I'm Starting to Crumble

[Debra]

Hi All -

They called today to schedule an appt. for me to come in for my genetic test results. They told me they always schedule appts. for the results so that was not suprising. However, THEY TOLD ME TO BRING SOMEONE WITH ME. Is that normal. I am really freaking out over this. I don't share my feelings a whole lot with anyone as I don't want family to worry but today, I feel like I am losing it and this is unlike me. Not only the genetic testing but today is two years since diagnosis, now my genetic results coming up and of course today, I don't feel well so I feel like this nightmare is starting all over again and I don't know why----I have no other reason to think that it's back. I have been so strong but today, I feel like I am starting to lose it and this is surprising me.
I don't even know why I am posting this but I feel like you all are the only ones who ever understand these awful, overwhelming feelings of fear so I guess I am just leaning on you all tonight as if you were here with me!

I apologize if this sounds so minor as I have done pretty well throughout this whole ordeal and I know many of you are battling more serious health issues due to this beast. I guess I am just surprising myself today because I feel so weak and defenseless----that is the only way I can explain it. Shouldn't I be happy I am two years out? Why am I all of a sudden worried about the genetic results? I haven't even thought about it since I had the blood drawn.
Anyhow, thanks for letting me vent.

[Mary Anne in TX]

Debra, no issue is too little to shake us up! New information seems to rattle us even when we're doing great! I found from my experience that the peope who call to tell us that stuff are using robots in white and don't have any sense of what we interpret this to be! It happened to me when I had a mass. a few months ago. They gave me the pat call and scared me silly! It was nothing, but I still got the "one flavor for everyone call"!
Take a deep breath and trust in your good health til they tell you something different! Bet you got one of those one flavor for everyone call too! But I totally understand! Please let us know what they say! We'll be worrying and praying along with you! Best wishes for GREAT Health! mary anne

[janet/FL]

Debra,
I am sure someone can correct me if I am wrong, but the results of the genetic tests would not indicate whether or not you have cancer or any reoccurance. Just whether or not it might have an hereditary basis. That can be scary enough and you may want to take an audio recorder along as well as a friend or family member so that you can make sure you understand and remember what they tell you.
I sure know the scary feeling.

Hugs, and take a deep breath
Oh, and don't forget to let it out!

[Gerri]

Debra,

I had genetic testing done in September and will be getting my results on November 26. The letter I got before hand recommended bringing someone to the initial appointment, as well as the follow up appointment to receive the results - it looks that this is standard operating procedure.

Good luck and try not to worry too much.

[DonnaD]

Debra,
It is important to share your feelings here. We understand and lean on us! It is normal to have moments of doubt. I have them alot. Trying to get better, but I can't seem to turn off that little voice at times.

I agree with Janet/FL. I don't think this means cancer reoccurance.

Concentrate on your good health. Remember how far you have come in two years.

Donna

[SoCalGal]

I had the gene test done. They would not even give me the results without me scheduling a big follow up appointment. I had my oncologist call to get the results - I don't have a lot of extra time for crap like meetings - I really don't need more docs in my life, either.

If I were in your shoes, I'd have my onc deal with it. They are supposed to be the big kahuna's - the big case managers.

IF you are brca positive, you will have to speak with the onc anyhow, to see if there's anything special to be done. (You can remove more parts, I presume, as a preventative, but nothing life threatening if you are brca+, you'll have time to research and make decisions). If you are negative, you don't need a big meeting with the genetic counselor. Just my opinion. Don't let them mess with your mind
xo Flori

[Soccermom]

Debra,
I am heartened for you that they asked you to come in and that they told you to bring someone. This means 2 things to me...1) you are not just a # and 2) you will have everything explained to you in detail. THIS IS A GOOD THING!
The results from any testing are not always so cut and dried and its always the prudent thing to have a second set of ears for this sort of thing. A positive test has NOTHING to do with having cancer,now!
Remember that you have a 50% chance of a negative test. You still will need to stay vigilant as you have already "walked the walk", but you would be able to forgo the other prophylactic procedures that might have been recommended had you tested +.
Please let me know if you need other help...I am an outreach coordinator for FORCE.. (facingourrisk.org) for those who are high risk... facing genetic testing or who have already tested. I have been through the process also.

Warmly,Marcia

[Becky]

Dear Debra

It was standard protocol at my cancer center for you to bring someone with you on the day the genetic counselor gives you your results. Usually your doctor is also present (or one from the practice). This is because the results are sealed and the counselor does not know your results. Therefore, if you are positive you need 2 things:

someone to be with you and a doctor to tell you medical options (ie: getting ovaries and/or breasts removed etc).

I would not worry about the request for someone to be present with you.

Big hug

[Debra]

Thank you everyone for your replies. I have settled down some since I posted but still overwhelmed with fear regarding my genetic results. I know it doesn't change my outcome at all or does it mean my cancer may be back-----it's my kids. I am scared to death I may have to tell my kids I carry the gene. My son actually checked the answer machine with the message "we have your results and you need to call back for appt." So of course he was questioning me already when I didn't want them to know yet I was even having it done.
Today was just a combo of not feeling well (low back pain, dizzy etc) which put negative thoughts in my head and then having to schedule this appt. so that is why I am feeling this fear all over again. I think what bothers me most is I have dealt with the cancer for two years now but now I may have to deal with the fact that I may have passed this gene on to my kids.

You all have been such a support system for me. I don't post many new threads myself and often never have great info to offer others but I have learned more from everyone here then my own doctors! There is so much comfort in knowing others really know how I feel. I can't get that anywhere else.

To "soccermom", I will be checking out that site. Thank you.

[mimiflower07]

debra...thinking about you. you are not alone!
suzanne