Would you want to know?

[AprilBaby]

So I have a younger sister I am estranged from because she has an "eeyore" personality, meaning "woe is me" and generally pessimistic and dramatic. I can't take the downer she gives me when we talk so we haven't for several years. Yesterday she sent me an email. She is having surgery next week ( one of many , I swear she does it for the attention) and in case she dies she just wanted me to know a few things. Apparently we have several genetic conditions which run on our maternal side. Two I can deal with and I suspect from previous episodes they are probably true. The third is multiple myeloma which killed our grandmother and aunt, and is apparently a genetic form. It hits after 60. My grandmother got it in her late 70's, my aunt in her early 70's and it gets earlier for next generations. I am 54. My mother died of non genetic breast cancer at 32. My two cousins have had genetic testing and carry it. My sister has the first two, she hasn't found out about the myeloma, yet. MM has no cure at this point. In the back of my mind I have always thought it a possibility but didn't think much of it. I don't think I want to know. Would you want to know if you knew it was incurable??? It's really bumming out my day.

 

[movie zombie]

I think I would want to know.
I don't do well with lingering doubt/possibility at the back of my mind.
tell me what I have and i'll deal with it......don't leave me guessing.
however, if I had no clue about something, well, don't tell me and get me started worrying about something that may not be.
this is, of course, about health issues!

 

[Skippy123]

I am sorry to hear this; I am not sure what I would do. I think I would wait awhile and then decide. hugs and good thoughts/prayers while deciding. I hope everything is okay.

 

[SB621]

I would want to know, especially if it were genetic i.e. it would affect my children (emotionally or physically). Plus I would always wonder about it. If I had it, If there was something I could do, If... I'm a planner so I would find out.

 

[packrat]

I would want to know. Even if it's something that is incurable, I would want to know-what if there was something I could do that would prolong my good years w/my kids and husband?

 

[Circe]

As I understand genetic testing, it's never 100% - if I'm remembering the headlining story of the last year on the topic correctly, even Angelina Jolie had something like an 86% chance of developing breast cancer, which for her and her doctors was enough to take prophylactic measures.

You say myeloma is incurable. Is there anything that can be done to delay it? If not, I say there's no point to knowing: if there are no preventative measures to be taken, why put yourself through the emotional wringer and run the chance of it hanging over your head for a happy and healthy rest of your life?

BTW ... for what it's worth, I have several people in my life who give me contact depression every time I talk to them. Two are family. I can definitely see the appeal of just *knocking it off,* even if they won't ... as well as the potential for guilt and frustration ....

 

[MichelleCarmen]

MM has no cure at this point. In the back of my mind I have always thought it a possibility but didn't think much of it. I don't think I want to know. Would you want to know if you knew it was incurable??? It's really bumming out my day.

You said you don't think you want to know...sounds like you would prefer not to get tested. Go with what feels right to you. Don't let this bum you out. Move on and look for positive thoughts and think about what makes you feel good, not let the conversation w/your sister burden you.

I never thought of that term, "contact depression," that Circe mentioned, but now do realize that a couple of relatives do that to me. I always thought it was the psychic vampire situation where they drain energy by always talking about DEEP things and all I want to do is hang up the phone. It always is better to avoid being sucked into these situations and by having the test done, you're being sucked in!

 

[dreamer_dachsie]

I would not want to know.

Testing positive does not guarantee you will get it. Testing negative doesn't mean you are safe. The future is a great unknown, and I prefer to embrace and accept that than try to grasp control of the uncontrollable, or predict the unpredictable.

 

[dreamer_dachsie]

You say myeloma is incurable. Is there anything that can be done to delay it? If not, I say there's no point to knowing: if there are no preventative measures to be taken, why put yourself through the emotional wringer and run the chance of it hanging over your head for a happy and healthy rest of your life?..

Actually, this would matter to my decision. I try not to control the truly uncontrollable. But if there were concrete steps I could take to avoid developing the cancer... and if I could not/should not take those steps without knowing the test results (like mastectomy), then I might consider getting the test.

But, even 86% chance does not actually say anything about YOUR chance of getting cancer. That statistic means of 100 people carrying the gene, 86 will get the cancer. But there is no way to know whether you will be one of the 86 or one of the lucky 14. Even though the 86% chance makes the statistic feel like a "done deal" it is not. I think that population statistics and risk factors can make things seem like they are predictable in one's own life... but the feeling of certainty created by risk factors is false in some very important ways.

 

[diamondseeker2006]

Does carrying the gene mean you 100% for sure develop the disease? I think the uncertainty might bother me more. But on the other hand, I am one who rarely does medical testing other than the usual GYN stuff. My Dad had Alzheimer's and I have a lot of his genes. They talk about possible tests for that. I really don't know what I'd do other than do what I could now to prevent or delay it.

 

[mlk]

Aprilbaby I am so sorry you are dealing with this. Multiple myeloma and its associated disease amyloidosis are dreadful diseases and you are correct when you say they are currently incurable. My father died at 61 of multiple myeloma and amyloidosis 5 years ago. My mother died of amyloidosis 3 years ago at age 65 so I know the feelings which are going through your head as they have gone through Mine.

I am 32 and after my mother died I had some blood tests which were all that were offered to me at the time. No genetic testing was mentioned but perhaps that was because the hematologist s at the hospital couldn't believe that a husband and wife who weren't blood related had it. Their view was that my parents must have been exposed to something. My father was a farmer, with my mother living on his farm for 10 years (my first 8 years of life) and my father later having a business where he sharpened saws and other tools. I am worried too that I was exposed to whatever they were and often think of it but also try to put it to the back of your mind.

I know you mentioned genetic MM but is it possible that your grandmother and aunt were exposed to something which brought it on?

I do know that there is a lot of research going on and if it is caught early then treatment options can bring on some sort of remission or at least slow down its progress so perhaps even educating yourself of early symptoms may be an option and if something develops then you could have further testing at that time. Catching it early and going to a world class specialist would certainly give you a better outcome/quality of life/lifespan if you are unfortunate enough to ever develop it.

Again I am so sorry that this terrible disease has touched your family.

 

[Circe]

You say myeloma is incurable. Is there anything that can be done to delay it? If not, I say there's no point to knowing: if there are no preventative measures to be taken, why put yourself through the emotional wringer and run the chance of it hanging over your head for a happy and healthy rest of your life?..

Actually, this would matter to my decision. I try not to control the truly uncontrollable. But if there were concrete steps I could take to avoid developing the cancer... and if I could not/should not take those steps without knowing the test results (like mastectomy), then I might consider getting the test.

But, even 86% chance does not actually say anything about YOUR chance of getting cancer. That statistic means of 100 people carrying the gene, 86 will get the cancer. But there is no way to know whether you will be one of the 86 or one of the lucky 14. Even though the 86% chance makes the statistic feel like a "done deal" it is not. I think that population statistics and risk factors can make things seem like they are predictable in one's own life... but the feeling of certainty created by risk factors is false in some very important ways.

I think we're saying the same thing, in two different ways - so, yes.

 

[AprilBaby]

I guess I feel its a roll of the dice, nothing will change it so keep going and wait to see what the dice deal me. I'm so sorry mlk that you know about this too. I'm so sorry you lost your parents. My mom had breast cancer and my dad had Parkinson's so genetic testing could tell me lots of ways to die. I'm gonna wait and see what gets me first and plan on living to 100!

 

[CJ2008]

I think I would want to know.
I don't do well with lingering doubt/possibility at the back of my mind.
tell me what I have and i'll deal with it......don't leave me guessing.
however, if I had no clue about something, well, don't tell me and get me started worrying about something that may not be.
this is, of course, about health issues!

I'm pretty much in agreement with this.

 

[chrono]

Even if it is incurable, I would want to know. I am the type who overthinks things and not knowing will end up bugging me more over the long term.

 

[tyty333]

Even if it is incurable, I would want to know. I am the type who overthinks things and not knowing will end up bugging me more over the long term.

+1
The not knowing would drive me nuts. It would be better for me to know and live my life accordingly. The answer either way
Would be freeing for me.