The suspicion that cancer is not merely a rumor is a an incomparable roller coaster ride taking patients on a psychological and emotional gauntlet from fear and panic on one hand as well as becoming embraced in love, deep understanding and opportunities for insights and self reflection. Whether it be a lymph node found on physical exam, a new skin growth or lump in the breast of suspicious prostate ( and the list goes on), the not so routine highly suspicious clinical complaint; the typical “oh it’s nothing” becomes something and with it comes anxiety.
For millions each year, eventually some type of biopsy for tissue will be needed and in short time your “nothing” is 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 tricky and be dealt in a careful manner customized for the individual patient and family.
Irrespectively, there are some fundamental and universal ground rules when approaching that point where suspicions of a cancer diagnosis are dismissed or well founded 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”. Crude but spot ON..
Never, ever, label a patient with a diagnosis of malignancy without absolute certainty. Always have tissue confirmation from a biopsy of some manner unless it is simply too dangerous or not possible- both highly uncommon situations. It logically follows that one should never, ever, pronounce a recurrence without the same degree of certainty. When we suspect the diagnosis, oncologists often have to work quickly and carefully behind the scenes. 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 that the primary or referring physician identify for the patient and family what roles 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. Patients are individuals; 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 isn’t a one size fits all endeavor.
When we suspect the diagnosis, oncologists often work quickly behind the scenes. They do not wish to step on the toes of the primary or referring physician and often guide the primary physician as to what the best diagnostic route may be for those for whom tumor is the rumor . 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. 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. Unlike most other fields of medicine, loss of patients from an oncology practice is often due to death. Cancer practices typically acquire new patients and follow them for at least 5 years and more often for life while maintaining close relationships with referring providers.
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, In Part Three Of Four to follow are some insights that may be enormously helpful for patients and their supporters
SUSPECT THE DIAGNOSIS OF CANCER
PART III OF IV
The first few days of 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 the 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. Patients trust less empathetic providers less and not being capable of being their own Dr they are left to themselves, not a satisfactory situation for anyone
You may think it is the worst thing to have ever happened to you. 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.
Turn anxiety into fear, fear of the known through knowledge and never stop learning all you can, as that knowledge is power in your fight. God has hard wired you for heroics; unbelievably. I have not seen a cowering cancer patient yet who totally collapsed refusing to being informed
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 pissed off.
It is very real to be shocked and 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 it 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 iit but get knowledge and the team built asap.
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 life. This is your trauma and trek; own it. This is a time in your life where the most frightening of all scenarios dropped on your doorstep. AND FOR THE MOMENT YOU ARE NOT IN CONTROL.
Understand 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. Demand information and experience your feelings but do not let them define you- best anti-anxiety medicine in the work.
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 issues needing attendance as well as the secretarial assistance needed to stay on top of all the tests, appointments their results and inevitable questions they will engender. . I encourage either a small hand held recording device or a trusted friend or family member who acts as a scribe to objectively write what was said, not felt, what needs remembering, not fearing.
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 so that the light of your soul and informed hope do not merely flicker, but shine.
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. Read it.