› Forums › General Melanoma Community › How and who do you tell about diagnosis?
- This topic has 21 replies, 6 voices, and was last updated 10 years, 9 months ago by Pennie Jo.
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- March 27, 2014 at 4:58 pm
I am stage IV melanoma and papillary thyroid cancer. I have mets to ovary and breast. I am having total thyroidectomy on Tuesday and follow with yet to be determined clinical trial. I have two children aged 16 and 10 and they know what is going on but in a super upbeat no big deal kind of way (I was stage I 8 years ago so they know I've had this before). I am struggling with telling people. I am torn between wanting people to know and not burdening them with knowing. I fear that people will treat me differently. On the other hand, do other people have the "right" to know? I have informed my younger child's school and my husband's job but I haven't told my siblings. In the world of social media, I have no idea how to break the news.
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- March 27, 2014 at 8:47 pm
When my husband was 1st diagnosed with stage 4, I sent an email to close friends and family explaining what was going on. The only person I told over the phone was his sister, because she was helping with the kids (and she set up meal schedule within a few hours so that i didn't have to worry about it). I sent the email simply because I didn't want to repeat it over and over again. Plus, I needed help with our kids (ages 7, 8, and 10). I emailed updates to them and asked them not to share the news until we knew more. I told the kids school and teachers, so they could keep an eye on the kids for me. As he progressed through surgeries and began his first treatment, I continued sharing via email and told everyone they could share the news…word was getting around at school and we wanted everyone to know what was going on. I didn't have to explain it over and over again. Eventually I started a caringbridge website and at this point we don't care who knows what. It has to be your call when you tell people. From our experience, everyone has been so supportive and I couldn't imagine going through this without everyone's support. I don't believe anyone has the "right" to know something if you don't want to share, but if you don't share the rumor mill may start. Plus, all it takes is one of the kids to say something to a friedn about Mom having cancer and everyone starts talking. We decided we would rather share the truth and our perspective instead of people guessing and wondering what was going on. Also, for what it's worth, we've learned the hard way that being brutally honest with our kids is the best policy for us. They know the risks, they know the probable outcome, they know everything. They also come to us with all their questions, worries and concerns. They've understood all his surgeries, all his treatments and seem ok most of the time. We'd rather them know the truth of this awful disease instead of the sugar-coated version of it we told them at the beginning.
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- March 27, 2014 at 8:47 pm
When my husband was 1st diagnosed with stage 4, I sent an email to close friends and family explaining what was going on. The only person I told over the phone was his sister, because she was helping with the kids (and she set up meal schedule within a few hours so that i didn't have to worry about it). I sent the email simply because I didn't want to repeat it over and over again. Plus, I needed help with our kids (ages 7, 8, and 10). I emailed updates to them and asked them not to share the news until we knew more. I told the kids school and teachers, so they could keep an eye on the kids for me. As he progressed through surgeries and began his first treatment, I continued sharing via email and told everyone they could share the news…word was getting around at school and we wanted everyone to know what was going on. I didn't have to explain it over and over again. Eventually I started a caringbridge website and at this point we don't care who knows what. It has to be your call when you tell people. From our experience, everyone has been so supportive and I couldn't imagine going through this without everyone's support. I don't believe anyone has the "right" to know something if you don't want to share, but if you don't share the rumor mill may start. Plus, all it takes is one of the kids to say something to a friedn about Mom having cancer and everyone starts talking. We decided we would rather share the truth and our perspective instead of people guessing and wondering what was going on. Also, for what it's worth, we've learned the hard way that being brutally honest with our kids is the best policy for us. They know the risks, they know the probable outcome, they know everything. They also come to us with all their questions, worries and concerns. They've understood all his surgeries, all his treatments and seem ok most of the time. We'd rather them know the truth of this awful disease instead of the sugar-coated version of it we told them at the beginning.
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- March 27, 2014 at 8:47 pm
When my husband was 1st diagnosed with stage 4, I sent an email to close friends and family explaining what was going on. The only person I told over the phone was his sister, because she was helping with the kids (and she set up meal schedule within a few hours so that i didn't have to worry about it). I sent the email simply because I didn't want to repeat it over and over again. Plus, I needed help with our kids (ages 7, 8, and 10). I emailed updates to them and asked them not to share the news until we knew more. I told the kids school and teachers, so they could keep an eye on the kids for me. As he progressed through surgeries and began his first treatment, I continued sharing via email and told everyone they could share the news…word was getting around at school and we wanted everyone to know what was going on. I didn't have to explain it over and over again. Eventually I started a caringbridge website and at this point we don't care who knows what. It has to be your call when you tell people. From our experience, everyone has been so supportive and I couldn't imagine going through this without everyone's support. I don't believe anyone has the "right" to know something if you don't want to share, but if you don't share the rumor mill may start. Plus, all it takes is one of the kids to say something to a friedn about Mom having cancer and everyone starts talking. We decided we would rather share the truth and our perspective instead of people guessing and wondering what was going on. Also, for what it's worth, we've learned the hard way that being brutally honest with our kids is the best policy for us. They know the risks, they know the probable outcome, they know everything. They also come to us with all their questions, worries and concerns. They've understood all his surgeries, all his treatments and seem ok most of the time. We'd rather them know the truth of this awful disease instead of the sugar-coated version of it we told them at the beginning.
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- March 28, 2014 at 12:28 am
My husband told our daughters on the phone. Later on he sent an email to family and close friends. I started a blog to keep everyone up to date – you can read how we have dealt with his diagnosis and treatment.
So can everyone else in the Whole Wide World. Blogging is not for everyone – some people are more private about it.
Perhaps you would want to establish a small community on the Caring Bridge website or Lotsa Helping Hands (if you have people who want to help). That would allow you to choose what to share and with whom.
~Hazel
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- March 28, 2014 at 6:00 am
My Mom was diagnosised in early November with stage IV. If she had recognized that there was something truly wrong earlier she might not have brain mets now. (She would likey still be at stage IV.) 9 large mets were found the day she had gamma knife radiation. 3 were found a month earlier. In February there were so many tiny mets they couldn’t count them.Melanoma found on the scalp is one of the most deadly to get…
We tell everyone. Family, my clients, my mechanic, my hairdresser, all 200+ students at the private school she worked at. If one person knows about this and it helps someone we’d be happy.
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- March 28, 2014 at 6:00 am
My Mom was diagnosised in early November with stage IV. If she had recognized that there was something truly wrong earlier she might not have brain mets now. (She would likey still be at stage IV.) 9 large mets were found the day she had gamma knife radiation. 3 were found a month earlier. In February there were so many tiny mets they couldn’t count them.Melanoma found on the scalp is one of the most deadly to get…
We tell everyone. Family, my clients, my mechanic, my hairdresser, all 200+ students at the private school she worked at. If one person knows about this and it helps someone we’d be happy.
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- March 28, 2014 at 6:00 am
My Mom was diagnosised in early November with stage IV. If she had recognized that there was something truly wrong earlier she might not have brain mets now. (She would likey still be at stage IV.) 9 large mets were found the day she had gamma knife radiation. 3 were found a month earlier. In February there were so many tiny mets they couldn’t count them.Melanoma found on the scalp is one of the most deadly to get…
We tell everyone. Family, my clients, my mechanic, my hairdresser, all 200+ students at the private school she worked at. If one person knows about this and it helps someone we’d be happy.
-
- March 28, 2014 at 12:28 am
My husband told our daughters on the phone. Later on he sent an email to family and close friends. I started a blog to keep everyone up to date – you can read how we have dealt with his diagnosis and treatment.
So can everyone else in the Whole Wide World. Blogging is not for everyone – some people are more private about it.
Perhaps you would want to establish a small community on the Caring Bridge website or Lotsa Helping Hands (if you have people who want to help). That would allow you to choose what to share and with whom.
~Hazel
-
- March 28, 2014 at 12:28 am
My husband told our daughters on the phone. Later on he sent an email to family and close friends. I started a blog to keep everyone up to date – you can read how we have dealt with his diagnosis and treatment.
So can everyone else in the Whole Wide World. Blogging is not for everyone – some people are more private about it.
Perhaps you would want to establish a small community on the Caring Bridge website or Lotsa Helping Hands (if you have people who want to help). That would allow you to choose what to share and with whom.
~Hazel
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- March 28, 2014 at 5:16 pm
I was diagnosed with stage 4 when I lost the use of my right arm and leg from a brain tumor. I was sent by ambulance for a craniotomy. We called my immediate family like you would with any major sugery. But I am not a very private person, so I had called my boss before surgery, and I was posting it on facebook as soon as I woke up. I went through rehab and treatment with facebook friends at my side. When someone heard that I was dying, I was able to stop that rumor in its tracks…We live over an hour away from the hospital so facebook allowed me to stay in touch….
I think it all depends on you….most people will be supportive. Some will find it hard to talk to you…give them time. For me I find that the more open I am the easier it is for people to handle it,and the easier it is for me…
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- March 28, 2014 at 5:16 pm
I was diagnosed with stage 4 when I lost the use of my right arm and leg from a brain tumor. I was sent by ambulance for a craniotomy. We called my immediate family like you would with any major sugery. But I am not a very private person, so I had called my boss before surgery, and I was posting it on facebook as soon as I woke up. I went through rehab and treatment with facebook friends at my side. When someone heard that I was dying, I was able to stop that rumor in its tracks…We live over an hour away from the hospital so facebook allowed me to stay in touch….
I think it all depends on you….most people will be supportive. Some will find it hard to talk to you…give them time. For me I find that the more open I am the easier it is for people to handle it,and the easier it is for me…
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- March 28, 2014 at 5:16 pm
I was diagnosed with stage 4 when I lost the use of my right arm and leg from a brain tumor. I was sent by ambulance for a craniotomy. We called my immediate family like you would with any major sugery. But I am not a very private person, so I had called my boss before surgery, and I was posting it on facebook as soon as I woke up. I went through rehab and treatment with facebook friends at my side. When someone heard that I was dying, I was able to stop that rumor in its tracks…We live over an hour away from the hospital so facebook allowed me to stay in touch….
I think it all depends on you….most people will be supportive. Some will find it hard to talk to you…give them time. For me I find that the more open I am the easier it is for people to handle it,and the easier it is for me…
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- March 28, 2014 at 6:33 pm
Thanks to everyone who replied. I am a military spouse also and that means that our "support" system is literally scattered around the world. I did tell my siblings and will probably send some emails to my military peeps soon. Thanks!!
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- March 29, 2014 at 9:20 pm
For my sisters communication – we have used carepages.com. It is a wonderful outlet that you can make private and chose who joins the page. As you stated it us much easier to send info to several at once so you are not repeating everything or you don't have to worry about telling one person something you didn't tell the other! One thing I found VERY important and beneficial was educating everyone exactly what Metastatic Melanoma is …. Not just another skin cancer. And that symptoms and treatments are none like any other cancer!!! Once I explained in details, so many of her friends and family members where so much more understanding! Best wishes to you and yours with this journey! God Bless
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- March 29, 2014 at 9:20 pm
For my sisters communication – we have used carepages.com. It is a wonderful outlet that you can make private and chose who joins the page. As you stated it us much easier to send info to several at once so you are not repeating everything or you don't have to worry about telling one person something you didn't tell the other! One thing I found VERY important and beneficial was educating everyone exactly what Metastatic Melanoma is …. Not just another skin cancer. And that symptoms and treatments are none like any other cancer!!! Once I explained in details, so many of her friends and family members where so much more understanding! Best wishes to you and yours with this journey! God Bless
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- March 29, 2014 at 9:20 pm
For my sisters communication – we have used carepages.com. It is a wonderful outlet that you can make private and chose who joins the page. As you stated it us much easier to send info to several at once so you are not repeating everything or you don't have to worry about telling one person something you didn't tell the other! One thing I found VERY important and beneficial was educating everyone exactly what Metastatic Melanoma is …. Not just another skin cancer. And that symptoms and treatments are none like any other cancer!!! Once I explained in details, so many of her friends and family members where so much more understanding! Best wishes to you and yours with this journey! God Bless
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