Can any of you ladies give me some feedback on getting scans? I have stage 4 breast with mets to the bone, will be three years next month. For the most part my onc really just uses the tumor markers. I have read alot of your posts and alot of them refer to "scans' I am new to this site (by the way just love and very grateful to have found.) I find it very interesting to see what treatments are being used compared to mine, which by the way I am on femara and zometa every two months( onc reccomended slowing down on the zometa cause damage to liver and kidneys) I also would like to know if everyone feels like do when the weather changes, I live in Ohio unfortunatly. Or when you wake up in the morning and that first movement of the day. Thank you for your time and will be anxiously awaiting your replies.....
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
scans
- By stef67
- Posted October 25, 2009 at 1:13 pm · 8 replies
- In Treatment options
- Shared with the public
Explore topics in this discussion:
8 replies
- Oldest first
- Newest first
- By hillbillygirl
- Posted October 25, 2009 at 2:10 pm
- Report post
hello and welcome to the group, you will really love it. you said the cancer is now in the bones. where in the bones also is this your first or second time around. i too have bone mets in the back and ribs since june 08, second round, stage iv now. when we refer to scans we mean a pet scan ct scans, and or bone scan. we all get different things ordered to check up on our progress of the meds we take. my onc. does not even look at tumor markers anymore they are not reliable in my case. so everyone is different. I also have MRI on my back because it is the only thing that shows my mets back there. I am from Ky. know a lot of people from Ohio. Welcome.
- By stef67
- Posted October 25, 2009 at 2:38 pm
- Report post
I was diagnosed at stage 4 mets to spine femur pelvic ribs in 06. The tumor markers are up and down never have been steady. you had mentioned markers arent reliable in your case, why? I just had a mri on my right leg, having alot of pain. There is a pinched nerve in the narrowing of spine pressing on something, they mentioned an orthapedic or neorosurgeon. Havent discussed it with my onc yet as he was out of country and returning tmrw.
- By hillbillygirl
- Posted October 25, 2009 at 3:36 pm
- Report post
when my cancer got worse and i had mets all over my back, the turmor markers stayed the same. when i was on treatment that was working they shot way up so they give false positive readings. sounds like you will need a good neorosurgeon. a pinch nerve is very bad pain. also i had several broken bones in my neck and back from the cancer and a neorosurgeon put cement like mat. in there to hold them also i have raditation several times on bones in neck and back for broken bones and pain relief. I can also relate to the weather and waking up with pain. I am now just started the Femara and have been on zometa for 16 months. i am hoping the femara works for awhile.
- By 2xnow
- Posted October 25, 2009 at 4:06 pm
- Report post
Each type of scan can give your drs different info, depending on where the cancer is and what type it is.
Some use MRI along with CT's with contrast material on both and some use bone scans. There also is a PET scan. Just google these words in and you can see the difference in what they each can tell a dr. I too am on Femara and Zometa but just started in Aug. when I was diagnosed with mets to bones- lumbar, peivic and ribs. I leave tomorrow for another round of tests and see my onc. to determine if the plueral effusion in my lung is cancerous. It will be hard to tell since I have had two bouts of bronchitis in the last two months though. There are several tumor markers used for various readings, the latest for breast cancer is the CA27.29. Which one is your dr. having done? Also how are your blood test results? Are they the same or do they vary. The three modules most drs. use are blood, markers, and scans. If you are on Zometa, you need to drink a 1/2 gal water each day and on day before and after injection water is very important in order to flush out kidneys. It is a drug that is very hard on the liver and kidneys but is suppose to help with the pain and bone loss. I am from No. Ill. and yes it is hard to get out of bed in the morning. Some days it is hard to even walk depending on weather. Nasty climate we live in. Hope this helps.
- By Lynn06
- Posted October 25, 2009 at 8:45 pm
- Report post
I was diagnosed with bcmets to bones in 2006. Bone scans showed very little but pet scan lit right up. MRI's also show the cancerous areas. My tumor markers are usually pretty accurate but my onc uses them as a guide only because so many things can affect the readings. I was on Zometa and Femara too.
Had a good 18 month run on Femara then lots of progression. Been on different chemos for the last year. But still on Zometa. Mets to my femur, spine, hips, ribs, collarbone and neck. Am seeing a spine specialist next week about kyphoplasty (sp) which is putting bone cement in vertebrae that are damaged to lessen the pain. I would be very nervous if my dr. did not do scans at least every once in a while to check for any progression. I would question him at length as to why he does not think scans are necessary for you. I live in Fla. and getting up in the morning stiff and sore is not just for the north, believe me!!!!!
- By Groovygirlcool
- Posted October 25, 2009 at 9:17 pm
- Report post
Hi Stef
If you put "Can a PET scan not see bone mets?" into the search box on the top right-hand side of this page, you'll bring up a post with lots of info on bone scans/pet+/-ct scans/mri's etc for diagnosing and monitoring bone mets. Also of course, just put in bone mets-scans etc and there'll no doubt be oodles of info for you.
I'm 4 years since dx next month, am on monthly Zometa (the kidneys & liver are ok); Zoladex monthly(shut down ovaries) and since progression of mets in June, assumed menopausal, so Femara to boot.
I've only just had my first ever blood markers taken for a new Onco, previous Onco put no faith in their accuracy. I had si monthly bone scans, with ct follow-ups most times. The last year was 3 monthly bone scans. Which I thought was excessive exposure to radiation.
Apparently the new Onco won't be doing scans unless I have pain - I saw her registrar at the hospital last time - haven't met her yet. I'm a patient in the Australian public hospital system- dropped out of private medical 3 months prior to dx!
And yep! the bones grumble when I first get out of bed in the morning (and other times!!) - but I've also put on a stack of weight in the last 3.5 years and I know that doesn't help! I've noticed joint pain in my wrists, thumb joint and elbows since starting Femara, and a lot of fluid in my feet and ankles, despite daily hour long walks. Que sera...
Welcome aboard : ) xxxGGC/Heather
- By stef67
- Posted October 25, 2009 at 9:47 pm
- Report post
I want to thank you for your reply. Like I mentioned I had just stumbled upon this site and had wished I had found it three years ago. This whole time I wanted so badly to talk to someone that was going threw what I was. Looking at all the blogs I have to admit has been a little overwhelming. I basically have been going threw this alone with little support. My girls lost their father in 2003 and I had been diagnosed in 2006, so as you could imagine I try to be as strong as I can and keep everything as normal as possible. However I feel like I have a lot to learn, I guess I have assumed to much. Presently I am dealing with a great deal of pain in my right leg, had an mri and they did see by the narrowing down in my spine something that had to do with a nerve they had mentioned dealing with an orthapedic or neurosurgeon, can anyone give me a reccomendation on witch? this is a new one for me. Secondly when I have this talk with my doctor I will write down exact term on my diagnosis(the positive negative thing) and how he determines when we go to chemo, I have been on xeloda in the past which I think he monitored with my blood work/tumor markers(would that be right?) to my knowledge little results.
After reading alot of your blogs, I am starting to question my treatment witch seems to be a little "lame'. Am I to assume if all of my counts are within range than I coast till things get out of whack and then thats when the doc considers which bullet to use next? And it seems thats all we really talk about when I am scheduled to see the doc is " your markers are still a little high, we are going to do another, or your markers went down in june, and they are back up" whatever that means, and thats about all I hear. I want to thank those who took the time to read and offer me advice, I appreciate it;)
- By Shanti
- Posted October 26, 2009 at 3:00 pm
- Report post
I have bone mets which show up on PET/CT scan and MRI. My tumor markers are in a normal range. I guess if they started to go up that would show something but as they stay in a low range my oncologist looks at the scan results to see if the treatments are working.
Isn't this a wonderful site? I think it is a good idea to get a clearer idea of the type of cancer you have and by all means ask your doctor to explain it to you and why he has picked the treatments he has. It might be premature to label your treatments as "lame" however. There doesn't appear to be agreement among oncologists on how to treat breast cancer. However if you have some knowledge yourself you can feel better about the decisions you make.
Terry
Add to the discussion