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 A First Hand Resource with Pal-to-Pal Support
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| ProtonPals e-Newsletter |
November 2009
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Greetings!
This month I thought I'd reflect on our many blessings and say thanks to all at the Proton Center who have provide care for us and who have contributed to our organization's effort in supporting the newly diagnosed and in providing information during your recovery.
In October we received our first 3 mini-grants from my old company; i.e. the one I retired from in 2000. The ExxonMobil Foundation has a very active volunteer involvement program where it encourages volunteerism by matching employee and annuitants volunteer work with mini-grants to the non profit organizations. Based on my work with ProtonPals, I applied to the foundation for 3 mini grants and received a check for $1500. This money is being used to support our low budget operations and to gradually pay back a loan. The primary expenses come from the web site subscription, the email newsletter services from Constant Contact, conference outreach materials and publications.
I'd also like thank two of our ProtonPals, Thomas R. and Lorene M. for writing to us and adding another a different personal touch to the our newsletter. Thomas is a young man who completed his treatment this year and writes about his journey in this month's newsletter.
From California, where Lyman recently returned after completing his treatment in September, Lorene writes about what's it's like from a wife's or sweetheart's point of view.
In gratitude to all who've come forward to support and share information with your Pals in our "little den" or change room, and in social hours at the days end.
From Your Texas ProtonPals,
Joe Landry, Ban Capron and Peter Taaffe
ProtonPals November 21, 2009 NOTE: The "Feedom from Want" is one of four pieces painted in 1943 by Norman Rockell and is in the Norman Rockwell Museum in Stockbridge, MA. I saw the set in 2006 and this little clip does not do justice since it is an oil on canvas and is 4 feet by 3 feet. The other three paintings are "Freedom From Fear", "Freedom of Speech" and "Freedom of Worship." Four Freedoms |
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Notes from a ProtonPal's Journey
Thomas R. Reviews Article and Reflects on His Own Journey
I
am African American, diagnosed at age 49 with a PSA of 3.0 (having risen 8mo
earlier from 2.5) and Gleason of 7 (3+4). I am married with two children. I
just read an interview by Dr. Terry Mason. It has 10 questions addressed to an African American
(AA) urologist who has an active role in the Chicago area treating and
advocating for AA with Prostate Cancer (PC). I found the interview well done. He
does not advocate one treatment method, rather, he suggests taking time to
research at least surgery and radiation before making a decision. It is worth
reading by anyone, particularly, if they, or someone they know was diagnosed
with PC.
The
usual issue concerning screening continues to be debated. Why? I don't have the
slightest idea. Consider that PC tends to strike AA's younger, is more
aggressive (i.e., higher Gleason), and tends to be more advanced when diagnosed,
suggests to me that AA should not hesitate to get initial PSA and DRE perhaps as
young as 30. These screenings are not expensive, nor are they painful. At the
very least they would provide a baseline from which to monitor patients. Some
have said that this could lead to more problems such as needless anxiety and
worry. I suggest telling that to the man who at age 39 learns that he has PC
with Gleason 10 and evidence of distal metastasis. I've met such men since the
time I was diagnosed and subsequently treated. None would trade waiting to
discover advanced PC at the 'recommended' age for dealing with some anxiety
earlier in years. As for me, finding out earlier gave more options and hope
compared to finding out later.
The
article explores the possibility that race plays a role in diagnosis, treatment,
and complications due to treatment. I won't spoil the interview for those who
wish to read it. My personal experience is aligned with most of the men who
chose PT. Almost universally, we stumbled upon it. I was told surgery was my
best option due to my relatively young age, and I was two weeks away from my
appointed time with the knife. My wife never let me rest with surgery so I
continued to search for something else. Eventually, I asked for a referral to
see a radiologist. The radiologist suggested surgery but was willing to screen
for Proton Therapy. He said that if I were to chose PT I should consider 6mo of
hormone therapy. I also asked to speak to a PC Oncologist. He initially
suggested surgery as well. When I told him of my concerns about the potential
life long side effects of surgery, he suggested that PT with hormone therapy was
perhaps for me a better choice. The fact that I am writing this introduction
shows which treatment I chose.
I
cannot say that I was treated worse than others, or that my treatment was
administered with a different (perhaps worse) precision than others. I feel I
was treated for the specific symptoms, age, race, grade of cancer, and potential
spread of the disease. Because of my excellent experience I would without
hesitation recommend PT. With the exception of the initial diagnosing urologist
who (in my opinion) strongly recommended open surgery as soon as possible, no
other doctor was so insistent upon a quick decision, nor did they try to overly
influence my decision. I feel that I was (in all respects ) properly treated
once I slowed down, and took control.
Sincerely,
and wishing all men low-steady PSA's,
Thomas
R
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His Body, Our Heart
Prostate Cancer - A Wife's Perspective
In early 2009, my
then-sweetheart-now-husband was diagnosed with prostate cancer. I remember the day this journey started in
February, and where I was standing when he told me. He had just walked into the house and I was
standing in the hallway. I took one look
at his face and in that single, crushing instant - knew something bad had
happened. He told me that his doctor had
reviewed his most recent PSA test and wanted him to get a biopsy. Two months later Wyman called home during
lunch and told me that his urologist had come to see him at work to tell him that
his biopsy was positive for prostate cancer and wanted to see both of us that
afternoon. (Wyman is a nurse and his
urologist works in the same building)
I was a little too stunned to be scared
right then. I hung up the phone and
immediately got onto the internet to do research on prostate cancer and
although Wyman "graduated" from proton therapy treatment at MD Anderson on
October 1, 2009, I still do constant research - I always will. If I were to describe the emotional roller
coaster that we have both gone through from the moment his PSA test went awry
on him, it might fill a slim book. You
see, I don't have a prostate. I don't
have brothers and my father didn't suffer from prostate problems during his
lifetime. My men friends talked about
all manner of boring, fascinating or disgusting male interests - centering most
of their discussions on sports, money and what they hated about their
jobs. No one mentioned their
prostates. I only knew about prostate
cancer at the very edges of peripheral friendships; it always happened to
someone's grandpa or uncle or dad.
Now I am 55 years old and as statistically
expected, every age-peer man I know is very familiar with the annual "finger
wave" exam and its implications. But
discussions about side-effects from surgery, hormone treatment and photon or
proton radiation therapy are still intentionally vague, even from urologists. Remember when sex used to be a deliciously taboo
topic? Now you can watch more
infotainment on the topic than is bearable.
However, the topics of incontinence, impotence and the ancillary
emotional/financial/social effects of prostate cancer need to be dealt with
more openly, like with the Proton Pals support groups at the Proton Therapy
Center. Gentlemen, I am going to be
perfectly blunt with you: sexual
intercourse with an erect penis is not necessary for lovemaking. Honestly.
Women may be way different, but when we love you, we do so
unequivocally. Talk to us about it so
that together we can make it work.
Understand that even if we ladies are trying to be strong and
supportive, this might scare the heck out of us at first too.
But that is just the tip of the urological
iceberg. If there is anything Wyman and
I have learned through this experience, its how much we didn't know about prostate cancer, its side effects and the medical
treatment options. As a woman who is so
used to having her gynecological depths physically plumbed on a regular basis,
I am a little dismayed by how prostate cancer is often cursorily discussed as a
statistical occurrence; "if all men live
long enough, they will have some sort of prostate problem, not limited to
cancer". Many men have difficulty
enough with the idea of a physical invasion to their bodies through the back
door. They might also find it difficult
to communicate emotional issues - so being saddled with a prostate cancer
diagnosis can make for rough going in uncharted waters. Don't listen to any of the bunk when people -
including medical professionals - shrug off prostate cancer as a minor
occurrence. After all, it is happening
to YOU so nothing could be more important.
Here is the thing; the people in cancer
patients' lives have to be supportive and caring and simultaneously somehow have to give short shrift to
their own fears and just plow forward.
If you need a female mentor for what fearlessness in the fairer sex
should look like - go talk to Tai Ly, RN, ANP-C, at the Proton Therapy Center. She will tell you straight up what your
options are and why you should not waste
a single second worrying or being scared.
She will also tell you that M.D. Anderson's Proton Therapy Center will
take care of the prostate cancer once you are accepted for treatment. She made our fears dissipate in the first 5
minutes of talking to her - pffft, just like that. It isn't that you can be promised an
absolute "cure", but you will discover that you can't make things any better by
being negative but you can surely muck yourselves up unnecessarily.
If I could give my amateur advice to anyone
going through prostate cancer diagnosis and treatment be they
husband/wife/partner/friend/family - it would be to immediately ditch your
fears at the doorstep and arm yourself with all of the research that you can
find. Talk to more than one urologist,
more than one radiation oncologist, a psychologist, social worker and all the
friends or acquaintances you have who might have gone through this
experience. READ UP ON THE SUBJECT and don't take "No" for
an answer. When you talk to those
professionals, do NOT take a back seat and think that your have to nod politely
and be accepting of whatever you are told.
These are your lives and your dimes; doctors are not miracle workers nor
is it their responsibility to do the research for you. They do have an obligation to answer all your
questions fully to the best of their ability, but you must be aware that they
cannot be specialists in all fields of medicine. If you don't feel like you are getting enough
information then immediately avail yourself of all the resources available. Good doctors will never discourage you from
seeking more information. As far as
proton therapy goes, you will not get nearly enough necessary information from
the general urological community for whatever myriad reasons exist. Don't
waste time. However, be realistic
about how much work you have to put into your own health care both before and
after treatment.
Become your own best advocate and pffft,
just like that - you will be graduating from treatment at the fantastic M.D.
Anderson Proton Therapy Center and on your way to a better golf game...or the
same dang one but ain't life a blast anyhow?
Oh yes, if you need help - the Proton Pals
is wonderful place to hang out.
Lorene W.
November 2009
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November Proton Therapy Group
A Monthly Group Meeting for Proton Therapy Patients
Healthy Eating During the Holidays - Amy Stahl, Senior Clinical Dietitian with M.D. Anderson was the featured speaker at November's meeting. Although the group was small we had a very active meeting and it was especially upbeat session but touching since two members were completing their treatments the following day and would be leaving Houston to return home. Congratulations to Scott. S. and Patrick B. Scott heads back to Florida and Paul and his wife are driving back to Olathe Kansas this weekend. Scott owns a risk management and insurance agency on the Florida coast. Scott wanted you to know he's interested in continuing his active role in supporting newly diagnosed men in addition to current ProtonPals. In making his decision, Scott did a lot travel and research into treatments and has shared information on surgery as an alternative with some newly diagnosed men. Paul B. and his wife have owned a bricks and mortar health food store for many years, along with two gyms and also a large online health food business.
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Tired of My Rants on Early Screening?
Read this "Wait til age 50 for mammogram"
I've been pounding the podium on early PSA screening for so many months I thought I'd give it up this month and write about what's going on in women's health. A very recent article in the Houston Chronicle about the recommendations of the U.S. Preventitive Task Force drew this comment from Bubbasue who wrote. "Well, paint me a dead woman. I had breast cancer at 44! Early detection saved my life." Well when I wrote that first paragraph on Monday, the day of the announcement, I knew they had struck a nerve and there would be a lot of "walking back" this recommendation as it's called on cable news. And there was plenty. This is the first and foremost health issue in every woman's mind. I know personally since I have two in our immediate family with breast cancer and both are not over 50 years old. As we near the end of the first decade of this century do you get the impression (as I do) that we are in an irrational age and that the " inmates are running the asylum?" If you agree speak up and do something about it.
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Let Your Annual PSA Screening be a Catalyst
To Commit to A Anticancer Lifestyle Change.
After hearing David Serban-Schreiber in Houston earlier this year, I ordered his AntiCancer book and had it shipped to all (5) of our adult children. I was really impressed with his story and featured him on this newsletter. He's lending his insights to early prostate screening and how you could choose that to effect a change in your life style in his blog this month. Screening for prostate cancer: |
About ProtonPals
Thank you for subscribing to the newsletter and using the ProtonPals web-site. You'll receive one or at most two mailings a month around mid month. In addition to the newsletter we'll also send one or two additional emails of special events or news that are of interest to the group that month. If you're a new subscriber you may not notice that we've contracted with the email service to archive our newsletters back to May 2009. ProtonPals is a group who chose proton beam therapy to cure their cancer and were treated at the University of Texas M.D. Anderson Cancer Center Proton Therapy Center in Houston, Texas. The "Pals" formed a network of Pals in order to: - Stay up to date with treatment cure results
- Provide support to others and Center activities
- Be informed on any side- effects
- Promote proton radiation since it's widely regarded to have a significant advantage over conventional x-rays.
- Attract and nurture more Pals who support our cause, patient-to-patient and friend-to-friend
Joe Landry, Ban Capron and Peter Taaffe
15806 Manor Square Drive
Houston, Texas 77062 - 4743
ProtonPals, Ltd.
Support ProtonPals by letting us know how you're doing. As a former patient we'd all welcome your help in getting the word out about proton radiation and how you're doing. Please donate using the Donate Icon below or mail a check made out to ProtonPals, Ltd.(we're now tax deductible) at the address above. Read more about about it on the website How to Help - Giving
ProtonPals, Ltd. is a 501 (c) (3) public charity501 (c) (c)
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