Stories - 2
Hello Dr Herman!!!
Congrats on all the exciting news about your PSA’s! You are changing
and saving so many lives. Thank you so much for all that you do! I
wanted to share with you how you personally have impacted my life and
the lives of several of my family members. Last month while we drove
all over North Carolina, if you recall we chatted about my co-worker’s
and my family histories. You urged me to get Lynch tested (which I
did about the same time you were on your plane returning home.) I
tested Lynch negative; I tested 2 years ago BRCA negative as well.
I lost my mom at age 66, a maternal aunt, Anne at age 63 and that aunt’s daughter (my
cousin) Samantha at age 50, all to ovarian cancer. I have only one cancer
survivor relative left, my cousin Barbara who is currently 65, who was diagnosed at age 42 with breast cancer (the other daughter of the ovarian cancer aunt
Anne). When I first started my job, I suggested that she be tested,
but this fell on deaf ears and she did not pursue testing. You
reminded me that I talk to doctors every day about what it is that we
do, and I have an entire family who could possibly benefit from
knowing our BRCA status, not to mention how would I feel if another of
my relatives were to be diagnosed with breast or ovarian cancer, then
I were to later find out that indeed there was a BRCA mutation in the
family. Your words really haunted me. A week and a half after your visit, I had a “family intervention” as I like to call it. I gathered eight cousins and my only aunt around my kitchen table on a Sunday afternoon. I had prepared our own pedigree out 5 generations. I went over our family’s cancer history and the risk assessment booklet and then my cousin (the breast cancer survivor Samantha) agreed that she had to
be tested. During our “intervention”, I discovered that 11 years
after her mastectomy, she was diagnosed with breast cancer in the
other breast! I just about fell out of my chair. I was in college at
the time of her second diagnosis and never knew it. The second cancer was discovered very early, followed by a lumpectomy and radiation. I guess by now you know where I am going with my story?
Two days after our family meeting, I joined my cousin, Samantha for
her blood to be drawn. A week later we discovered that she is indeed
BRCA 1 positive. Several days later, my lone aunt Sally went in for
testing and a week later, we found out that she too is BRCA 1
positive. Next, her daughter (my cousin Kathy) who is 38 and has not
had her first mammogram went in for testing. A very well respected
breast surgeon in town (who attended one of your presentations) is the
physician who has met several of my family members and is now
managing our entire family. During Kathy’s clinical breast exam, the
doctor felt something suspicious. He asked her if she would have a
mammogram, which of course she agreed. She has very dense breasts and
the mammogram showed nothing. Given our family history, the doctor
then asked Kathy if he could do an ultrasound, which confirmed what he had felt. An hour later, he worked her into his schedule and did a breast biopsy. It was a long weekend, but on the following Tuesday, her pathology report arrived and it was Negative!!
It has all been very surreal. I think we all are in shock. She received her BRCA results today and she is Negative. I just received an email tonight and two more cousins are going in for testing next week. Amanda, the daughter of Samantha and granddaughter of Anne, who lost both of these important women in her life to ovarian cancer is going with her cousin, Mattie the daughter of Barbara who was the first in the family to test positive.
Now, my breast cancer surviving cousin, Barbara will be having increased
surveillance, and what a shame she only had a lumpectomy, had she only
known. She had a total hysterectomy and BSO at age 32. She does not
want to undergo more surgery. My unaffected aunt, Sally had a hysterectomy
and BSO at age 40 and has been taking hormone replacement therapy, now
she is set for yearly MRI’s, and has stopped the HRT and is on
Tomoxifen. My cousin, Kathy’s risk has now dramatically fallen and
her need for a total hysterectomy and BSO is non-existent. We are so happy about her results. Interestingly, this weekend, before getting the good news, my cousin made quite a profound comment, “what if the biopsy does find something, think about what it could have been had I waited until I was 40 for my baseline mammogram?” We now have 6 more relatives who need to be tested and their results will directly impact 59 more family members, all from our conversation in the car driving through the “boondocks” of NC.
Dr. Herman, thank you, thank you, thank you. What a story we can share, and so it continues……..
Sincerely,
Lisa in NC
December 15, 2006 was a day that I will never forget. I had been tested positive for the BRCA1 gene mutation. Exactly two months from that date, I had my ovaries and fallopian tubes removed. I was 47 years old, now in menopause and dealing with the fact that I had an 87% chance of developing breast cancer by the age of 70. As if living with this knowledge wasn’t hard enough for me, I then worried about my daughters risk. At the age of 22, my daughter chose to be tested. Wonderful news came my way when I learned that she was NEGATIVE.
Now, I had to concentrate on what I needed to do next to survive.
It’s now three and a half years later having had countless mammograms, MRI’s, sonograms, MRI guided biopsies and markers, I am truly mentally exhausted. Every time that the phone would ring, I would hold my breath and pray that the results were good.
The knowledge that I have gained from Dr. Herman along with countless conversations, lectures and statistics, allowed me to understand my options.
I will be turning 50 in September, and I want it to be a cancer free birthday.
The decision has now been made. With the support of my loving husband, two wonderful children, friends and family, I have made the huge decision to take control of my health and have a prophylactic bilateral double mastectomy with bilateral reconstruction.
Please understand that this decision did NOT come quickly or easily. However, I will be reducing my risk of getting breast cancer from 87% to 2%!
I am so very fortunate to have such an amazing doctor who just won’t quit on helping his patients. Dr. Herman lectures across the country to educate people so they can make informed decisions and take charge of there health.
I know that I have a wonderful support system thru my doctor, family and friends and I am confidant that I am making the right decision. My surgery will be performed in July 2010. I will be updating my story during my recovery.
Lisa Reibman
Please don’t forget “Tell your doctor what’s in your family history, it may just save your life.”
Counting down till the BIG day …7-7-10
6-10-10 27 more days, But who is counting? OK, so I am Nervous.
6-11-10 How do I explain the Butterflies that are living in my stomach ??
6-12-10 Today was the day I told my friends & family that I made the decision to save my life. !!! Very Exhausted.
6-13-10 Questioning if I am making the right decision .I am so very scared right now .My loving husband confirmed I am strong & absolutely making the correct choice.
6-14-10 Phone is ringing off the hook. I have huge support and being told this is the smartest choice. All are behind me on this. Makes me feel better
6-15-10 LearnaboutHBOC.com PSA aired on ABC today. Definitely made me feel more positive. So why am I having crazy dreams?
6-16-10 Going about my day, however, this surgery is always on my mind !!
6-17-10 Worry free day, until North shore called to verify my info. OH NO. reality check.
6-18-10 DOUBLE MASTECTOMY …Don’t like this.
6-19-10 AHHHHHH, out with friends for dinner. Tons of fun and NO worries tonight. feels good.
6-20-10 Happy Fathers Day. A great day with my Husband and my son. BUT Missing my dad, my hero today. RIP
6-21-10 Dinner by boat with my bro & sis in law. So very relaxing. Just what the DR. ordered.,
6-22-10 Phone call from NSLIJ. OH NO. what now? Back to being NERVOUS
6-23-10 Pre OP today. Reality strikes. Now off to Charlotte NC to see my beautiful daughter. feeling much better now.
6-24-10 Vacation with Lindsey & Vic. Having a wonderful time.
6-25-10 Vacation
6-26-10 Vacation
6-27-10 Great time in Charlotte. lots of love from my daughter.
6-28-10 Back home & back to reality. Getting closer to surgery, but I am mentally OK.
6-29-10 9:00 AM. Phone rings. NSLIJ calling.. All good it was my sis in law a DR, at North Shore RELIEF
6-30-10 Why is everyone asking me if I am ready ? Will I really ever be ready ??
7-1-10 July already. 9:00 AM Appt with Plastic Surgeon. 3:00 Appt for medical clearance. OY. Highlight of my exhausting day, dinner in City with my amazing son.
7-2-10 Lunch with my very supportive girlfriend Barbara. Thank you for the inspirational gifts. touched my heart.
7-3-10 Wineries with great friends. What a great day. learning that everyone is behind my huge decision. feels so good.
7-4-10 Happy 4th of July. 72 more hours. Still standing. Well wishes from everyone.!!!!!!!!!
7-5-10 NOT a good day. Having a melt down. Crying all day. Finally this is setting in. Asked Dr. Herman if I am doing the right thing. He is such a comforting, amazing man. I am so lucky to have Dr. Herman as my Dr. & friend !!!! Thank you for all you do.
7-6-10 My 8:00 AM chat with Dr. Herman. Makes me realize I am saving my life.!
8:00 PM, here come the hives…
This is it. Tomorrow morning my dad’s birthday. I know he will be with me in spirit. I will get my strength from him.
I want to tell my kids and my husband how very much I love them all. I am doing this so I will be around for their future.
Update soon. Wish me luck.
July 7th, 2010
Tug flap - bi lateral double Mastectomy.
This is it . The day I choose to save my life.
July 8,9,10,11 in hospital. not moving very well.
July 12. I can’t believe I am going home.
July 13th walking around with 8 drains. This is not fun or pretty!!
July 14th. Today the 8 drains hanging from my neck are coming out!!!! Hurray
July15th..Finally a shower !! AHHHHHH
july16th. Friends and family coming to visit. Trying my best to be up right and mobile.
July 17th. trying to be up and about. OUCH
July18th. Everyone says my surgeon did an AMAZING job. Just waiting to heal.
July 19th Thank you to all my friends & family that came over to keep me company, and bring me food. XOXO
July 20. Staples came out of my legs today.. Ewwww
July 21. Tired, stiff and frustrated.
22 thru 29… Just doing my thing … changing bandages, walking slowly, trying to look like me again….getting there
July 30..Bad day, don’t feel well..
July 31. I can’t believe this but I went ton my brothers boat for the day. Perfect day to enjoy the sun & water. Don’t worry I was in good hands. My bro & sis in law are both DR’S. !!
Aug 1 What, now I have restless leg . OMG this is not good!
Aug 2 Getting very frustrated.. Went to surgeon and went to visit DR. Herman. Dr. Herman always makes me feel better.
Aug 3. RLS Help I am going out of my mind.
Aug 4. lots of walking .Thank goodness for my puppy Emmie. She is great company!!
Aug 5. Good word that PSA for HBOC will air in Wash. DC and Philadelphia. Great news.
Aug.6 Friends coming to visit. Always makes me feel better. love my friends.
Aug 7. Shopping with my hubby. Now that feels good.
Aug 8. Can you believe this…. Fire Island by boat with my Bro & sis in law. AMAZING DAY !!!
Aug 9 Over did it a bit. resting.
Aug 10 Back to surgeon. Healing well. everything on track.
Aug 11. Starting to walk like a new person. feeling good.
Aug 12. Just realized I can’t bend my knees very well.
Aug 13. Stepped on glass.. Did I rally need this ?
Aug 14. my very own ” DR. PHIL” got the glass out of my foot. Thank you hubby !!!
Aug 15. Hampton’s with my husband. Oh boy over did it again. TIRED.
Aug 16. No more mammos
No more mri biopsys
No more sonos
I know this was the absolute right decision.!!!
Aug. 17. Just found out date for next surgery. Oct 12th. Stay tuned…..,.
Lisa Reibman
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