SUSPECT THE DIAGNOSIS
HI THIS IS DR KEVIN RYAN, PROFESSOR OF MEDICINE AND BOARD CERTIFIED IN BLOOD ( HEMATOLOGY) AND CANCER( ONCOLOGY) AS WELL AS BEING AUTHOR OF THE BOOK WHEN TUMOR IS THE RUMOR AND CANCER IS THE ANSWER A COMPREHENSIVE TEXT FOR NEWLY DIAGNOSED CANCER PATIENTS AND THEIR FAMILIES AVAILABLE ON AMAZON IN EVERY FORMAT OR THE BOOKS WEB SITE WHICH IS THE SAME AS THE NAME OF THE BOOK AND THIS SHOW
I AM A CANCER SURVIVOR, I GET IT AND MANAGED IT FOR OVER THIRTY YEARS
THIS SECTION IS PROFOUNDLY RICH AND VERY INTENSE AND ABSOLUTELTY NECESSARY…. WHAT DO YOU DO WHEN YOU SUSPECT BUT ARE NOT YET SURE OF THE DIAGNOSIS…. THE PANIC TIME
I WILL GO SLOWLY AND INTENTIONALLY REPEAT AND RESTATE MYSELF WHEN NEEDED…I KNOW I NEEDED TO WHEN IT WAS MY TURN
As said in the true short stories “The Enemy” and was reiterated later in “The Telling”, few things can take a patient on a psychological and emotional rollercoaster from conjuring fear and loathing as well as becoming embraced in love, deep understanding and insights than the diagnosis and treatment of cancer.
Each of the major steps of the journey of when tumor is the rumor until cancer is the answer will hold this to be true. The lymph node found on physical exam, the new skin growth, the time when the not so routine clinical complaint; and the everyday “oh it’s nothing”“becomes something and with it comes anxiety. For millions each year, the words are said and the stage is set that something needs further examination, eventually some type of biopsy for tissue will be needed and in short time your nothing may be the something that puts your heart in your hand and a lump in your throat on the journey to the oncologist.
The oncologist may first enter the picture when the diagnosis is suspect but not confirmed. This is a tricky situation and dealt with case by case on the fly, in a careful manner customized for the individual patient and family. To be sure, there are some fundamental and universal ground rules when approaching that point where suspicions of a cancer diagnosis are dismissed or founded. Perhaps the most important of rules is the time proven adage “Although Tumor Is the Rumor and Cancer May Be the Answer, Tissue Is the Issue and No Meat, No Treat”. Yes, it is crude, but right on target.
Oncologists never, ever, label a patient with a diagnosis of malignancy without absolute certainty and as much evidence as time and safety allow. They always have tissue confirmation from a biopsy of some manner unless it is simply too dangerous or not possible to get to the area of concern. Usually, the broad array of tools and superb clinical skills make obtaining tissue usually safe and quick with little lasting discomfort. It logically follows that one never pronounces a recurrence without the same degree of certainty. It is important to note, however, that not all recurrences require or can be biopsied.
In most situations the notion of a clinical presentation consistent with recurrence by the patient with known malignancy being very apparent is common and not requiring invasive techniques. Nonetheless, when the odds of recurrence are low owing to the typical personality or original early stage of the primary tumor or the long time since treatment or a remission, biopsy may be needed. Rarely, in some cancers, a second biopsy is needed because some cancers actually change, needing a different approach than the original treatment.
When we suspect the diagnosis, oncologists often have to work quickly behind the scenes. Not only do we not wish to step on the toes of the primary physician while nonetheless guiding the primary physician as to what the best diagnostic route may be for those for whom tumor is the rumor, but we want to avoid missteps or statements by those who go before us. Thus a delicate balance must be struck as the entrance of the oncologist prior to the diagnosis being certain can understandably be quite evocative of enormous anxiety for the patient and family. Thus, it is essential for the primary, or soon to be referring physician, to identify for the patient and family what roles the many future consultants have. An individual who serves as the “quarterback” must be identified quickly with full consensus and understanding of their role by all.
This concept of focusing the attention on the right professionals applies to the family as well. It is the patient, not the family, who has the disease. The role of the family is enormously important. However, family and friends, the Internet and media as well as other health care providers, frequently inadvertently or overtly inundate the patient with stories that are either inappropriate or way off base. Their influence must be anticipated and never underestimated.
This is a time of reinforcing the message of the autonomy and individual nature of the patient. A good analogy is the vehicle identification number of cars of the same make and model. Theses vehicle may have enormous similarities but run differently based on age and other factors. This is precisely the situation with each patient. Patients are individuals with a disease and they are not their diseases. It is never just another case of non-small cell lung cancer. The philosophic point raised above has enormous practical applications. Oncology is not a one size fits all endeavor.
The health care team must decide early if the oncologist leads or is initially behind the scenes. Sometimes the oncologist does not take over until there is definitive diagnosis or a diagnostic dilemma evolves at which point they step forward. Once again, one must never underestimate the importance of timing the oncologists’ entrance into the world of the patient and family. The comfort zone of the referring provider, of course, will largely affect this. There is great variability in this regard. Some primary referring providers remain very involved and others wish to pass the reins on to the oncologist as rapidly as possible.
Once it is clear that sufficient information exists that it is time to state the diagnosis and begin to put anti anxiety lassos around the beast, here are some insights that may be enormously helpful for patients and their supporters:
- The first few days being a daze is to be expected. Confusion, upheaval, immense sadness and disbelief, anger and crisis of faith that can be challenged and thought lost or in some cases, galvanized.
- A powerful sense of loss of control and even greater fear of that ensuing is common place. This is something Oncologists may assume up front and address directly with the facts as they become evident and their reasoning behind diagnostic or treatment algorithms in advance of crossing those bridges.
- Empathy builds trust and greater patient engagement in the process. It must real, not feigned and not dispensed off to clinical staff (the norm) as the emotional bond of therapeutic alliance is best with the physician as well as the treatment administering oncology nurses. Patients trust less empathetic providers less and not being capable of being their own doctor they can be left to themselves; not a satisfactory situation for anyone.
- Patients may think it is the worst thing to have ever happened to them. It may not be. But anxiety paralyzing you from action would be the worst. It is very therapeutic to have anger and it is very therapeutic to fight. However, it is soul sucking to roll over before fully informed and well-reasoned decisions can be made. Patients would be wise to transform anxiety into fear, fear of the known through knowledge and never stop learning all they can, as that knowledge is power in your fight. God has hard wired you for heroics; unbelievably so as it may seem. I have not seen a cowering cancer patient yet who totally collapsed refusing to being informed when it was offered to them.
- It is a myth that in life or oncology any meaningful portion of your decision must be made spontaneously with no time for reasoned reflection and rational thought.
- It is not a myth that it is unhealthy to rant, rave and react angrily. I see plenty of reason to be very angry whether it be at altered life’s plans, unhealthy personal behaviors leading to this or sheer damn bad luck as in “why me?” You have my permission, and I am confident God’s, to be simply initially angry.
- It is very real to be shocked and when smacked in the face, reeling from the blow is natural, normal, and expected. Retreating from life or retreating from the fight before all the information needed to make wise decisions once calm, or just giving up the ghost is not O.K. Your life is your own and your anxiety is to be honored, not discarded when frightened most. Even if you seem most alone, and rarely anyone is, let knowledge be your friend and counsel. You also must eat, exercise if possible and attend to the activities of daily living as you are very much alive and the journey has barely begun. You need not go right back to work unless you know you cannot; there is no rule. If you need a little time, take it. If you need family, get them involved right away and if you need alone time, take it.
- Own the disease and your reaction. Do not become the caretaker of others who swoon or swing into inappropriate and certainly not helpful reactions over your news. This is your news and your life. This is your trauma and trek; own it. For now, you are the star of this show. Believe me as to the necessity of my stressing this. You do not live or die for others. If you want to handle all communications with others, fine. If you wish to delegate, fine as well. It is your call. This is a time in your life where the most frightening of all scenarios dropped on your doorstep. For the moment, you are not as in control of your destiny as you were before. Understand and fight the overwhelming panic of the diagnosis and your morbid imagination trying to rip the helm from your hands. You have barely set sail and your disease is not, and shall not be you. Your diagnosis may try to direct the show. You must not rest until you wrest from every opportunity the control God intended you to have over these moments. Get knowledge. Demand information and experience your feelings but do not let them define you. This book will help, I promise.
- You have heard the theme before, the next step is knowledge. It is the best anti-anxiety medicine in the world
- Although knowledge will be your greatest pal, if you can, muster up an army of at least one other who forms an allegiance with you to conquer ignorance and face fear. There will be personal business issues needing attendance as well as the new administrative and secretarial assistance needed to stay on top of all the tests and appointments and their results and inevitable questions they will engender. I often encouraged that either a small hand held recording device or better yet a trusted friend or family member act as a scribe to objectively write what was said, not felt, and what needs remembering, not fearing. This is wise to do with every consultant, your primary Oncologist and of course, your original referring primary care provider if that is how all this started. Such a scribe must understand that this is not about their feelings or interpretations; they are a robotic scribe capturing all that was said in context and without error or asking from the source until it is correct. Even in our aggressive American culture, there is still too much reluctance of patients to take such an initiative.
- Avoid blind trust. The relationship you want most, initially, is with the truth; the facts and figures expressed in as much detail in context and relationship to your diagnosis that help you understand what is your disease, what does that mean, what can be done and what decisions are next:
- Never surrender autonomy. Your scribe is a partner there to assist you so that through the frenzied fog of anxiety you can muster yourself for the fight..and have your facts straight.
- Author Jessie Gruyman, president of the Center for the Advancement of Health and survivor of many a life threatening diagnosis wrote “After shock: What To Do When The Doctor Gives You-Or Someone You Love- A devastating Diagnosis. She offers the concept of a contract of sorts with a partner. I support the notion as well as have used it in my practice for years. Key issues Jessie covers are for the partner to agree to attend appointments, confirm in advance of their attendance, always re evaluate and check in with the one diagnosed as to what role they have and should play and in detail address whether one is a passive listener or authorized to ask tough questions. Make sure the duties of scribe are clearly outlined from the practicalities of paper and pen or laptop all the way to details as to whether a summary transcript would be useful. The partner must always remember that the patient is the one with the disease as they become familiar with laws regarding privacy of medical information and learn to keep their opinions to themselves unless specifically asked. To those who understandably and naively feel this is a waste of precious time and too intense an endeavor, I say think again:
- The anxiety mitigating impact alone on a now engaged and in control patient is God sent. The literature suggests the diminishing stress gained though being engaged may diminish overall suffering and positively impact quality of life. The more aware and in tune patient will bring in any new signs and symptoms to their team with greater precision and speed and that is always good.
- Patient and health care team are enmeshed in an intricate and not always predictable dance. Suggesting the patient should have no record of emotions, moments, and meanings that give them context in the greater therapeutic meaning borders on cruelty. Listen, learn, engage, and if you cannot understand, bring in that specially selected scribe to help