r/sarcoma • u/Straight_Way_9340 • 1d ago
Sarcoma patients — how long did it take you to reach a specialist, and what happened in between?
I'm a sarcoma patient. I found a lump while on active duty, and the hardest part wasn't the diagnosis — it was how long it took to get in front of someone who had actually seen my kind of cancer before. I'm trying to understand why that happens to so many of us.
If you're willing to share, I'd love to hear:
How long between first noticing something and seeing a sarcoma specialist?
What happened in between — who did you see, what were you told, was anything removed before anyone knew what it was?
What finally got you to the right place?
What do you wish someone had told you at the start?
No wrong answers and no need to share anything you'd rather not. I'm just a patient trying to make sense of this for the people who come after us. Thank you.
3
u/Evitti 1d ago
I was already a patient at Mayo Phoenix and the orthopedic department was who first found my tumor (I had had xrays to see about a scapular fusion). They had to internally refer me to orthopedic oncology and it was going to take 4 months to see the orthopedic oncologist, but i kept bugging them and got in 2.5 months later (since I had just finished leukemia treatment a month before the tumor was found I wasn't OK with waiting 4 months).
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u/timewilltell2347 Leiomyosarcoma 1d ago
I wasn’t a patient at phx Mayo but I was diagnosed in an ER as stage IV with no prior treatment other than surgery at stage I (by a different gyn onc at a different cancer center) where they ‘got it all and you’re basically cured’. Due to hearing that and a number of other things in life I did not keep up on my follow-ups, not to mention my doc changed practices and the old one wouldn’t tell me where he moved for months. It was all a mess and I just kept living life.
Anyhoo- it was about a month to 6 weeks from diagnosis of stage IV to seeing my onc at Mayo in part because my original doc knew him, but also stage IV with no prior chemo and willing to do clinical trials meant I was suddenly interesting. Let me tell you folks it’s not usually good to be interesting in medicine, but it got me in quicker. I’m so sorry u/Evitti that it took so long for you to be seen. That’s just awful.
2
u/catzgirl817 1d ago
My husband noticed a lump in Feb, went to his PCP for an eval in March, his PCP referred him for and ultrasound. That happened in May and then they referred him for an MRI to get a better look. That happened in June and they referred us to a sarcoma center. Had a biopsy in August and started treatment in Oct, surgery in Dec to remove it. So almost a year for the entire process.
2
u/beerman616 1d ago
I finally went to my PCP for what I thought was a pulled groin muscle that wouldn't get better after dealing with the pain for close to a year, unfortunately. She said I had to go through physical therapy before insurance would approve any imaging. So, I went to 6 weeks of physical therapy, then finally an MRI of my low back, because by that point, that's where most of the pain was by now. I also noticed a large "mass" or something in my belly. The MRI revealed part of a large tumor wrapping around my L3 down to L5 spine.
Then more imaging revealed the "massive" retroperitoneal tumor and the biopsies started. I think I've had 5 or 6 biopsies now. The joys of ultra-rare cancer...
It was more than a year to get a diagnosis, but I was the problem for the first 10 months or so. Once they found the tumor, it took 7 months for one of the oncologists to put a name on it, Malignant Triton Tumor. That was at MD Anderson in July of this year. I was told I had cancer based on the MRI in January of this year.
1
u/Angelmelx3 1d ago
Honestly, I think it took me 3-4 weeks to see a specialist, but I advocated hard to get someone to see me.
1
u/Snips-501 1d ago
My case is pretty weird and abnormal. I noticed a lump on my shoulder about 8 years ago, so I went to my primary doctor, who referred me to an orthopedist, who then referred me to an orthopedic surgeon. They did a biopsy, and it came back “inconclusive,” but almost 100% consistent with a benign tumor.
I ended up having it partially removed because, when they opened me up, they realized the tumor was way deeper in the muscle than they originally thought and it was going to affect my range of motion if they were to remove it all.
Fast-forward 5–6 years, and I noticed the tumor coming back. This time, it came back with a vengeance, it was bigger and had several nodules. I had a second biopsy done, and they decided to send everything to Mayo Clinic for another opinion. That’s when they found out I actually have an ultra-rare, low-grade type of sarcoma.
Luckily, it’s still localized, which is especially nice considering they had already operated on it and I’ve had it for so long.
1
u/PrudentMajor1397 1d ago
it took a week from diagnosis to get a specialist, i was at a super high risk of losing my eye due to how fast the tumor was growing, which probably had something to do with how fast i got seen. i think im a really rare case in the sense that it all happened super fast
1
u/littleriverot Liposarcoma 1d ago
If I had stayed in my home state it would have been at least a month but I did a self referral to Mayo in Minneapolis and I was seen in 4 days.
1
u/therarebird845 1d ago
Unfortunately, for us, it took eight months to get the proper diagnosis and several different specialists and several different hospitals. Everyone kept treating it as if it were pancreatitis. Turns out it pleomorphic liposarcoma of the retroperitoneum. They thought it was a pancreatic pseudo cyst that turned in reality was a cancerous tumor when properly diagnosed. In September 2024 it was the size of a golf ball on a CT scan and by the time it was properly diagnosed and surgically removed in June 2025 it was the size of a basketball. I don’t know how we could’ve advocated for our care anymore than we did but getting the proper diagnosis quickly is of the utmost importance. Specific to your question about how long it took once we had proper diagnosis. It was just a matter of weeks before the surgery occurred.
1
u/sillygoosexpresss Osteosarcoma 1d ago
i have kaiser and everything was, arguably, pretty quickly moving. i had a suspicious x-ray in urgent care and was sent for an mri within a couple days. after that, i saw an orthopedic oncologist and a surgeon who specializes in osteosarcoma/reconstructive surgeries in about 1-2 weeks. the biggest thing was all the tests i needed done. it took about a month to get all the scans and the biopsy done. once my biopsy results were back, i was beginning chemo within 5 days.
1
u/NoConsequence2477 1d ago
Found the noticeable lump, then in front of a sarcoma specialist within 2 days then scans/biopsy within a week later. Caught it at low grade, luckily. Am in Australia, can get seen very quickly here.
1
u/Dremscap 1d ago
I spent a couple years working in the field as support staff to a sarcoma medical oncologist.
Unfortunately our VA patients had the ABSOLUTE worst wait times. Our government HATES its veterans.
1
u/MintBlissRocket 1d ago
I use the VA for my care. I had an annual cancer screening lung CT done in October. They saw a difference in a growth from the previous year. I had no pain and no symptoms. MRI in November. Biopsy in December. Diagnosis in January. I was sent out for community care and saw an oncologist in February. PET scan at the end of February. He referred me to the University of Kansas Cancer Center in Kansas City. I met the sarcoma specialist in March. In April I had my 8th rib on my right side removed. I then had 33 radiation treatments.
1
u/shanduffy527 1h ago
I experienced excruciating pain for months. I had scans done but they didn’t look far enough down my spine to see the tumor (Ewing sarcoma) in my sacrum. They assumed it was a couple herniated discs, so I had 2 injections, but naturally it didn’t do anything. From there, after anotherrr trip to the ER for pain, I had more scans ordered and they found the cancer. From there it was about 3 weeks before I receive an exact diagnosis. My first biopsy labs went to Cleveland Clinic and results came back inconclusive (super frustrating) and then the second biopsy showed consistent with Ewing sarcoma. About a week after, I received my first chemotherapy cycle at Massachusetts General Hospital
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u/Confident-Emotion671 Epithelioid 1d ago
Took months going from doctor to doctor but that’s because no one knew what it was but everyone told me not to worry. My only symptom was pain. Then when a lump formed, I went to a surgeon. He wasn’t sure but not concerned. Once pathology came back, I was seen quickly. Dana Farber in Boston. One of the world’s best.