New Posts New Posts RSS Feed - An important new book I highly recommend
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

An important new book I highly recommend

 Post Reply Post Reply
Author
SagePatientAdvocates View Drop Down
Senior Member
Senior Member
Avatar

Joined: Apr 15 2009
Status: Offline
Points: 4461
Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Topic: An important new book I highly recommend
    Posted: Nov 29 2018 at 9:47am
Dear Beloved TNBC family-

As many of you know I have posted before about various movies and books I have enjoyed and have always posted qualifying them as off-topic.


This is different as this book is a very important read/pertinent for our wonderful community and may actually prompt someone to get tested or be instrumental for a loved one testing. Lives may be at stake and can possibly be saved.

Dr. Pamela Munster is a founder of the BRCA Clinic at University California San Francisco (UCSF). She has written a beautiful, informative, truthful book

https://www.amazon.com/Twisting-Fate-Journey-BRCA_from-Patient/dp/1615194789/ref=sr_1_1?s=books&ie=UTF8&qid=1543452696&sr=1-1&keywords=pamela+munster

In my experience it is rare for a Breast Medical Oncologist to be so open about her personal battle with cancer and well as her dad's journey. And, is very informative about many aspects about breast/pancreatic cancer in consumer friendly language.

As many here know, I have been surrounded by breast/ovarian/pancreatic/melanoma my whole life. A desire to help folks with serious illnesses is my life's work, as a Patient Advocate, as is Dr. Munster's as a Breast Medical Oncologist, researcher and now author. Maybe that is why this book resonated so profoundly with me. Dr. Munster has dedicated her life to helping others and I believe this book is a very important effort to further share her knowledge and personal experiences in an effort to educate/help folks.

If there are any in our community under the age of 65 with breast cancer who have not been genetically tested I strongly suggest you consider it. The best person to talk to is a Certified Genetic Counselor. If anyone needs help finding one please feel free to send me a PM.

As Dr. Munster points out in her book the testing available in 2018 is far more comprehensive and affordable (as low as $99) than ever before. The information can be important/informative to you and to your loved ones.  

At the core of this book is uplifting beautiful story of a marvelous Breast Medical Oncologist and her interactions with her patients and as importantly an authentic re-telling of what Dr. Munster has experienced as Pamela and how she fought for herself and her dad and helped save both lives.

I literally could not put this book down. I was fascinated with her story and deeply moved by her story, the authenticity of it all, and the many stories of some of her patients and her interactions with them. It is an inspiring book, a book that may increase your knowledge and most importantly a book of hope.

with my love to all here,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
Back to Top
Meadow View Drop Down
Groupie
Groupie
Avatar

Joined: Apr 22 2017
Location: seattle, wa
Status: Offline
Points: 63
Post Options Post Options   Thanks (0) Thanks(0)   Quote Meadow Quote  Post ReplyReply Direct Link To This Post Posted: Nov 29 2018 at 7:01pm
Thanks for recommending. I just purchased it for my Kindle!
Back to Top
SagePatientAdvocates View Drop Down
Senior Member
Senior Member
Avatar

Joined: Apr 15 2009
Status: Offline
Points: 4461
Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Nov 29 2018 at 9:25pm
Dear Meadow,

I hope you find the book worthwhile.

I was born in 1944 and my mom was diagnosed in 1960 and passed away from metastatic breast cancer in 1964 when she was 46 and I was 20. I am in NYC today and for whatever reason, perhaps reading Dr. Munster's book, I found memories of my mom swirling around my head and they are still painful. We lived in NYC. So, I was very in touch with breast cancer and when Shirley Temple Black announced in 1973 and Betty Ford and Happy Rockefeller announced, in 1974, that they, too, had breast cancer it had a profound effect on me and many in our country. 

They, bravely, broke the barrier of talking about a topic that was often kept private. By doing so, they educated the public and saved lives. Over the years there were many many other, some famous and some ordinary folks like us, who were able to share their journeys in a public way. Or be comfortable enough to share it within their families. I think especially of Angelina Jolie who did more in 30 minutes to publicize the BRCA mutation than I had done in ten years of speaking/writing about it publicly. I inherited the mutation from my mom and she from hers and I passed it to my daughter who got TNBC when she was 36. Angelina Jolie's mom had deadly ovarian cancer and Angelina decided to make her surgeries and condition public. I met Robin Roberts at a TNBC Foundation event and I was so delighted to meet her and thank her for her public candor. What an incredibly gracious woman. I did the same when I met Sidney Poitier and blessed him for publicly sharing his prostate cancer. 

In recent years countless other celebrities have come forward about their breast cancer. I applaud all of them as I applaud Dr. Munster. No, she hasn't starred in a movie/TV or written a famous song but in this very candid, personal memoir her contribution, in my mind, is equally important. Plus she has gone much further, in technical terms to describe what she felt like emotionally and physically in going through the whole experience of life saving surgery and risk-reduction surgery and how specifically she interacted with certain patients and helped them in beautiful, authentic ways.. Also, she has explained much about breast/ovarian/pancreatic cancer. Dr. Munster has come through all of this. She is a survivor. It is a book of hope. I believe she saved her dad's life, as you will read, in addition to saving her own. Doesn't get much better than that, does it?

One of the lines that bounced off the page to me was when Dr. Munster wrote "No man should die of breast cancer because he felt too embarrassed to have a mammogram."
A true story. Some ten years ago I went to a major west coast cancer center's breast imaging clinic in Santa Monica. I was scheduled for a mammogram and I went to the receptionist to check in. She said without looking at her computer screen. "Sir, you are in the wrong place. This is for women." "But I have the BRCA mutation and I am at above average risk for breast cancer. Men can get breast cancer." "I never heard of BRCA and didn't know men could get breast cancer." "Please check my name on your appt. schedule." She did, checked me and I had my mammogram and got many stares, but no matter. That doesn't happen as often these days but it is still tough, in my experience, to get most men, even with the BRCA mutation, to do active surveillance.

For those of you, here with the BRCA mutation please read the book and if your loved ones have not tested please encourage them to do so and if positive, I suggest you encourage them to do surveillance at a BRCA hi-risk clinic like the one at UCSF that Dr. Munster co-founded or others elsewhere. If you need a list please send me a PM.

As Dr. Munster points out in Twisted Fate and as we have seen on our site there are a lot more weapons at our (women and men) disposal to help us survive.

again, with my love to all of you in our marvelous family.

always,

Steve






Edited by SagePatientAdvocates - Nov 29 2018 at 9:31pm
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
Back to Top
 Post Reply Post Reply
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 11.05
Copyright ©2001-2016 Web Wiz Ltd.