Says everything is stable and there is no evidence of new metastases
combo ibrance - Letrozole for 33 months.
I'm going to tell you what has happened
Remember my extreme pain in my feet .... that continues.
I had a pet scan that includes my feet and a lesion appears on the left tibia. I never had a pet that included the lower limbs🤷♀️. They do the bone scan and Rx. and they say there is nothing new all stable.
My question. How is it possible that the previous pet scans did not include the lower parts?
I am happy because everything is stable. but there was a lot of stress these days
happy weekend 🌺🌺🌺
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I’ve been told it’s because long bones are less likely to metastasize- they only scan me below my hips because I had a fairly significant skin cancer surgically removed on my calf.
When I developed double vision only then was an mri scan ordered of my head...a tumour was found in my orbit...I’m now blind in that eyeWhen I asked why I wasn’t routinely scanned in that area...I was just told they only scan if patient has symptoms...too bloody late for me
I have read your previous posts and noticed you have private health insurance, so why on earth did they not carry out MRIs from your head downwards as part of your routine checks?
Surely that should just be ‘normal’ esp with it NOT being on NHS?
Agreed. It's nuts. I am in US, and get regular PET/CT scans that absolutely include my brain. The disparity in healthcare makes me crazy. Barb--how are you otherwise? You have been in my thoughts. Glad to see you posting but so sorry for your eye.
I feel your anger when I had severe pain in my arm I was fobbed off with it's a trap nerve even though by then my arm and hand had clawed ..for 2 years this went on and eventually had a MRI which revealed I had a lesion on the T3 and lesion. On my plexus . The tumour has now wrapped itself round my nerve so like you too late..and now left with arm and hand that are damaged ..no cure as secondary cancer ,. Treatment has stopped it spreading 🤞 but still angry I slipped through the net .. take care
That is interesting Sandra that PET scans don't detect bone disease. My oncologist and radiation oncologist both told me that the PET scan would take the place of a CT and bone scan and be just as good. I am due to have another one the end of June. Now I am questioning if this is the right thing to do.
In August 2018 the order of my studies were: Rx. hip, MRI hip and pelvis, Pet scan and the following every 4-6 months were pet scan until it was not very active and it was demonstrated that the ibrance letrozole combo was working. Then the insurance said no. And it was there that they started doing the CT and Bone Scan. I changed for sure and the pain in my feet started and he comes back to do a pet scan of the lower part. I am confused
Congratulations on being stable with no evidence of disease, also for being on Letrozole and Ibrance for 33 months. I have been on them 7 months and they seem to be working. I would love to be on them a long time as they don't cause many side effects other than thinning hair. When I had my last PET scan they only scanned from the base of the skull to the thighs. I had never had a PET scan before so did not know if this was the normal protocol. I am having another PET scan the end of June, and am assuming it will be the same protocol.
Initially I had a CT scan, bone scan, MRI and bone biopsy to diagnose MBC in Illinois as I had an elevated tumor marker and no symptoms of disease so they had to do all of these tests to determine where the cancer might be lurking. They found a small lesion on the left ischium. When I moved here to Florida, they treated the lesion with SBRT and put me on Ibrance/Letrozole. Then they did a PET scan to see about the status of the lesion and found a new small lesion on the left sacrum which they think occurred in between scans done in Illinois and when I started on the Ibrance as my tumor marker had gone down. They then treated this with SBRT. Neither one of these lesions was causing pain. Now they will do just a PET scan the end of June. Hoping this is the right thing to do.
So interesting. I developed a new, small lesion on my ischium. I asked re radiation and my doctor said no because it is too close to my bladder--it is enlightening to read on this forum how doctors have such different approaches and philosophies on treatment. It sounds like it was the right thing for you, and that there were no bladder issues...
My first lesion was on the left ischium and my radiation oncologist said that she would work with a physicist to target the radiation beams so they would not affect any organs. I guess it worked as I have not had issues with my bladder and the radiation was in November. In March I had radiation on a lesion on my sacrum and again she worked with the physicist to target the radiation so it would not affect my bowel area. Again, I have not had issues. So, I guess the plan worked. I am so new to all of this and although I was not keen on the radiation, I trusted her opinion and that of my oncologist. I agree that it is interesting the different protocols. I thought radiation would mostly be used if a patient was experiencing pain in the areas of the lesions, but her opinion was to do the radiation to prevent the lesions from getting too big and causing pain.
Thank you Sandra. I hope that my doctors know what they are doing. I did not want to have radiation especially since I was not in pain, but my doctors insisted saying they wanted to get rid of the lesions before they got bigger and started causing issues. I'm so sorry that you are in constant pain. I cannot imagine that. I do feel blessed for now and am taking advantage of it by playing as much golf as I can. Not only does it help me physically, but emotionally, too. It's 4 hours of not thinking about MBC. I know that I may not always be this lucky and want to enjoy every moment now. I know from your posts that you are a strong, special woman and I wish that you could find a good way to get rid of the pain you are experiencing. It is hard to understand why so many women are on this difficult journey, but I feel that this site is a godsend for information and support. Sending you hugs and prayers.
Hi, good news everything is stable but like you I have a problem with my feet. A severe infection and pain that healed with antibiotics. My Oncologist didn’t recognise what it was so I was treated by my GP. I haven’t had a full body scan for 27 months. My Oncologist said that unless I have new pains elsewhere in my body the hospital doesn’t do a full scan. I have the scan from my Thorax to my Pelvis. I hope things get easier for you and you get some answers.
I’m on Letrozole, Ibrance and Denosumab for the bone strengthening. I also have Calcium and D3 every day.
Cheryl hi. Please ask your doctor for bone scan in the both legs. I hope your pain is a less each day. I had Reflexology in my feet Is a lot better. Ask your doctor you can too
What is a "bone scan?" X-ray? I have never heard of it. I have had PET/CT from the beginning, every 3 months, then 6 months when no progression, then back to 3 months when they found new bone met and avid primary lymph nodes, and new lymph node lesion (is that a lesion?). Occasionally I have had CT only and that seemed to show different things about bone mets than PET.
She said it detects osteoblastic response, vs. PET/CT which detects metabolic tumor activity. She said they use different mechanisms. I know the FDG PET/CT mechanism. I do not know what kind of test the "bone scan" is -- i.e., how it is done, the mechanism.
The mechanism is similar; that is what I was asking. Both involve injecting radioactive materials, but it turns out they are different kinds. Bone scans may be best for some things (or SPECT), but I found an article on the case of a woman whose mbc resembled mine: primarily mediastinal lymph nodes, with bone mets. This article concluded that the higher sensitivity meant that there was "higher accuracy of PET/CT in assessing progression of bone metastases from breast cancer."
But Lulu is right: this is all a shock. My bone mets cleared up on Ibrance, and, even though I was told it is effective an average of 2 years, I thought the response was so good I would get a longer run. Nope, after 2 years, new bone mets, new lymph nodes.\, and the mediastinal ones have not increased in size but are avid. So...onto the next Rx.
Reflexology is wonderful. We have a Cancer Centre where I can go and have it but it was closed during lockdown. I’m hoping it will open again mid June and I will book to go. Yes, I will ask for a full body scan when I see my Consultant end of June. I feel I should have one now.Hope you are feeling better now.
I must say I still don't understand a lot of things even after reading all your answer.
I have PET scans every 3/4 months.
When I get home, I have a black and white kind of body x-ray. On the one that detected my bone mets, you could see several black spots where the mets were. The darker and bigger the spots were, the bigger/more avid the tumors are.
I also have another coloured picture where some parts light up in orange. This I believe gives information about the SUV max- avidity of the tumors.
There are also some x-rays of the bones where the doctors can see the holes/lesions.
On my second PET, all the black spots on bones had gone. Only the one in the breast showed but smaller and paler.
As for the orange uptake, it had almost disappeared in the bones and reduced considerably in breast.
Last PET just said complete metabolic response - no more black spots and bone lesions gone white - healing from what I understand.
My oncologist told me that 70% of patients under Ibrance achieve this remission and that it lasts a median of 20 months.
The radiologist told me that sadly even if radiologically nothing shows up, it is all still there and in 98% cases it shows up after a while - median 20 months.
Anyway, I don't feel I fully understand what's going on. It all just seems really unbelievable. I feel I'm still in denial.
Just to say that understanding what's going on won't change what's going to happen.
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PET scan results
PET scan results 
