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ces
New Member


Date Joined Feb 2005
Total Posts : 5
   Posted 2/27/2005 12:07 PM (GMT -7)   
My name is Carol, I am 45, 6th generation native Californian. I am a caregiver for my husband who suffered a massive stroke at the age of 41. He requires me to be home with him at all times, so I am unable to work.
 
I joined this site to be prepared for what is probably going to be a long upcoming process. I am at very very high risk for developing bc. Although I am cancer free at the moment, it is a concern of mine. For I can not afford to become ill with my needs here at home.
 
I said I was high risk, and yes that is very true. My sister was dx at 27 bc, and at 28 oc, she passed away at 34. That was 20 years ago. My maternal aunt (moms only sibling) died in 2000 of bc.
 
My doc wants me to get the BRCA test. I have yet to find a way to get the test. My insurance (welfare) doesn't cover it, I missed the MYRIAD scholarship, with strictly inforced income limits, by $50 a month, and I certainly can't afford to pay for it living on Social Security Disability.
 
I am currently waiting on the results of a very scarey diagnostic mammogram. I say scarey, as when the technician came back and asked for a second set of films, the machine ran longer on one side than the other. I didn't think to ask her why then. Now I wonder. So I am hoping for the best.
 
 

Tavish
Veteran Member


Date Joined Jul 2003
Total Posts : 2272
   Posted 2/27/2005 12:24 PM (GMT -7)   
Hi Carol, welcome to our corner of the 'net. Sorry you are going through all this right now...surely your plate is full already!

I would consider writing a letter of appeal to the medical plan, and take it to the top. If they choose to deny coverage for this, then they might instead pay for prophylactic surgeries, which would be more costly and certainly less better for you. You may also consider an appeal to Myriad regarding their income limits. One of our members has a website called facingourrisk.org, which is a non-profit group dedicated to those who are high risk for BRCA cancers. You may find some help there.

Regarding the mammogram, keep in mind that something like 80% of breast lumps are benign, so the odds are in your favor. You may also ask for an ultrasound to help get answers, and go from there.

Stick with us, we'll support you wherever we can....

Lori



gma
Veteran Member


Date Joined Jul 2003
Total Posts : 2921
   Posted 2/27/2005 3:53 PM (GMT -7)   
Dear ces, Please accept my thoughts and prayers of deep concern for you. Remember there is always hope. Even with the history and a scarey mammogram, it does not mean any certain diagnosis. I had a scary mammogram eight years ago but the cancer was very early stage and I had a mastectomy and no other treatment. I have not been found to show any signs of cancer again. My daughter was diagnosed six years ago and is doing just as well, altho she did have a series of chemo because of her age. What I am trying to tell you is not to worry until you know what there is to worry about, if anything. God knows you have your hands full with your husband, but I am sure if you need to have some surgery there will be a way found for his care. We are here to support and help in any way we can. Hugs and prayers, Mary K.


MNlady13
Veteran Member


Date Joined Jul 2003
Total Posts : 2044
   Posted 2/27/2005 4:39 PM (GMT -7)   
Welcome, Ces, I am glad Lori mentioned the www.facingourrisk.org web site. I am sure you will find useful information there. Sue has done a wonderful job with FORCE and the web site. Prayers for both you and your DH. You have an awful lot to cope with right now. I hope you have some in-person support. Hugs, Lauri
"Go confidently into the direction of your dreams. Live the life you always imagined" Thoreau
 
Life is not measured by the number of breaths we take, but by the moments that take our breath away.


ces
New Member


Date Joined Feb 2005
Total Posts : 5
   Posted 2/27/2005 5:03 PM (GMT -7)   
I have been to FORCE. It is very well done.

As for not worrying, well that is very hard for me not to do. I don't worry about me though, but about who would care for my husband if I were to need surgery, or became very ill. He requires me for almost anything he does, from bathing to fixing food, getting in and out of bed, getting dressed, etc.

I do believe I would probably push myself to get home so I can be here for him. And probably would fight the docs tooth and nail to get me sent home if I were to end up in the hospital for anything.

I believe I can handle any diagnosis no matter what after the last three years with my husbands problems.

I have educated myself on the BRCA1 gene. And do believe I understand it fairly well. Getting my husband to understand all of it is a different matter. And do believe that if I were tested it probably would be a positive results. I know when my sister was dx she was told by her doctor it was hereditary and to be sure I understood the risk.

I have taken that statement with me since. Education to me is the key. So I tend to dig and find answers even to questions I have and don't have yet.

Ces

Tavish
Veteran Member


Date Joined Jul 2003
Total Posts : 2272
   Posted 2/27/2005 6:54 PM (GMT -7)   
Ces....you have much to be concerned about, no doubt. Worrying will not change the outcome of anything, so please try to take one day at a time. Even if, big IF, there was a cancer, you might be pleasantly surprised at the potential ease of getting through any treatments. True that it is not easy, and some have easier times than others, but nothing is a guarantee. I was lucky enough to have minimal disruption to my routine during my chemo and radiation treatment. I worked full time and had no hospitalization....Putting the cart before the horse may be adding more grief than you need right now.....And just because your sister probably had a BRCA related cancer, I think it is only 50-50 that you too would have the gene.

You are wise to educate and learn, the hard part is keeping it in perspective.

Hugs,
Lori


ces
New Member


Date Joined Feb 2005
Total Posts : 5
   Posted 2/27/2005 7:07 PM (GMT -7)   
I believe you are right Lori, Worry does not help any. But like I said I am not worried about me but about my husband.

I too agree my sister was probably BRCA positive. I only know so much of her information. I know her bc was feeding on estrogen, that is why they did the hysterctomy, it was after that they discovered the oc.

And yes my chances of being BRCA positive are probably 50-50.

But it is because of the 50% chance of being positive I must be proactive in my health. Thus insuring my ability to care for my husband.

Ces

Tavish
Veteran Member


Date Joined Jul 2003
Total Posts : 2272
   Posted 2/27/2005 7:16 PM (GMT -7)   
Yes, yes....being proactive and in charge is a grat way to go....but adding worry will make it harder. Whether worry for your husband or for yourself, it is worry nonetheless. Take each day as it comes and get every follow up test that you can.

Please keep in mind that a cancer diagnosis does not automatically mean hospital stays, does not mean spending days in bed, does not mean inability to care for family....I took a couple days off work for each chemo, but worked from home. I was not incapacitated, and managed my life just the same. Even if there is a cancer diagnosis, there is an excellent chance that you will be able to continue much or most of your current routine.

Keep us posted regarding the mammo.
Lori


Candy
Veteran Member


Date Joined Jul 2003
Total Posts : 1294
   Posted 2/28/2005 5:43 AM (GMT -7)   
Ces,

Sorry about all of your concerns. Stay strong. As Lori said even if it is cancer your life can remain very normal. Please keep us posed. I will have you in my prayers.

Hugs,

Candy

 Perfume and incense bring joy to the heart, and the pleasantness of one's friend springs from his earnest counsel.

Proverbs 27:9


ardee
Veteran Member


Date Joined Sep 2003
Total Posts : 854
   Posted 2/28/2005 2:51 PM (GMT -7)   
Carol,

Welcome to our little corner of the world. I can't offer any ideas, but you will have my prayers.

Hugs,
Rita


Frayda
Regular Member


Date Joined Aug 2003
Total Posts : 248
   Posted 3/3/2005 9:06 AM (GMT -7)   
Hi Carol! I want to add my welcome and 2 cents, too. If your husband is disabled and on public assistance, doesn't he have a case worker assigned? There is care giving assistance available, but the social worker must make the arrangements. There may be assistance for you also, should it be necessary. You need to let social services get involved and let the system work for you. With your family bc history, you are certainly considered high risk, whether or not you take the BRCA test. Even if this episode turns out OK (and I hope it does!) you will need to be followed very carefully in the future. There are special high risk protocols that you should discuss with you doctor. Good luck! Frayda

sdearing
Veteran Member


Date Joined Jul 2003
Total Posts : 700
   Posted 3/3/2005 11:08 AM (GMT -7)   
Carol, not much to add, but wanted you to know you and your DH will be in my prayers. Sounds like you have more than enough to take care of now.

L&H
sara
Sara Dearing
 
Today is a gift, that's why they call it the present!

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