Bone Mets Thread
Comments
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Thanks, I'm going to save that! Somebody did mention giving me Benadryl next time but nothing about the prednisone.
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Never had a PET, although MO was considering it briefly when the axillary nodes started coming back to life a few months ago. But I thought I read somewhere that a CT + bone scan was somewhat the equivalent?
They like to chuck me through the MRI for a full spine read every 9 months or so as she likes having an additional imaging view of my vertebrae rather than what the CT shows. I do have additional degeneration and a prior disk problem, though, which complicates the picture a bit so they need something a bit more specific.
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So are CT scans unable to go past pelvic? It seems like that would be so much easier if they would were able to go lower.
Thanks Moth for the heads up on the bone scan timetable. This sounds miserable and too long! Uugh!!
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My suspected met is in the femur (existing met in rt iliac), so I hope the CT was looking below the pelvis!
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I can't see why the CT can't go below the pelvis. They use it for other injuries/illnesses beyond cancer. I know they wouldn't routinely scan below the pelvis as it's not common for mets to show up in the lower extremities and, unless there is a specific problem, they would be able to assess progression from sticking to the trunk and abdomen. I do have some issues with my right hip so this last CT included the pelvis but even that is not something they frequently do. I also have mets to my c-spine and skull but, again, they don't scan this unless I have issues.
I've never had a PET despite the limited info from the bone scan. However, I suspect that a PET would have the same results as my cancer is slower growing (my theory is that it doesn't pick up the radioactive marker as easily given it's more indolent nature). I have had MRIs a few times when we were trying to check on specific issues (possible brain mets which thankfully came back negative and possible spread to the brachial plexus - also negative... phew). The brain MRI was "interesting" with a mask and a scan that took FOREVER. I was in the machine for over an hour and, ironically, we were trying to figure out the source of headaches. That is one noisy machine!
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While the MO thinks it's strange that the CT doesn't correlate, she says that big a jump in activity on the PET is most likely metastasis. I'll be switching off of Verzenio and starting Olaparib/Lynparza, since I'm BRCA+.
She said Verzenio may still be an option in the future, but this is my only site of growing met, and she wants to get it.
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Happy Holidays Everyone 🎄Merry Christmas
Praying for all of us for a Christmas miracle
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star2017
my CT scan went only to the pelvis but I had a bone scan that day as well. They saw a few spots on my right femur and my left humerus and ordered xrays to assess. My right femur was not mets but lit up from a previous trauma and my left humerus was bone mets.
Hoping you only have to do one test
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Thank you for the insight, El Tigre. How do they determine what is a metastasis and what isn't?
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star - it looks different when you know what you're looking for. Diagnostic radiologists usually do 5 years of residency to learn how to read the scans. I think it's magic ( esp ultrasound, I hate looking at ultrasound. I can sort of make my way around an xray and I'm getting a bit better at ct but u/s is just grey blobs for me lol) but really it's a well trained eye
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Moth, thank you so much for the insight. When I first got the scan of the metastasis done back in the spring, the radiologist thought it was Ewing's sarcoma and not bc metastasis. I was freaking out that I'm somehow sprouting new strange cancers. However family members who are docs plus my MO and new Ortho onc both said that it looks like BC and that there isn't a reason to lean toward something else, so I guess I don't have complete faith in those radiologists. However the ones reading the PET/CT or bone scans I imagine are much better trained for this. Anyway, tho this new site isn't showing up on the CT, the increased activity on the pet (4 to 13 in three months) seems to have convinced everyone it's a new met, and so the plan is to switch meds. I am seeing my Ortho onc tomorrow, but I imagine he'll agree with the MO's plan. MO did not recommend radiation, but maybe the Ortho will have a different recommendation.
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I wanted to update in case anyone is in a similar situation. The Ortho oncologist recommends radiation because of the location of this new suspected metastasis (top of femur). We're just trying to figure out whether to go to the great traditioanal RO I've seen in the past or to try cyberknife/proton therapy, since my MO's hospital has it.
After the radiation, on to Lynparza (bottle arrived yesterday).
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Star2017, I had SBRT/cyberknife radiation to my iliac crest last week. The radiaiton onc chose this over traditional radiation due to its location and to prevent other pelvic organs from radiation field.
If cyberknife is an option, I personally prefer this since traditional radiation will cover other organs, which means more side effects.
On the con side, cyberknife results in more inflammation and hence more pain for a week to 10 days post radiaiton.
Good luck!
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cathy1988, do you have metastatic breast cancer? Can you introduce yourself? This is the stage 4 only forum. Thx
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Just curious if for those of you that have had a bone scan, do you notice more bone pain afterwards? I know it is different from a PET scan but I feel like the nuclear crap they use is not sitting well with my body. I do fine with CT scan even though I get diarrhea from that stuff you have to drink but this nuclear stuff I feel was too much.
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I don't notice anything after my nuclear bone scans. Could you be sore from muscle tension from having to be still for a long time?
My ct contrast is an injection. We never have to drink anything other than lots of water to flush the contrast out
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I don't notice any more pain after the nuc med bone scan. Like moth said, it could be from tension.
I've stopped having to drink the contrast stuff before the CT scan. They do inject me during the CT scan, but the nuc med nurse is good about leaving the IV line in and then they take it out during the CT scan. It's nice not having to get poked twice and the CT people appreciate not having to stick me.
I'm (so far) able to schedule them both on the same day. I bring my knitting or my Kindle to keep me occupied during the wait times.
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I don't notice more bone pain after bone scan.
I have to do both the oral liquid and the injection when I have my CT scans. I wonder why some of us have different protocols for this.
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I used to do both the liquid and IV contrast, but two scans ago Scripps changed their procedure. Now it's just the IV contrast. Not sure why - maybe I'll ask at my next scan appointment.
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I have to drink "the stuff" too, thankfully it doesn't taste too bad.
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I used to be a Radiology nurse for 10 years.
Oral contrast for CT scans has largely been phased out here in Australia and probably much of the world. It used to be needed to help differentiate bowel and stomach from other organs and structures. However with the advent of better technology and higher resolution CT machines, it is now not needed unless in specific cases to do with the bowel itself like looking for leaks etc. Sometimes they do use water instead but I have not had any form of oral contrast for at least three and a half years.0 -
I had a horrible reaction to the contrast at my last CT scan so that's good to know. They told me that next time they would give me Benadryl first but I'd rather skip it altogether if it's not necessary!
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I've had to drink the oral contrast once or twice, however not in the past year of testing. With the Pet/CT I usually just get the injection that makes you feel funny/warm briefly. However this last time the tech did ask me to drink some water. I mentioned to her it was unusual, but she said she thought it was standard. Anyway, I don't mind the water.
I wonder if the difference is bc if different machines as well as different sites of interests and our varying body shapes?
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Parakeet was that the oral contrast or the IV contrast?
Because they still need to give the IV contrast most times. If you had a severe reaction to either, I would be refusing both, the oral because it may not be necessary and the IV because reactions to iodine based contrasts can be very dangerous. If the reaction felt horrible but was mild, they can give premedication, we used to used a mild dose of steroid.
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FosterKitten Mum - I have a severe allergy to the contrast in the IV. I have to take prednisone 13 hours before, 7 hours before and 1 hour before the CT scan. I also have to take two Benadryl tablets 1 hour before scan. I have done this for several years and encountered no problems.
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It was IV contrast! About ten hours later my entire body started getting red and itchy and it took 3-4 weeks for the resulting lizard skin to return to normal.
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Parakeets, the water was just to ensure you were hydrated. I’ve never had to drink contrast - always IV - but it seems to be standard to require the patient to drink 1 litre of water and fast 2 hours prior to the scan. I think it’s probably unnecessary in most cases unless they are looking at the stomach or other areas where hydration is critical. (For liver or bone, not necessary.) However, they also want you to drink another litre of water after the scan as they want the contrast flushed out of our systems. It’s hard on the kidneys so drinking water is important. For a while I had to have creatinine tested before they would book my CT as a sketchy kidney function rules out contrast
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A CT scan showed fluid around my lung. So I had a thorencentesis to drain it. 1600 mm of fluid came off. They are going to look at this fluid to see if there are cancer cells.
Simultaneously, I am dealing with nasal congestion, headache, fatigue, low energy, phlegmy cough. Has anyone dealt with this? I don’t know if I caught a bug, or it’s related to mets? Or lung mets? I am thinking about calling my primary care doctor, but I can’t imagine what she can do.
I will meet with the MO Thursday to get the results.
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Hi all - New to posting on this thread but have read through so many of the posts.
My question is about *active* disease and the scans/tests that are conducted to determine whether or not disease in the bones is active or not. My bone scan shows osteoblastically active sites, but my understanding is that it could be from disease or a result of bones healing/rebuilding (Zometa induced or otherwise.) So if you have bone mets but are NED, do those spots not light up anymore on bone scans? Thanks!
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mexhay- my MO recently told me that they have to compare old scans with the new scan to see if anything is new. I’m not NED though.
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