Bone Mets Thread
Comments
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Shannon, good luck with you surgery! I know you will feel a whole lot better once you are all done and the pain has dissipated somewhat. Know that you will be in our thoughts and prayers that all goes well on Wednesday.
Red here's hoping all goes well for you also.
Love n hugs. Chrissy0 -
Thanks Chrissy!0 -
Shannon, Lake City is North of Carroll and south of Fort dodge. And I will be sending prayers for you on Wednesday.0 -
I have a question about my recent pet scan, hopefully someone more knowledgeable than me here will have the answer! My results were great, NED, but when I got my results the onc only had the written report, not the images. Yesterday I was at the hospital for herceptin, and the nurses had the images which they gave me. Here's my question - my understanding of pet scans is that active cancer lights up - on my images there are large areas of red, and hot yellow points. All are where the original bone mets were so no new sites. But does this mean activity? Thanks to anyone with an answer!
Nicky0 -
Hi Nicky! My understanding of reading a PET is that even though your mets are not active they will still show up. The way they tell if they are active or how active they are depends on the SUV's (Standardized Uptake Value) and for cancer those values are anything between 0 and 15. Non cancer is below 2. There is a formula which the radiologist follow to determine if there is activity and exactly how active the cancer is. The lower the number the better and there are usually pencil marks in the margins which are written by the radiologist as he is doing the calculation.
Hope this helps.
Love n hugs. Chrissy0 -
thanks Chrissy, I knew I could rely in you to reply!!
I've just checked my first pet scan from February, (also NED) only 2 mets have SUV values - one at 1.8 and the other at 1.9. On that scan, there were a few vaguely red areas. On this recent one, no mention of SUV's, but lighting up a lot more. I'm happy to stick with the NED result though! I'll ask my onc next time I see him, but you've really helped - thanks!
Nicky0 -
Chrissy, that was really helpful information because I just went through a similar circumstance with my PET scan and then CT scan and bone scan. They were saying the results were good, but there was uptake in the bone mets. I am seeing my onc on Thursday. I am hoping to see all the scans. The one they can't seem to get a grasp on is my right lobe of my lung. It is a new area lighting up. They hope it is scar tissue from radiation, but it is too scattered, small to biopsy. Now it is a wait and watch approach.
Nicky, I am glad that your scans are looking good.0 -
thanks Teacher911! Hope its good results for you too.
Nicky0 -
Teacher, I'm glad the info helped you as well but sorry to hear that you are looking at an anomaly in your lung.........hopefully, as awful as it sounds, I do hope it's just scar from the radiation. So long as you are not having any other symptoms with your lung, the wait and watch stance is often the only thing left to do.
Love n hugs. Chrissy0 -
I was diagnosed with stage 4 breast cancer mets to bones in june 2009 - had chemotherapy til dec 09 when it started to affect my nerves so we stopped and we are on hold until it is active again and we will start chemo again. I had cancer spread to my rib bone which was removed in June 09. I go oncology appts every 3 months and had one sept 2013 and have ct scans a week prior to appt. Now today my elbows hurt so bad..I cant even open a jar, lift anything I dont know what this could be... I thought maybe cause of bad weather aching bones - maybe arthiritis?I have made an appt with family doctor next opening Oct 31I also called my oncologist nurse today and left a message hopefully she can shed light on this - see what they think I should do. Anybody else out there with these symptoms??
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Hi cbird and welcome to both BCO and this thread. Sorry to hear that you are having trouble with your elbows........you don't quite realize how important that joint is until it causes us problems. I doubt that your problem is caused by mets but it is possible. I would think more likely to be something like arthritis or tennis elbow (you don't need to play tennis to get that). Doing what you have done is a good way to find out exactly what is causing your pain and in the mean time, have you tried some green lipped muscle and turmeric caps? They are both natural anti inflammatory and work well to help relieve pain from both arthritis and tennis elbow.
I have arthritis in just about every joint and have had tennis elbow in the past so know how painful they both can be. Here's hoping your docs can give you a definitive soon.
Love n hugs. Chrissy0 -
cbird - Are you saying your docs removed a rib?0 -
chanah,
my doctors wanted to surgically remove my rib. I chose to try SBRT first to see if that would wipe out the cancer in that rib. It isn't done often, but there are a few women on this board that have had it done.0 -
What is SBRT?0 -
My mom has been taking Letrozole for 6 months. She was hospitalized for 2 nights from shortness of breath and very high blood pressure. Test results showed no heart or lung problems so they attribute it to anxiety. (she is very worried and depressed but not taking anything for that as she takes several pills already. I think we convinced her to start) i just
found out from the onc nurse that her tumor marker has gone up. Isn't that early for the Letrozole to stop working? I haven't told her but what can I say when she finds out at her next appt.? (I live out of town and came to visit when she was in the hospital. I called the onc myself to get the marker results. It is in all her bones. She still has a lot of pain even after radiation. She'll be very anxious and upset when she finds the marker went up so soon.... Her initial marker was 3762!!!!! Then it went to 1300 , then 728, now 863....still very very high!0 -
Hi Kitty3BS,
I am NOT a doctor. However, my MO said that the absolute numbers for the markers do not matter, only the trend. My guess is that the difference between 728 and 863 may not be significant and they probably will not do anything about it for another month. I have exactly your mom's diagnosis - bone only met. They told me to expect that the marker would drop and then level out somewhere, and that it was very unlikely to go all the way to zero. I keep reading jealously about all the people on this discussion who are no evidence of disease and wondering what exactly that means if the markers never drop to zero -- but what I can say is -- I know exactly how your mom feels and am on exactly the same treatment -- it is important not to get over focused on the numbers. There was a beautiful letter that I reread every day posted from the metastatic breast cancer network. It basically said don't forget to live while you are trying not to die. I hope your mom's pain will ease and that the markers will stay level or drop again. Fingers crossed for you - it is hard but try not to worry.0 -
20130502 SBRT is Stereotactic Body Radiation Therapy.........it is a very targeted form of radiotherapy.
Love n hugs. Chrissy0 -
Hi ladies. Sorry I haven't updated yet, just been out of it. Surgery went well and I now have a steel rod in my leg. I have not left the hospital yet, as I do not have the pain under control like I want. I think I will get out of here today. Now we wait for Bx to come back. I will let you know. Hugs!!
Shannon0 -
Shannon, lovely to hear from you! I'm so glad it's all done and now comes your recovery. Hopefully your pain will be controlled soon.
Love n hugs. Chrissy0 -
Shannon its great to hear from you! Glad the surgery went well. I hope you get the pain under control really soon, it'll make all the difference. With any luck, you'll be home in no time.
Nicky0 -
Shannon,
Glad the surgery went well and you recover quickly.
Terri0 -
cbird, Months ago I thought the same as you that the cancer had moved to my shoulder and elbow the pain was so bad in my right arm. Had PET scan that showed cancer still in my femur, rib and spine but my lung tumors had shrunk significantly. Found out from a genetic test that I had done that I have Ehlers-Danlos Syndrome along with my arthritis (Which I take Enbrel injections twice a week). My doctors are having a brace made for shoulder and elbow, along with some isometric exercises to not affect the joint but keep the muscles strong. I hope you feel better soon, I understand the pain you're having and hope it's not cancer.
What I found interesting ladies is I still have all the bone mets but my 29.5 tumor marker test was way down. I thought I was NED, but the doctors told me I'm just in a resting period not as active, chemo has helped my bone mets in hip and also lungs. Because bone mets have not improved as much as they would like we are starting a new chemo and plan starting next month.
Love hearing all the good news and results that so many of you are having, it keeps me going and gives me such hope.0 -
Shannon,
Thinking of you and hoping your recovery goes smoothly.
Caryn0 -
hi i was just dx with small amount two spots of bone mets. start chemo this week.
went to Arlington cancer center. docs in va dont believe in scans. the bone scan showed these two areas.
i had mri brain-neg, ct of abd,pelvis ,chest -neg too. he wants to do pet scan before chemo starts. why?
will i be on chemo forever now? i am 46-he wants a groshong cath put in. not port. anyone else at ACC?
they did bone marrow aspirate- nothing there. how can they really tell its bone mets just by looking at bone scan?
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Fran, sorry to hear about your dx. PET scans or others scans are how many doctors monitor what your cancer is doing, growing , shrinking or staying stable. I have a port so I don't have any info about the cath.
Shannon, Glad to hear that your surgery is over. Hoping your pain is diminishing and that you are headed home.0 -
Fran,
Will they be doing a biopsy? If possible, these are often done to make sure your ER,PR and HER2 has not changed. Many of us with limited bone mets who are ER+ don't go on chemo but go on one of the three AI's. I have never been on chemo and have been NED on Arimidex for two years. This is true for quite a few of us. Will you be on chemo forever? Maybe not, as I said I have never had chemo, but you will be on some form of tx forever. Feel free to pm me about any questions you have re bone mets.
Caryn0 -
he took a bit of bone marrow.
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if you're still ER+, would your mo consider an AI? With low volume bone mets, that's a reasonable way to go. You can always do chemo if it doesn't work.
Caryn0 -
he may. we didn't have much time to talk lasat week. and frankly nothing he said would have sank in. I have heard Dr Dicke is best n world. just hate leaving my girls. grammy is coming up to stay with them. anyone in arlington texas? could use a friend0 -
I am wondering along with exbrnxgrl why your onc isn't trying antihormonals with you. Chemo was tried on you in 2011. Why more chemo now, when the ACT regimen didn't prevent progression? Two small areas of bone mets aren't by themselves a huge concern. Unless I'm missing something in your diagnosis.
Wish I still lived in Dallas. I would be happy to help with your girls.
Your MO needs to spend enough time with you to explain your next treatment options. It doesn't matter who says he's a great MO if he doesn't explain things to you. You deserve his attention.0
