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.
Most who particpate in AnCan’s programs know we are massive proponents of involving palliative care, or as UCSF calls it ‘Symptom Management”, early in your treatment path – so we stronlgly recommend attending this CureTalk webinar.
Dr. Mike is a good friend of AnCan, as is CureTalk – so please don’t miss this presentation. You can register here.
Editor’s Note: Some of our AnCan prostate cancer community have alrady seen this message, but we felt it was important enough to broad- rather than just narrowcast!
AnCan has recently noted a couple of examples where involving more rather than fewer doctors can be benifit the patient. However, doctors, advocates and others may disagree. Since AnCan believes that YOU, the patient, are your best advocate, we’ll leave it to you to decide.
The first example involves palliative care …. and NO, palliative care is NOT hospice. Listen to this 2′ video from Dr. Elizabeth Loggers at Seattle Cancer Care Alliance, one of the best cancer treatment facilities in the country …. she explains it much better than we ever could! Nonetheless, there is a reluctance by some medical oncologists to involve the palliative care service for their patients … even at a late stage. While some med oncs welcome the involvement of palliative care, others see them as meddling. We have seen examples to support this with different cancers and in different NCCN institutions, including those with the best palliative care services in the USA.
This concerns us greatly, because while the med oncs have expertise in addressing your cancer, they may not be experts in, and on top of, all the developments in pain and side effect management – like nausea, fatigue and more. And that’s why in some hospitals, Palliative Care is called ‘Symptom Management’ – for example Seattle Cancer Care and UCSF. It is not just a euphemism to dispel the association with hospice; it truly describes what the palliative specialty does. Some palliative websites boldy invite all cancer patients, no matter the stage, to consult with them! A further benefit to adding a palliative care doc to your team is the value of having a readily available quick and dirty second opinion on treatments your med onc prescribes. Perhaps this is the source of concern for your medical oncologist, but frankly they need to get over it and work collaboratively with your paliiative care doctor.
Those who follow AnCan well know AnCan pushes involving a palliative physician early in the treatment path for a multiple of reasons. And we proudly boast having one of the best palliative care doctors in America on our Advisory Board, Dr. B.J. Miller. For most NCCN/NCI institutions you do not need a referral – just make your own appointment. First try your quarterback doctor, but if they seem reluctant then advocate for yourself, force the issue and go direct.
The second example this week may apply more to prostate cancer than other oncological disorders, although maybe not! In most cases the diagnosis of cancer immediately involves a medical oncologist. For a few cancers, like prostate, a GU med onc (genitourinary medical oncologist for those unfamiliar with the vernacular!) may not get involved until the disease has clearly metastasized; we see that as a mistake that does not serve the patient’s best interest. AnCan believes a GU med onc, and in fact any specialty med onc, should be included as soon as the treatment plan includes a systemic protocol. And why – because surgeons and radiation oncologistst are not trained in internal medicine and systemic treatment – that is to say any treatment that impacts the whole body like chemo- or hormone therapy. That requires expert knowledge of internal medicine. Whle some may argue that med oncs only muddy the waters early in treatment, we disagree.
Loss comes from many sources …not losing a loved one alone. How we, as men, grieve a loss can be complex and insufficient. I note how this author is still wrapped in deep mourning after several years … despite his own tips.
Our thanks to John Novack, our buddy at Inspire, who sent this article that appeared on the nextavenue website.
Prednisone with Zytiga; fighting mental acuity on Zytiga – Ritalin, exercise; Zytiga and dreams; experience on darolutamide Nubeqa; NIH scan protocol; when to get your tumor sequenced; a caregiver’s experience; what your caregiver needs … intimate relations; getting olaparib prescribed; surgery follow-up with high Gleason; CBD for hot flashes; intermittent hormone therapy
Our Board President, he prefers this to Chair(!), reflects this week on a conversation many must face!
