Which is better and why isn’t this a “protocol”. My onc has tried to push my CT scans to 6 mos apart & has no good answer when I ask about a PET vs CT scan for routine monitoring? The radiation is risky is what she told me when asking me to wait 6 mos vs the protocol=3 mos?
Any feedback is welcome! Happy holidays & god bless
I get CTs about every 9 months to a year. While the CT doesn't light up the way the PET does, my doctor says it gives her better information, more precise. She compares the new CT to previous and can see what is growing. So far it's worked for me. Sorry I don't have more precise info
I have my pet scans 3 months apart - I don’t get CT scans at all (Mets in bones and lungs). I want them every 3 months and will push my Dr if he ever increases the spread
Does anyone know If there is a “standard of care/“minimum” protocol for monitoring this drug therapy or an officially recommended one? I’ve lost about 5-10 lbs and typically gain bit in winter; have some “different, new abdomen (both upper outer quadrant & the left side is also kinda wrapping around a big higher in my back—kinda midline but laterally) and rt arm pain doesn’t feel muscular. My next scans are in March; November scans were all good. Just got a “feeling” something is not right? Maybe I just need a bath; random ?: does anyone else use Epsom salts; I never have; but may try that!
Hi Bailey,
I can't answer your question about monitoring your drug therapy, but I would voice your concerns about the pain you are experiencing in your abdomen and arm, especially if it does not go away. When I felt some breast pain a while ago I was scared that maybe a new tumour was forming in my affected breast, so I mentioned it to my GP while I was having a treatment. She examined me and assured me there was nothing there and the pain went away.
I would recommend Epsom salts. They are wonderful! I love to relax in the bath and be soothed by the Epsom salts. I also bought some recently that are for foot soaks and that was relaxing too. I hope you feel better soon.
Sophie ❤
Hi there
I’m in UK and have only had CT scans..never been offered a pet scan..3 months apart up to now
I lost loads of weight before and just after my mbc diagnosis..however the weight is now back on and I look better for that
I have to take painkillers all the time due to a vertebrae fracture..the strength depends on what I’m doing..max strength for riding my horse!!
I do have Epsom salt baths occasionally but they do make me feel weak when I get out the bath so take care!!..they definitely help relax stiff joints and muscles though..you are supposed to stay in the bath for 20 minutes but I can’t cope with that..boring and the water gets cold!!
All the best
Barb xx
Palliative radiation really helped decrease my bone pain. You might ask your doc about it. I am so much better than last year in terms of pain and function. Take care, wishing you many good days.
Hi there
I had a dose of radiotherapy to the fractured vertebrae but it made very little difference so I had a vertebraplasty which didn’t do much either!!!
I shouldn’t moan as I can do stuff even if only for short periods ..at least I can now get out in my horse even if I have to dose up on painkillers..I’ve also started yoga again to increase my strength..
Barb xx
Gosh, what a good topic! It is difficult to understand why there are so many different ways docs handle this! I do wonder what their considerations are, e.g. I hope it's never about insurance company preferences (I worked in the industry for decades...).
I think maybe you are doing so well that the doc views the cumulative radiation as a relevant threat (i.e. you're likely to live a very long time! 
), and does not foresee a near-term negative change in your cancer? If that's the case, I would take it as a good sign!
I've gotten CTs and/or PETs pretty much every 3 months since day one. Once when I was doing really well, I waited an extra month or two before doing a scan, at my own request. Once, when tumor markers jumped, I went in earlier than 3 months.
My understanding regarding PETs vs. CTs... I'm sure we all know this but just in case, PETs show the avidity of the cancer, i.e. how "hot" it is (how voraciously the cancer cells are consuming the glucose attached to radioactive isotopes), but they are not very good at measuring the actual tumor size. CT's don't show anything about "heat", but give clear edges/accurate measurement. So I get both so that we can take heat and size into account, e.g. hotter but no bigger seems to be better than bigger but no hotter...
Different facilities have different machines, so that can be a limiting factor. At some of the higher tech centers, e.g. Sloan Kettering and Duke, the standard seems to be to use one machine that does both PET and CT in one brief (25 min?) scan. At my hospital in Dallas, they use a CT machine that also has sort of a PET-lite, not a real PET, but everyone but the docs seems to be under the impression that it's a real PET/CT, i.e. they think it's the latest/greatest, but it's not. What my doc in Dallas does, if I do scans there, is the CT (with this PET lite) and then she requests a real PET a week or so later, for extra info. Since I hate scans (claustrophobia) I much prefer to do scans at Sloan-Kettering because it's once and done, i.e. one appointment, one machine, and one 100mg dose of Xanax!).
Thank you for the info...cleared up a lot of questions about scans that I had!
I go to Rutgers in Newark, NJ. They have the combo machine, pet/Ct at the same time. The report gives Ct scan result then the pet scan result. They give the radiation injection wait 1 hr then I go in the one machine. Takes about 45 min. I go every three months. My blood work with tumor markers is every month. And I see my oncologist every month. Glad it is only 5 miles from my house. This is also where I will have my chemotherapy next month.
I have ct scans every three month. My only pet scan was my original.
That's the same for me too, Sarcie. I had a PET CT scan in May after several MRI and CT scans on various parts of my body and it's been CT scans every three months since then. Sophie ❤
My only PET was also the original. I trust my oncologist. I am sure if she sees a jump in activity or if I am symptomatic she will adjust the scan schedule. I have excellent insurance right now, so that is not a problem. I do take epsom salt baths. I love baths and the epsom salts are soothing. I could never live without a tub, a bath is so therapeutic.
I have CT and bone scans every three months, Pet-CT every 6 months the last PET- CT was on August/18 was negative then Bone scan was on October/18 was negative my oncologist said PET-CT is more expensive and usually is done not too frequent or if you have a new symptom or cancer markers are going up
My cancer markers are going up a little so I had CT and it was not conclusive so I had bone scan it was good, but still my cancer markers went up a little more and I had the PET CT and it was good But my pain on my hips and low back are worse so I had done MRI and it said that shows reconversion of bone marrow and they can not say definitive that there is no metastasis on that site but because the pet ct and bone scan were negative they do not think they are so for me is inconclusive so I still with the same treatment Ibrance Falsodex and Xgeva
What to do?
Take care and God bless all of us
I had a Pet/Cat scan in February 2018 for baseline then began Ibrance and Letrozole in May, Cat scan in November. No progression, everything got smaller or gone completely. 🧐 Not sure of what protocols are but my onc looks at how I am feeling, blood work results and scans. God Bless You
I have only had PET scans. What areas do people have CT scans? I wasn’t aware they can do whole body CT scans. Thanks
I only get PET. My cancer is diffuse, not big tumors, so it doesn’t show on CT scan. It’s every 3 months.
Kkrouse what have the drs noticed since treatment with your cancer with the PET? What medicines are you on? And when were you diagnosed?
I first had BC in 1992. Mastectomy and chemo, cured. Then it came back in 2011. It’s in my rt. breast and adrenal. I started with Letrozole. It worked for 6 years, but during the last year I had debilitating pain in my hands and feet. I’d been getting PET scans, but our insurance changed and PET scans were not approved. For 9 months I got only CT scans. Then insurance changed again and I got a PET that showed 3 new Mets.
That’s when I started Ibrance and Faslodex. My next scan showed the 3 new Mets gone and my adrenal tumor shrunk to almost undetectable, down from an inch. I just reduced my Ibrance to 100 mg since I’m back in remission and the side effects are so bad.
Kkrouse, that is amazing news that you have done so well for so long. Keep up the good work. You inspire us all. You are estrogen positive I guess. How are you tolerating the ibrance and Faslodex?
The Faslodex is no problem. The Ibrance has been rough. I couldn’t taste food, or it tasted bad. Peripheral neuropathy. Most of my hair is gone. And of course, fatigue. I just dropped from 125 to 100 mg Ibrance and I seem to be getting taste back. I also started zinc sulfate to help with taste, so I don’t know what is making the difference.
I am also wondering if the ct scan did not pickup the Mets but the pet did?
Yes, that’s what happened. Most women are followed with only CT, and it works, but mine didn’t show the new Mets til I got the PET.
I get a bone scan and a CT scan every three months. I have never had a PET scan done. My cancer is only in the bones, so I don't know if that's why??
I have never had a PET scan, just a CT scan and bone scan to confirm my diagnosis in March 2018. I just recently had another bone scan that showed no progression and my tumors shrinking. My doctor monitors my tumor markers and only orders a bone scan every six month, as she does not want to expose me to unnecessary radiation.
My understanding is that pet scans are way more expensive than ct plus they can can give false positive results. My oncologist prescribes a ct and bone scan every 3 months. My MBC is in spine.
Ct scan 
CT scan
Ibrance vs Piquray
Ibrance/Femara cause of severe leg pain?
CT Scan Results 
