Wednesday, October 30, 2013

Guest Blogger: Teri Smieja Author

I first met (if that is the word you use when you find a fellow advocate on Twitter)  Teri during a recent #BCSM chat. I followed her and learned that she was the co-author of the book
Letters to Doctors: Patients Educating Medical Professionals through Practical True-Life Experiences: The BRCA and Hereditary Breast and Ovarian Cancer Syndrome Edition  . I direct messaged her about her book which is written for health professionals. She has been kind enough to write this guest blog. When I finish reading  the book I will be writing a review.   


My name is Teri Smieja. I’m a BRCA1 Previvor, BRCA blogger, co-creator of the largest, active BRCA support group on Facebook and the co-author for an epic new book in the BRCA / HBOC realm. Our book, Letters to Doctors: Patients Educating Medical Professionals through Practical True-Life Experiences: The BRCA and Hereditary Breast and Ovarian Cancer Syndrome Edition. Letters to Doctors went ‘live’ on on October 18th and hit #1 in two genres within the genetics and new medical books categories on the same day it was released. Weeks later, we are maintaining the #1 spot in genetics and hope to do so for many months to come.

Letters to Doctors is unlike any other BRCA book on the market in that the main target is the health care professional. Letters to Doctors has much inside of it to help the patient learn how to better advocate for themselves too, but our main focus is the medical professionals. We plan to change the way things are being done, so that people will no longer needlessly die from breast and ovarian cancer. With the advent of genetic testing, more and more BRCA positive people such as myself are making pre-emptive strikes against cancer. Unfortunately there is much misinformation among those in the medical community and it is our goal to create a paradigm shift in the way doctors treat their high-risk patients.

My co-author, Dr. Jonathan Herman (a practicing ob/gyn in NY) and myself are making no money from this book, as all profits after production costs are going straight to BRCA / HBOC related charities. We are hoping that everyone will purchase two copies; one to keep and one to give to their doctor.

Those in the high-cancer-risk world are erroneously being told by their doctors too often that:

·         You are too young to worry about this.
·         You are too old to worry about this.
·         You can’t get this mutation from your father’s side of the family.
·         Your insurance won’t pay for genetic testing.

Doctors are missing giant red flags in their patient’s intake questionnaires, such as:

·         Family history of ovarian cancer (ovarian cancer is always a red flag).
·         Family history of male breast cancer.
·         Family history of breast, ovarian, colon, pancreatic cancers.

The dots are just not being connected. Many patients rely on their doctors to be the most informed, but in the BRCA / HBOC world this is just not always the case, and people are DYING because of it.

Dr. Herman and myself believe that our doctors want to do right by us, but are basing their practice on outdated information and often times think that their patients are not emotionally strong enough to handle the implications that can come of BRCA testing. We feel that it is not our doctor’s place to judge whether or not their patients can handle this knowledge. It is not their place to tell us that genetic testing is too expensive (last time I checked, funerals were pretty pricey as well!), and we fill out stacks of paperwork prior to our doctors appointments with the expectation that it will be read, and understood properly.
It is our intention with Letters to Doctors, to help our medical staff understand better, how to do their jobs, and to truly see how important their words are to their patients.

We truly wish to save lives with this book, and know that we can do it.


Thank you Teri for stepping forward to make a difference in the lives of women and their doctors. 

Every Day is a Blessing! 

Thursday, October 24, 2013

Research News: Gene mutations, stem cells

Same Mutations in 12 Different Cancers

An article titled

Mutational landscape and significance across 12 major cancer types

appeared in the journal Nature. Researchers at the Washington University in St Louis analyzed data from the The Cancer Genome Project. They  looked at over 3200 tumors in 12 different cancers. They were looking at mutations and insertions/deletions in "breast adenocarcinoma (BRCA), lung adenocarcinoma (LUAD), lung squamous cell carcinoma (LUSC), uterine corpus endometrial carcinoma (UCEC), glioblastoma multiforme (GBM), head and neck squamous cell carcinoma (HNSC), colon and rectal carcinoma (COAD, READ), bladder urothelial carcinoma (BLCA), kidney renal clear cell carcinoma (KIRC), ovarian serous carcinoma (OV) and acute myeloid leukaemia (LAML; conventionally called AML)  "

In those cancers they noted 127 significantly mutated genes(SMGs) . They found that that TP53 mutation played a roll in serous ovarian cancer , breast and head and neck cancers and feel that a common treatments strategies could be used for these cancers.

Source: Nature
WSJ article  

Ovarian Cancer Stem Cells in Mice

The Cornell Daily Sun recently published the article

Cornell Researchers Find Possible Origin of Ovarian Cancer

about the research of Dr. Alexander Nikitin, professor of pathology. In his research, Dr Nikitin found stem cells in the hilum of mice. "Many other cancers, such as stomach and cervical cancer, are known to originate in junctions between the layers of tissue that cover the organ, according to NikitinThe hilum is an area found between the epithelial cells on the surface of the ovary and the mesothelium cells found inside layers of the ovary. He took these stem cells along with differentiated ovarian cells and inactivated the tumor suppressor genes. He then injected the cells into  health mice.  The stem cells grew aggressive tumors while the ovarian cells grew tumors infrequently. Dr Nikitin is now looking for stem cells in the same region of the ovaries in humans.

Source: The Cornell Daily Sun 

Every Day is a Blessing!

Friday, October 18, 2013

NED the Documentary Showing in NJ

Tugg - No Evidence of Disease in Paramus, NJ on Tuesday, November 05,  7:30pm

Are you a gyn cancer survivor or caregiver?  Than you should consider seeing this new documentary about NED. NED is a group of 6 GYN Oncologist surgeons from all over the U.S. who use their band to raise awareness and research dollars for women's GYN cancers. The documentary introduces each of them and captures how it all began. Several women's stories highlight the urgency in treatment and challenges of finding early detection tools and treatment. 

The documentary NED (NO EVIDENCE OF DISEASE) will be shown at the AMC Garden State 16 at the Garden State Plaza Mall in Paramus on Tuesday November 5, 2013 7:30-9:30 . ( There are a limited number of viewings of this film in the tri-state area.) 

Dr Nagarsheth of Englewood Hospital is the drummer and percussionist with great passion for his work and music. He will be offering a question and answer time after the movie. 

Tickets are available . 

Every Day is a Blessing! 

Thursday, October 17, 2013

Unremarkable Again

On the evening of October 1st I drank my first Readi-cat drink in preparation for the first CT scan in a year . I added some chocolate syrup to the rather thick, chalky drink to make it more palatable. Drinking through a straw helps and using a Minnie mouse glass just makes it a bit fun. I also try to imagine it is a chocolate shake not a barium sulfate drink.

The morning of October 2nd I drove to the radiology facility. The nurse there was great and gently started the IV for contrast. I was done in a short period of time and drove home. Later in the day my gynecologic oncologist's nurse called me to say the scan was clear. But you know I wasn't totally convinced I was a-ok I wouldn't feel that way until I saw my doctor and she did an exam. I was going to have to wait for that to happen though since my appointment wasn't until the 17th.

On Tuesday I went for a port flush and blood draw for the CA-125 test ( the tumor marker test for ovarian cancer). The nurse who did the flush was excellent and after saying hello to one of my favorite nurses I drove home.

Today( Oct 17th) I had my 4 month visit to my gyn-onc at the Rutgers Cancer Center of New Jersey. She did the internal exam, told me my CA-125 result and that my CT scan results were good. Then she asked me when I wanted to see her again. It is nice to finally be a part of the decision.  I'm not quite ready for going 6 months so she said another appointment in 4 months would be fine.

As I left her nurse handed me a copy of the CA-125 results and CT scan report.  I've gotten pretty good a reading those reports. I checked that they found my port in the chest CT, and didn't find my spleen in my abdominal CT.The report show no fluid or lesions. All three scans used the word-  Unremarkable. I like being unremarkable. I feel pretty wonderful.

If only I can get less anxious before scans and doctor visits. That would be remarkable.

Every Day is a Blessing!