katybee
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Post by katybee on Jul 7, 2016 22:16:08 GMT
Update #2: They admitted him to the hospital after midnight last night (we had to go to a different hospital than the one we were at). They wanted him to go in an ambulance, but we checked him out against medical advice (with doctor's approval-- they just had to legally read us the risks) and drove him. The neurosurgery dept. from his oncology group is taking over. I guess we should have taken him to his oncologist to start.
At this point, they have ruled out aneurysm but that's all they know until they do a biopsy. Please send prayers and good wishes. He's been through so much-- he doesn't deserve to have this happen.
Update: it's probably a Potts Puffy Tumor. Benign, caused by an infection. Very scary though, because it's been growing into/out of his skull bone? They're concerned and coming to ER was right thing to do. Waiting to talk to doctors. Prayers and good thoughts appreciated...
OP: Ok... Actually my brother.
He has a golf-ball sized lump on his forehead. He's always had a small lump there... We thought it was from a fall as a child.
But a month ago, it started to grow. It's also very painful.
He went to his PC, got referred to dermatologist.
Dermatologist sent him to plastic surgeon (wtf?)
Plastic surgeon referred him to vascular surgeon, who wouldn't even see him. Referred him to another plastic surgeon. In the mean time, no one has done any imaging or anything else other that poke at it.
So I brought him to the ER. They probably won't be able to do anything either, but at least they're going to do an ultrasound and CT scan. Finally.
This is my brother who has been fighting kidney cancer for several years now. And no one will take this seriously. Even though it's a golf ball sized bump.
At least dermatologist says its "probably" not cancer-- it doesn't usually present that way. Probably a cyst, an access or an aneurysm.
So frustrarting. So--any guesses!
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Post by papersilly on Jul 7, 2016 22:21:11 GMT
wow, talk about passing the buck! I'm surprised at the lack of urgency expressed by the other doctors in light of previously illness (if they knew about it). I hope he gets it checked soon and I hope he's okay.
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Post by crimsoncat05 on Jul 7, 2016 22:28:55 GMT
could it be some sort of a fatty cyst or fatty tumor, kind of like the lumps that older dogs sometimes get?? (I don't have the faintest idea if that's what they're really called, I just know that older pets sometimes get them. And I can imagine, if it's on his forehead, it would be pretty painful- there's not really very much 'extra' skin there to stretch out if something is right there.
My boyfriend's family has something similar that runs in their family- his dad and his uncle both have always had this raised bump right on the ridge of their nose, at the middle of the eye area. His dad finally got it removed a few years ago when it started growing and got kind of 'unsightly' looking... my BF has it too, but it's not very noticeable (yet).
That IS really annoying, how the doctors each keep passing him around to a different specialist... it's those really odd things that you never know just WHICH doctor is the best one for!
In light of the fact that he has kidney cancer, could he perhaps ask his oncologist's office if THEY might know which specialist would be best??
I'm surprised the dermatologist passed him off to the plastic surgeon so quickly, without even testing it to see what it was, or anything.
eta: the ones our dog gets are called sebaceous cysts, which are (I think) a hair follicle that gets plugged up with gunk and oils. She actually had to have surgery to remove one already, and has a couple more that I have to keep an eye on.
It looks like those cysts are somewhat common for people to get on their scalp (and beware, if you google images-- ick!) so it could possibly be something like that???
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katybee
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Post by katybee on Jul 7, 2016 22:39:57 GMT
crimsoncat05 Yes it could be a sebaceous cyst, but I think the dermatologist is thinking it's more likely an aneurysm. But the vascular surgeon wouldn't see him--so who knows.
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katybee
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Post by katybee on Jul 7, 2016 22:43:07 GMT
Ok... Not an aneurysm, so either cyst or cancer.
Waiting on CT scan.
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gsquaredmom
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Jun 26, 2014 17:43:22 GMT
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Post by gsquaredmom on Jul 7, 2016 22:44:46 GMT
Cyst? My mom had one on top of her head that was finally removed after a couple years of docs not being too concerned. She'd had kidney and breast cancers already by this time.
Hers was not that big, more like shooter marble than golf ball. They did do a biopsy. I am not sure what kind of doc did it. Hers was not cancerous. It has not recurred.
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melissa
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Post by melissa on Jul 7, 2016 23:17:31 GMT
I understand the dermatologist passing off to a plastic surgeon because of the location. Obviously, someone thinks it may be vascular. As he has had it since childhood, cancer is at the bottom of the list. Many benign possibilities, but the real question is vascular or not... and then who will remove it! Poking at it is making some believe it is vascular, so with some imaging the vascular surgeon will have to see him. Though, perhaps a vascular surgeon won't be needed at all. If it is vascular, an interventional radiologist may be able to take care of the vascular part of it, with follow up with a plastic surgeon after if necessary.
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Post by crimsoncat05 on Jul 7, 2016 23:21:41 GMT
I'm totally playing "Dr. Google" here, of course, but it looks like there's something called a cirsoid aneurysm that's a group of malformed blood vessels that can present on a person's head. "patients often present with a slow-growing mass and may also experience bleeding, tinnitus (ringing in the ears, right?) and/or headache."
...from the information on that webpage, it sounds maybe, like it would be similar to removing a varicose vein in how it's treated...
anyway, I hope he gets some answers!!
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Post by Darcy Collins on Jul 7, 2016 23:35:04 GMT
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katybee
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Post by katybee on Jul 8, 2016 0:02:14 GMT
Oh my gosh that looks exactly like it except much bigger. He's getting a CT scan right now, so hopefully we'll find out soon. Obviously cancer is freaking us out, only because he does have stage IV kidney cancer. But I really think he's had this lump (though MUCH smaller) for as long as I can remember. |
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Post by mom on Jul 8, 2016 0:38:52 GMT
Just read your update! Let us know what the Dr's say.
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melissa
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Post by melissa on Jul 8, 2016 0:53:55 GMT
I had to look that one up! Never heard of it. Sounds like they still have to determine the cause. It still seems odd to me that it has always been there but was smaller before and that it would be this.
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katybee
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Post by katybee on Jul 8, 2016 1:14:53 GMT
I had to look that one up! Never heard of it. Sounds like they still have to determine the cause. It still seems odd to me that it has always been there but was smaller before and that it would be this. Radiologist couldn't tell for sure. They just know it's a tumor. Haven't even ruled out cancer, yet. Next step-- biopsy. They're trying to determine who will do the biopsy-- the hospital or his oncology team. He does not have a spleen-- so he gets weird things. But it really has been there at least since he was a teenager. And they can see it on scans since 2010 (although no one has EVER mentioned it). It's just hard for him to wait....he (rightfully so) gets anxiety. |
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Post by anniefb on Jul 8, 2016 1:19:22 GMT
Hope he gets the biopsy quickly. Sending positive thoughts and prayers!
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Post by gotranch on Jul 8, 2016 1:42:27 GMT
Positive vibes for your brother and you. Hope this gets resolved soon.
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Post by LavenderLayoutLady on Jul 8, 2016 10:21:11 GMT
What a scary update!
I can't believe all of his other doctors didn't see immediate concern with that and treat him. I'm so glad he went to the ER and is being taken care of now.
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Post by mikklynn on Jul 8, 2016 12:16:54 GMT
I'm praying it is something easily resolved. My DH has stage IV renal cancer as well. It's really frustrating and annoying when something ELSE happens, isn't it?
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Post by Blind Squirrel on Jul 8, 2016 12:33:28 GMT
Sending prayers.
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scrappert
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Post by scrappert on Jul 8, 2016 12:37:56 GMT
Ugh, read your second update. Hopefully all will be benign. Prayers to your brother.
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katybee
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Post by katybee on Jul 8, 2016 15:48:07 GMT
Oncologist thinks it's cancer and its growing into the skull and brain. I'm devastated. It's so weird that it would grow exactly where he's had that bump his entire life. He's having an MRI today and a biopsy probably Monday. Cancer sucks.
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Post by crimsoncat05 on Jul 8, 2016 15:53:59 GMT
oh my gosh... that is horrible news!
I will be thinking about you and your brother, and thinking good thoughts for his health and the skill of his oncology team!!! (((HUGS)))
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Post by kels99 on Jul 8, 2016 16:00:53 GMT
Oh no! Prayers for you all!
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Post by pb on Jul 8, 2016 16:58:49 GMT
I am so sorry. Sending good thoughts to you and your brother. Please remember to take care of yourself so you can help your brother.
(((Hugs)))
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calgal08
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Post by calgal08 on Jul 8, 2016 17:13:51 GMT
Positive thoughts.
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The Birdhouse Lady
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Post by The Birdhouse Lady on Jul 8, 2016 17:35:59 GMT
Oh katybee, I am so sorry to read your 2nd update. I hope everything works out for the best.
I am slightly pissed off that it took you taking him to the ER to have someone take this serious. Those other doctors who brushed him off should be ashamed of themselves. |
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Post by cindyupnorth on Jul 8, 2016 17:51:40 GMT
Holy crap!! he's got a tumor growing out of his skull and they sent him to derma? WITHOUT and xray? or CT??? WTF?? That's just crazy!!
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katybee
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Post by katybee on Jul 8, 2016 18:22:05 GMT
Holy crap!! he's got a tumor growing out of his skull and they sent him to derma? WITHOUT and xray? or CT??? WTF?? That's just crazy!! I thought a dermatologist was the wrong doctor from the beginning, only because I had a very large cyst removed and it was a general surgeon that did it. But to be honest, I thought his was a cyst. It looked just like mine. Had I seriously thought it was cancer, I would have insisted he go straight to his oncologist. Lesson learned-- when you have stage IV cancer, assume everything is a reoccurance. |
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katybee
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Post by katybee on Jul 8, 2016 18:26:02 GMT
Oh katybee , I am so sorry to read your 2nd update. I hope everything works out for the best.
I am slightly pissed off that it took you taking him to the ER to have someone take this serious. Those other doctors who brushed him off should be ashamed of themselves. We should have taken him to his oncologist to begin with. And to be fair, I don't think most of them have ever seen anything like this. His PCP definitely dropped the ball. But then again, he has to remind get every time he goes in that he has cancer.  We will be getting him a new PCP. |
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Post by leannec on Jul 8, 2016 18:28:11 GMT
Positive thoughts coming your way  |
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Post by Darcy Collins on Jul 8, 2016 18:31:00 GMT
Holy crap!! he's got a tumor growing out of his skull and they sent him to derma? WITHOUT and xray? or CT??? WTF?? That's just crazy!! I thought a dermatologist was the wrong doctor from the beginning, only because I had a very large cyst removed and it was a general surgeon that did it. But to be honest, I thought his was a cyst. It looked just like mine. Had I seriously thought it was cancer, I would have insisted he go straight to his oncologist. Lesson learned-- when you have stage IV cancer, assume everything is a reoccurance. I'm sorry - and you're right. Two family members fighting cancer dismissed pain as old injuries (both had previous surgeries in those joints) - in both cases it was cancer metastasizing to new locations. Positive thoughts for your brother. |
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We will be getting him a new PCP. 
