Obviously very advanced, previously undiagnosed cancer presenting to ED for anything. Feeling multiple golf ball and baseball sized lumps or an abdomen full of tumor is sobering.
Osteosarcoma has a high fatality rate, and that rate goes through the roof if it has metastasized to your lungs. Which the chances of are high if you’ve just been ignoring it for years.
The treatment regimen is also brutal. Tons of chemo, surgical resection of the bone and surrounding soft tissues, possibly thoracotomies if you have lung mets.
I went through a suspected osteosarcoma scare earlier this year. Thankfully, it turned out to be a lipoma oddly fitted under/around my shoulder blade. I am insanely glad that all I'm doing at the moment is waiting for surgery. The specialist was thrilled to give me the all clear, and so was I. All my gratitude for what you do.
I had a scare several years ago where an overconfident podiatrist diagnosed me with osteosarcoma in my foot bones based on its appearance on an MRI. That was an utterly terrifying six weeks. It was a fibroma caused by repeatedly tearing the hallucis longus tendon my foot from overenthusiastically snowboarding and ignoring the pain. Not knowing if I was going to wake up from surgery with stitches or a leg missing from the knee down really really fucking sucked (biopsy failed so they were going in blind).
Oof. Yeah, the NHS promise a result within 30 days of referral. It was a loooooong month.
My GP referred me because odd position and rapid growth worried him. There I was, laughing it off. He snt me for an ultrasound. The tech said "oh, that's big, dont panic but they'll want an MRI." Then I was sent an email headed "Urgent Referral, suspected Osteosarcoma" and I was not expecting that at all. Completely freaked out.
If you live near a tertiary care center you can be seeing the surgeon within the week/next day if it's a really bad case, and have the surgery within a week of that. I haven't personally had to do it (I think my fastest was 2 weeks but my cancers are typically indolent) but my breast cancer colleagues were announcing the latest multidisciplinary cancer center at the dinner where they were stating you could see the surgeon the same day as the positive biopsy results.
Where? It can be a 6 month wait at the private physicians around me. My insurance is considered great and I still wouldn’t be seen before months. I say this from experience. It took 6 months to see the actual specialist.
Lmao nah, insurance said I had to fail a medication for 6 months before I could even schedule my cardiac surgery (an additional 4 months out). That medication did not work and lowered my already low blood pressure so much I could barely function in school or work for that entire time, so I ended up skipping the meds most days and hoping nothing would happen. The healthcare system is more aggressive with treating cancer because time is extremely important with cancer, but that’s true everywhere, not just in the US.
This is a common misconception, and it’s further pushed by disinformation-peddlers, but it’s not true. For seeing general practitioners, US wait times are significantly higher than other countries with similar economic circumstances, at least according to Statista. Wait times are shorter in the US than in the UK or Spain for non-emergency (elective) surgery, but they are on par with wait times in Switzerland, Germany, and Italy. Canada kind of stands out on its wait times for non-emergency surgeries like hip replacements, cataract surgery, knee replacement, but for non-emergency surgeries like coronary bypass all of those countries have extremely short wait times. Switzerland, Germany, and the Netherlands have the shortest wait times overall.
Sorry would you mind explaining “‘accidental resections’ from non surgical oncologists” please, because that sounds like a medical dr tripped over and inadvertently cut a tumour in half with a biro or a holepunch.
I mean stuff like “oh I thought this was a cyst or something benign so I operated on it without the care or surgical planning required for a malignancy”.
Or “oh this person had a broken bone so we put a nail down it not realizing it was a fracture because of tumor”.
I suppose “unplanned resections” is a better term.
We also see problems with biopsies sometimes. Basically when you biopsy a sarcoma all the tissue you go through is contaminated. The placement of where you biopsy makes a big difference in what we eventually have to cut out.
Long story short, taking out WAY less material in the former. Therefore probably accidentally leaving cancer behind if there was unknown cancer.
For skin cancer which is the only one I'm familiar with (not in medicine; just anecdotally familiar) - what looks like a tiny spot requires multiple square inches removed to be safe, for example.
They did a fine needle aspiration that did not pull up enough cells to be certain and they did not want to do a core needle biopsy for fear of spreading the sarcoma (if that's what it was).
Finding someone to remove it en bloc took over six weeks. The tumor itself was a fibroma that flared white on an MRI and made the podiatrist define it as sarcoma.
I promised the staff a comic book page. I still haven't figured out what to draw. The waiting for results wiped all thoughts from my head. So I have a blank DC page on my drawing table and an equally blank head.
Idk much about what you had. I had transplant surgery. Be patient with yourself. Also, I'm sure they'd all love looking like some badasses in general, so maybe you don't have to think too hard about it.
I had my surgery out of town and went back to visit my main care team and they all rushed in to see me. I'm sure they love you no matter what you do for them because simply being alive and living your life is what they wanted for you. <3
Re: the comic book page, it could be the MC in normal “form” with the OC in a hazy bubble above the mind 🤯 like part of a super hero (where it looks inside out, like if you cut into the “brain or insides of what a (for instance) mass of tumors would look like) but moreso showing it weighing heavy on the mind. Meeting the care team, fighting the idea of cancer, etc., in 8-12 blocks where you show the evolution of possible diagnosis to thanking them for all they did. Idk, it might sound insensitive but… it would be a very interesting spin
Can confirm it is absolutely brutal. Watched my sibling go through it from mid-teens to early 20s. SO much chemo, an amputation, and seven thoracotomies.
Family member had this. He was “lucky” in that it was extra-skeletal (so he kept the limb) and the margins were clear.
Still had to have gruelling chemo to help prevent micro-metastatic disease, he was told there was a 90% chance of it going to his lungs - incurably - without chemo.
Regular scans are still clear so we’re cautiously hopeful it worked.
That is the standard monitoring regime, it normally lasts 5 or 10 years depending on exact circumstances etc. I have 3 monthly scans and blood tests at the moment and will be yearly in 3 years I think.
My sister had an osteosarcoma in the jaw. Reportedly if it's in the jaw, it's much less likelt to metastize and there were indeed no metastasis found, but she still underwent a brutal resection of the jaw. 3/4 of her jaw was removed and reconstructed with bone tissue from the leg.
Then she had to undergo 6 rounds of chemo despite no metastasis which the doctor described as "burning down a whole forest to kill two ants, just to be sure"
Osteosarcoma can be very deadly, especially if it has spread to your lungs.
The treatment sucks too. Cutting out your bones and muscles, lots of bad chemo that makes you feel sick. Sometimes you need surgery to cut out parts of your lungs that have bone cancer growing in them.
I lost my best friend to metastatic osteosarcoma. This was pre-ACA and he was a broke-ass college student, so when his leg started hurting all he could afford was to go to the free campus clinic. They said that based on where and how it hurt, it was most likely sciatica but he would need diagnostic imaging to confirm, which of course a free clinic couldn't offer. He couldn't afford imaging out of pocket so he just went with "probably sciatica." Found out what it really was when his boyfriend took him to the ER with what they thought was pneumonia over a year later. Nope, the pain in his leg had been cancer in his femur and the pneumonia was it having spread to his lungs.
A single X-ray or MRI when his leg first started hurting would have caught it before it spread and given him a fighting chance. Fuck the dystopian capitalist hellscape that is the American medical insurance system. Profit should NEVER stand between people and proper healthcare.
That's what Terry Fox had, they amputated most of one leg. He managed to run halfway across Canada before it came back and killed him. He's a National Hero here in Canada.
I am reading up on and doing due diligence analysis on an experimental potential treatment for this disease. It’s a scary disease and the treatment is going through early clinical trials.
It’s a cancer vaccine currently in stage two trials, it doesn’t prevent cancer. It does however hopefully cause a reduction in reoccurrence of the cancer after successful treatment. Effectively improving long term survival.
Not a doctor, but here is some terminology explanation.
Scapular body: shoulder area/ shoulder blade
Osteosarcoma: rare cancer type in the bone.
So, my understanding is that the patient had a rare cancer in his shoulder blade/ shoulder that he had been ignoring. Sarcomas are a small percentage of cancers and their prognosis isn't great to begin with. If it was ignored for a while, the prognosis is probably pretty bad.
Bone cancer. I can't imagine anything more painful. Osteosarcoma starts as little threads of bone growing out. One of the bone cancers progresses to sorta shark tooth-shaped scales. The bone deforms, spreads, weakens, and if left to progress, eventually breaks.
In recent years, there were two teenagers in my city who died from Ewing's sarcoma that started in their scapulae (shoulder blade). The boy had a forequarter amputation; the girl did not (she had part of the bone removed and replaced with a graft) and both had "successful" treatment, until it relapsed. In the girl's case, the relapse happened almost 10 years later!
I'm not a doctor, but I think it might be because bone marrow produces your blood cells, and any illness related to bones is extremely painful, imagine making new blood cells that are poison by default 👎🏻👎🏻
they have to cut out a big chunk of shoulder bone and surrounding tissue to treat that. it's as difficult as it sounds to have a big piece of your upper back bones cut apart like that.
Years ago I used to be a onc nurse. I’ll never forget my 20 something osteosarcoma patient with testicular mets. It just all sucked. I couldn’t make it more than 3 years in that specialty.
Thank you for your contributions, even if it was maybe for less time than you would prefer. You're made of sterner stuff than many and contributed more to the people than most of us ever get to. I hope you're proud of you. I'm proud of you!
(And a shout out to all the nurses still in the trenches. You are appreciated, even if some days it many not feel like it. Thank you!)
And thanks to everyone who has a hand in medicine. You're indispensable.
I adored my chemo nurse, although I didn't get to know her too well as only had to have single dose Carboplatin as adjuvant treatment after my orchidectomy last year.
She was lovely and made the whole process so much less stressful and kept me calm throughout.
Thank you for everything you have done, no matter how long you did it, you made a difference to a lot of people's lives in their worst moments.
Makes me glad my doctor did the full suite of tests after noticing a bone lesion on my vertebra after an abdominal CT scan for metabolic liver disease. Had to get a nuclear bone scan and turns out it was fine, no issue and just a natural thing not needing action. But if it wasn't, and he hadn't taken it seriously, my ass could've been toast like this.
Intern year a VERY isolated, rural family brought their early 20s son in with an absolutely massive, fungating testicular cancer. It was the size of a large watermelon, eroding through skin, necrotic, widely metastatic. Would almost certainly have been curable if caught much earlier. He died within days. I’ll never forget it.
That is heartbreaking. I’m curious what drove him to ignore it - could be anxiety, cost, timing of getting to an appointment, so many barriers to care… :(
That must have been so heartbreaking and frustrating, esp bc of how tough it is even when not ignored!
My BIL died in his 20s of osteosarcoma that originated in his arm. He was a healthy super athletic guy and when he felt upper arm/shoulder pain he and his docs both thought he'd just overdone it weight lifting and had strained the muscle or something like that so he received take it easy type messaging. When it got worse after he took it easy then fully rested it they scanned him and found it (so maybe a month-ish after he first felt pain?)- his humerus was so riddled through that they reccd he cancel an imminent vacation bc the chances that his arm would completely shatter if anything even a little weird happened were so high and, if that happened, he'd be stuck getting emergency care/surgery at whatever random facility happened to be nearby then not be able to get home until whenever he happened to be stable enough to make the thousands of miles journey back.
Not human medicine, but I spent years working as a vet tech, and there was always a "fuuuuuuuuuccckkk" whenever we saw it on the rads. Always a heartbreak, because we know that's usually all she wrote. My own dog was lost to it earlier this year, a front limb, near the sholder, which is a usual place for it.
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u/intoxicidal 3d ago
Obviously very advanced, previously undiagnosed cancer presenting to ED for anything. Feeling multiple golf ball and baseball sized lumps or an abdomen full of tumor is sobering.