I've got cancer and the doctors have never seen this before

I'll keep this short as I can. I've got a hereditary predisposition to skin cancer. I've had pre-cancerous melanoma removed from my back about a year ago, and I had a small sore on the tip of my ear that my dermatologist said not to worry about. Well, it had been there for a year and I recently had a biopsy of it done. Took a while for the doctors to get back to me, and they said that it was in fact cancer. Okay, no big deal, right?

The thing that has me freaked out is that they didn't know what they were looking at, and sent the samples to a medical conference- and no one THERE knew what the hell it was, or what to really do about it. They then sent the samples to UC of san Fransisco and I should be getting a call this week to figure out my next steps. When I asked about if it had metastasized, my doctor said to "take that off of my plate for now" and any other of my questions were just met with her saying stuff like "it's just really abnormal and we don't know what it is, really."

I'm losing my fucking shit here guys. Are any of you in the medical field? It seems like she wanted to tell me more, but couldn't. Am I fucked? How common is it for pathologists to not have any fucking clue what's going on in cases like this? I'd rather not fucking die of skin cancer just yet, I'm in my 20's and I've got shit I wanna do first. I don't normally post on this board so forgive me if this is an inappropriate thread topic. I just could use some reassurance or facts to help me to stop freaking out over the unknown.

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en.wikipedia.org/wiki/HeLa
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Well, Melanoma has a 98 or 99% survival rate, but that's generally due to it being topical so early detection is common. Early detection being the most important factor of cancer survival (especially if surgery is needed). That being said, it's extremely unlikely it has metastasized, as it would have to make its way through your subcutaneous tissue, basement membrane, and into the bloodstream or lymphatic system. I feel this would be more identifiable in a melanoma, also would probably lead to pain while it is occurring. When people say they "don't know what it is", that's not nearly as scary as you think it is, as there are hundreds of types of cancers and they are just unable to fit it into a neat category that already exists.

I really wouldnt be worried, mainly because melanoma isnt a big deal anymore, and you have been aware of it and taken steps to identifying its risk.
Overall, i highly doubt this will lower your lifespan, may just be an annoying inconvenience for you

Ill add my knowledge of cancer is very elementary, having just taken 1 upper level class on cancer biology

Alright, that helps a bit. I really don't care if they come to me and say something like "hey, we're gonna need to lop your entire ear off". Good! Do it!

I just worry a little because it's on my ear. That's got a pretty good blood flow and is close to shit like my CNS, brain, etc etc.

I haven't felt any pain anywhere else and there's been no real medical issues that would make me think "hm, that's not usual." So I guess that's good. I just keep jumping to that 18% survival rate if the melanoma has metastasized and my life starts to fucking flash before my eyes. Their reluctance to tell me anything more than the fact that they don't know what it is also has me on edge.

>I just worry a little because it's on my ear. That's got a pretty good blood flow and is close to shit like my CNS, brain, etc etc.
dont worry, it wont just metastasize to your brain or CNS, cancer generally has a preferred environment when it metastasizes and it's usually bone.
>I just keep jumping to that 18% survival rate if the melanoma has metastasized and my life starts to fucking flash before my eyes
don't be worried about that, all metastatic cancer survival rates are super low, that's stage 4 after all. Don't be worried that they don't "know" what kind of melanoma it is, that really just means they have yet to determine the cell of origin or cannot identify specific markers inherent of certain melanoma types. Be happy they didnt misdiagnose something and treat you for it, that's usually where fuckups occur, like giving steroids to fungal infections.

I really appreciate your responses user. It drives me fucking crazy when my doctors say shit like "we have never seen anything like this before" and then refuse to really divulge any further information. I know that usually it's because they don't want to either misdiagnose or wrongly scare the patient or over diagnose or soemthing and it's just to cover their own asses from lawsuit, but I don't know a lot about cancer and so it was pretty fucking spooky to hear that a roomful of pathologists at a medical conference couldn't figure out what the hell it was or what to really do about it.

Let me tl;dr for you:

>doc finds cancer
>doc lops it off
>new cancer is new and everyone is like "this is cool wow!"
>patient has nothing to worry about since the cancer was lopped off

It may be one of those special cases where they can grow it in the lab eternally for doing billion dollar research. From which you'll not see 1 cent.

Basically this,

en.wikipedia.org/wiki/HeLa

Which would be awesome.

No problem at all. Many doctors really are not good at empathizing with patients, or forgot the level of knowledge they have that others do not.
yea pretty much, although the need for cell lines is much lower now, and they can induce eternal growth now in most cell types. I highly doubt anything like HeLa cells will happen again

you should read "the immortal life of henrietta lacks", very good book

I'm gonna be fucking pissed if this is the case and they make billions of dollars off this shit and I don't get anything out of it

It's not up to you really. When you agree and sign off for a biopsy, they take a small sample of that and store it, indefinitely. There are huge storage buildings with frozen tissue samples kept just in case they are needed later for research. Also every baby born after 2000 or so has their blood type categorized, and tons of other information stored.

Still, if I was OP I would want to at least know if my cells were going to be vital to the study of medicine for generations to come.

I guess I'll just be happy to know I'm not actually fucked and I can rest easy with the knowledge that I could potentially be helping a lot of people

does it really matter though? Like, would you really credit yourself with anything?
yep, best mentality right there.

Credit? No. But it would be cool knowing that in a way I will still exist in cancer form. Maybe I will become very contagious and escape from the lab one day and cause an apocalypse. It could be cool.

To get off the subject a bit, I have always been scared that I had some sort of cancer in me. But I had my blood drawn and nothing bad/abnormal came back so I feel better now.

Melanoma is not so bad.

You don't wanna end up like my dad, who had six unique kinds of internal cancer all at once, and they made him a case study as a result, as that shouldn't ever happen, sans severe radiation exposure, which wasn't the case.

Sadly, it was a very short case study.

Plus, I suspect yer a youngin'. I've known a few youngin's with cancer, and so far they've all survived. My ex-wife had breast cancer as 26, and she didn't even need to get a her tits cut off, so... Yeah, Melanoma isn't nothing to sweat about.

I suppose you're more apt to get cancer as you age, but well, if you get old enough, and nothing else kills you first, cancer is inevitable one way or the other.

>You don't wanna end up like my dad, who had six unique kinds of internal cancer all at once
what. how. do you know what types? What did he do professionally?

actually even better do you have a link to the case study results?

Social worker - and, having been retired for nearly 25 years, hobbyist gardener would be more accurate.

Sadly, don't recall the types - just the places. Lung, lymph, kidney, skin, liver, and brain. Skin and something else isn't unusual, but the rest
boggled the oncologists (especially being a mix of "smooth cell" and the other?) and had them sending biopsies of his various bits across the planet. I suppose mum probably still has the files on her computer somewhere, but it seems it's been long enough since I had to help her remotely that the IP cycled, so I can't reach it, and I has no links.

Not getting anything on Google but his name was pretty common, and I assume any published study would have been anonymized, but I do recall mum saving a few related articles. I'll have to look them up when I visit her next and see if the thread's still alive.

This guy is fucked, he's already had two different primary melanomas (this mysterious skin cancer is probably just a weird melanoma) with whatever the fuck his genetic issue is. That 90% survival rate includes all melanomas, but if he keeps having them one will hit a node and then his chances go into the shitter and immunotherapy will make his colon into post buttrape colon.

10 years to live max unless he is in the 20% of people with durable response to keytruda or a neoantigen vac

This undergrad idiot is a wellspring of bad information. Melanoma hits the brain regularly and leptomeningeal cancers will fuck you up. The ear position isn't a death sentence but this particular cancer doesnt need to stop by bones to go metastatic to the brain.

> but if he keeps having them one will hit a node and then his chances go into the shitter and immunotherapy will make his colon into post buttrape colon.
how would one hit a node before being visually detected by OP and surgically removed? it may not be genetic either, he could just stay out in the sun a shitload and they are all independent events.

He posted genetic, idk what he meant by that.

And how would it hit a node before being detected? It all depends on how psychotic OP is about getting people to check every inch of his skin regularly, but even then these cancers can move fast. What if he gets an ocular melanoma? If he is naturally higher risk fro melanoma that could include ocular or mucosal melanoma's that he simply cant look for.

>ocular melanoma
oh man never heard of that. Thanks for the response, id imagine OP would be super psychotic about it; i would be

OP is it Familial Malignant Melanoma, your predisposition?

Stage IA: The 5-year survival rate is around 97%. The 10-year survival is around 95%.

Stage IB: The 5-year survival rate is around 92%. The 10-year survival is around 86%.

Stage IIA: The 5-year survival rate is around 81%. The 10-year survival is around 67%.

Stage IIB: The 5-year survival rate is around 70%. The 10-year survival is around 57%.

Stage IIC: The 5-year survival rate is around 53%. The 10-year survival is around 40%.

Stage IIIA: The 5-year survival rate is around 78%. The 10-year survival is around 68%.*

Stage IIIB: The 5-year survival rate is around 59%. The 10-year survival is around 43%.

Stage IIIC: The 5-year survival rate is around 40%. The 10-year survival is around 24%.

and? what stage is OP at?

I'm just fair skinned and have a bunch of
Moles.

Bump

OP again. I'll keep everyone updated. I'm supposed to get a call this week about what my next steps are, and what UC SF managed to find out. At this point I'm not super worried anymore, mostly just kind of antsy and curious.

And I'm pretty crazy about getting my skin checked- especially so after this whole ordeal. I'd like to have kids and raise them in the future. Not die horribly in my late 20's or mid 30's. I'm gonna be going into overdrive when it comes to taking care of my skin from now on and I was already pretty neurotic about it.

Are you hoping it spreads to your cawk? You could end up with a gigantic log!

I feel like if it spreads to my dick, I'm already done for- big cock or not

I don't know much about cancer itself specifically, but brachytherapy or electron beam treatments may be the treatment route for skin cancers.

Her cells are too picky about their growing conditions

Well, they could just cut your ear off as a precaution and worry about the interesting cancer later

OP here with update:

My doctor told me that they're taking a bit longer than expected at the lab with my biopsy- only because they just want to nail down exactly what it is, so they know exactly how much of my ear to lop off. Apparently with surgeries that effect "cosmetically sensitive" areas like ears and other facial features, they try to figure out EXACTLY how much to chop off instead of just going for it aggressively because they worry about unnecessary disfigurement . I told them I didn't give a shit and they could go for it as aggressively as possible but they said they couldn't just do that.

I also sent my slides out to MD Anderson and Baylor and will get word from them as well, so if anything medically interesting is going on I'll be sure to post details. At this point I'm not worried about dying unless they come back with something drastically out of the blue, but I'm just curious about what the hell is going on

They say they can't do it because they're afraid you might end up regretting it and it can last a lifetime of mental insecurity.

You're not gonna die, user, just wait it out until the ear gets a good old circumsision

>I also sent my slides out to MD Anderson and Baylor and will get word from them as well, so if anything medically interesting is going on I'll be sure to post details
I would send them to the University of Wisconsin's Carbone Cancer Center as well. UW does a lot of work in medical physics, and has a lot of top researchers.

>cancer on my ear

obviously you need to cut off the ear now before it spreads

>they're afraid you might end up regretting it and it can last a lifetime of mental insecurity.
translation: They are afraid they will get sued. One does not simply abandon standard operating procedure, or their insurance won't cover them.

I figured that was the case.

Personally I don't give a damn about what my ear looks like. I'd rather look like a mild freak than be a dead, cancerous corpse- but I'm glad they're only taking their time figuring out what shit is because it's just a matter of how much of my ear they wanna nip off, instead of them taking their time trying to come up with a miracle because I have superdeath cancer and it's gonna metastasize to my brain in the next 2 weeks.

If this gets dragged out even longer after Baylor and MD Anderson look at it, I'll keep those guys in mind.

The first night I knew I had it, I actually considered getting really drunk and sawing a chunk of my ear off with my pocket knife. Kind of glad I didn't go through with that.

>If this gets dragged out even longer after Baylor and MD Anderson look at it, I'll keep those guys in mind.
They are also one of the 3 Accredited Dosimetry Calibration Laboratories (ADCLs), alongside MD Anderson, and K&S Associate, who provide calibration services for brachytherapy source air-kerma strength and well chambers, traceable to NIST.
Good luck m8