my mom doesn't have me on her family history??

lalalandlisa

My name is Lisa, my mom was diagnosed with ILC invasive breast cancer. she had a double masectomy with a double reconstruction the same day. After her surgery I found out through my not so informed sister it was in her lymphnodes stage 2-3?? and she needs 6 tx chemo/6 radiation. That is it for me being updated on her prognosis. Until I meet this wonderful optimistic woman named Jo from the mamosite.com whom lives in Queenscreek,Arizona near my mother SunLakes AR. I arranged for Jo to call to help me out,she did.

 My moms cancer has spread ,I have NO idea anything else, I found out her surgeon and oncologist name through Jo who has the same Dr. just a MIRACLE which I BELIEVE DOES  HAPPEN. I called the Dr. to see how my mom is doing and to find out about a gene test. I was told I am not on the family history what a heartbreak is that. No info. allowed to her 1st biological daughter.

 Being the first born 50 years old ,2 beautiful teen daughters in calif. We feel WHY -HOW COME? my mom is not a warm person, it is unfair and cruel. My grandmother died of this cancer and my mom is 66 years old. please help me ,if someone can give advice  Do I have any rights?

aching and tears

lisa

lalalandlisa

CarynRose

First, ask your mother what is going on.  Go from there, but with no information, you are going to drive yourself crazy.

Caryn

dlb823

Lisa ~  First, I'm sorry that you're in such an upsetting situation.  I may not have the picture totally clear, but I'm wondering if your Mother just wants some privacy about her situation and the control over who is told when.  Not that she doesn't want you to have the information, but maybe just within a time frame that works for her emotional needs right now, as well as having control over how far the information goes before she's ready for people outside the immediate family to know. Other than my DH, I would not want family members, as much as I love and adore them, having access to my medical files unless I was not competent to make my own decisions.

We all react so differently to this sort of situation, but I would suggest giving your Mother the benefit of the doubt, as well as your continued love and support.  Do you not talk with her regularly?   And have you asked her about her diagnosis and the recommended treatment? 

Just as an aside, my husband's aunt, who is an energenic, youthful 70-ish, was dx'd with bc earlier this year.  She had a lumpectomy before she told anyone, including her 7 grown kids, and we only heard about it after she was finished with radiation.  And we'd had dinner with her the week she'd found out.  She just wanted to get the treatment over with, and didn't want people fussing over her.  I know this isn't the same as a Mother-Daughter relationship, but it's just an example of how we all react differently to these situations.    Deanna

P.S.  Lisa ~ Still thinking about your situation, and just wanted to comment that having someone on your "family history" and giving someone access to your medical records are 2 entirely different things.  You can be noted as a living daughter, for example, in someone's medical records, but that does not automatically give you access to someone's medical records, even when their diagnosis can impact your health.  I just wanted to add this thought because I'm still a bit confused about exactly what you were upset about. 

ElaineD

I'm really sorry to hear that your Mum is excluding you from her life-, the mother/daughter realtionship, as I'm sure you'll appreciate from your own daughters, is so importnat. Forgive me for reading between the lines-but are you concerned that her actions may impact on your ability to be tested for a genetic misprint? I know the processes are often different in the U.K., but I think that you may still be able to be tested, with or without your mother's support. Perhaps if you independently approach a geneticist for an initial consultation then you could take it from there. If this isn't a concern for you, then do forgive me!

Mary22

Lisa, with HIPPA, whether you are listed as a dd, you are not entittled to you mom's medical info. Just as a spouse is not entittled to their spouses medical info.

This is a very difficult time for your mom and she may want to spare you the details. When I first starting going thru all this I did not tell my sister, my MIL or anyone but my DH. I was scared. I did not want to scare my sister who is over 3000 miles away in Ca, she has alot on her plate. So maybe you should not be upset with your mom, it could have been an oversite as well. When I first started seeing the BS and all the onc I shut my DH out, I was so angry that I just wanted to handle everything myself. I did not want others to suffer my pain. I hope my experience will help you to understand your mom's a bit better. Do not feel left out, she may be trying to spare you the worries since a live in a different state. If you want ot have genetic testing done, you can. Go to your family dr. and tell him your family history and ask for a referral to consult w/ a genetic counselor. They will determine based on the info if you qualify for gene test.

Good luck , do not be angry with your mom, this is difficult for her. I understand not knowing is difficult for you, call your mom daily and be supportive.