Question/ sister now diagnosed
 

Hello everyone~ I wish I had better news to share but my older sister (49) has been diagnosed with breast cancer. How many of you have had this happen? I was 36 when I was diagnosed and the first in my family on both sides going back generations. At the time 9 years ago, I didn't fall into the genetic testing % where insurance would cover it. My sis had been watched very closely at the Mayo clinic but sneaky little tumor was hiding behind a Benine cyst. My poor Mom is struggling so badly. How many of you have had genetic testing? What should I ask for? I'm going in Tuesday for the BRCA analysis but is there another test out there? Her tumor make-up is completely different than mine (Er/pr 90%, Her2neg) but I guess it doesn't matter if its genetic? Lani any thoughts? I have a now 10 year old daughter and I am so scared for her. I am also scared I need to have my remaining breast removed and ovaries out. Just when I'm about to reach my 10 year mark and can finally get decent health ins (I'm self employed) .... Oh well this is life! Thank you all
Ruth

Re: Question/ sister now diagnosed
 

Dear Ruth

I am so sorry about your sister. I was the first in my generation to have bc but my mom had 2 sisters who had it.

When I was diagnosed, 4 AC followed by 4 taxol was the gold standard chemo. I just finished my 4 AC when my mom had a positive biopsy for bc (highly hormone positive, Her2 neg. Tumor was less than 6mm so just lumpectomy and radiation).

I had genetic testing which was negative.

In October 2010, my youngest sister was diagnosed with high grade dcis. They do not test dcis for Her2 but her dcis was highly hormone positive (my cancer was moderate for ER only - PR neg and of course highly Her2). She had lumpectomy and radiation. She went on Tamoxifen (my mom went on Arimidex) but my sis had to go off as she developed blood clots - ugh. She is comtemplating oophorectomy.

My sister had genetic testing too which was negative.

I had ooph straight upfront 7 years ago because being moderately ER+ but PR neg and Her2+ tends to mean that tamoxifen may not work well. Ooph in a general population is known to reduce breast cancer risk and does reduce breast cancer risk in the BRCA+ population (a population that's bc is overwhelmingly triple negative).

Obviously my other sister is diligent and gets a mammo and then six months later an MRI.


Let your sister get tested and see what her results are and then go from there. Do not worry about what hasn't happened yet. Everyday has its own trials and tribulations.

Re: Question/ sister now diagnosed
 

Ruth - i am so sorry about your sister
I just wanted to let you know that i am looking into genetic testing (i am in canada and just finished the application process). I did see a genetics counsellor and thought i would share what she said and what i have read. If BC occurs pre-menopausallly and before age 45 they like to test solely on age. You were diagnosed at 36 which is quite young for BC - this coupled with your sisters recent diagnosis should be enough to get tested (insurance approval i would guess since you are in the states). Also er- cancers are more likely to be hereditary than er+. I would push for testing for yourself and for your daughter. If you do test positive then they will recommend removing the other breast and ovaries and possibly a hysterectomy. Your daughter would also be tested, knowledge is power and the advantage is she would be screened earlier and more intensely (mri's instead of just mammos)

Re: Question/ sister now diagnosed
 

Ruth I just wanted to let you know I'm sorry for your sisters dx but she's fortunate in having you to advise her, I had an ooph after my treatment as a preventative but have'nt had the genetic test.

Re: Question/ sister now diagnosed
 

I too am so sorry about your Sister! I agree with Roz. I do believe you will be approved now. I was 48 and premen. Just my Dad as far as we know has cancer (lung in remiss.). They did the Braca tests and I was neg. I fear also for my Daughter who just turned 28 and has had her 1st mammo. because of me. Gods blessings to you and your Sister. Please know that I will be praying for your family.

Re: Question/ sister now diagnosed
 

Ruth,

So sorry that your sister has been diagnosed.

I was lucky that I was supported with BRCA1&2, BRCA large rearrangement and TOP2A testing. I tested negative for everything. I still have a history of breast cancer for generations on my mother's side.

I just read "The China Study" which proposes that cancer forms when a society eats a large amount of animal proteins. I'm thinking of going vegetarian (mostly).

I hear your anxiety. I feel a little nervous about keeping some of my other parts, breasts, ovaries, etc.

Re: Question/ sister now diagnosed
 

Thank you all for your support! The genetic counseling was interesting and I hate to admit terrifying but I'm glad that I've done it and I will hope for the best.It's been close to 10 years since my diagnosis and honestly I thought that I had my nerves and fears behind me but with my sisters diagnosis I had the intense feeling as if I was diagnosed all over again. It's very hard to explain but the pain and fear came rushing back and looking at my 10 year old daughter and it just took me to a bad place of "scared @$&$less" I already worried for years of me leaving her early and now understanding the increased percentage that she could go through all I have it (and now my sister) just wasn't good. But I feel much now. The genetic testing is so expensive- $3,750! I have a super high deductible so it was a little bit of a shock to find out how expensive it is. I also found out that even though I was ER/PR negative that if I end up being BRCA positive I should have been taking Tamoxifen. I didn't know that nor was I on it. Oh well!


I know many of you have been concerned for Chelee. I have called her home and left messages. She never wanted to post if things were not going well and I suspect that is the main reason she hasn't been on here. She is immensely private and I'm sorry that I won't give any of her personal information out. She is very dear to me and I hope that everyone that was touched by her to pray for her.


Thank you all again!
Hugs~ Ruth

Re: Question/ sister now diagnosed
 

So sorry to hear about your sister. I, too, am the only one in my family to ever have had cancer. I had genetic testing and was BRCA2+. I have shared this info with my sister, she does not want to "hear it". I do worry for her, yet it is in her hands...

Re: Question/ sister now diagnosed
 

Since my recent news of metastasis, I discussed this testing with my oncologist. I was pretty much in shock after getting my mets diagnosis so I have no ideas if I comprehended anything that day.

I too have two daughters, now 21 and 27 years old, so I've decided to get tested, and I'm currently waiting on my results. When I was originally diagnosed in 2006, I decided to hold off on this test because my daughters were so young and had a very remote risk of getting breast cancer for some years.

If I understood my doctor correctly ?????
Regardless if your mother has been diagnosed with breast cancer or not, If your mother is still alive, that is the person that should be tested first.
If your mother is negative, it is not necessary for you or your daughters to be tested.
If your mother is positive, then you have a 50% chance of having the gene.
If you are negative, it is not necessary for your daughters to be tested.
If you are positive, each of your daughters have a 50% chance of having the gene.
Not all breast cancers are a result of being positive for this gene.
Only are small percentage of the general breast cancer's population cancer are positive for the BRCA genes.
And if I don't have any of this correct, please let us know. THANK YOU!

My mother was diagnosed with Stage IV breast cancer (it was everywhere in her bones) in 1994 and she passed in 1996. Since she refused chemo and radiation other than Tamoxifen, and me not having any knowledge about cancer, I never asked any questions about the type.... I only knew she was hormone positive (being on Tamoxifen). My doctors advised that your BC tumor is kept for 7 years in case further testing or re-testing is needed, but I'm not sure that it is preserved for all patients or in certain cases.
If anyone know, please advise. THANKS!

Re: Question/ sister now diagnosed
 

RUTH,
Just my opinion: If you daughter is only 10 years old, I wouldn't be immediately concerned with testing her now. Medical Science will have more research results and many more advances, including different tests in future years. By the time your daughter is at risk, in her 20s or 30s, science will have more tests, possibly vaccines, and perhaps a BC cure by then.

My heart goes out to you Ruth! I will add your sister to my prayers. Take care and be strong for her. Hugs!

Re: Question/ sister now diagnosed
 

Joanne - thank you so much for your kind words. I won't have Emma tested for a long, long time regardless of what my results are. They told me as much at Oncologists office that she is way too young and the knowledge of different types of testing is growing yearly. We don't know what they can learn in 10-15 years from now. From what I understood from the genetic counselor was that my Mom or Dad could be the carrier of the BRCA gene and actually my two boys can be tested for it should I be positive (still no results yet). We have no plans for that either since it really depends on my sisters and my own results on where to go from there. The great news is my sisters tumor ended up being tubular carcinoma and from what I understand it is the slowest and most non-aggressive type of BC. Of course totally different than us Her2 ladies and gents. Weird how two sisters can have 180 degree different types of BC. But since both of us were under 50 when diagnosed the risk is greater for a genetic match.Again, thank you so much for responding to my worries. I will update when I know more. All of you are such wonderful supportive people and we are truly blessed to have this support group to come to.
Xoxox, Ruth

Re: Question/ sister now diagnosed
 

Dear Ruth -
Sorry to hear about your sister. We have other sisters here. Sheila's sister was diagnosed last winter, and their mother also had breast cancer.

There are others, just not on the top of my head.

Want to especially thank you for mentioning Chelee, as I have been worrying about her again lately. I hope you will let us know of any changes you learn about.

Re: Question/ sister now diagnosed
 

First of all I am very sorry Ruth to hear of your older sister's diagnosis. Sheila is my Mom she has battled this disease for a decade and as Steph pointed out her Mom had BC and her little sister was diagnosed with BC about a year ago. They all had different types of BC. My Grandma (Sheila's Mom) had a mastectomy (no reconstruction) took tomixifen and or noveldex (not sure if my spelling is correct) and was cancer free for a long time she did die from cancer but it was unrelated to the BC she had years before. I don't believe that Grandma or aunt had her2+ cancer (Mom can correct me if I am wrong and SHE WILL) So here I am with my families history knowing there is nothing I or anyone can do to change my genetic makeup. All I know is this disease does not discrimate as cancer does not have a conscience. I will pray for you and your sister and your family because it is in God's hands not ours unfotuntaely..

Re: Question/ sister now diagnosed
 

Ruth, I am so sorry about your sister .Please let her and Chelee know that they and their families are in my thoughts and prayers.

Jen, Like Mother like Daughter! Always willing to help others!
I am honored to know you both. peace, Nancy