Sarcoma Concerns - Misdiagnosis?

[gailveronica]

Hi, everybody!

I know I worry myself sick looking online, as I'm a librarian and I look only for scholarly articles (which at time contradict themselves) but I tend to stick to this type of info vs forums, opinions, news articles, etc.

That being said, I've always had health anxiety. No matter what, I think I have the very worst thing. Fullness in pelvis? Ovarian cancer (turned out to be a side effect of my birth control). Back pain? Tumor (turned out to be sciatica). Numbness in leg? MS (turned out to be vitamin B12 deficiency). Dizziness? Brain cancer (turned out to be migraine syndrome).

This is my life.

About 3 weeks ago now, I found a small lump behind my right knee. I spent a week leaving it alone and not googling (luckily I was on vacation and was preoccupied!) but when I got back and it was still there, I called the doctor. Knowing my health anxiety (she is very understanding) she said I should come in for an exam.

She felt the lump (thinking it was a cyst or a lipoma) and ordered an ultrasound. The ultrasound came back with "likely lipoma" at 14mm x 13mm x 9mm (very small). The radiologist said if it grows or if any clinical signs change, an MRI can be done. The ultrasound tech also said it looked just like a regular lipoma, and that she seems them every single day. The nurse who touched it also said it felt like a lipoma (it is squishy and very movable).

This was a week and a half ago, and this hasn't settled my mind.

Looking online, I see a lot of sarcomas (especially synovial sarcoma) go misdiagnosed, but are especially found behind the knee (mine is a bit up from the joint, about an inch). I feel like it's growing but I logically know it did not grow in the past 10 days. My husband says it is not growing and it remains soft and movable (good signs of lipoma).

I called my doctor again, and she is seeing me tomorrow for my health anxiety (and clearly I will make her feel my lump again lol).

Would you guys seek a second opinion from another doctor? I can't imagine I'll be told anything other than "it's a lipoma from the ultrasound" but I see so many articles about ultrasounds missing sarcomas and sarcomas being found behind the knee.... though of course, more commonly, lipomas are found rather than sarcomas (synovial sarcomas are diagnosed in 800 US patients a year, so.. I know the odds).

Just looking for advice on second opinions, if necessary, or even any advice on how to deal with this anxiety (aside from "stop googling, gurl!" which is what my nurse told me when I called her for a 3rd time lol).

[BlueIris]

Also a librarian here; the professional skillset is a liability when you have health anxiety!

You've been told what it is, so be happy you're healthy.

[gailveronica]

Also a librarian here; the professional skillset is a liability when you have health anxiety!

You've been told what it is, so be happy you're healthy.

Thank you! And also - someone who knows what it's like! lol -- man, our research skills are our downfall, eh? And I really do love my doctor, she understands my HA and is very patient with me, as well as very direct. When I thought I had a brain tumor (dizziness) she immediately booked me for an MRI. When I had swallowing difficulties (reflux/hiatal hernia) she immediately booked me for a barium swallow. She's great. I don't want her to think I'm second-guessing her, because I trust her completely. And in my mind, I know that if there were anything of concern on the ultrasound (my teeny tiny bump) she would have sent me immediately for the MRI. But those gosh darn articles on the gosh darn internet........ :doh:

[BlueIris]

Be stern with yourself, and find fun things to research instead.

I'm capable of falling down the Google hole for 5 hours or more at a time. The trick is to redirect yourself.

[gailveronica]

Be stern with yourself, and find fun things to research instead.

I'm capable of falling down the Google hole for 5 hours or more at a time. The trick is to redirect yourself.

This is a good trick. When my husband woke up at 3am to find me googling "synovial sarcoma" on my phone, he took it away from me lol

The next morning he gave it back under the caveat that every time I feel like googling "sarcoma," I instead google "health anxiety."

It's what brought me here! :)

[NervUs]

I went through a sarcoma scare, in that I have a lump that the doctor said, Oh, this could be sarcoma, let's get a MRI.

I did get that MRI, and the reading came back as not suspicious for sarcoma. I had read every single article, blog, medical journal, etc on sarcoma...b/c, prior to the MRI, I was certain it was going to come back as suspicious. I knew about the relatively high rate of misdiagnosis with sarcoma (but, quite honestly, there is a high rate of misdiagnosis in all cancers).

The way I dealt with this was just to get a second opinion on my films. The second doctor agreed that this did not look at all like sarcoma...so....I accepted that. Still have the lump in my toe 2.5 years later. But, I accept that it is nothing sinister.

Maybe, at most, you could do that- have a second doctor read your u/s results and the GIVE IT UP if the second opinion is that is is not suspicious.

The better thing to do would be just to self-monitor the lump, and I mean only touch it once a month or two (not every day). If you are touching it everyday, you won't even notice if there are changes. Plus, it is cementing in your mind DANGER DANGER DANGER. If it grows, then go in.

That's what I would do, especially since you have never had a doctor tell you the lump was suspicious.

[BlueIris]

My husband gets livid with me, too, and I hate when he's disappointed in me, I feel so guilty!

I love this place because you can talk about the irrational stuff while actually acknowledging the irrationality of it.

[gailveronica]

I went through a sarcoma scare, in that I have a lump that the doctor said, Oh, this could be sarcoma, let's get a MRI.

I did get that MRI, and the reading came back as not suspicious for sarcoma. I had read every single article, blog, medical journal, etc on sarcoma...b/c, prior to the MRI, I was certain it was going to come back as suspicious. I knew about the relatively high rate of misdiagnosis with sarcoma (but, quite honestly, there is a high rate of misdiagnosis in all cancers).

The way I dealt with this was just to get a second opinion on my films. The second doctor agreed that this did not look at all like sarcoma...so....I accepted that. Still have the lump in my toe 2.5 years later. But, I accept that it is nothing sinister.

Maybe, at most, you could do that- have a second doctor read your u/s results and the GIVE IT UP if the second opinion is that is is not suspicious.

The better thing to do would be just to self-monitor the lump, and I mean only touch it once a month or two (not every day). If you are touching it everyday, you won't even notice if there are changes. Plus, it is cementing in your mind DANGER DANGER DANGER. If it grows, then go in.

That's what I would do, especially since you have never had a doctor tell you the lump was suspicious.

I think this is good advice - I'm going to my doc tomorrow for health anxiety / lump check (sorry in advance, doc, for making you do that again to me) but if I don't feel settled from that (which clearly, I will not) I'll have another doc read my u/s. Thank you for this! And oof, I'm SO SORRY you went through that - I know how crazy my brain has been over the past 2 weeks with an "all clear" scan - you must have been in the trenches at that time! I'm glad to hear all is well :)

---------- Post added at 15:38 ---------- Previous post was at 15:36 ----------


My husband gets livid with me, too, and I hate when he's disappointed in me, I feel so guilty!

I love this place because you can talk about the irrational stuff while actually acknowledging the irrationality of it.

Oh, for sure! When it was 3am and he took my phone, he stayed up with me playing Mt Rushmore (what's your Mt Rushmore of sitcoms? dramas? movies? books? etc) and keeping my mind occupied while my shaky body calmed itself enough to be able to fall asleep for a few hours. I feel like a real jackal but if I could help my anxiety and NOT feel this way, I definitely would! Our husbands are patient angels lol

[gailveronica]

Just an update:

Went to my doctor, who read my radiology report aloud to me. Hyperechoic, homogeneous, avascular 14mm x 13mm x 9mm mass. This is exactly what I needed to hear (based on my research and the doctor's knowledge) to know this is 99% a lipoma. There's a SMALL chance it could be something sinister, but my doctor talked me through and said if in one month it grows, she'll send me for an MRI. She also compromised and said if I am having a hard time waiting a month, I can call her any time and she will check to see if my insurance will cover an MRI. This makes me feel secure and like I'm in good hands. I feel so much better about all of this!

I will say, make a follow up with your docs, and make sure you get ALL of your details, so you don't end up worrying for 2 weeks for no reason! Phew.

---------- Post added at 16:53 ---------- Previous post was at 16:30 ----------

(I also wanted to thank y'all for helping me get through yesterday - I know it's a small thing, but being able to eat dinner and sleep a night helped clear my head, so thank you guys) :)