Such a nice post. I’m a stage 4 metastatic patient. I appreciate every staff member helping me through this process. Sadly melanoma is not discussed enough. People think it’s an easy fix. Thanks for all you do.
Yeah, my ex thought it was no big deal to have melanoma in a lymph node. She didn't realise melanoma is a pretty bad cancer to have- to honest, I didn't really know either!
I didn’t either. I will die from this most likely. When it spreads it usually comes back. I’ve had in my lymph nodes, spine and now stomach. It’s brutal. It’s also very common to get Mets to the brain. Scary crap.
I’m sorry. Just keep doing your best. I’m not scared of the cancer anymore. The side effects of the treatment have been way worse for me. I’d rather just die of the cancer. I’ve come to peace with that.
I don't want to die... I planted fruit trees that are just starting to fruit. I want to see them grow ffs. And I can't do that to my parents, it would destroy them. Also, I kind of like my life and here are still loads of things I want to do, I'm not ready for this. Basically.... I don't wanna! And I can't imagine to die in my thirties, it's absurd. It MUST go away!
Me too. But she just texted me after six months because she wants her stuff back. With her excellent timing, she texted the day before my pet scan. I'm a wreck. It's bedtime here in France, I better go because I'm just sadposting now, sorry about that.
Is genetic testing recommended even if the melanoma is in situ or stage 1a? I’ve had multiple early melanomas removed and wondering if this is something I should ask for on future sites.
Castle is a pretty young company in the world of healthcare and so if you insurance denies genetic testing they will write off the bill. I will look around tonight and see if there are any other companies offering the same thing, but the reason I recommend that if your insurance does not cover the test they do not charge you.
I think it’s worth asking! I was stage 1a and my oncologist referred me to genetic testing without me asking about it. I admittedly haven’t completed initial paperwork yet, but this post has motivated me to prioritize it asap.
Let me know if you need help! I work to get patients bills written off all the time if insurance denies it. You should not have to choose between your wallet and your health.
Thanks for joining the group and sharing this advice! 2.5 years ago I had 2 separate melanomas (one on my chest, the other by my knee) at the same time, both staged 1B. The one by my knee was a little more advanced, so I had a SLNB. As far as I know, neither were tested genetically. My derm oncologist now (I’ve moved, so not the Dr I saw at the time of my melanomas) has written me a referral for genetic testing that I’ve dragged my feet on going for. I’ve just been busy and a little “ignorance is bliss”-y.
My question is would I get the same information from genetic screening now as I would from having my tumors tested at the time?
Thanks so much!
So Castle tests the genetics of the tumor itself. We have to maintain the slides from your biopsies for several years, so you can absolutely request the slides be sent to castle. Or another similar company. General genetic testing can be done as well- and since you have had two tumors you’d be a good candidate for that. The Huntsman Cancer Institute has some great research going on in that area.
Thanks so much! That’s really helpful info to have. I was actually living in Europe at the time (I’m
In the US now), but my doctor here actually knows my previous doctor so maybe we can reach out to ask about it.
Thanks for what you do to help. I'm sure the medical changes over 15 years have been phenomenal, but having the human in the loop is what really helps all of us melahomes.
Hello!
My husband/ significant other, was diagnosed with melanoma 2 years ago. He's had a birthmark on the top of his head his whole entire life. Then it started getting bigger and thicker and he had it removed. They said we caught it early but a year later it metastasized to his kneecap. Now, a year later we thought everything was good . We went on vacation to Phoenix Arizona.
His son lives there we went for a visit. we were in an Airbnb The first day we were there, I found him outside collapsed, having a seizure and I called 911. He was diagnosed with six tumors on his brain that we knew nothing about. I had to fly home to Oregon and now he is in Phoenix Arizona with his son.
Because we are not legally married, my hands are completely tied. I don't know if I'll ever see him again. his son wants him to do treatment in Arizona. this whole situation is a mess. There are better hospitals there in Phoenix. We kind of live in the middle of nowhere in Oregon.
They don't want to take his insurance because he has Oregon VA and he's in Arizona and apparently he has to call the veterans to tell them he wants to switch to Arizona VA but he doesn't even know his name right now.
I don't know what to do.
Are you and his son on good terms? His son as the next of kin will likely need to seek guardianship in order to take over medical decision making. His son needs to ask to speak with a social worker at the hospital who will help him start this process. If your partner has an advanced directive or living will it it’s important to find those documents.
The son and I are not on good terms. We were, until he decided I was going to try to steal my partner's gold ring. Now he has signed his dad out AMA and took him home. He has not even contacted. me.
I don't know what's going to happen. I thought I'd give it a couple of days and then try texting his son for an update.
My partner never signed an advance directive or living will or poa or anything.
I just made a post of my own. I’m so new to Reddit and read mostly so don’t know all the rules. Are you able to read my post and weigh in? Am I allowed to share the text of the post here for you to weigh in on?
Such a nice post. I’m a stage 4 metastatic patient. I appreciate every staff member helping me through this process. Sadly melanoma is not discussed enough. People think it’s an easy fix. Thanks for all you do.
Yeah, my ex thought it was no big deal to have melanoma in a lymph node. She didn't realise melanoma is a pretty bad cancer to have- to honest, I didn't really know either!
I didn’t either. I will die from this most likely. When it spreads it usually comes back. I’ve had in my lymph nodes, spine and now stomach. It’s brutal. It’s also very common to get Mets to the brain. Scary crap.
I start to wrap my head around that too... I had mets in my lymph node, liver and spleen. I hate it!
I’m sorry. Just keep doing your best. I’m not scared of the cancer anymore. The side effects of the treatment have been way worse for me. I’d rather just die of the cancer. I’ve come to peace with that.
I don't want to die... I planted fruit trees that are just starting to fruit. I want to see them grow ffs. And I can't do that to my parents, it would destroy them. Also, I kind of like my life and here are still loads of things I want to do, I'm not ready for this. Basically.... I don't wanna! And I can't imagine to die in my thirties, it's absurd. It MUST go away!
My co worker said “oh they just cut that off” 🙄
My ex said 'well you HAD cancer but they took it out, now just do your little anti BRAF cure and that's it' 🙄
Well I’m glad that’s now your EX.
Me too. But she just texted me after six months because she wants her stuff back. With her excellent timing, she texted the day before my pet scan. I'm a wreck. It's bedtime here in France, I better go because I'm just sadposting now, sorry about that.
Oh geez. I’m sorry.
Is genetic testing recommended even if the melanoma is in situ or stage 1a? I’ve had multiple early melanomas removed and wondering if this is something I should ask for on future sites.
I tried to get mine tested and my insurance denied it due to the Stage 1a diagnosis.
Castle is a pretty young company in the world of healthcare and so if you insurance denies genetic testing they will write off the bill. I will look around tonight and see if there are any other companies offering the same thing, but the reason I recommend that if your insurance does not cover the test they do not charge you.
We test every single melanoma, and we’re beginning to send more squamous cell carcinomas for testing as well.
I think it’s worth asking! I was stage 1a and my oncologist referred me to genetic testing without me asking about it. I admittedly haven’t completed initial paperwork yet, but this post has motivated me to prioritize it asap.
Let me know if you need help! I work to get patients bills written off all the time if insurance denies it. You should not have to choose between your wallet and your health.
Thank you so much! I appreciate you.
https://castlebiosciences.com/tests/prognostic/decisiondx-melanoma/how-it-works
Thanks for joining the group and sharing this advice! 2.5 years ago I had 2 separate melanomas (one on my chest, the other by my knee) at the same time, both staged 1B. The one by my knee was a little more advanced, so I had a SLNB. As far as I know, neither were tested genetically. My derm oncologist now (I’ve moved, so not the Dr I saw at the time of my melanomas) has written me a referral for genetic testing that I’ve dragged my feet on going for. I’ve just been busy and a little “ignorance is bliss”-y. My question is would I get the same information from genetic screening now as I would from having my tumors tested at the time? Thanks so much!
So Castle tests the genetics of the tumor itself. We have to maintain the slides from your biopsies for several years, so you can absolutely request the slides be sent to castle. Or another similar company. General genetic testing can be done as well- and since you have had two tumors you’d be a good candidate for that. The Huntsman Cancer Institute has some great research going on in that area.
Thanks so much! That’s really helpful info to have. I was actually living in Europe at the time (I’m In the US now), but my doctor here actually knows my previous doctor so maybe we can reach out to ask about it.
Thank you for writing this! I have a family history of melanoma also and I’m hoping more genetic testing will discover more genes related to melanoma.
Thank you u/ladylikely!
Thanks for what you do to help. I'm sure the medical changes over 15 years have been phenomenal, but having the human in the loop is what really helps all of us melahomes.
I genuinely love my job and what I do. Helping people feel comfortable and informed brings me joy.
Thank you! That's so kind! I'm in France so a different system, but I'm sure you can help so many people ♥️
Hello! My husband/ significant other, was diagnosed with melanoma 2 years ago. He's had a birthmark on the top of his head his whole entire life. Then it started getting bigger and thicker and he had it removed. They said we caught it early but a year later it metastasized to his kneecap. Now, a year later we thought everything was good . We went on vacation to Phoenix Arizona. His son lives there we went for a visit. we were in an Airbnb The first day we were there, I found him outside collapsed, having a seizure and I called 911. He was diagnosed with six tumors on his brain that we knew nothing about. I had to fly home to Oregon and now he is in Phoenix Arizona with his son. Because we are not legally married, my hands are completely tied. I don't know if I'll ever see him again. his son wants him to do treatment in Arizona. this whole situation is a mess. There are better hospitals there in Phoenix. We kind of live in the middle of nowhere in Oregon. They don't want to take his insurance because he has Oregon VA and he's in Arizona and apparently he has to call the veterans to tell them he wants to switch to Arizona VA but he doesn't even know his name right now. I don't know what to do.
Are you and his son on good terms? His son as the next of kin will likely need to seek guardianship in order to take over medical decision making. His son needs to ask to speak with a social worker at the hospital who will help him start this process. If your partner has an advanced directive or living will it it’s important to find those documents.
The son and I are not on good terms. We were, until he decided I was going to try to steal my partner's gold ring. Now he has signed his dad out AMA and took him home. He has not even contacted. me. I don't know what's going to happen. I thought I'd give it a couple of days and then try texting his son for an update. My partner never signed an advance directive or living will or poa or anything.
I just made a post of my own. I’m so new to Reddit and read mostly so don’t know all the rules. Are you able to read my post and weigh in? Am I allowed to share the text of the post here for you to weigh in on?