01. PTC (Post-transplant Cancer): General introduction
Welcome to the Post-Transplant Cancer (PTC) Project!
I don’t know if you are aware but as an organ transplant patient,
you face an increased risk of cancer due to
having to take immunosuppressant drugs to maintain your new organ.
There are many things that you and your families can do
to be proactive in learning about, monitoring, and seeking treatment for PTC symptoms.
TRIO built this website so that patients and their families
could learn more about this very important topic.
The PTC Project has sought out the most accurate and
up to date medical information from medical experts,
tailored by organ transplant type, so that you have all the facts.
Spend some time on this website. It will help you learn:
1. About cancer risk for your organ type
2. Cancer symptoms to look out for
3. How to live with cancers that affect the majority of long-term transplant survivors
4. How to build an action plan to help you manage your PTC risk.
5. Where to go to link you to other helpful resources
What patients and medical staff have said about this
Post-Transplant Cancer Project:
"This is a common-sense approach to a very scary subject." - Transplant social worker.
“I believe that the information provided here has given me the tools
I might need in the future if I am faced with a diagnosis of cancer.” - Transplant recipient.
"TRIO is to be commended for taking on this important and complex subject that can mean
many more healthy years of post-transplant survival despite the higher risk of cancer." - Transplant recipient.
“Invaluable information for anyone post-transplant!” - Transplant recipient.
"This tool is fabulous!!!!! You will save countless patients’ lives and empower recipients to take ownership of their healthcare and cancer mitigation strategies!” - Transplant surgeon.
The following are quotes from medical copywriter
"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."
And her thoughts on 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."
TRIO invites you to come, enjoy and learn how to live a long cancer-free healthy life with your transplant.
Note: we welcome your comments/suggestions via e-mail to GleasonJim@TRIOweb.org
There's more background below, but if you are ready to learn now:
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... ---> Click here to read more
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 successful treatment of prostate cancer, kidney cancer, and now years of skin cancers as I pass my twenty-sixth year (as of 2020) with this amazing heart transplant (performed Oct 19th, 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
Recent updates & PTC news:
> "20 Common Cancer Symptoms to Catch Early" 3/11/2020
> "After Cancer Took His Mother, James Allison Taught Our Immune Systems How to Fight It" 2/6/2020
> "The Decade of Immunotherapy: Highlights from the 2010s" 12/31/2019:
As of 2019, immunotherapy has permanently changed the cancer treatment landscape,
resulting in FDA approvals for more than a dozen types of cancers,
thousands of lives saved, and even a Nobel Prize.
When it comes to cancer, it’s hard to deny that this was the decade of immunotherapy.
> "Behind the Scenes of a Radical New Cancer Cure" 11/10/2019
> "Staying on Guard Against Skin Cancer" NY Times 10/15/2019
> "Cancer-Attributable Mortality Among Solid Organ Transplant
> Recipients in the United States: 1987 Through 2014" 9/1/2019
> "What's the sunscreen situation?" 8/30/2019
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)
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 logical 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 it's no longer an 'interactive map' with active links to each topic, you can see clearly the flow that is now possible with the more user friendly design seen in this final production site you are on here today.