I was diagnosed with mets on spine and pelvis March last year. My oncologist has mostly been relying on CT scans to check progression. In September I reported a tingling in my thigh so had MRI scan to check for spine compression. No compression spotted but the scan did show that the spine met was bigger than they thought and there were tiny ones on 5 other vertebrae. I had RT on the big one in December.
When I saw onc in July this year I told him about back ache so another MRI scan was done. I've just heard that they are now seeing mets on 4 other vertebrae which had not been mentioned before.
I'm quite annoyed that MRI scans are not being given as a routine as they clearly show more than the CT scans.
Also, querying whether treatment (Ibrance and Letrozole since October) is actually working.
I'm being referred for possibly more RT on the spine, appointment with consultant next week.
Just wondering what scan you get as a routine.
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wendle3007
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I get PET scans. 18 mo ago when I first had back pain, I was given a MRI. It showed probable cancer and then I was given a PET scan. I think it’s the best they can offer
CT scans for me, in UK. I agree with everything you say and have had a similar experience. I personally think it is for cost and capacity reasons.
MRI scans are both safer and better. I think, lay person though!
CT scans are apparently too dangerous (x-rays) for me to have had even an annual scan during the years I was supposedly cancer-free (yet complaining of vague symptoms), yet now I am having them every few months...
That being said, capacity issues (MRI scans take a lot longer, fewer machines etc) are definitely a valid reason to save MRI for when you really need to know the detail. I guess...
When I was first diagnosed with mets everywhere including the spine, I had a nuclear bone scan. That must be really expensive. It took a big chunk of my day too because you go and have the stuff injected, wait three hours and then have the scan. It was used as a 'baseline' as I recall so I must ask the oncologist if they are going to do it again!
Not boring at all! I had the bone scan when my BC was first diagnosed but that only showed 1 "spot" on spine and 1 on pelvis - it was the MRI which showed the extent of the main spinal lesion and the other small ones. I asked if I would have the bone scan repeated ever and was told maybe once a year because of the level of radiation involved. However, it's been 17 months since the initial scan and no word of it. I'm not pushing for one though because I believe the MRI is the best one.
I have had all 3 types of scans. My understanding of the MRI is that is gives a closer look at what has already been discovered by the CT Scan. I have never had a PET scan. As far as I know they are not available here. I am in Canada.
PET scans are available in Canada. I worked in a Nuclear Medicine Pharmacy for 20 years and actually prepared the FDG. We often shipped to Canada from CT (mostly to Quebec from our location).
For initial diagnosis I had a CT, bone scan, MRI and bone biopsy. Now I have PET scans every 4 months, hoping to move to every 6 months if blood work is good as scans have been stable. My original oncologist in Illinois would have done CT and bone scans every 3 months. When I changed to my oncologist here in Florida I asked if I could just do PET scans and she said that would be fine as long as insurance covered them. They do a PET/CT scan so I get the IV glucose as well as a liquid contrast that shows the organs too.
Hi, I’m sorry to hear about new Mets and completely understand your frustration. Unfortunately, the clinical practice varies by the country, type of insurance, institutition and even treating physician.
I hope that you didn’t have to wait for results from July until now. That would be terrible!
Is RT planned for the the same spot that was radiated previously? You may want to discuss the futility of doing it
I’m in US with private insurance provided by my employer. I get PET scan every 3months, spine MRI (extensive spine Mets) every 6months, and Braine MRI (every 6 months as well). It’s a lot!
I have liver met diagnosed in Feb. 2019. I had CT scan, MRI and PET scan during diagnosis in Feb. 2019. Had MRI's at first every three months, then 4 months and now 5 months. My oncologist said at last appt that if the MRI is stable in November, I can go to every six months. I am in the US. Best of luck to you and to all of us in our journey.
Hi. I don’t understand why oncologist is so resistant to Petscan and MRIs. My mom was diagnosed 16 month ago and that was the only petscan she had and after that Ctscan every 6 month. I was asking her doctor if we can repeat Petscan and was told that CT is the most accurate. Finally I convinced her to order Petscan for my mom to check if cancer still active after being on Ibrance for 15 months. So the whole Petscan was negative. So I did compare petscans myself and noticed SUV numbers were missing on new Petscan, I got curious what SUV means and looked it up.”The cut off between benign and malignant lesion/nodule is in the SUV range of 2.0-2.5. PET sensitivity and specificity decreases with lesions smaller than 7 mm. Thus, continued follow-up is recommended. It is important to note that many infectious and inflammatory processes will also have high SUV. Typically, a standardized uptake value (SUV), a quantity that incorporates the patient's size and the injected dose, that is more than 2.0 is considered to be suggestive of malignancy, whereas lesions with SUVs less than this value are considered to be benign”. My mom initially was diagnosed with lung Mets. So I checked her lung nodules SUV numbers and one of them was SUV 0.7 and the second was SUV 1.2. And on new Petscan there was no SUVs in lungs,nodules were still there but they didn’t light up and was negative. I was like wait a minute what if those were just inflammation after Covid? I remember asking doctor for lung biopsy and was told that there is no need and those nodules are Mets for sure.I was shocked but still was waiting for oncologist call after the PET results. So not even the doctor,her nurse called and said that your mom’s results are stable and she should continue with Ibrance. I got so angry and said I need to speak with oncologist,there is some changes and you didn’t mention anything about those. So she had oncologist to call me and she did start as “honey, my nurse told you that your mom is stable,what else do you need to know?” I was like well first of all her whole Petscan was negative and your nurse didn’t mention anything about that and also I do have questions. Doctor said I do understand it’s your mom and you are so sensitive but it doesn’t mean that your mom is cancer free it’s just so microscopic and it’s still in her blood. I said yes I’m super sensitive but also I’m trying to know everything in details about her scan results and blood work and what I’ve noticed is that her lung nodules had very small SUV numbers and right now there is noSUVs at all. She said well lung nodules got smaller so it means they did respond to the treatment. I said well if you have inflammation in your lungs even inflamed nodules can get smaller after some time. I was literally arguing with her cause she was careless to my questions. I said I will talk to surgeon and discuss scan results,she said please do but there is no benefit of surgery as I mentioned it’s very microscopic. I called mom’s surgeon and asked them to go over I all her images one more time. Surgeon assistant said that they call me tomorrow. After 2 hours oncologist and surgeon called me that there is a high possibility of nodules being benign and we should do surgery to remove the breast tumor. I’m not a doctor but I did find that possibility and made them to be more attentive and listen to their patients concerns. Anyways mom had surgery 3 weeks ago,clear margins and clear lymph nodes. The plan is being on the lowest dose of Ibrance until December and repeat Petscan and if everything still negative she may take her off Ibrance. So my point is that if you feel that you need MRI or Petscan keep insisting and get whatever you feel comfortable with. I feel like most oncologists are very careless and in my mom’s case I’m glad that I did advocate for her and always check all her results in details. I wish all ladies here to feel as good as possible❤️❤️❤️🙏🙏🙏
My breast cancer surgeon who diagnosed me with stage iv and then sent me around the corner to the cancer treatment center. Before coming up with that diagnosis, she had some tests she wanted me to take at their hospital (they are all affiliated) to have all these tests done.
She told me that she was going to request a PET scan (first one there) but she said most insurance (and I have dual coverage of Medicare and full NYC Medicaid at age 62), will not pay for a PET Scan. She said they will reject it, but will approve the CT scan and told me that really a CT scan does show what they need to find out.
CT shows everything in details and I would say it’s even better than MRI. Petscan is just for detecting spread of cancer but in terms of accuracy CT is the best.
When a similar thing happened to me (much more cancer seen on Lumbar 5 vertebra) it was called progression. Letrozole and Ibrance were discontinued.
I am on faslodex now.
Radiation therapy is for palliation (that is pain relief) it cant cure or stop the cancer in the bone, it also has side effects. I did have radiation therapy for the pain when l was first diagnosed with mets.
I wish I would have known back in 2020 that radiation therapy was just for PAIN. I would have taken a something else. in 2017, after chemo, I had 17 straight days of rads to left breast to "stop" the cancer cells. Well, when I had RT on spot on spine in 2020, that same spot came back in 2021 and I am still fighting to get rid of it. Secondly, had a gamma scan and RT was mentioned as the cause of fibrosis in my lungs, tangible to the left breast. Never again will I have RT. I normally have pet scans and have been on xeloda. Having pet scan on the 16th and a gammascan again on the 23rd. Praying that this is working. I too have some pain in my right thigh. I have noticed that on my 5th vert the pain is gone. I also notice that when I am on my week off, I feel more pain. When I start taking cap again, the pain lessons. I am going to see the doc on Monday the 12th, to go over blood and tm's and ask about micro-dosing, 5 on -2 off.
Wishing you the best. So sorry that they didnt make the radiation purpose clesr to you, l took it because the pain was so bad l could hardly walk. I have fibrosis from it snd colon trouble. I hope the xeloda works for you for a long time l know it has for many people.
Mine is also in my spine and I had radiation targeted there for only 10 days bc they said it was getting close to my spinal cord and if it did, I would be paralyzed from the waist down. Not sure if I believe them and I was told by them that the pain would feel worse after the radiation. But my palliative care doctor already had me on opiates when the cancer hit my spine. It was not until several months later, that they told me it was getting close...(Again, with a jaded eye thinking they are all trying to recoup the millions of dollars they lost (it was in the paper) and how many other hospitals/medical centers, private practitioners lost so much money. Did not help with the pain and am now on 75 mg. of fentanyl patch that must be changed every 73 hours and oxycodone (20 mg.) up to 8 per day (I normally take five) It had made world of difference for me. Been on them for almost two years now.
I get CT every 3 months - I had an MRI recently due to back pain ( I do not have bone mets, just a back problem that started a few years ago). I had one PET scan when the CT showed spots on my lungs at the beginning of my diagnosis - which turned out to be mets to the lungs - I am curious and will check with my doc on my next visit to see if/when I will do another PET scan or if the CT is all I need since they know it is in my lungs. I would much prefer a PET scan as they detail much more, but even with the great insurance I have, they don't like to approve them. Blessings! 😊
When first going to the breast cancer center and that it was in my lungs, the surgeon then set up two days later for a lung biopsy. They gave me some twilight, but I was awake and was watching them put this long like knitting needle into my throat to get some nodules or whatever. No pain, just pressure.
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