by Rick Davis | Apr 19, 2020 | hospice and palliative, Advocacy, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Men's Breast Cancer, Multiple Sclerosis, Ovarian Cancer, Prostate Cancer, Recent News, Women's Breast Cancer
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.
by Rick Davis | Apr 10, 2020 | Advocacy, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Men's Breast Cancer, Ovarian Cancer, Prostate Cancer, Recent News, Women's Breast Cancer
Like other cancer advocates, we have heard many questions over the last month or so about the urgency of treatment in these surreal times of self-quarantine. This is especially relevant if the treatment is for someone whose immunology is already compromised – by chemotherapy, other systemic treatment, or possibly even radiaiton that can stress the white blood cells in some instances.
AnCan’s position, by and large, is don’t take unnecessary risks! Many treatments can be safely postponed …. and if considered elective, may be deferred automatically; for example, biopsies, especailly in a monitoring rather than a discovery function, and other elective surgeries. This is also true for many scanning procedures. Some drugs have long half lives, so if, for example you are receivng hormone thereapy or bone strengtheners and have been on them for a while, speak to your medical team whether you can skip a planned maintenance appointment.
And if in the midst of chemotherapy or immunotherapy, huddle with your medical team. Anecdotally, one of our board members, who is 2 treatments into a 6 treatment cycle, was advised by his medical oncologist to defer his infusion today .. so be sure to ask befere showing up for a scheduled appointment. You well know, especially if a blood cancer patient, that your immune system is already compromised so don’t place it under threat if you can avoid that.
ASCO is continuously updating guidelines for all types of cancer treatment here.
What about those of you about to start, or may even be in the course of radiation therapy … what to do? Our Advisory Board member, Allen Edel, recently reviewed guidelines from ASTRO for prostate cancer radiation that he wrote about on his own blog, Prostate Cancer News Reviews and Views. The bottom line for most every situation except palliative radiation for advanced disease, is that treatment should be deferred. And if you are in the midst of treatment, you probably already know that a short deferment is fine, but a longer break can impact the effectiveness of the total cycle. Whatever your cancer, be sure to consult with your radiation oncologist to discuss whether your radiation tretment can be delayed beyond the crisis … why take the risk if you can safely avoid it.
by Rick Davis | Mar 29, 2020 | Health Resources, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Multiple Sclerosis, Ovarian Cancer, Prostate Cancer, Recent News
https://www.inquirer.com/health/expert-opinions/amid-coronavirus-stay-at-home-order-healthy-people-are-learning-ways-sick-opinion-20200326.html
Our good friend John Novack is responsible for Patient Engagement and Communications at Inspire ….. there are a few ‘Head’, and Senior VP’s sprinkled in their too! John often sources great articles and writers for major publications , one of which is The Philadelphia Inquirer, He has directed our moderator, Renata Louwers, their way.
This latest Opinion piece that appeared last Thursday struck a big chord with me … and I hope it will with you too, especially if you have lived with serious illness that has compromised your immune sytem and limited your movement.
Onward & upwards, rd
by Rick Davis | Mar 26, 2020 | Cancer Resources, Blood Cancers, Men's Breast Cancer, Ovarian Cancer, Prostate Cancer, Recent News, Women's Breast Cancer
There are so many great sources of highly quality information that we at AnCan do not need to contribute to the overload. But when we see a good article we will bring it to you, especially if it pertains to any of our groups. So here are two that fall into that category.
The first follows up on a queston raised in our Advanced Prostate Cancer Group on Tuesday, when a particpant asked whether he could delay treatment … in particular androgen deprivation and bone strengthening shots. And the week before we had a discussion about hospital visits at this time of virulent crisis. This article from The Washington Post reports on how the Covid19 is effecting several different cancer patients including one advanced prostate cancer patient enrolled in a clinical trial, who has adjusted his treatment.
The second link is to a CURE Talks interview with Dr. Stephen Pergam, Fred Hutchinson Cancer Center, University of Washington and several multiple myeloma patient advocates on the interesection of Covid19 and MM/blood cancers. You can listen to it here .
For us at AnCan, we have definitle seen an upswing in attendance to our meetings. In response we have added two sessions, and two new meetings for blood cancers, and for ovarian cancer.
