BRCA positive in a 76 year old woman

karlalynn

Let me say first that you are all in my prayers and I'm so thankful I found this site.  I'm here looking for advice for my mother.  She had a lumpectomy for stage 1 cancer.  She was told she would need radiation treatments and we were all okay with that.  But when she visited the oncologist and further tests were ran, she found out she is not a candidate for radiation because she has the breast cancer gene.  He wants her to have gene therapy which consists of 1 shot once a week for a whole year.  He also advises her to have chemotherapy treatments every 3 weeks for a full year!  To me this is radical!  Chemo for a year?? Really?? At the age of 76?? Overall mom is fairly healthy and fairly active, but she's a small woman at 105lbs.  This treatment just doesn't sound right and just too radical.  I've researched this and most women with this gene develop cancer at a much younger age.  She lives in a small town and we are fortunate to have 1 oncologist.  For a 2nd opinion, it would require travel and she doesn't want to do that but I'm sure she would if I convinced her.  I really would just like your opinion on this.  Does it sound too radical to you too?  Or am I just being too critical? 

Alpal

Karlalynn - I am not BRCA + but this sounds really strange to me. First of all, why was she even tested for BRCA? Strong family history? This test is not something that is routinely done on every bc patient. Secondly, chemo every 3 wks. for a year?  What is the gene therapy? Some sort of trial? Are you positive this is what was said to her? Others will be along tomorrow to express their opinion. I certainly don't know everything about BRCA+ but I've never heard of this treatment for anyone - much less a 76 yo.

StaceyLynn

Hello Karlalynn,

First, let me say that I'm sorry that your mom was diagnosed with bc. Second, as  BRCA+ diagnosed myself, I don't know anything about "gene therapy." My oncologist hasn't mentioned it and I've not read about any type of treatment while researching. I couldn't have radiation because I have autoimmune disease as well as bc, However, I was offered chemo (8 treatments), radiation (before discussing in detail the effects of rads on autoimmune illnesses), and surgery (first lumpectomy then bilateral mastectomy.)

The chemo may last a year because the treatments are spread out once every 3 weeks. I think you should talk your mom into having a second opinion. It's always good to do that.

Prayers to you and your mom...

karlalynn

Hi Allison and thank you for responding.  I honestly don't know why she was tested.  I just assumed it was routine, but apparently not?  I'm very surprised by this.  I didn't go with her to her appointments but I wish I had and you can be sure I will from now on.  This is only what she told me the doctor said.  Gene therapy is a shot once a week for a year that "kills" the breast cancer gene and is done alongside chemo (also for a year).  I didn't think it was a trial but I suppose it could be.  This I will research.  My gut just tells me something isn't right.  Thanks again for responding and I will research gene therapy further. 

Thatgirl

Hi Karlalynn,



I think your mother is wanted for a trial or study. please get a second opinion. Different hospital, different Dr. Office, different everything. Take a pen, paper or recorder if necessary. Your mom probably was unaware of what was involved with gene testing. I refused. Please go with your mom to every appointment if possible. When I was first dx, I could not hear a lot of what the docs were saying, I think my mind and body kicked into survival mode to keep me from going into shock.

karlalynn

Hi Stacey,  I just assumed that gene therapy was "standard" for BRCA+.  But your oncologist hasn't mentioned it.  This makes me very uncomfortable.  You said you couldn't have radiation because of your autoimmune disease, that makes sense.  But not being able to have it because your BRCA+ doesn't make sense.  I will definetely try convincing her to go for a 2nd opinion.  Thank you for responding and I hope your doing well.  Sending prayers and positive thoughts for you.

AnnNYC

Hi Karlalynn,

I'm just joining in the recommendation to get a second opinion -- what I see online about gene therapy for BRCA+ all dates from 1998, 1999, 2000 -- there were clinical trials at that time of gene therapy for BRCA+ ovarian cancer, but it looks like it was something that was tried then and not since.  Of course, I could be completely missing something -- but in general, my understanding is that there is no gene therapy (for any condition)  that has gone beyond the clinical trial stage: see http://www.ornl.gov/sci/techresources/Human_Genome/medicine/genetherapy.shtml

I think it will be really good that you go with your mother to her visits -- everything is so new and there's so much to take in -- even for younger women who are health professionals! -- it's always good to have another set of ears. 

I may be way off base here, but somehow I wonder if the doctor was actually saying your mother's tumor is Her2+, and the therapy that will "kill" the cancer cells is Herceptin?  Her2 is sometimes referred to as a "gene" -- but it is the result of genes of the cancer itself.  (BRCA is what we usually think of as a gene -- something inherited from our parents that increases our susceptibility.)  Testing a tumor for Her2 would be COMPLETELY standard of care (whereas, as Allison said, it would not be standard to do a genetic test for the BRCA gene in a 76-year old). Because Her2+ cancers are aggressive, Herceptin would be recommended for almost every Her2+ patient, if they pass a pre-therapy heart test called a MUGA scan.  And Herceptin really does bind to the Her2 "gene" on the cancer cell, killing the cell, and it is usually given once a month or every 3 weeks for a year (and sometimes weekly, although I think weekly is still being tested?). [See: http://www.breastcancer.org/questions/herceptin.jsp]

Herceptin IS an approved drug -- it's not what is usually meant by "gene therapy" because it's not the introduction of a different, "correct" gene into the body.  Instead, it's a "biological" "immune" therapy -- it's an antibody that attaches to the Her2 protein on the surface of the cancer cell (a protein that is there on the surface because the cancer cell has an "abnormal Her2 gene" in the cancer cell itself).

Anyway, I think it will be good to go with your mom to appointments, and I think a second opinion is a really good idea, and I wish you both the best.

Ann

ktym

I'd go along with a second opinion.  If your Mom is okay with it you may start with calling the oncologist who already saw her, or, at the very least asking for the records from that visit.  Maybe that alone would help you better understand.  When you're first diagnosed this is all so overwhelming, its like people are talking another language.  Then when you try to relate things later, and the story gets told a couple of times, it really gets confusing.

There are genes (BRCA isn't one of them)  or autoimmune conditions that mean you can't do radiation therapy.  It doesn't sound like that is what is going on.  I thought someone's question about whether H2N was getting confused with a gene made sense, because herceptin is one of the chemo therapy drugs that they give for a year. Did oncotype testing on the tumor get confused with gene testing?  Or, a conversation that with H2N being postive they wouldn't do the oncotype testing on the tumor get mixed up? 

Maybe she does have a strong enough family history, or personal history of other cancers that led to BRCA testing, we can't know by what we're seeing here, but, some of this sounds confused and I think both you and your Mother would feel better if you could go through again and better understand what the first doctor said.  Get a second opinion, this isn't an exact science, a second opinion is always good and sometimes hearing the same info told a different way means it all starts to make more sense.  

Going to the information pages here and reading up some on breast cancer and current treatments before contacting the physicians may help too.  If you start to get more familiar with the language then when they're telling you regarding their thought process and their recommendations  may be easier to absorb. Did they give your Mother a packet with general breast cancer information and her pathology report when they saw her?  A lot of centers do and that might be helpful to go through also.

Good luck, we all hope the best for your Mother. There is always someone here as you have seen already

Mutd

Something may be "lost in translation" there, perhaps the physician was doing everything by the book but the doc's words were misunderstood? Like not some "gene therapy" (there really isn't any, not even trials) but perhaps "a therapy suggested based on a result of a genetic test"? And possibly not BRCA but some "other" gene-related test like for Herceptin or maybe the Genetic Health tumor test? Before rushing for the 2nd opinion, it may be good to figure out exactly what has been been tested and what is the suggested regimen.

Alpal

Just dawned on me that perhaps the doc was talking about Herceptin - I see Ann beat me to it. Great minds... The more I think about it, the more I think there was no way they did BRCA testing. Karlalynn - did your mom say the onc expressed concerned about you and/or other family members because of her BRCA status? 

I hadn't noticed you're in Kentucky. Small world.

karlalynn

I want to thank you all for your input.  I called the oncologist today and my mom did indeed misunderstand what the doctor said.  Ann and Alpal you were completely correct.  She is HER2+, ER-PR-.  And he does want to give her Herceptin for a year, and only 3-4 sessions of chemo.  My poor mom was already told she would only need radiation and she thought this appt was just a checkup really to see how she's healing after her surgery and to schedule radiation.  She was in shock to hear all these words about genes and chemo and therapy that her brain shut down and completely misunderstood his words.  Her next appt is Wednesday and you can bet I will be with her.  I'll be coming on this board regularly as I'm both shocked and so incredibly touched that so many people responded to my inquiry.  You all are just wonderful!  Thanks again to you all for helping me to understand! 

 Alpal, I hadn't noticed before either that you are also in Kentucky.  Yes it is a small world.  We could be neighbors!  Prayers and many thanks..

hrf

Karlalynn. I am sorry your mother is going though this. When I read about gene therapy I just about jumped out of my chair so I'm glad I kept reading to find out it was a misunderstanding. I am BRCA+ and consider myself well informed. Is she BRCA+? Or was that also a misunderstanding. If she is positive, then you need to get checked as well. I hope all will be well and your mother sails through tx

ktym

Karlalynn, we are all happy this is working out for  you and your mother

Alpal

Karlalynn - I know you're relieved to know your mom's real treatment plan. Bad as it is, it's a lot better than chemo for a solid year! Poor thing - when first diagnosed all that stuff we hear might as well be in a foreign language!

I noticed on another thread that you posted your sister has ovarian cancer. If your mother wasn't tested for the BRCA gene, you and your sister might want to discuss BRCA testing with your doctors, especially if there is more breast cancer in your family.

I'm going to send you a private mail (pmail). Look at the top of the forum or active topics page and you'll see 1 message in pink writing. Just click on that. I'm so curious about where you are in Kentucky. We really might be neighbors!

Tell your mom we're all thinking about her.

AnnNYC

Karlalynn, thank you for posting this update!  It sounds like your mom is indeed in good hands, which is great so she won't have to travel far for treatment.  Make sure you take care of yourself, too!  (You know, like in the airplane safety lecture, how they tell you to put on your own oxygen mask before you help someone who can't do it for themselves!)  I second Allison in saying "tell your mom we're all thinking about her" -- and you, too!

Hugs,

Ann

karlalynn

Thank you all so very much for your thoughts and well wishes.  I went with mom to her onco today and she is scheduled to start Herceptin treatments next week, and chemo every 3 weeks, pending the results of the MUGA scan.  I didn't bring up the BRCA because I'm thinking it was a complete misunderstanding. Alpal, yes my sister underwent therapy for ovarian cancer and she's doing well, thank God!   As far as possible testing for BRCA gene, I don't know if I really want that.  My grandmother passed away from breast cancer, so I know there is a high risk but, I'm not sure if it would do me any good to know that, maybe ignorance is bliss and at this point in time I honestly don't want to be tested.  There's already plenty to worry about without it.  I found the thread for older women and I'm going to read through it later on.  Thank you all and prayers to everyone here.  

 

AnnNYC

Good luck to your Mom, and you, Karlalynn!

There's also a forum for HER2/neu positive (where you'll find others taking Herceptin):
http://community.breastcancer.org/forum/80

and forum about chemo: http://community.breastcancer.org/forum/69

with a really great thread called "Tips for Getting Through Chemo":
http://community.breastcancer.org/forum/69/topic/478386?page=1 

and there's usually a new thread every month for those who start chemo at the same time, kind of a "buddy" thread -- here's one for those starting chemo in June 2011:
http://community.breastcancer.org/forum/69/topic/769067

beacon800

This is really unusual.

Maybe she is HER2neu+ rather than BRCA postive? 

The treatment you describe sounds like a herceptin regime. I am not aware of gene therapy for BRCA+ people, but maybe it's out there, but not getting much press.  I communicate with the FORCE people from time to time, who are all  BRCA+ and I don't see mention of gene therapy.

Do a double check - maybe a communication error. 

AnnNYC

Beacon800, Karlalynn confirmed yesterday that your guess is correct -- her mom is HER2neu+ rather than BRCA positive, and the treatment regimen includes herceptin.

You're right, there is no "gene therapy" for BRCA+ people in the usual sense of "gene therapy" -- using a vector (usually a virus) to insert a "good gene" into every body cell the vector penetrates.

karlalynn

AnnNYC, thank you for the links you've posted.  I've added these to my favorite topics, and printed out the chemo shopping list.  Mom starts chemo on Monday and I have no doubts these forums will continue to be a God-send.