Let's Play Doctor!
May 30, 2019 2:42 PM Subscribe
My wife (mid-40s) has a tender, swollen area on her back. It's been there for twenty years, and doctors haven't had any luck identifying it. I can't believe this is some unique ailment, so I'm hoping someone here has heard of something similar to guide us.
The area is near her left kidney, about the size of a deck of cards. It's generally sore to the touch, but it hasn't changed shape. There's no change in skin colour. It sometimes swells if she twists the wrong way or exerts herself while stretching, but will diminish in a few hours.
Doctors thought there may be a mass at the centre, but surgery found nothing. Ultrasounds showed some fluid but that's it. Now today she got her MRI results back, and it indicated some markers for cancer (neuroblastoma), which makes no sense. I've never heard of a cancer that appears, stays the same size and shape for twenty years, and is both tender to the touch and has no discolouration of the skin.
Does this sound like anything anyone else has heard of before? This is a complete shot in the dark, of course, and we're waiting on yet another exploratory surgery, but our doctors have been at a loss for two decades now.
The area is near her left kidney, about the size of a deck of cards. It's generally sore to the touch, but it hasn't changed shape. There's no change in skin colour. It sometimes swells if she twists the wrong way or exerts herself while stretching, but will diminish in a few hours.
Doctors thought there may be a mass at the centre, but surgery found nothing. Ultrasounds showed some fluid but that's it. Now today she got her MRI results back, and it indicated some markers for cancer (neuroblastoma), which makes no sense. I've never heard of a cancer that appears, stays the same size and shape for twenty years, and is both tender to the touch and has no discolouration of the skin.
Does this sound like anything anyone else has heard of before? This is a complete shot in the dark, of course, and we're waiting on yet another exploratory surgery, but our doctors have been at a loss for two decades now.
It's hard to imagine neuroblastoma being present for twenty years without disease progression/metastasis. In adults, the prognosis for neuroblastoma is quite poor--overall adult survival at 5 years is 36%.
I think lipoma would've been diagnosed via ultrasound, though. It's not a mystery you'd have to go hunting through the books to solve.
posted by praemunire at 3:38 PM on May 30, 2019 [1 favorite]
I think lipoma would've been diagnosed via ultrasound, though. It's not a mystery you'd have to go hunting through the books to solve.
posted by praemunire at 3:38 PM on May 30, 2019 [1 favorite]
My guess was lipoma, too (I had two removed years ago; one on my back near my left shoulder blade and one on my left elbow); neither ever hurt, and they grew, albeit slowly. The doctors had no difficulty identifying them (though the one newbie doc did have some difficulty excising the one on my back!).
I hope you figure it out!
posted by notyou at 4:10 PM on May 30, 2019
I hope you figure it out!
posted by notyou at 4:10 PM on May 30, 2019
I don’t know what it might be, but I’m wondering what type of doctors you have seen. Have you been to a dermatologist? They specialize in the skin and may be able to help you.
posted by epj at 4:10 PM on May 30, 2019 [3 favorites]
posted by epj at 4:10 PM on May 30, 2019 [3 favorites]
Do you both know what a chronic muscle knot and inflammation feel like, as a haver and toucher? Sorry if that’s been obviously ruled out by the pros but chronic muscle issues can last for decades and cycle through better and worse, etc, and they are easily exacerbated by one movement. My spouse and I both have specific localized idiosyncratic back muscle issues we manage and address as needed, in that general area, with strong asymmetry, ymmv.
posted by SaltySalticid at 4:33 PM on May 30, 2019 [3 favorites]
posted by SaltySalticid at 4:33 PM on May 30, 2019 [3 favorites]
I have a lipoma I've had for at least 20 years, and have never been tempted to have it removed. Lipomas are famously awful to resect because they have deep and unpredictable connections with muscle and fascia. A friend who had one on his back removed took weeks to recover, with drains and daily dressing changes - I did them because his wife was squeamish. It had unusually tortuous " tentacles" of fascia connecting it to the muscles of the ribs and required the surgeon to meticulously dissect these to free the lipoma. I knew the surgeon, and she said it was one of the most difficult she had removed. Recovery was painful.
On the other hand, lipomas are benign, rarely enlarge much and rarely cause problems. They can be tender to the touch with manipulation (mine certainly is) but unless this is in a majorly difficult spot, I'd be very slow to sign up for surgery. I advise consulting a surgeon with experience.
posted by citygirl at 6:42 PM on May 30, 2019
On the other hand, lipomas are benign, rarely enlarge much and rarely cause problems. They can be tender to the touch with manipulation (mine certainly is) but unless this is in a majorly difficult spot, I'd be very slow to sign up for surgery. I advise consulting a surgeon with experience.
posted by citygirl at 6:42 PM on May 30, 2019
This is definitely not a lipoma, folks. Those are ridiculously easy to diagnose. So why don't we lay off the lipoma facts.
posted by liminal_shadows at 7:28 PM on May 30, 2019
posted by liminal_shadows at 7:28 PM on May 30, 2019
Yeah, neuroblastoma is serious, would have changed over the past 20 years, but if they mentioned it based on MRI findings, it's worth checking into (not likely to be the cause though). I agree that lipoma would have been identified earlier in her workup, and those tend to be painless (though as mentioned above they can occasionally be tender). The fluctuation in size doesn't fit with a lipoma.
My first thought was some type of lymphatic malformation. Would fit that it would increase in size with activity and stretching (increased lymphatic flow) and would subsequently decrease in size with rest. They can be difficult to diagnose due to the fluctuating size and symptoms. I would expect the MRI would identify it, but that's not always the case if its not "flaring." Ultrasound can also be hit or miss. Lymphatic malformations are more commonly diagnosed in children, but if she's had it for 20 years, it may have been there her entire life but asymptomatic.
Just my 2 cents.
posted by defenestrated at 9:08 PM on May 30, 2019
My first thought was some type of lymphatic malformation. Would fit that it would increase in size with activity and stretching (increased lymphatic flow) and would subsequently decrease in size with rest. They can be difficult to diagnose due to the fluctuating size and symptoms. I would expect the MRI would identify it, but that's not always the case if its not "flaring." Ultrasound can also be hit or miss. Lymphatic malformations are more commonly diagnosed in children, but if she's had it for 20 years, it may have been there her entire life but asymptomatic.
Just my 2 cents.
posted by defenestrated at 9:08 PM on May 30, 2019
Response by poster: Thanks for the comments. Two years ago they thought it might have been a lipoma, as some have mentioned, but surgery couldn't find anything. The surgeon removed... something, smaller than a pea, but she healed quickly and there was no overall change. We'll see what the thoracic surgeon comes up with.
posted by GhostintheMachine at 4:21 AM on May 31, 2019 [2 favorites]
posted by GhostintheMachine at 4:21 AM on May 31, 2019 [2 favorites]
Sayings in medicine when imaging says something is cancer-looking:
Tissue is the issue....
No meat...no treat....
At any rate, it's not behaving like an aggressive cancer that we can be sure.
The tenderness at an early stage can be atypical for cancer too.
And, that's what's most concerning -- has it always been tender? If so, that's could be a problem and perhaps should be removed to relieve pain (unless she tolerates it). Or, it could have become recently infected -- in which case would rule out abscess or infected cyst -- and treat appropriately.
Best of luck and I hope it's nothing.
posted by skepticallypleased at 8:43 PM on May 31, 2019
Tissue is the issue....
No meat...no treat....
At any rate, it's not behaving like an aggressive cancer that we can be sure.
The tenderness at an early stage can be atypical for cancer too.
And, that's what's most concerning -- has it always been tender? If so, that's could be a problem and perhaps should be removed to relieve pain (unless she tolerates it). Or, it could have become recently infected -- in which case would rule out abscess or infected cyst -- and treat appropriately.
Best of luck and I hope it's nothing.
posted by skepticallypleased at 8:43 PM on May 31, 2019
Spinal fluid leak? Has she ever had an epidural or a back surgery or injury? Ehlers Danlos or other connective tissue injury?
posted by fshgrl at 11:38 PM on June 1, 2019
posted by fshgrl at 11:38 PM on June 1, 2019
This is definitely not a lipoma, folks. Those are ridiculously easy to diagnose. So why don't we lay off the lipoma facts.
I'm a toxicologist with almost twenty years of clinical work under my belt, and I just had a liposarcoma removed two months ago that was misdiagnosed as a lipoma almost a year ago. The second misdiagnosis occurred about five months ago after ultrasound suggested that the tumor was an irregular muscle mass. CT was the ultimate diagnostic.
posted by late afternoon dreaming hotel at 1:19 PM on June 3, 2019
I'm a toxicologist with almost twenty years of clinical work under my belt, and I just had a liposarcoma removed two months ago that was misdiagnosed as a lipoma almost a year ago. The second misdiagnosis occurred about five months ago after ultrasound suggested that the tumor was an irregular muscle mass. CT was the ultimate diagnostic.
posted by late afternoon dreaming hotel at 1:19 PM on June 3, 2019
This thread is closed to new comments.
posted by Elsie at 2:51 PM on May 30, 2019 [7 favorites]