new dx

 Hello everyone.  I am very glad for this website.  I have a story to tell, if you all wouldn't mind I'd like to share it.  Two weeks ago my twin sister, Lori was dx with tnbc.  She was dx with breast ca two years ago, stopped chemo in Nov. and for six mths all was well until she had a dry cough.  She went to the dr and was admitted to the hospital were it was discovered she had lung ca, there is also a spot on her liver as well as her brain, but they have not determined if the "spots"on the liver and brain are cancer.  Words can not express the sadness we all feel.  My twin is only 32 and has a three year old and a nine year old son.  I know things don't look good, but I can not give up hope.  If anyone out there could give us some advice about the best place to treat tnbc please please share.   Her current dr's are not giving us much hope.  Thank you all for letting me share.  Good luck to all.

Hi, Twin2.  Try posting on the metastasis/recurrence forum too.  There are lots of experienced survivors there who can advise you and give you hope.  It doesn't always happen, but people can live a long time with mets.  Many years.  There was a woman on another met site I visited yesterday who is 7 years out from her diagnosis with metastatic disease.   Several women  who visit this site are going on 4 and 5 years.   If she responds to chemo, this could very well be the case with her.   And new drugs come down the pike all the time.   She needs to buy time, and live fully and well every single day she has.   Make sure to get several opinions, and find out what clinical trials she is eligible for.  Then come back to us (in the met/recur forum) and talk it through as you guys make your decision.  Take your time.

Love,
Denise

Dear twin2,

I am very sorry to hear about your sister's mets....and when I write that, with the printed word as it is, unfortunately, I am VERY VERY sorry..the words cannot coem close to fully expressing the sadness I feel..

I am certain you will get some good advice in the Recurrence/Metastasis section. This is a great site and the women here, who have been through so much, still manage to share their intelligence in a compassionate way..
truly extraordinary..

one of the things that is often missing in the posts is the information about genetic counseling/testing..

ANYONE who is under 35 and has breast cancer needs to be advised to see a Certified Genetic Counselor(CGC) for counseling and testing for the BRCA mutation. My daughter was diagnosed with the BRCA mutation after her dx of breast cancer. I was tested as well.. She inherited the mutation from me.

I know your sister is dealing with a lot but she should get tested and if she is, G-d forbid, BRCA+ you should be tested as well..The test can be a lot less expensive if she is + because they will test you for the same allele.

I don't see a "signature" at the bottom of your post so I don't know if this has been done already but I am always afraid to assume that it has been.

A BRCA+ mutation may impact the type of chemo you get and the surgeries..I know your sister is in a difficult situation already but the information is important to her children as well...

if you haven't been advised to test and want to send me a Private Message
I would be happy to help find a CGC for you..

again, I am truly sorry..

sincerely,

Steve