Alexa Jett, former WNBA champ, Kim Perrot … and the Place they come together

Alexa Jett, former WNBA champ, Kim Perrot … and the Place they come together

Alexa JettAlexa Jett has recently connected with AnCan – initially to co-moderate the planned thyroid cancer virtual group we hope to start by year-end. But subsequently her infectious, warm and enthusiastic pesonality opened volunteer opportunities with us. Alexa recently directed The TALK – MS webinar, and she has introduced the Renal Meduallry Carcinoma (RMC) group to us wthat will have its first meeting this ocming week. Now we are working on Adolescent & Young Adult (AYA) opportuities.

Alexa survived recurrent papillary thyroid cancer, most recently in 2019. First diagnosed in 2017, aged 25, Alexa was treated at M.D. Anderson. Whilst there, she refequented Kim’s Place – the AYA retreat where she met one of our RMC moderators, caregiver Charissa Monroe, who lost her husband to RMC.

ESPN published an article this week on how Kim’s Place came to be, and Alexa was interviewed extensively, It was just published on The Undefeated blog and you can read it here:

How the late, great Kim Perrot keeps the Houston Comets’ legacy alive

Peter Kafka’s Version of ‘The TALK”

Peter Kafka’s Version of ‘The TALK”

Our Board President, he prefers this to Chair(!), reflects this week on a conversation many must face!

Recently AnCan in partnership with UsToo initiated a webinar series titled; The Talk.  The series focused upon the significance of conversations with family, particularly our children regarding the implications of a diagnosis and treatment for cancer.  My younger son Jeffrey and I participated in the panel of the first webinar speaking about the reality of genetic driven prostate cancer and the possibility of passing it on to my children.

Last night I was thinking about another “TALK” which was a big part of my experience this year and one which is often difficult to have.  In early May of this year my one sibling, my sister passed away at the age of 78-1/2 years.  She was kind of a renegade and a rather unique woman.  Her first love and passion was riding motorcycles.  When she died, she left 3 bikes in her garage including her 1981 RS -1100 BMW.  She began her motorcycle experience way back in the 1950’s as a beatnik in Greenwich Village.  Later she made numerous trips to ride in Asia, Europe and all over N. America attending many BMW rallies.

I mention this because as her health declined in her later years, she was quite clear with me about not wanting to prolong her life when she could no longer ride her bikes. She and I had numerous “talks” about end of life issues.  She always thought she would “go out” in a fiery crash, but alas it was not to be.  She broke her hip and because of many other leg problems it was doubtful that she would be able to walk again.  After hip surgery she was moved into a nursing home where she lasted about one week.

Her last couple of weeks she was pretty foggy and incoherent but she and I were able to connect via Face Time a day or two before the end.  She knew me, and expressed her wish to get out of the facility and go home.  I told her that until she could master a walker she could not do so.  She knew that was not to be and I asked her if she was going to go to “Plan B”?  She said; “Yes, it would be Plan B”.  A day or two later she refused her food and meds and removed her oxygen and facilitated the end of her journey.  She knew she lived a remarkable life and lasted beyond her expectations and was ready to depart.

I am very thankful that we made the space to have, The Talk so that we both were prepared for the unexpected.  It made the transition so much easier.  I guess I bring this up because it is kind of the elephant in the room for all of us and so many ignore this reality and put off The Talk.  Most likely very few if any of you who participate in our Low and Intermediate Prostate Cancer Virtual meetings will pass on as a result of this disease, but still the fear tends to lurk in the mind. 

Much Excellent News from Foundation Medicine

Much Excellent News from Foundation Medicine

Many of you already know, AnCan works closely with Foundation Medicine Inc who offer Next Generation Sequencing (NGS) somatic liquid and solid tumor testing.

Here are THREE great pieces of news shared with us over the past few days:

  1. The ‘new & improved’ Liquid CDx Test was FDA approved late last week, meaning this test now covers the same 300+ mutation panel as the solid tumor test – but at the prick of a needle! . Read their full press release here.
  2. Medicare considers the Liquid test to be separate and independent from the Solid Tumor test meaning both are covered for the same individual at different times.
  3. AND that’s not all ….. finally we have a decision back from FMI that repeat testing  for either Liquid or Solid is Medicare covered IF there is disease progression. In FMI’s words (that we are approved to disseminate):

AnCan’s always advocating for you ……. and thanks to the FMI team for pursuing this, especially Senior Manager for Patient Engagement, our good friend David Marshak!

Renal Medullary Carcinoma

Renal Medullary Carcinoma

Our moderators are patients and caregivers who intimately understand the struggles associated with RMC.  We aspire to come together to give strength, bring encouragement, and provide support to patients and caregivers from all over the world. This is a peer-moderated group. As such, we cannot provide medical advice; we can speak about our own experiences with RMC. We are here for you, and look forward to meeting you! Moderator bios are found below.


2nd Tuesday of each month at 8 pm EST/EDT

Renal Medullary Carcinoma

Renal Medullary Carcinoma

Our moderators are patients and caregivers who intimately understand the struggles associated with RMC.  We aspire to come together to give strength, bring encouragement, and provide support to patients and caregivers from all over the world. This is a peer-moderated group. As such, we cannot provide medical advice; we can speak about our own experiences with RMC. We are here for you, and look forward to meeting you! Moderator bios are found below.


2nd Tuesday of each month at 8 pm EST/EDT