Adoptees with BC

CharB22 · December 2011

I was adopted 47 years ago. It was a closed adoption but I was very lucky in that my birthmother continued to provide updated medical information to the agency until 1991.

I think that being adopted and being diagnosed with BC can sometimes be challenging -- at least when it comes to filling out all those forms about family history. I've had to write "Unknown" across most of them, which has felt kind of crappy. I also think that the BRCA test should be given at the time of diagnosis. I wish I had that done; maybe that might have changed the treatment plan.

I just wanted to connect with other adoptees to see what type of challenges you've had and just to connect with others like me.

Moderators · December 2011

Hello Char:

What a good idea! Depending on what you want the focus of the thread to be, I can see at least three possible forums that would be good places for you to start a discussion for adoptees who have BC:

Advocacy
Help Me Get Through Treatment
Growing our Friendships After Treatment

Judith and the Mods

CharB22 · December 2011

Thank you Judith and Mods...I hadn't thought of Advocacy. I guess that would be to have more medical records open? I'm lucky in that my birth mother sent updated medical information for herself to the agency until 1991 (I was adopted in 1964). I have no information on my birth father.

I haven't started my treatment yet - I just had lumpectomy and SNB on 12/9. All of the discussions about BRCA genes got me thinking about the difficulty of not having medical information. I think I'll start with Help Me Get Through Treatment.

Thanks again and Merry Christmas!

SpecialK · December 2011

CharB22 - I am also adopted and have wondered for many years about medical history. As soon as my breast surgeon found out that I was adopted he ordered BRCA testing since it would drive decision making between lumpectomy and BMX. I was negative but I did appreciate this information early in the game - I opted for BMX for other reasons but I think us adoptees need to have the genetic testing prior to surgery.

Moderators · December 2011

Let us know if we should move this thread. It is a great topic!

CharB22 · December 2011

Mods -- Moving it to "Help Me Get Through Treatment" would probably be a good idea. Can you move it? Thanks so much!! Merry Christmas.

CharB22 · December 2011

SpecialK - I had my lumpectomy first (on 12/9). I'm getting my BRCA test on 12/30. I'm actually glad I did it ass-backwards -- turns out I've got the dreaded triple negative, more aggressive type. I'm afraid if I waited until I got the results back, it might have spread. As it is I lucked out and there was no lymph node involvement. So...if I'm positive for the BRCA, I'll just have to have another surgery to remove those trouble-makers.

Do you have any medical history at all?

ilovetennis · December 2011

I'm an adoptee from Korea, and since i'm not even 40, i was tested and found out I'm positive for brca2. My reaction is are you kidding me? I still wonder if they got my results mixed up with someone else. I've had chemo and had a bmx last month. Then my BS says maybe that's why I might have been given up and my birth mother is looking down on me. (I have no info on my birth family, nor have I ever wondered or cared). WTF? So annoyed.

SpecialK · December 2011

CharB - I have no info - closed adoption out of Los Angeles County in the 1950's. I only know that I have 2 older half-sisters. Because they did the BRCA on the day I was diagnosed I didn't have to wait very long. Are you haveing chemo adjuvently?

ilovetennis - pretty rash comment by the BS!

CharB22 · December 2011

ilovetennis - your BS said what???? Seriously???? Rude!!!

SpecialK - I meet with my MO on 1/4 and my RO on 1/9 to figure out best treatment plan. My BS told me I'll need chemo because of the TN and anything over 1 cm with that type of cancer gets chemo. My lump was 1.2 cm. I do know that my birthmother never had any other children and no BC - no clue about birthfather - story goes that he took her from NJ to AZ to marry her, then dumped her there with $$ that her dad gave her. (jerk). My maternal grandmother had BC at 42 and died at 45 (in the '50s). So, BRCA test is a must for me. I wish I could have had BRCA done on the day of by dx. I am supposed to have "counseling" first then test; however, I already told the genetics nurse that if I'm postive, I'm cuttin' 'em off and takin' 'em out. I've had my kids and am approaching peri-menopause, I'm fine with it. I think I took her by surprise that I was so definitive in my answer. How did you do on chemo??

SpecialK · December 2011

CharB - Wow, you have a lot of info. My adopted brother did successfully search for his family but it was pretty unsatisfying for him, except for the brother he found that was receptive to getting to know him. His birth mother wanted nothing to do with him and took an enormous amount of information to her grave. If I had been BRCA pos my BS basically told me that I would be doing a BMX. I elected it because I have had 20 years of mammo/ultrasound, sometimes every six months, cyst aspirations, etc. - I didn't want to wait for the other shoe to drop. I have no regrets and you can see in my sig line that I had issues in the "prophy" breast. I had LVI and two positive nodes which were not seen on MRI and surprised my BS. I am Her2+ so I had no choice on chemo either, and I knew that before surgery. I had NS BMX, but had issues with skin healing so I had a lot of surgery prior to chemo. I did OK - it is basically a game of managing the side effects. Do you know what regimen you will be on? Often with trip negs they do chemo first to make sure they have an efficient choice. I did not do any counseling in connection with the BRCA, I guess if it had come back positive they would have recommended it possibly. I have a daughter and son, but the counseling is only of limited use if you are adopted I imagine.

CharB22 · December 2011

SpecialK - I would have loved to have had the BRCA test before my lumpectomy. Now if I'm postive, I'll need another surgery for the BMX - and more missing work, and more recovery time. Ugh. Oh well...can't change the past. No clue about the regimen. I'll know a lot more after the 1/4 MO meeting.

SpecialK · December 2011

charb - I am glad my BS was aggressive on the BRCA, it was a nerve wracking wait and being neg for that was my only piece of decent news in that early phase, especially after finding out about the Her2 and nodes. I had a complete AND and 3 skin surgeries before losing my left tissue expander, which stayed out during chemo - so lots of surgery, and then lopsided and bald was my look! Waiting for answers is tough - I am sorry you are in that part right now. I can tell you that looking back on the last year I am surprised at how slow it seemed during chemo, but in hindsight how fast it went by. My hair is growing back, strength is returning, I have 2 Herceptin infusions remaining and I will have a couple more fills and exchange surgery in the early spring. You will get through this, not fun, but you can do it!

CharB22 · January 2012

I met with the genetic counselor and she thought I had quite a lot of information, even though I didn't think I had much. I told her my decision that if I test positive for both genes, I'm having the DBMX and my ovaries removed. She seemed to think that was a good idea especially because I'm TN. I was able to do a saliva test and I'll have the results back on 1/19.

JJsMominCA · January 2012

CharB22: I just happened upon this board and am so happy to have found it. I was adopted in '56 with my twin sister. I was dx on 10/31 with ER+ (weak), PR-, HER2-, and got final path from Jan.4 lumpectomy telling me I'm not only triple negative, but have metaplastic squamous cell bc, 3.6cm, grade 3, 0/2 nodes, so I'm one of the .1% of cases. Awesome. Before getting final path report, was planning 8 rounds chemo, 35 rads, then tamox. Whole new ball game now. Meet with onc on 1/17 and will ask for BRCA test.

Found birth mothers family, and history of cancer but no breast cancer, but no info on birth father so big question mark there. Like you, if I am BRCA+ I want everything off, out and gone. BMX, ovaries, whatever, I'm 56 and don't need any of them anymore Did not know BRCA could be checked with saliva test, good to know. As they say on the news, "film at 11"

CharB22 · January 2012

JJsMominCA - I met with RO on monday and told him that if I was positive for BRCA mutation, I was having DBMX. He agreed with my decision and said it was a very good one. I won't need radiation then (whew) because I've had no lymph node involvment (yeah).

Like you, I don't know anything about my birth father's history. My birthmother does not/never had cancer of any type. Her sister (my aunt) has multiple myeloma -- some type of blood cancer, but was diagnosed with that 4 years ago at the age of 74.

Patiently waiting on BRCA test results - due back on 1/19.

Lumpynme · January 2012

ilovetennis;

"Then my BS says maybe that's why I might have been given up and my birth mother is looking down on me. (I have no info on my birth family, nor have I ever wondered or cared). WTF? So annoyed."

your BS is stupid! i mean ignorant stupid--how would your birth mother have known about bc to inlfluence giving you up???????????????

sorry-just HAD to post my opinion of this stupid person......whatever reason that caused your mother to give you up i am sure it wasn't bc! bless you!!!!!!!!!!!!

Lumpynme · January 2012

i didn't see this thread before today...hello gals!!!!!!!!!!!

i was adopted at birth in '54--found birthmom in 2000 and bdad in 2001---after dx my mom has called all of her other living kids so they can get checked or at least add to files;theirs and their childrens.

my dad knows of my dx but i have no clue if he shared info with his son--his other daughter we don't know whereabouts.

on my moms side no cancer ever that we know of-well-one grt grandmother died of some stomach ailment in 1895 but we don't know what. i can't find her death info as she died before alabama kept records-don't even know where she is buried....sorry- i love genealoy!

on dad's side his mother died of bladder cancer.

anyhow....glad to meet you all!

Kate60 · January 2012

Why hellooo there.

I too just found this board.

I was adopted 51 years ago. I have since found 2 sisters. One I am very close with, the other not so. There are two other sisters as well but I have not had any contact with them.

The birth mother has also been found, and my close sister has communicated with her. But she is now a religious nutter who is only interested in saving souls and not lives, so she will not part with any sort of medical information or anything at all that refers to her 'dark past.

Anyway, I guess for me as I have been found out to be HER+++ I am getting the most out of treatment possible. I have my first FEC chemo tomorrow. My sister (the one who I get on with) has had a mammogram and she is clear, and now my daughter has a little tiny bit of history she can refer to as she gets older

Bye for now, Kate

Adoptees with BC

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