Aunt just diagnosed, now what?

[bejuce]

I just found out that my maternal aunt, my mother's younger sister who is her 60s, has been diagnosed with IDC (Er+, PR-, not sure of her HER-2 status yet). I don't know many details, except that she's had surgery (a lumpectomy), is doing chemo, and will do radiation next. Now we officially have a family history starting. My dad told me that my maternal grandmother also had a niece that had breast cancer and a male relative with prostate cancer, which is news to me.

I felt horrible when I learned of her diagnosis because one of the first things that came to my mind was an emotional reaction of "see, there's a family history, now you know the cause". I know the thought should not have even crossed my mind, but I felt vindicated somehow that perhaps there's something in our genes after all and I don't have to blame my cancer on stress/diet/having kids after 30, living in the Bay Area, and so on (silly, I know).

In any case, I'm concerned as to what this will mean for my daughters, my sister, and mom (who is now 73). My sister especially is freaking out - she's 36 and pregnant with her 2nd, and already said that she will have her breasts removed next year as she's convinced she's next. I don't have the BRCA mutation, but do have a "variant of unknown significance, favors polymorphism".

So now I'm wondering if I should do anything more drastic with my treatment (which has already been pretty strong given my tumor) and remove my ovaries or opt for the Lupron/Zoladex shots.

Any thoughts?

Thanks!!!

Marcia

[flynny]

Marcia,

Praying for your aunt and hoping she will recover quickly. No one knows where their paths will lead them. All we can do is hope and pray! Big love to you.

[ElaineM]

I am sorry about your aunt. You can be a great support to her, because you have "been there and done that".
I hope there is not a common genetic reason many family members developed cancer.
I think scientists and doctors still have much to learn about the causes of cancer. There may be other genetic reasons still unknown. Diet, lifestyle (I. E. smoking etc.) and enviroment can also contribute to the development of cancer. Sometimes there may be a combination of things that contribute to a person's cancer diagnosis.
However, scientists are also learning about "Cancer Clusters". That means that a significant number of people in an area develop the same kind of cancer. Various environmental factors may cause this. Did the people in your family who developed breast and prostrate cancer live in the same general area of the country? It might be a good time to do a little research on your family tree. In any case I wish you all good health. Take good care of yourselves.

[Jackie07]

Marcia,

I have experienced the same thing - finding out more family members/relatives being diagnosed with cancer after my own cancer treatment.

All my illnesses had been attributed to my being born premature, not following regular sleep pattern, not eating balanced meal, not getting enough rest, ... until my Mother was diagnosed with Non-Hodgkins Lymphoma. After my 2nd Brother (the healthiest member of the family and the one who had criticized me the most - he thought his baby sister was just trying to get attention) was treated for colon cancer, I requested for a hysterectomy/oophorectomy and felt like I have dodged a bullet at least for now.

The three of us were born and raised in different environment: Mother in the beautigul, clean, high altitude Yunan (China); 2nd Brother (10 years of my senior) in a suburb by the Taipei river and went to military academy when he was 15. I was born in a different suburb and then grew up in a neighborhood on the hillside shadowed by the bamboo trees.

I found the cluster called HNPCC which seems to explain the cancer incidents in our family. By the way, Marcia, I also have a BRCA1-variant of unknown significance - except that in our family, the significance seems to be 'well-known' now.

So now I regain my 'perfect child' status! :)

Your family members might want to consider getting tested. The information I read on the HNPCC sites states that since there's still so much 'unknown' out there in the genetic field, even if one's test result doesn't show the 'link', a strong family cancer history still makes one at 'high risk'. At any rate, all this information helps everyone to keep a watchful eye on their health.

It is indeed a very mixed, complex feeling. On the one hand, we really don't want to wish any illness on our family/relatives. On the other hand, we can't help feeling 'vindicated' that we did not bring this on ourselves.

[Colleen007]

I also think there is something genetic in my family...just can't figure out what it is. My maternal grandmother had breast cancer, I have breast cancer and my maternal aunt (daughter of my maternal grandmother) had it. We don't know if my grandmother was ER/PR or Her2+, but my Aunt is triple negative. I tested negative for BRCA1 & BRCA2, as did my mother...but my aunt (my mother's sister) just tested positive for BRCA1.

If your aunt was just diagnosed with breast cancer, it might make sense for you to get the BRCA testing done...as you can see from my family's history, just because one family member tests positive for the gene, it doesn't mean that all of you carry the mutation.

Good luck and keep us posted.

Colleen

[Becky]

I am BRCA 1 & 2 "no mutations found". My mom had bc (high ER & PR, not her2), she had 2 sisters with bc and I have a cousin (same side but from one of my mom's sister who has NOT had bc). As you all know, my sister was just diagnosed with dcis (she has her lumpectomy on Thursday, Sept 2 and we are all hoping that the final pathology keeps it at dcis and that they don't find some small invasive component. We don't know much about her dcis but we do know its hormone positive and more testing will be done once it is removed and they have more to work with).

We could be positive for a yet to be discovered BRCA gene (3, 4, 5...) or a combo of other genes that cause a weakness when exposed to certain environmental factors (both are family related because for the formative years, you live together, eat the same things and share alot of the same genes etc).

Who knows? It is scarier when more relatives begin to get diagnosed, that's for sure. I was diagnosed before my mom and sister so I did not think about genetics too much but it is all genetics in a way or the way your genes interact with the environment. Stay diligent and give others support.

[bejuce]

Thank you all for your support! My aunt lives in a remote town in Brazil and I'm not even sure if she'll have access to a genetic test there. Even if she does, she'll have to pay for it out of pocket at a prohibitive cost.

My parents are going to visit her soon and I'll learn more details then. I feel specially vulnerable today, after learning that two young women in my local support group passed away last night.

I know I need to stay hopeful as much as I can, but today's been hard. I'm so glad to be a part of this community where I know I'll always have a shoulder to lean on.

Thank you all for taking the time to respond!

Marcia

[Jean]

Is it any wonder you are feeling vulnerable with all the sad news coming your way.

So sorry to hear about your Aunt - and then the two young women.

Not easy - hoping tomorrow you will feel better.
Keep in mind you are doing everything you can to remain healthy.

Sending you strength and best wishes,
Jean

[ElaineM]

I think it is quite possible that there are genetic variations of the original BRCA 1 and 2. Families and different generations of families move around the globe. They can be affected by environmental factors, different diets, different lifestyles, marriage to people of other ethnic groups etc. etc. All of these things and other possible factors can result in many variations of BRCA 1 &2.
My paternal cousin passed away from breast cancer. I am BRCA 1 & 2 negative, but I am not sure what she was. There have been other kinds of cancer diagnosed in my generation, but previous generations did not experience cancer as far as I know.

[Soccermom]

Marcia,
I am so sorry for your aunties diagnosis and the loss of your dear friends.

Like Becky I am BRCA 1& 2 negative with significant (mom and 3 aunts & 2 cousins ) family history of BC. I would suggest that you contact Myriad and speak with one of their genetics counselors.You may want to ask if the status of your variant has been reclassified as deleterious or not. Just to be on the safe side. Also I can see what i can find out for you about the availability of genetic testing, (perhaps in the research setting) may be possible in S.America.
I understand you and your familys' concerns,
Warmly,another Marcia

http://www.bracnow.com/understanding-my-results/uncertain-do-now.htm

for more information on BRCA
http://www.facingourrisk.org/

[joletta]

Hi Bejuice,
So sorry to hear abot your aunt dx. I have had my mom pass away from breast cancer at age 58 her 2 pos. I had an aunt have an early diagnose over 10 years ago. and 2 nd cousins w/her 2 breast cancer one here today one not. (both my mom & coisin were dx stage 4 and I think they missed a lot of mamograms. I had been asking to recieve a mamogram since age 28 every year repoutiosly since my mom passed, ..however I was denied recieving one told I was not @ risk untill age 45 ten yrs before my mom was dx. I continuaded to be pesistant at age 35 6 weeks after my daughter was born the dr said she felt milk in my ducts ( I never breast fed) and to wait 6-8 more months for all trapped milk to be gone and go.That is what i did..I was called back in that night for a next day appointment and within 3 days for a biopsy.My first opion breast surgeon told me all DCIS m 3 areas and I was in "no rush for a surgery" If it took 12-14 weeks to schedule w/ a plastic surgeon then no problem. Luckily I got a 2nd opion who said there is an invasive component and surgery was immediately shceduled in 2 weeks. I am brac 1/2 negative..however my oncologist still thinks there is some kind of undetected mutation. I will be get my ovaires out or hystertomy decided my a new oncologist gyno. Since I am still getting treatments we will check the ovaries trans vaginal ultrasound every 3 months and will schedule either a oopherectomy or hystertomysomewhere around when her ends aug 2011. if doctors dont give you a decision you feel confortable w/ im learning to do all my own research and demand the care you feel confortable with.
Please explain to me the other options you mentioned instead of the oopheroctomy.
Thank You,
joletta

[krisvell]

Marcia,
I am sorry to hear about your Aunt. I really can't speak to all that you can do. I am looking into two BC Vaccine Trials as extra insurance to hopefully keep the BC beast away. Some of posts at this site inspired me to pursue them. Sandra from GA was extremely helpful. I know it's easy and think and worry about what could happen. Every day I remind myself that I have "Another Good Day". It keeps me from going down that black hole. It's not always easy. Your signature sure does look promising to me; you've already done more than the standard treatment.
So ....Have Another Good Day; because you are going to have a real lot of them.

Kris..