Bone Mets Thread
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urban farmer- thanks for the info. i never knew that! my tumor was blastic so that makes sense then that it didn't show up on the bone scan.
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Just wanted to say that I think this is a great website and I am really learning a lot from all the threads - I am prompted to ask questions of my oncologist which would otherwise never have occurred to me.
HLB, the only reason I had a petscan was because my tumour markers were increasing by about 20 a month, and a ct scan didn't show anything. My oncologist felt that the next step was to go for a petscan and lo and behold there was a tumour at the top of my left leg. I realise that a lot of people find that in their case tumour markers give false information, however I suspect that you are like me and your tumour markers have usually given an accurate picture of the situation. If that is the case and your tms are going down then you don't need to worry about having a petscan.
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I too had increasing tumour markers over a period of time (went from 18 to 85) which prompted investigative scans; Bone scan, hip xray, CT scan, PET, hip MRI, PET again and finaly biopsy (with CT).
Biopsy confirmed met on my upper femur.
But during the time I was waiting for the first PET scan my markers went down???
Recent blood work only shows a slight increase (but outside the normal range).
We'll see what happens after rads - I should get retested again before my next MO appt in September.
Marie
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My bone mets are lytic and don't show up on MRI, but do show up on pet-ct, ct, and bone scan (although slightly different in each one). I think as long as you have one type of scan that shows the mets, then just keep doing that scan type as a comparison.
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To throw my 2 cents in ... when I went for a second opinion to a major cancer institute, the MO there told me he no longer orders bone scans because it show healing as well as areas of mets and it's often hard to tell the difference. I now have CT scans (mainly for organs) and when there's a question about bones, MRI or CT/Pet (combo). The Pet will show areas of increased activity, which can sometimes be due to inflammation. It's an "educated" guessing game, at times. Before my radiation to spine, the RO order MRI's with and without contrast of the spine and relied on those results.
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Hi all,
I am new to this forum, but started reading your posts a couple of days ago. Just went to my Oncologist today to find out my breast cancer has metastasized to the spine from my neck to tail bone, ribs, and my lungs. It was not really a shock that the cancer was in my back, as it had been killing me, but it was a surprise that it was so widespread and in my lungs as well. When I was first diagnosed in 2008, I discovered this site, and followed along with the women who were starting chemo when I was. The problem was, I was satisfied with following along with their posts, but only a couple of times shared my own. Therefore, tho I feel like I know them, they do not know me. I do not want to make that mistake again. I am looking forward to sharing with you all Right now I am waitng to have an MRI to make sure that none of the vertebrae are putting pressure on my spinal cord. I will then have a biopsy to see if it is ER PR or HER2 positive or negative. My report says "lytic" lesions, I can't remember what you all said about that.....also, any suggestions for the biopsy? I am nervous about that, I thought the breast biopsy was pretty painful, but in the bone? Yikes! Then a port, and chemo. Any of you have chemo? It seems like I hear a lot about radiation but not so much about chemo. Any suggestions from any of you would be more than welcome! Linda2 Oh, how do I edit my personal info??
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Hi Lindatwo and welcome although it would be better if you didn't need to be here. To edit your personal info just go to your profile and click on edit that will open where you entered your info in the first place and you can change or add to what ever you need.
I didn't have a bone biopsy as it was startlingly obvious what it was so cant help on that front. As for chemo........for me, not yet. I am being treated at the moment with Femara, one of the AI's. Chemo has probably been suggested for you due to the fact that th cancer is all along your spine and also in your lungs.
Lytic lessions are small holes in the bone which weaken the bone the Blastic ones are where the bone grows too much in one spot and you end up with lumpy bones.
Hope you chemo does good things for you and your biopsy is gentle.
Love n hugs. Chrissy
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lindatwo, I had 2 bone biopsies and found them to be very easy ... of course, they gave me conscious sedation so I had no pain. I would assume you will be well medicated (you can certainly ask what the plan is). Good luck!
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hi lindatwo. I did have chemo in 2011 to treat inflammatory breast cancer. After 6 months of ACT the PET scans showed-nothing! Chemo had not only reduced the inflammation in my breast, which was then removed, but it also shrunk/got rid of mets to my spine, ribs, pelvis, and hips. Since then other PET scans have shown very, very small possible mets in my hips, pelvis and spine but they are tiny and holding steady. Chemo is tough but doable. A port, in my opinion, is wonderful. My first chemo was through my veins in my arm (before I got a port) and I hated seeing and feeling it in my arm. You will get through this. Wishing you great results.
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Thank you Chrissy, your explanation of lytic lesions is helpful. It looks like Femara has been a great treatment for you, Has it been 10 years since your diagnosis? Syrmom, thanks for the encouragement, hopefully my biopsy will go as well as yours did, and I will ask about the conscious sedation. Chickydee, I wasn't crazy about the idea of a port when my doctor suggested it, I had chemo in 2009 without a port and didn't really have a problem with the IV's. However, my chemo then was 3 months, and this series will be up to 6 months (weekly) depending on how the cancer responds, so I think the port will be a good idea. I certainly hope my treatment is as effective as yours has been. I am not sure which chemicals I will be getting yet, I told my doctor that I didn't want to lose my hair again (I JUST got it grown out to where I love it!) and he smiled and said he would take that into account. Of course when I talked to my kids, they said "Oh no, you're losing your hair we"ll all shave ours too....you have be as agressive as necessary"! They were being funny, but I know they want me to do whatever I can, and of course I will. They will respect whatever decision I make. Thanks for listening, it is so nice to vent with others that can really relate!
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Lindatwo it's almost 10 years from my original dx but four and a bit (got to state the bit....lol) with mets. Yes, Femara has been good to me both treatment wise and SE wise so I'm hoping it will stay that way.
When we think about things and what affects us hearing we have cancer seems to be nothing in comparison to loosing our hair. For some reason we all feel as though our hair defines us. Hopefully you won't loose yours again so soon.
Love n hugs. Chrissy
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Chrissy, completely off topic, but what is the sugar glitter cheeks thing in your signature? What does it mean? I've been wondering for a while!
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Latte some time back on the drinking thread where a lot of virtual partying goes on, one of the girls put up this list where we had to use our birthday to find our stripper names.....Sugar Glitter Cheeks was mine and I couldn't resist putting it in my signature......lol.....and you are the first to ask me what it was.
Hope you get a giggle.
Love n hugs. Chrissy
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Ah thanks Chrissy! I thought it was something to do with the previous sentence in your signature, but couldn't work out what. Can't believe nobody else asked...
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My first time here
hello everyone. Was diagnosed in 10/10. It's been 2 1/2 yrs of hormonal treatment. started with femara for 7 months then a nodule on my lung grew. switched to falsodex and it was gone! Been on it ever since with good results. My markers are great, labs good. Some of my bone mets have gotten smaller. It's a small victory considering my bone mets are just about everywhere. But my last ct showed 5 new nodules, making it now 9. I'm not sure what that means yet, next appt. in 2 weeks. Lots of fatigue. I deal with joint pain ( hands and knees) but its a trade off I can live with. Zometa and zoladex are also part of my monthly treatments. Taking calcuim and vit. D per Dr. orders, dictated by monthly labs. It is what it is for now. Want to learn from everyone what else what is out there, if things change. How we deal with blending this within ours lives, I know it's been 2 1/2 yrs but feels like 2 months sometimes. It's good to vent somewhere other than my husband. I'm sure it's hard for him.0 -
Hi Hv3 and welcone to BCO and this thread. A good way to start is to go back and read what has been posted so far that way you can be as updated as we are.....lol.
Hope those new somethings are nothing. Oh yes! This is a great place to come to vent because you know, we reallt do get it.
Love n hugs. Chrissy
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Hello hv3!
As Chrissy said, you came to the right place to vent, and we hope you find our community a very supportive and helpful place full of knowledge and great advice. Welcome!
---The Mods
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The bone biopsy was easy cause they sedate you. You're not knocked out but you don't feel any pain, at least I didn't. The breast biopsy was horribly painful. I thought they were ripping my entire breast off from the inside out. That's because they don't sedate you, I only got a local which only numbed the skin and nothing deeper. I thought it was barbaric to do it that way. So try not to stress too much about the bone biopsy procedure.
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Hi Lindatwo, I had a bone biopsy last fall. I was just given something to numb the area, my left rib. I had no problem with it at all. I also did 4 months of AC and Taxol. I had a port put in, at first I hated it because it felt funny but I have gotten use to it now. The AC didn't bother me but the Taxol was harder for for me with the neuropathy. After chemo I had 36 rad treatments. Now, I receive monthly Zometa infusions and take Tamoxifen daily.
I hope your biopsy goes well. Good Luck!
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Hello hv3 and Lindatwo, welcome.
I need to share a little this morning. I've had mets for 1-1/2 yr and last week's PET scan was the worst yet. My bones and lungs are worsening. New lytic lesions. Pleural effusion is back. Cancer lumps in my right breast/underarm. I've told my immediate family and friends with BC, but no one else. Don't even want it on CaringBridge. Dr. says it's millimeters not centimeters, so I know it could be worse. I just want a treatment that works, something to stop the spread. I'm starting Tamox today. Never took it as a preventive after Stage I. If I can handle Tamox, my Dr. wants me to pair it with Afinitor. I can manage the bone pain during the day, but sleeping causes extreme bone pain from staying in one position too long. I wake up in tears from the pain, and DH worries. I really dislike that my family has to suffer from my cancer, too. Thanks for letting me share, ladies. I just needed to say "OUCH" to someone who understands but won't worry like family.0 -
So sorry, TarheelMichelle. Hope the Tamox and Afinitor work for you!
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i had a biopsy to my right femoral head. i found it weird and scary in theory but actually easy once it was done. i didn't have any sedation but was offered ativan had i wanted it to calm any nerves. they numbed the area up with needles and told me that would be the worst part, but honestly i barely felt anything. during the actual biopsy, they warned me that i might feel some pressure because of where mine was located and because mine was blastic, which would've been a bit weird if i wasn't prepared, but was fine since i was expected it. as everyone else was saying, it really was nothing bad at all. compared to all of the other stuff we have to go through, this was extremely easy, and no pain after (unlike the breast biopsy). as all the other ladies are saying, don't worry about the procedure itself.
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so sorry, tarheel. i understand how you feel about not wanting to share news like that. i have seen encouraging stories from other stage iv women who have had positive responses to hormonal treatment. hoping that you experience the same. i had a bad headache, some queasiness, and hotflashes at the start of tamoxifen, but those side effects quickly subsided. the hot flashes lingered a bit longer, but given all that you are already handling, i would think you would find the minor temporary problems easy to handle. sending positive thoughts your way.
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I love conscious sedation! A good dose of Versed and a painkiller given by IV in addition to a local to the area being biopsied and there are no worries. My bc was to my upper femur. I am a big baby and don't want to feel a thing!
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Sorry about your news tarheel. I pray that things get better for you. All of us bc ladies have to stick together. When one has troubling news we need to rally around her and thats why I love these boards so much. They have helped me through some awful times.
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Hi Ladies!
Freaking out here...have a question about bone/spine mets with Lobular...
As some of you may know, I had double masec/recon this past January and am now on Dr. Wong's herbal protocol. I am feeling great except, my lower back and hip pain has gotten alot worse since my surgery. I did have a bone scan before my surgery and it was clear as well as a ct scan...BUT, we all know how Lobular may not show up! I have had progressive back pain since the birth of my girls 6 years ago...I was thinking it was due to my botched up epidurals. There are days here or there now that I have such sever lower back spasms that it brings me to my knees. I went to a chiropractor and it helped and icing makes it better. I am so scared. What do I do? Do I go for an MRI? How do we find Lobular mets to spine if this is what it is? Yikes....OOPS, just realized this is for stage 4 only....is it ok to ask a question here? if not, I am so sorry and will delete my post!!!
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Joellelee,
I don't know much about lobular bc but hopefully someone who does can help you. There is also an excellent thread on the stage IV forum for those who are not stage IV but have questions. Check it out.0 -
Thanks! I will post my question there! Thanks so much!
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Joellelee ... from my experience, usually when I have relief from pain from ice, etc. it's not the cancer causing the pain. It can be tricky to figure out as I have a long history of back pain, disk bulges, etc. and now cancer mets throughout the spine.
If it were me, I would contact the Onc and explain increasing back pain and request an MRI with and without contrast; that has been the best exam for detecting what's going on with my back, so far. Also, until I was sure there were no mets in the spine, I would not see a Chiropractor. I had Chiropractor care for years (before cancer) with much success; however, I'm told now that could possibly cause a fracture in the vert. My Chiropractor won't touch me now anyway, with good reason. Good luck to you.
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I would like to hear about people's experience with radiation for pain. I started to have similar pain to what you describe the day after my first Xgeva (am on Letrozole and Xgeva since May 24 (May 29 for Xgeva)). Was using advil for pain but doctor was still concerned about the weakness in my left leg that made it hard for me to get in and out of car, roll over in bed, etc as you describe. Decided to wait a couple weeks and then the day before we were going to make a decision whether or not to get an MRI of my hips, I started rectal bleeding - had to get a colonoscopy and turned out to now have ulcerative colitis on top of breast cancer. So no more advil for me.... (per the GI, the oncologist says advil is still ok - need to sort that one out). Anyway, now the oncologist did a repeat x ray of femurs - looks just like the one two months ago when I started all this. I am seeing an oncological orthopedist on Monday (to rule out need for surgery) and then he wants to do radiation (10 treatments, daily M-F for two weeks) to the hip. I am not sure I am ready to do radiation since it is slowly improving. His comment was I could wait but I would just have one more month of pain. Looking to hear others' stories. The oncologist said there are NO side effects to the radiation but that can't really be true. There has to be some long term consequences or we would not all worry about getting x-rays (before we get cancer diagnoses) all of our lives.
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