'll keep you company in limbo until things get sorted out. It's exactly as you say. It is what it is, nothing will change that. All we can do is live our lives to the fullest of our ability, grateful for all the good things that still happen.
I hope your new treatment gives you minimal se's, and that you get back to NED in double quick time.
Nicky
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Thank you all
. Again I hope it works forever! (My version of forever is until I'm around 80yrs old).Chrissy you truly are an inspiration, you really live your life in spite of all of this. I hope the next med. does wonders for you!
In fact, you all inspire me greatly! God bless.
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MusicLover---great news. Happy New Year!
Nettie- blood work does not necessarily catch mets. My spine and ribs were riddled with mets and my labs- CBC and chemistry-were normal.
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Great news, Musiclover! I hope it lasts forever for both of us!
Chrissy - you are an inspiration. Sorry you've had progression, but I'm sure the next med will kick it to the curb and stop it in its tracks.
Nettie - my onc said that only a small percentage of women have it show up in blood work.
Wishing all of you the best in 2014!
Terre
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So if it doesn't show in bloodwork, how do they find it? Sorry to be so ignorant. Is it found during follow-up tests?
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Nettie,
Most mets are found with a PET Scan or MRI's.
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So what prompts the Dr to order those test? My Dr said no scans needed now.
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Anyone else on Abraxane that is very tired with it? I seem to do good for a couple of days but seem to sleep forever on the weekend. Just wondered if it was just me? I get treatment on thursday and make it through work thursday and friday, Saturday and Sunday I am beat;, sleeping is all I want to do.
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Redroan, Yes! All I want to do is sleep. My sister and her husband plan to come visit from out of state. I believe that if my wbc's are too low I won't get treatment on Tues. as planned and then maybe I could visit.
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Nettie - I'd ask the doctor why no scans now, and ask if you can at least have an x-ray on your spine. Mine didn't hurt at all until they made me hop with crutches (because of my femur pre-surgery) which were the wrong height. It also hurts if I put pressure on it, such as a tight waistband. If you're really worried, then I'd say just pester the doctor for answers and don't let him/her brush you off. It may be not be bone mets (am hoping it's not!), but better safe than sorry.
Take care,
Terre
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Nettie,
The standard of care seems to be to wait until there are symptoms, such as persistent pain.
I think women need to insist on a scan at the two year mark, and every two years after. With all the treatments available for mets now, finding it early can prolong life. The official stats say finding them earlier doesn't add to life expectancy, but that research is old. I can assure you that had my mets been discovered before they destroyed part of my spine, I would be a lot better off.
My advice is be pro-active. Insist on a PET or MRI or at least a bone scan after two years. Mets don't cause pain until they start to do damage. Better to know sooner and start treatment.
Also, X-rays don't necessarily show mets--- it takes a bone scan at least. I had complete X-rays when my vertebra was crushed by mets and it looked normal. My MRI showed the cancer in my spine pressing on the spinal cord when X-rays and blood work were normal.
These tests are expensive so they aren't ordered without cause. My advice? Insist. Many of us with stage I and no nodal involvement are here now, with mets, a few years after our initial diagnosis. Cancer can travel through the blood and there are no tests to assure us that it's gone after initial treatment.
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