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01. PTC (Post-transplant Cancer): General introduction

01. PTC (Post-transplant Cancer): General introduction

Welcome to the TRIO (Transplant Recipients International Organization) Post-Transplant Cancer (PTC) web site.

Some words quoted from Bronwen Watson as shared on mymed.com
"Receiving a diagnosis of cancer can fill anyone with an undeniable sense of dread. With the global prevalence of various cancer forms seemingly growing by the day, the notion that “this won’t happen to me… it happens to other people” is beginning to phase out. Cancer is touching more and more lives.

"Think about it… you probably know at least one person who has battled this disease. But if it hasn’t affected someone very close to you, how much do you really understand about the impact it has on a person’s life? Awareness campaigns like 'Forever Changed' are going beyond ‘knowledge is power’ initiatives, generating proactive plans that provide support where it is most needed.

The global scale of cancer

"Cancer is spreading… It’s touching everybody’s life. Young and old, cancer is likely to affect each of us in some capacity or another at some point in our lifetimes, and for some, perhaps even on more than one occasion. It can happen to you. It can happen to a loved one or even a colleague. While not a very comforting thought, it is the stark reality that few can now ignore."
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On this TRIO post-transplant cancer education web site for transplant recipients,  you will find structured educational material and videos to. . .

1st: LEARN about and raise your awareness of cancer risk for transplant recipients.
Once aware of the higher risk . . .
2nd: you can learn symptoms to LOOK out for
and importantly . . .
3rd: how to deal and LIVE with cancers that affect the majority of long-term transplant survivors.  
Finally you will have . . .
4th: LINKS to resources that will help you go further in this life-saving learning process.

TRIO invites you to come, enjoy and learn how to live a long cancer-free healthy life with your transplant.

LEARN --> LOOK --> LIVE --> LINKS

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Recent updates & PTC news:

> Immunotherapy Drugs Slow Skin Cancer That Has Spread to the Brain 8/22/2018
> Medical condition resource search tool: P2L: Prescription to Learn 8/22/2018
> Cancer education resource: CANCER101 Empower Organize Inform 8/22/2018
> Sirolimus for secondary prevention of skin cancer in kidney transplant recipients: 5-year results 7/25/2018
> Organ transplant patients have increased skin cancer risk 8/4/2018
> 14 Cancer Warning Signs Your Doctor Should Never Ignore (a Reader's Digest article) - 8/1/2018
> Breaking the rules of science to treat cancer - 7/17/2018
> Ten Ways to Lower Your Cancer Risk - 6/7/2018
> MORE HOPE IN THE NEWS: Grail’s cancer blood test shows ‘proof of principle,’ but challenges remain 6/4/2018
> BREAKTHROUGH NEWS:Doctors hail world first as woman’s advanced breast cancer is eradicated 6/4/2018
> Research rundown: using nanorobots to seek and destroy cancer 5/15/2018
> Sleep and Cancer 4/11/2018
> First Aid for People with Cancer 4/5/2018
> more . . .

Resources previously listed here are archived on our
PTC On-line Resources Library page (<-- click here to connect to that extensive linked list of materials)

Note: Content is being added as our research progresses, with the more popular topics being expanded first, ie., organ type: kidney (80% of transplants are kidneys); cancer type: skin (most common cancer by far in post-transplant patients) - since that will serve the greatest number of patients first.

 

Background for this web site and TRIO's PTC project.

How did this TRIO Post-Transplant Cancer (PTC) project come about? 

The story: Steve, a TRIO San Francisco chapter leader from the West coast, called about a recent TRIO member death due to cancer. He gave me a challenge of “What are we going to do about it?” and my response was "Yeah, right!  What can WE (TRIO) do about cancer?"  What an overwhelming challenge!

But reflecting on that further, somebody should do something about that and who better than TRIO to do it?  A quick return call to Steve with that thought, asking if he was willing to come together as a team to tackle the task of trying to find out what we could do by asking medical experts on the subject resulted in TRIO taking on this 5-year Post-Transplant Cancer project.  This is a work in process, with the web site content being developed over time and a formal web site design launched in 2015.  Today you will find the early results of our research with many topics obviously still under development, more being added every week.

Editor's comments . . .

I am personally passionate about this effort because of my own personal experiences of early detection and treatment of prostate cancer, kidney cancer and now years of skin cancers as I pass my twenty-third year with this amazing heart transplant (done in 1994).  Each has been just a ‘bump in the road’ and not a death sentence due to that ‘best practice’ of early diagnosis and treatment, some by due diligence, some by blessed chance and good proactive medical care of very caring doctors and nurses.

- Jim Gleason, TRIO president and since Oct 19th, 1994, a heart transplant survivor living life to the fullest, offering thanks to my donor, Roberto Cuebas, by giving back in many ways

Action Plan

On this web site there is a lot of information that will help you understand a process that is supported by a set of measurable learning objectives  and eventually even behavioral modifications based on a set of ‘best practices’ applicable to your long term post-transplant survival.  

Now go and enjoy the learning experience the site has to offer with many videos to make that learning easier and interesting.  First, click on the LEARN topic which will explain the higher risk of cancer types by type of organ transplant.  Second, LOOK to the modules about the cancer types that you are most interested in to identify the symptoms to watch for in your post-transplant life.  Thirdly, follow the LIVE proactively series of topics to understand the life cycle of cancer from prevention to diagnosis, treatment and long term recovery. 

Below that are many additional LINK resources for you to explore in depth including on-line links to cancer topics, those testimonials mentioned earlier and a list of best practices to apply to your own life habits.  You can even see the learning objectives for this site as further foundation to create that better life dealing successfully with this ‘higher risk’ that comes with our life saving transplants.  

And in this section you can also meet, through brief video self-introductions, our growing faculty of medical professional contributors.

What can YOU do to help?

Yes, we welcome your support for this important effort.  As you will see in the LINKS (RESOURCES) section, we host a series of recipient success video testimonials sharing what they learned through their life experiences dealing with post-transplant cancers.  If you would like to share your own story, write to INFO@TRIOWEB.ORG with your contact information so we can talk about that opportunity.

The BIG picture (a full site map)

To get a full understanding of this PTC site and its twenty-four topics, see a complete map in the 'colorful org chart' representation below.  This was our original design and While its no longer an 'interactive map' with active links to each topic, you can better see the flow that is now possible with the more user friendly design seen in the final production site you are on here today.

site map

Transplant Cancer Risks by Organ Type

Imagine this too common scenario: A candidate for organ transplant attends the pre-transplant introduction offered by most transplant programs.  Among the overwhelming amount of information explained is the fact that a transplant recipient will be on immunosuppressant medications for the...

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    DISCLAIMER: The content of this TRIO post-transplant cancer Web site is not influenced by sponsors. The site is designed primarily for use by transplant recipients and their supporters. The information contained herein should NOT be used as a substitute for the advice of an appropriately qualified and licensed physician or other health care provider. The information provided here is for educational and informational purposes only. In no way should it be considered as offering medical advice. Please check with your transplant team or a physician skilled in cancer and your organ type if you suspect you are ill.