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Had the dreaded follow-up with Oncology today hoping to get a grasp and plan of attack on those raising PSA numbers. If you or you know someone with cancer this may help. #PSA #cancer #PETScan #BoneScan #therapy #radiationtherapy #love #MRI #pizza #healing #fears #dream #writerslife #cancerfight
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This is the first page of my CT scan report for the people who are skeptical that I still have a fractured neck because it’s been 4 years and it “should have healed by now”.
I highlighted the part where it says I still have fractures at C5 & C6.
Why is it still broken? Because there’s still cancer in there. lol. This is why I had rods and screws placed (from my C4-T2). My vertebrae needed to be stabilized as my spine was weak from the cancer eating away at it.
It also prevents problems with the cancer interfering with my spinal cord.
The second picture is my most recent bone scan. “Increased uptake” identifies where the cancer is in the bone throughout the body. While the cancer hit my cervical spine pretty hard first, the next worst spot would be the SI joints.
Many mornings I wake up with nasty sciatica and my lower back aches. I’ve been offered palliative radiation a number of times for pain control but I’ve turned it down. Unfortunately, it won’t help to shrink the cancer and the side effects aren’t fun (ie: severe nausea, more pain, bladder issues, etc). The side effects are usually temporary though, so I may still opt for radiation as a pain reliever in the future.
I tried to feed my reports into chatGPT to create a “visual” of my spine so people could understand more (many of us are visual creatures), but it looks like a horrible mess. It’s not as bad as what it’s showing - at least, I hope not. I know I only have a couple of small tumours on my skull, ribs and arms. I especially have no idea what’s going on with the hardware in that left picture. 😂
As AI improves, I’ll likely get a better example to share. In the meantime, I hope reading the scans gives a little more idea. I’ve requested scans pics from the hospital but they put them on CD and it’s a hassle. I wish they could just upload them to the portal. Regardless, they’re hard to interpret by a lay person. So unless you’re a radiologist, they’re difficult to understand.
Anyway, to reiterate from a previous post, my scans are showing stable - which is the best part and all that really matters.
(TW FOR DISCUSSION OF HOSPITALS AND MEDICAL PROCEDURES)
HI.
Has anyone here had a bone scan, and if so, what was it like?
I have one this Friday, and I've been excited about it because I love the hospital, it makes me feel safe and cared about. But this time I was thinking about the actual procedure, rather than the hospital, and I realised I dont know what to expect and that makes me nervous.
Update: Somebody explained! thank you ^^ Link to post here
Brainy Bone Balls
Broken bones take time to mend but research has shown that they heal faster when there's accompanying brain damage. Scientists studying this conundrum uncovered a surprising method of crosstalk between the brain and the skeleton: damaged nerve cells release tiny balls, called small extracellular vesicles (sEVs), which travel through the bloodstream to the bones. The image shows the concentration of sEV’s, ranging from low (blue) to high (red), in the skull, long bones and vital organs at the bottom. Left and middle are samples from untreated controls. The sample on the right was infused with sEV’s from damaged brain cells and has red patches in the long bones where the balls have accumulated. Analysis of the sEV’s cargo revealed they contain biochemicals which stimulate bone growth and so accelerate healing. Since they can be assembled in the lab they have potential as a treatment to hasten fracture repair.
Written by Julie Webb
Image from work by Wei Xia, Jing Xie and Zhi-Qing Cai
Guangdong Provincial Key Laboratory of Bone and Joint Degeneration Diseases, Department of Cell Biology, School of Basic Medical Sciences, Southern Medical University, Guangzhou, China
Video originally published with a Creative Commons Attribution 4.0 International (CC BY 4.0)
Published in Nature Communications, October 2021
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I can’t be alone in this- Right?
Is anyone afraid some random doctor is gonna take away your diagnosis that you’ve had for years and just call you crazy?
No? Just me?
It’s happened to me once.
He told me I was just emotional and tried to say I have something like phantom limb syndrome even though I have all of mine. Then proceeded to wipe my medical history of the diagnosis and put “emotional” in my notes.
It didn’t help that I cried when I tried to fight him on his new diagnosis.
It doesn’t help to know that doctor was googling what CRPS was in the room with me- It doesn’t help to know he wasn’t trained to deal with nerve conditions
It caused PTSD.
I ended up switching hospitals and teams over it. I changed from a pain clinic to someone who specifically works with CRPS and they put my diagnosis back on my chart.
I’m going in for a nuclear bone scan Monday and I am now having panic attacks that the results (no matter what they may be) will make my doctor change his mind about my CRPS. -When in fact he ordered one to check and see if my CRPS has damaged my bones over the years.
The trauma these doctors have left me with is so severe and I hate it.
I’ve been diagnosed with PTSD over this- I wanted to add this in so you know I’m not using it to be dramatic. I understand the seriousness of the words.
I got a phone call from oncology this morning. They wanted to tell me that the lung nodule from last time disappeared and that my lungs are clear. I asked about the ‘focal fluid collection and masses’ part. They said they must have forgotten to put no in front of that. I don’t know about that. I’ll bring it up with my oncologist when I see her. I didn’t bring up the hernia, because I almost forgot and it seemed like this person didn’t know much about it. Nice they called to tell me.
I just got the bone scan results. The impression part says: Widespread metastatic disease appears approximately stable. In the findings they say that there’s been an uptake scattered throughout my ribs and they seem stable. There’s a focus of uptake in one of the femur necks (hip), and the body of the other femur (leg) which appear stable. No new area of uptake identified. From what I can gather, it sounds pretty good. Things are stable. It doesn’t sound like it’s progressed. Hasn’t shrunk or had areas disappear, either.
Duolingo just released their Yiddish course today. I’ve been wanting to at least be more exposed to it for a while. My family spoke it in the past, and it’s virtually a dead language. Not many people speak it anymore, and certainly not like they used to. It was spoken by Ashkenazi Jews. (That’s half of my family.) Those are Jews from Germany and eastern Europe. It’s a mixture of German, Slavic languages, Hebrew, and some others thrown in. It’s written in Hebrew. They start you off with the letters if you put down that you’re totally new to it, like I did. I’m glad I have some background in Hebrew, so I can read it fairly well. The vowels and some letter combos are a bit different. Getting used to that, though. I’ve only missed one question out of doing 3 units so far. That’s pretty good. I’ve already been introduced to some words and sentences already. So far those have been basically English words and sentences written out in Yiddish. That’ll hopefully change soon. Also, to promote this new course, Duolingo has a thing where if you order a bagel in Yiddish at a deli you get it for free today. Of course none of the participating stores are anywhere near here, but that’s kind of cool. I find it interesting that I took their Scottish Gaelic course (some of my family spoke this, too) when it came out, and now I’m doing their Yiddish one. Feels like I can be closer to family that way.
Tomorrow I’m getting a dental deep clean. It’ll be the first time I’ve had dental work in a very long time. I’m nervous about it. Hopefully it won’t be too painful.
DAY AFTER HALLOWEEN
by Shel Silverstein
Skeletons, spirits and haunts,
Skeletons, spirits and haunts.
It's a halloween sale:
A nickel a pail
For skeletons, spirits and haunts.
Skeletons, spirits and haunts,
More than most anyone wants.
Will you pay for a shock,
'Cause we're quite overstocked
On skeletons, spirits and haunts.
(Actual scan of my skeleton)
Send asks!
I have three hours to kill. I have a bone scan being done to see if the swelling on my jaw is cancer or a fracture or something else and I could use a distraction.
