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New diagnosis / breaking the news
My doctor is 90% certain I have multiple myeloma - a couple tests still pending. It was caught via routine blood tests with anemia and elevation of some serum protein levels. Still haven't told my family as they have been (all of us) under significant stress lately due to other unforeseen circumstances. When the time is right, wondering what the best way to deliver this message is.
Re: New diagnosis / breaking the news
I'm sure the first thing they will want to know is what the survival rate is. The treatments for this disease have come so far so fast that it will be easy for them to get misinformation. I think you should arm yourself with the information they need so that they won't get a lot of old outdated information.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: New diagnosis / breaking the news
Hi Sevans. First, I am sorry that you have (or will) received a myeloma diagnosis. All of us who read and post to this site are here for you.
When I was diagnosed, I told people in person if at all possible. However, most of my family and some of my close friends don't live near me, so I had to tell them by phone. There is no good way to tell someone that you have cancer, so just say it. I agree with Wayne that you should have information, but be ready to say "I don't know yet" a lot. Some of the questions will be annoying but they might also give you ideas about what you want to ask your oncologist.
Think about whether you want them to spread the news to others or not. Do you want to be private or open about having myeloma? For example, I told my parents not to tell their friends in the retirement community -- mainly because I didn't want to start receiving a lot of well meaning, but outdated or outright ignorant information. I told my parents that if they knew someone who was being treated right now, I'd like to hear what they person said about treatments.
Another issue to be ready for is immediate offers to be a bone marrow donor. Myeloma patients have been receiving blood stem cell transplants, not bone marrow. And, in addition to being a match, the donor would need to be suitable. Again, with my parents, I had to gently point out to them why they would be unsuitable donors.
And, be prepared to be strong at first for the people you tell. This is going to be a shock to them, just like it is for you. After they've digested the news, they will be strong for you.
When I was diagnosed, I told people in person if at all possible. However, most of my family and some of my close friends don't live near me, so I had to tell them by phone. There is no good way to tell someone that you have cancer, so just say it. I agree with Wayne that you should have information, but be ready to say "I don't know yet" a lot. Some of the questions will be annoying but they might also give you ideas about what you want to ask your oncologist.
Think about whether you want them to spread the news to others or not. Do you want to be private or open about having myeloma? For example, I told my parents not to tell their friends in the retirement community -- mainly because I didn't want to start receiving a lot of well meaning, but outdated or outright ignorant information. I told my parents that if they knew someone who was being treated right now, I'd like to hear what they person said about treatments.
Another issue to be ready for is immediate offers to be a bone marrow donor. Myeloma patients have been receiving blood stem cell transplants, not bone marrow. And, in addition to being a match, the donor would need to be suitable. Again, with my parents, I had to gently point out to them why they would be unsuitable donors.
And, be prepared to be strong at first for the people you tell. This is going to be a shock to them, just like it is for you. After they've digested the news, they will be strong for you.
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: New diagnosis / breaking the news
Sevans,
I'm so sorry you have had this diagnosis, but you are in the right place.
Last fall I lost a friend to lung cancer. As with most lung cancers, it was diagnosed as stage IV, and he lived only four months. When most people hear the word cancer, this is what they think of. There is no good way to tell someone you have multiple myeloma, but you can tell them that most people live a long time with the disease, and that new treatments are being approved every year. Also that many people, once they get their multiple myeloma under control, lead a fairly normal life.
Many of your friends may already be familiar with multiple myeloma, since Tom Brokaw announced that he had it.
Good luck!
Lyn
I'm so sorry you have had this diagnosis, but you are in the right place.
Last fall I lost a friend to lung cancer. As with most lung cancers, it was diagnosed as stage IV, and he lived only four months. When most people hear the word cancer, this is what they think of. There is no good way to tell someone you have multiple myeloma, but you can tell them that most people live a long time with the disease, and that new treatments are being approved every year. Also that many people, once they get their multiple myeloma under control, lead a fairly normal life.
Many of your friends may already be familiar with multiple myeloma, since Tom Brokaw announced that he had it.
Good luck!
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: New diagnosis / breaking the news
I agree with Wayne K - tell those close to you to be very careful about what they read on the internet. There's a lot of older information out there that suggests that most people with myeloma will only live 2 - 5 years after diagnosis. This is not the case for most people being diagnosed with the disease now. Ten years is not unreasonable to hope for. It would be good to learn a bit about the current therapeutic approaches as well. It's highly unlikely that they'll be starting you on what most people would think of as a typical chemotherapy regimen, with the attendant vomiting and hair loss (and when most people hear "cancer treatment", this is what they expect.)
I guess I never figured out the best way to tell people. I just came out and told my parents and those I'm closest to as I think that's the sort of thing they need to know as soon as possible. Stressing the improvements in therapy that have come about over the last ten years and the potential for even more effective therapies in the near future helps soften the blow a little. For others - colleagues and friends - I think you just try and wait for the right situation. If you're like me, you'll do well with some of these and not so well with others. It's a unique situation and you can't expect to be perfect, so don't feel bad if you aren't.
I guess I never figured out the best way to tell people. I just came out and told my parents and those I'm closest to as I think that's the sort of thing they need to know as soon as possible. Stressing the improvements in therapy that have come about over the last ten years and the potential for even more effective therapies in the near future helps soften the blow a little. For others - colleagues and friends - I think you just try and wait for the right situation. If you're like me, you'll do well with some of these and not so well with others. It's a unique situation and you can't expect to be perfect, so don't feel bad if you aren't.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: New diagnosis / breaking the news
I don't think there is any easy way. Think about who you want to know,
I just told people in person as I saw them. My sister called close friends for me, to say I was sick (we are twins so we have mutual friends) My sister and brother broke the news to my other family (called my aunts and my parents) since I was in the hospital and very sick when I was diagnosed.
I asked friends not to post anything on facebook, and keep it off social media (ie. no get well soon messages on my wall or anything). I was really young for multiple myeloma (32), so maybe not all multiple myeloma patients use facebook.. lol.
I'm 4 years out from diagnosis. now I actually post some myeloma info on my facebook (usually about exciting news, or stuff from documented sources like Myeloma Canada). Since all my friends and family obviously know what I've been through. I did delete a bunch people who were not really close friends from my facebook so I would feel comfortable sharing more personal info that way since my friends list is closer friends and family.
I just told people in person as I saw them. My sister called close friends for me, to say I was sick (we are twins so we have mutual friends) My sister and brother broke the news to my other family (called my aunts and my parents) since I was in the hospital and very sick when I was diagnosed.
I asked friends not to post anything on facebook, and keep it off social media (ie. no get well soon messages on my wall or anything). I was really young for multiple myeloma (32), so maybe not all multiple myeloma patients use facebook.. lol.
I'm 4 years out from diagnosis. now I actually post some myeloma info on my facebook (usually about exciting news, or stuff from documented sources like Myeloma Canada). Since all my friends and family obviously know what I've been through. I did delete a bunch people who were not really close friends from my facebook so I would feel comfortable sharing more personal info that way since my friends list is closer friends and family.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
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