AnCan is a huge proponent of inclkuding palliative care in your treatment plan and medical team!!
Palliative care is NOT about hospice or end-of-life ….. that is just a sub-set of palliative medicine. At AnCan we prefer to call it Symptom Management, the lingo used by UCSF. That is no coincidence as AnCan has an excellent longstanding relationship with the UCSF service. Dr. B.J. Miller is on our Advisory Board, and Dr.Mike Rabow, the Director of Symptom Management Service at UCSF, is a friend of the family too.
Last Friday, Dr. Rabow gave an excellent webinar on CureTalks titled Redefining Palliative Care – you can listen here. For those living with advanced cancer, auditing this webinar is a MUST in our view!
I am copying a post recently received from New PCI publcizing a short ASCO survey on how you embrace exercise and diet. As many know, AnCan strongly endorses exercise as part of any cancer management program; and sensible diet may also be significant and rarely hurts. I have taken the survey and encourage anyone previously diagnosed with any type of cancer to do so. (rd)
The American Society of Clinical Oncology (ASCO) has put together a brief research survey to learn more about patients’ experiences with cancer care. Specifically, ASCO is interested in patient’s perspectives on how things like diet, exercise, and weight management are incorporated into cancer care.
The survey should take most people no more than 10 minutes maximum to complete. All questions are optional, and ASCO has stated clearly that no personally identifiable information will be collected.
If you are an individual with a personal history of prostate cancer (or cancer of any other type), please click here to take this patient survey. Thanks for your help to ASCO in seeking to improve cancer care.
If you know others who are > 18 years of age and who have been diagnosed with any form of cancer, ASCO would also appreciate it if you passed information about this survey on to those people too. ASCO is seeking the widest possible range of responses to this survey from the cancer patient community.
Those of you who have followed me for years know I am totally committed to exercise. I strongly believed and endorsed its positive effects for disease control, especially for cancer. long before it was fashionable or well documented. I started a cancer exercise program at UCSF within 18 months of being diagnosed myself in 2007, that has flourished. At the time there was a paucity of evidence …. now it is abundant. Some of that evidence is well documented on the Research Page of our MedaFit site.
Our regular paritcpants in the High Risk/Recurrent/Advanced Prostate Cancer Virtual Group will know we have two particpants who swear by Dragon Boat Racing ….. Richard Foody who paddles for the MSKCC team.trained by guru Donna Wilson, as you can see.
And Advisory Board Member, Richard Wassersug PhD who paddles out West for his Vancouver based Butts in a Boat team. Richard’s colleagues recently published an academic paper in the February 2020 Issue of the Journal of Psychosocial Oncology that, to none of our surprise, concludes:
Physical activity improves quality of life in men with PC and recreationalphysical activity interventions may be attractive supportive care options for PC survivors with both physical and psychosocial benefits. Joining a sportfocused care group may increase social support and elicit positive psychological growth and future interventions may benefit from integrating the unique characteristics of dragon boating into peer support programs formale cancer survivors.
You can read the full Dragon Boat PCa study 2020 by clcking on the live link. Kudos to both Richards on their Dragon Boat Paddling!
Me on the other hand ….. am very happy in my single scull – the exercise without the social part!
This week our low/intermediate prostate cancer lead moderator – and AnCan Board Chair! – Peter Kafka reminds us that complementary medicine is exactly that …. complementary to conventional Western protocols. Relying on complementary and alternative can have tragic consequences.
We at AnCan fully support the use of complementary and natural medicine when combined with conventional treatments. We do not endorse alternative medicine (rd)
SEVEN CAN BE YOUR LUCKY / UNLUCKY NUMBER
The New Year began with a message on my phone informing me of the passing of a friend. Never good news, but for those of us in the Prostate Cancer community it is always a poignant reminder of just how deadly this disease can be. My thoughts always go to; “what more could I have done?”.
When I first met this man a couple of years ago, he had just been diagnosed as a Gleason 7 (4+3). He had always been a staunch believer in natural and alternative medicine. Now faced with a diagnosis of cancer he found his way through mutual friends to me. I encouraged him to get more information, a second opinion and a 3T-Mp-MRI and a follow up with a local radiation oncologist. He kind of followed these suggestions reluctantly and in his own way, but didn’t really heed the warnings and decided that he would seek alternative, non-medical treatments.
I kept in touch with this person over the past two years, checking in from time to time. I last saw him about two months ago and he was struggling because his disease had progressed substantially, yet he still adamantly refused medical intervention and wanted to treat it his own way. I am always really challenged in such a situation. I do my best to steer men to the best appropriate options for diagnosis and treatment, but I can’t make someone follow my direction. Men can be stubborn! I am sure I don’t need to tell you this.
Another good friend of mine who is also a Gleason 7 (4+3) took my advice and got a second opinion from Dr. Jonathan Epstein at John’s Hopkins. He also was trying to “cure” himself with an alternative regimen of hot baths, enemas and natural supplements. However, he called Dr. Epstein’s office to go over the pathology results and it happened that Dr. Epstein himself answered the telephone. My friend went over all his alternative treatment protocols on the phone. Dr. Epstein listened attentively and then said, “That’s all good, and that protocol won’t hurt. But you have to remember that your disease can kill you without medical intervention”. For this friend the message got through and he went after his prostate cancer with a radiation protocol. He is now doing just fine.
Many of you are fortunate to be diagnosed with a GL-7 ( 4+3 or 3+4) or even better a GL-6. But the fact that you are on this mailing list or checking out this website is indicative that you are wary and not taking anything for granted. Prostate cancer kills some 30,000 of us each year in the US and not all of these men are diagnosed as Gleason 8,9 or 10.
Never turn your back on this disease. Don’t be a stubborn man and convince yourself that “I know best”. I am not saying that medical intervention will cure your disease or does not come without costs, including quality of life. But early diagnosis, staying vigilant, making smart lifestyle changes and choices and seeking top quality medical expertise can all lead to a longer life in many circumstances.
So, when you roll the dice and the number comes up 7, pay attention!
Please note that any links referenced in this recording can be found in the Prostate Cancer Forum. Log in top right.
We also welcome our Advisory Board Member, Allen Edel (@TallAllen) tonight to contribute his moderation.
Topics:
No CT or bone scans prior to Gleason 9 surgery; peritoneal implants; accessing darolutamide; tragic consequences of complementary medicine alone; positive darolutamide experience; treating advanced PCa without hormone therapy; Tru-beam for spot radiation; oligometastasis radiation; pros and cons of debulking the primary tumor; treatment after enzalutamide fails.
Our regular paritcpants in the High Risk/Recurrent/Advanced Prostate Cancer Virtual Group will know we have two particpants who swear by Dragon Boat Racing ….. Richard Foody who paddles for the MSKCC team.trained by guru Donna Wilson, as you can see.
Me on the other hand ….. am very happy in my single scull – the exercise without the social part!