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Genome Testing and Update on Me

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1659
Joined: Jan 2011

Hello to all my beautiful ladies (and gentlemen)!

I have not been here in while because I have had travels, family emergencies and a lot of work (working late a lot). I wanted to give you an update about me.

I went to the Dominican Republic to visit my family and stayed there for two weeks. My great aunt was dx with bc and I wanted to give her support. She removed her breast and looks like she got clear margins with clear nodes (thank God). Now they are suggesting she takes herceptin and some other chemo drug to lower the chances of it coming back. She is 74 so we might not go for it. Please keep her in your prayers - her name is Ledy.

I also had a good time seeing my family since most of them did not see me after my dx.

I'm scheduled to have a breast MRI in August and a mammo in Oct. (FUN). My Onco follow up visit was good and blood work was good. Thank God.

I'm part of a study at Sloan. They will do what's called genome testing where they will check thousands of my genes simultaneously. There are 4 bins to choose from. I can either know about no bins, some bins or all bins. Bin 1 will give me information about my risks for ALL cancers, as well as pharmaceutical drugs my body can tolerate and how much of it it can (dose levels). This bin will also expose information about diseases I can prevent or help lower my risks for. Bins 2 and 4 relate to diseases I can't do anything about, such as brain diseases.  Bin 4 relates to diseases I carry and can pass on to my children, but I won't develop it myself.

They will contact me on Thursday to find out what I have decided. I think I am going for bins 1 and 4. What would you do?

I see some new people have joined the forum, sadly. I am sorry you are going through this but please know you've come to the right place for support.

I hope everyone else is doing well and living life day by day, to the fullest. I know we will always worry but I pray we all come to a point where we can have more happiness than sadness (and worries).

I will read posts now to see how everyone is doing.

I love you all. And you are always in my prayers.

XOXO

coco2008's picture
coco2008
Posts: 420
Joined: May 2013

I will definitely keep her in prayer.  God can fix things by His will even when it looks like there are no roads available.

I would like to be able to receive results from Bins 1 and 4 myself.  This is a great opportunity for you.  I pray all the results will be favorable for you.

Praying for good results on MRI and mammo.

Take care and God bless.

Sandy

lintx's picture
lintx
Posts: 495
Joined: Sep 2012

 

I think I'm an "all bins" kind of person!  I am very sorry to hear of your Aunt's cancer and glad you could visit with her.  Hugs, Linda

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1659
Joined: Jan 2011

Thank you both for your comments.

I am an "all bins" kind of girl too, but my only concern is my insurance. I forgot to mention, although this information will stay confident (plus my hospital is paying for this test NOT the insurance company), what if I need "follow-up" appts with Drs. due to one of my genes being mutated for let's say...colon cancer? This would mean I need to get checked and I am only 35. Insurance companies may want to know why I am starting to check my colon, suddenly. If I expose the genetic testing I have done, I may get discriminated against. I am worried about that.

The study is: how do people handle receiving such news about their genes. This is a 10-year study and I will be contacted every few months to see if I have made any changes in my life due to these results.

Hugs

Lynne P
Posts: 165
Joined: May 2013

I am so sorry about your Aunt having cancer.  I will be praying for both of you.

Lynne

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1659
Joined: Jan 2011

Thank you for your prayers Lynne. You're all always in my prayers. Hugs.

ComfortablyNumb
Posts: 45
Joined: May 2013

I was also referred to a genetic counselor who wants to do something similar for me. We don't know much about the medical history on my father's side, other than the fact that he passed away at 51 from colon cancer, and that his sister passed away 6 months later from what we believe to be the same type of cancer, so I already know that i'll need to start being screened for that in a few years (i'm 30 now, they are saying that around 35 I should start to be tested)..but i'm very on the fence about how in depth I really want to go with all of the results. It's a slippery slope, there are a lot of "you MAY develop this" and "you MAY be pre-disposed for..", but I have no family history anywhere of BC and I still have it, so how reliable is any of it at the end of the day really?!

 

Either way, i'm sure you'll make the right decision for you, and i'm happy to see you're doing well, even though i'm a noob and I dont think we've officially been introduced :)

 

Kat

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1659
Joined: Jan 2011

It is a pleasure to meet you and I am sorry you had to deal with this too. Out of curiosity, where do you live? I am from NY.

I too don't know my father's history except I know they suffer from heart (my little brother who is 24 now has already been hospitalized twice for his heart). And I have a heart murmur.

I think I still want to know about risks for cancers because I have a strong family history (of breast cancer and ovarian cancer). I was dx at 32, pretty young for this as YOU ARE. I want to know if my genes had anything to do with this. UGH. It is overwhelming to get all this information though, isn't it?

When are you doing the test? Where? Have you decided yet what you want to know? Have you done BRCA and Bart tests?

How far along are you with your treatments? I wish you the best of luck with everything.

 

XOXO

ComfortablyNumb
Posts: 45
Joined: May 2013

I'm actually Canadian, being treated at the Jewish General in Montreal. I'm thankful that I don't have to deal with the insurance aspect of it, it must be so difficult and frustrating to have to navigate that on top of dealing with this awful disease! 

I haven't yet decided how much I want to know, part of me does want all the information because there have always been so many unanswered questions about the medical history on my fathers side, but i'm afraid if I find out too much I might make decisions based on fear of what's possible. I have been tested for the BRCA gene, but I haven't heard back on results yet. I'm told there's a very low chance (about 2%) that I have it, since no one on either side of my immediate family has had any form of cancer other than colon...but then again, I was told there was a very low chance that I had cancer in the first place, so I tend to wait until I have proof now before assuming anything :)

As far as treatment, i'm currently 3 rounds into my first go at chemo (12x weekly Taxol, but i've been off for two weeks due to pneumonia)

 

Kat

VickiSam's picture
VickiSam
Posts: 8772
Joined: Aug 2009

So nice to hear from you again.  I love that you are 'Thriving and Surviving' after your battle with breast cancer.  I am sure 1 year ago, it was impossible to imagine that you would be living your new 'Normal' .. but, here you are.   I am so thrilled for YOU.

I am sorry to hear about your Aunt -- prayers, and positive thoughts for her.

I will be thinking of you and keeping you in good thoughts as you go in for mammo -- .  Please update us when possible.

Strength, Courage and HOPE for a Cure.

Vicki Sam

 

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1659
Joined: Jan 2011

Hi Vicki! Thank you for your sweet comments.

You're right, a year ago I thought this would be impossible. The fear is still there. But I know this is part of my new normal. I do realize I have to live my life as long as I feel good and Doctors keep saying I am OK. We don't know the future but we have today.

I will let you know how my MRI and mammo goes.

Hope you're doing well and feeling great.

I miss coming here...

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