Community Chat

[wagirl]

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@Brinklii wrote:

@wagirl ... It is nice to hear that you are a breast cancer survivor! I'm trying not to get too freaked out about the results I got from promethease. Unfortunately, I think they are a very legitimate site that is doing medical research. They were spot on with a couple other things that run in our family.

Keeping my fingers crossed until I hear the final word from the doctor.

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brinklii--I'm very glad you are going to a doctor about this. That is the most  important part. You are keeping on top of your health knowing your family history. And anything you can do to prevent any horrible disease from getting a foothold, is a victory. Hope you will let us know what you find out.

[Moonchilde]

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@The Monkey on My Back wrote:

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@Brinklii wrote:

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@The Monkey on My Back ... I did the USA version of the 23andme test. In addition to my ethnicity, I was negative for all the diseases you listed above. Once I got the results, I submitted the "raw data" page to promethease(dot)com. They want people's data for their research purposes. They only charge $5 to collect your data and have it analyzed by their computer. In return they send you a breakdown of each gene and tell you what you are at high risk for. They told me that I carry the mutated BRCA2 gene. So...I will see my doctor about this since my mother and aunt both are breast cancer survivors.

The report from Promethease also indicated a higher than normal risk for pancreatic cancer (which my youngest aunt died from at age 62) and several genes showed pootential cardiac disease problems...which definitely runs in our family.

Promethease's report is extremely technical and comprehensive. Apparently, it is thousands of pages long. There is a summary page though, and there is also a way to search for information. I have not been through it extensively yet. The BRCA2  gene mutation was at the top of my first page, because I carry an extremely high chance of getting cancer from it. I rated 6 out of a possible 6 in magnitude on that gene. Needless to say, I won't waste any time talking to my doctor and a genetic counsellor about further testing.

I'd say Promethease's test are a good thing to do if you can psychologically handle the prospective results. I consider it a screen...and now I will have professional testing.

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Ah, okay. So this is a different company. Interesting. So 23andme found a way to get around the FDA "marketing" restriction by utilizing another company (or maybe a subsidiary of their company under another name).

To clarify Promethease is a "literature retrieval system that builds a personal DNA report based on connecting a file of DNA genotypes to the scientific findings cited in SNPedia."

They do not test DNA. 

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Just FYI, data from Ancestrydotcom and FTDNA is also sent to Promethease by people who have bought their DNA testing. Nothing to do with 23andme exclusively. I actually learned about it (though I have no interest in it) from FTDNA.

[Annabellethecat66]

Well......I actually sat here and read everyone's post.  That's a big deal for me because I have a very short attention span.  I was curious.

Basically, what I gather mainly is that the OP knew she had a history of breast cancer in her family and she needed to be tested (by her own Dr periodically.....which she is and has been), that's also a good thing.

I, personally would not do DNA testing for a number of reasons, the main one being that I'm 70 years old and what time I have here, I don't want to worry about what I'd find out and couldn't do anything about.  The fact is that as you get old(er) the body breaks down...period.

I am lucky in that I have no history of cancer in my family.  Everyone has died from different things and the women have lived to be very, very old (my great grandmother was 115 years old when she died), she was a Cherokee Indian.  Both grandmothers were almost 100 years old.  So....I'm not concerned. 

My late husband worked out every day and was in amazing shape.  He used to tell me I was going to die because I didn't work out every day.  He dropped dead at the age of 58 in front of me and an autopsy couldn't tell us why.  My brother's girlfriend was in her early 50'a and died while driving him in the car (he pulled the car over and she was gone).  I don't know what she died from.

The point is if you trust your Drs and get the tests done that can give you results (i.e. colonoscopy, ,mammogram,  etc), in my opinion, I think that's good.  In the OP's case it made sense to go further into it, but I wouldn't do DNA because I personally think it's not accurate.....it's just my opinion.

My daughter followed my late husband's ancestry back to the 1400's....he has an entire town named after him and his family in the US,  schools, etc.  That was easy for her.  

My last name is very popular so it's not so easy.  Doesn't bother me.  

I think it's nice that the OP posted here what she found out.  I know people are always talking about "over sharing".  I hate those words.

Telling others things in ones life (whatever it is) can make a difference in someone else's life.  It's all anonymous, so why not post things that could help someone think...."wow!  I thought I was the only one....maybe (it's) not so bad".

That's how I look at posting here.  Besides if someone doesn't want to read a post, no one is holding their head to the computer to make them read it.  I say, "JUST MOVE ON", then.

You've seen me post it before but maybe it needs repeating, "my dear old grandma that raised me used to tell me all of the time that my worrying about many things before they happened meant I was 'borrowing trouble'.

The OP is doing everything right so I don't see what the problem is.  I also don't see anything wrong with other posters questioning the results.

I the the people questioning the results (for the most part) did an excellent job of questioning the results while not being mean or rude.  

Not taking everything at face value has it's good qualities too.

Not that it matters to anyone but I think all of you have done an excellent job of discussing something many people are looking in to.  Annabelle.

[CLEM]

I have been thinking to have my DNA checked but only to see about ancestry.  I know exactly what my background is because I am from Germany and when my parents got married in 1939 they each has to document their ancestry for several generations back.  Basically what I am curious about is how accurate these people are and if they are on the up and up. 

So I may do that sometime.

[LTT1]

A good friend was having health concerns regarding her kidney function. Her doctor ordered genetics testing (apparently due to rarity of the disease). She was found to be at high risk for kidney/liver/colon cancer.

Her two sons she felt like might need/want to be tested -- at least they should have the option of knowing.

She said one had health insurance but the other one did not. 

So her quandary had to do with the fact that he might have to pay $3500 out of his own pocket.

She is the type who wants to know the "just in case" scenarios.

[Moonchilde]

@CLEM, that is the reason I have taken the tests. Just really wanted to know if the family info and stories were true. 90% they were; my ancestry has closely matched what I was told and what I knew from my own research on Ancestry in two of three tests, and two of the three also agreed with each other. I'm waiting for my third (company) results any time now and not expecting any surprises - but to me, that's good. It just further verifies the accuracy.

[Flady1]

Hi Brinklii,

Having gotten the results of your genetic testing is a blessing.  You now know what the possibilities are, and can prevent or prepare for them.  I was lucky, I had a breast reduction and they found Stage 0 breast cancer.  I was told that it wouldn't have been found for 2 years, and by then it would have been advanced.  I was age 59!  My mother also had breast cancer 3 times, but I didn't test positive for the BRCA gene after this all happened.  I had my DNA tested at 23 and me recently, and plan on submitting it to Prometheus, after all I've read here!  Thank you all for the information about Prometheus!!!!  And, whatever you do, get at least 3 opinions, do a lot of research, and you are lucky that you have your mother and sister to guide you!!! ✨🙏✨

[Yardlie]

@Flady1 ... Oh, I am so happy that your breast cancer was found so early...and during a breast reduction yet. Wow...what were the chances of that?! I have always wanted a breast reduction as I am very tiny boned and small on the bottom, but have large breasts...so if it should turn out that I need mastectomies, if really would not bother me.

I hope you do submit your DNA results to Promethease. There is another one also called Self Decode Gene Analysis (cost $10). I'm going to submit my results to them also...maybe today. I want to see how they match up with Promethease. I am on vacation next week, but when I return, I will be seeing a doctor regarding my results.

Good luck with your test results. 23andme does a great job on their own (as does the more extensive Ancestry test), but the information you get from these gene analysis sites like Promethease and SelfDecode may be invaluable. It will be especially fascinating to see how accurate they are. So far, they have highlighted all the major medical issues that affect our family.

[Yardlie]

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@Moonchilde wrote:

@CLEM, that is the reason I have taken the tests. Just really wanted to know if the family info and stories were true. 90% they were; my ancestry has closely matched what I was told and what I knew from my own research on Ancestry in two of three tests, and two of the three also agreed with each other. I'm waiting for my third (company) results any time now and not expecting any surprises - but to me, that's good. It just further verifies the accuracy.

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@Moonchide ...Please do post your findings about how the various companies test results match up once you get your results. I'm sure many of us would be interested.

[Yardlie]

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@LTT1 wrote:

A good friend was having health concerns regarding her kidney function. Her doctor ordered genetics testing (apparently due to rarity of the disease). She was found to be at high risk for kidney/liver/colon cancer.

Her two sons she felt like might need/want to be tested -- at least they should have the option of knowing.

She said one had health insurance but the other one did not. 

So her quandary had to do with the fact that he might have to pay $3500 out of his own pocket.

She is the type who wants to know the "just in case" scenarios.

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@LTT1 ... I think that when a parent finds out that they are high risk for cancers, their children's insurance should pay for the genetic testing. I know that is not always the case...at least at this point. In the long run, it would probably cost the insurance companies less. Also, I believe as genetic testing becomes more common, the cost will go down. Eventually, we'll probably be able to go into the Dollar Tree and buy these tests just like they have pregnancy tests and drug tests.

Right now Medicare only covers genetic testing IF you have had cancer yourself. I have a Medicare Advantage plan, and I do not know if they cover genetic testing or not...probably not. However, I could get my mother and aunt tested, as they have both had breast cancer. That way I would know if I have inherited the BRCA2 gene from them. I don't know of any breast cancer on my dad's side of the family.