Rating my pre-cancer treatment

I have always wondered if it would have been possible to arrest the progression of my disease while I was still in the pre-cancerous phase.  Not being medically trained makes it impossible for me to offer a clinical opinion on the matter.  But since it has been quite a few years that I have been on this journey, I have picked up anecdotal and other information along the way.  I will try to reflect some of this information below - presented as a score card.  It is not intended to criticise those who guided me but rather to document the insights gained, to present a view of how it could have been done better, cheaper, with less lasting damage, etcetera.  My hope is that is will have value for you.

Score Card for treating me pre-oral cancer.  (Five equals Excellent, one equals Poor).

A.  Surgical Intervention: = 1

The first item to rate is the number of lesion excisions or surgical interventions.  I had five excisions over a period of two years before I was diagnosed with cancer.  One of these was a complete dissection of my tongue from the tip to the root in order to remove the biggest of many cysts all over my tongue.  This partial glosectomy for a number of pre-cancerous cysts of my tongue and floor of mouth had no real or imagined potential to reach all the dozens of distributed small cysts.  I can’t help wondering if surgeons who perform glossectomies will not one day be remembered with the same horror that we nowadays feel when thinking of surgeons who performed early frontal lobotomies in the previous century. The sad legacy of this operation is loss of function - swallowing and speech is never the same again.

The result of this procedure was that my tongue ‘shrunk’ - due to scarring and muscle atrophy.  It became so short that I cannot lick my lips any longer.  From a speech perspective, all sounds and words that need the tongue to work with the front teeth are compromised by such surgery.  It makes it difficult to swallow without choking.

I later also had an invasive biopsy of the root of the tongue – coming in from the tongue surface and extracting a tissue sample near the root – about the size of my big toe nail.  There was no benefit in this type of deep biopsy as the muscle was compromised, scar tissue formed and my swallowing was never the same again after that.  The pathology analysis was not different to the surface biopsies, but the price paid in terms of lost function was very dear.

We consulted with a range of other professionals after becaming concerned that my initial surgeon, GF, was a little too eager to slice away at my tongue.  One of those experts was a member of a preventative tumour practice.  They wanted to treat the lesions and ulcers on my tongue with bleomicin therapy (tumour antibiotics) to contain spread into the soft tissue.  Their prediction was that I had about six months left to live unless I followed their recommended treatment.  Needless to say their fees were steep.  I can only thank my lucky stars that I ran from that practice in a hurry.  

I met up with an interesting plastic surgeon, KB, who offered to be my case manager – for a significant fee.  He was of the opinion that his type of speciality positioned him very well to co-ordinate other medical experts, although he would not personally treat me.  He did a fairly invasive biopsy of the floor of my mouth – after which I headed for the hills.  His fees for the biopsy exceeded the total of the two previous excisions and I realised that greed is as much part of the helping professions as in other walks of life.

The operations and invasive biopsies did not solve the problem, I would rate this criterion a one.

B.  Surgeons Operating Solo: =1

Apart from the fact that I was initially treated by young surgeon, who was a brilliant technically, but who maybe could have done with a few grey hairs to better determine when not to cut, I think the problem was that in South Africa at the time, cancer was treated by one or, in exceptional situations,  two individuals collaborating on a case.  Most often the surgeon and the pathologist were the only people who diagnosed and recommended treatment.  It is my conviction that I would have been better served by being referred first to a physician, someone who was willing to investigate the cause of the problem, rather than immediately resorting to surgery – purely because that is what the person knows best.  My view in retrospect is that an experienced team of medical staff should have been assembled to treat me and that decisions should have been made after deliberation and by consensus of the team.  I have thought about this matter long and think there is room for a personal case manager in cases like these.

This specialist case manager should assemble the team and ensure that they work together and to treat the patient holistically and humanely.  There needs to be oncologists, surgeons, pathologists, specialist physicians, physiotherapists, dieticians, psychologists, nuclear medicine specialists, speech therapists, dentists or peridontists, dental technicians, and specialists representing other necessary disciplines, all involved in the treating the patient.   Perhaps the natural conflict generated by many different points of view in such a multi-dissiplanary team is what promotes fresh perspectives, innovative solutions to traditional problems and better odds.   It is important that the team members not merely agree a treatment option, but that it is debated, critically evaluated and found to be the best option given all possible considerations.   

In addition, there is room for the allied medical workers and spiritual carers, such a acupuncturists, Reiki practitioners, the clergy, healers, other religious or traditional healers, homeopaths and so on.  These people can all play a vital role in helping the patient find their way through a very confusing and a very dark time in their lives.  They help the patient by promoting optimism,  well-being, giving them a sense of acceptance, belonging and a purpose for carrying on. 

Medical experts are just people, some of them compassionate and caring, others with rather large egos.  When working in a team, there is a possibility of experience tempering rash decisions, non – evasive therapy being given equal credibility with invasive action, patient expectations being managed effectively and preparatory work being done in case of the need for later cancer treatments and surgery.  One example is for teeth to be extracted before they can make trouble post radio-therapy.  And for the fitting of comfortable prosthetics, dental implants or dentures before cancer treatment commences.  In my case, particularly my first surgeon worked alone, did what he thought was necessary and often left me very confused about his treatment plan.  All right, I know that I am being a little generous by implying that he had a plan - but it is a fair assumption under the circumstances.  It would have been great if he had shared that plan with me.  I score this a one for consultation, teamwork and overall holistic approach.

As for the proposed case manager, I think a survivor of a similar cancer may be a very good candidate to lead or advise a patient support team.  Personal experience helps to manage expectations and it is motivational for the patient to have a case manager or coach assigned who has personally travelled a similar journey of their own.  It is important that the person who manages the case must fill the role of a leadership.  Experience is more important I think than medical qualifications in the role of a coordinator.  In my experience, the GP, who in South Africa is nowadays earmarked to fill the role of case manager in complex cases, is a big ask.  GPs are nice people, but unless they have had an encounter of the personal kind with the big C, they are as informed as anybody else.  I am advocating specialised cancer leadership rather than generalist leadership – and whilst a GP can be a specialised leader, this is unlikely while they are running a full time and general practice.

C.  Patient & Family Education: = 1

An area that was largely overlooked in my case, was patient education.  Certain lifestyle changes might have been enough to halt the progression of the disease.  I knew that smoking was not a good idea, but I got no real assistance in kicking the habit – no counselling or advice on how to do this.  The result was that it took me a rather long time to actually wean myself off my ‘social smoking’ behaviour and the occasional cigar.  Ditto about the dangers of alcohol.  In fact, one of my doctors encouraged a drink of alcohol at night.  Which in principle is Ok for healthy folks, but desperate people easily grab at crutches to cope emotionally if there are no counsellors or therapists intervening.  The link between alcohol consumption and oral cancers was never pointed out to us and I can recall how accessible a painkiller alcohol became when around the dinner table the pain got bad. 

Family members have the best intentions but unless they too have been educated,  sometimes all they end up doing is making matters worse.  I remember a relative asking me why I did not quit smoking when I had a problem with my tongue and I just looked at her.  She lacked insight and more importantly, empathy.  For me, excessive stress, knowing every day that these changes in cell structure might turn into cancer any moment, lead to the use of various coping mechanisms:  Rationalisation: “only one cigarette after dinner can’t be bad”.  Denial: “Of course I can have another drink – the doctor said I could have one, so it can’t be bad for me”.  Bargaining:  “I’ll get more sleep if I finish this or that task at work.  But only if I finish it.”  “I’ll eat later, when the pain isn’t so bad”.  These lifestyle issues were overlooked and under-explained in my case.  Sure, they were mentioned.  But they were not managed.  I was a patient, mostly under the influence of opiates and sometimes combined with alcohol.  My judgement was poor to say the least.  I needed leadership.  I needed my husband and loved ones informed about how to help me.  Patients are ignorant and need detailed explanations and instructions to get them through the tough times.  And they need someone to talk to who understands what they are going through and who has experience and advice to share.

At the time, we were given no plan or clear idea how we could possibly arrest the progression of the disease.  Nobody told me what to expect or how I could influence the outcome.  Neither were we prepared for the possibility of a positive diagnosis of cancer.  In reflecting back on that period of my life, I mostly remember being in limbo – not knowing which direction fate would take me.

It might have been an excellent time to catch up on cancer research.  The Internet was starting to offer published research and there were plenty journals and medical reports available providing good insights.  Although these materials would not normally find their way into the average home, with a little encouragement and leadership from a medical support team we might have grasped the significance of the early studies on the effects of lifestyle, how to best take care of oneself, the impact of sugars, weight management, alternate medicines.  We were not adequately informed about the role of anti-oxidants, vitamins and a diet to support my healing.  I mostly survived on sweet diet shakes because they were easy to swallow– and my weight ballooned.  Doctors mentioned in passing that I had to watch my diet and keep it soft.  They said I must keep up my strength – that it was more important than worrying about weight gain.  Bottom line is that these words were placeholder words -  used by someone who knows what they mean in great detail but who either do not have the time or the interest to explain it to someone else.  This is another reason why a case manager should be involved – to inform and educate the patient and their support structures.

D.  Physiotherapy = 1

In the period following the various excisions of lesions on my tongue, scar tissue formed in my tongue and on the floor of my mouth.  I discovered much later that massaging the scar tissue could have softened it, preserved muscular function and improved blood supply to the area.  This applies to most types of surgery – but very specifically to oral surgery.

I score this matter a one.  My medical support team either did not know of, or discounted the role of physiotherapy in managing and stretching scar tissue after surgery and I have suffered unnecessary loss of function and permanent discomfort as a result of not having had this therapy at a time when it could have made a significant difference.

Today I have physiotherapy once a week to manipulate the soft tissue and underlying musculature and it brings great relief in terms of headaches, unclenching my jaw and  permitting me to open my mouth sufficiently to feed myself healthy food.  I consider physiotherapy critical to my quality of life and still am amazed that none of my medical experts ensured that I got this life-enhancing therapy in the early days, when it could have made a far bigger long term difference.

E.  Psychological Counselling = 1

In the pre-cancerous stage, I could have done with gaining some control over my life.  It would have made me feel better, less of a victim.  Planning the future, putting together a therapeutic schedule, arranging a list of experts to consult with – all these activities give one a sense of being in control.  Yes, the big C is staring you in the face, but you still have a few aces up your sleeve.  The game is not over; you still have a fighting chance.  Counselling also prepares one to cope with bad news – should it arrive.  And most of all, it prevents you from fearing that all the worst cancer stories are going to happen to you.  When you think you are in control – even if it is just control of your appointment schedule, you feel empowered, it is an environment in which hope can readily survive.

Pain management though hypnosis, visualisation scripts, breathing exercises and relaxation can sometimes be as effective and even more immediate in bringing relief than certain drugs.

Simply learning typical resilience skills can be beneficial, reducing the amount of stress which may contribute to the change in cellular structures and helping to keep relationships around the house at a sane and supportive level.

I was prescribed anti-depressants by my GP when I tearfully turned up at her rooms one day because I had had an emotional melt-down the day before and could not stop crying.  Perhaps this was an opportunity missed to refer me to a counsellor to help me find the right type of chemical support for my type of depression, coupled with supportive talk therapy.

During the pre-cancerous stage I did not have access to a counsellor and therefore score the criterion a one.  It seems so child-like in retrospect, but I only did what the doctors told me to do.  If they said I must go for surgery, I went.  If they said I must have a biopsy, I had one.  I did not use any over the counter medicines and took only the drugs that had been prescribed to me.  Some of this was because I feared that doing anything other than what the doctor told me to could make matters worse – something which most of my medical experts went to great lengths to emphasize.  But also because I was numbed – shocked, incapacitated by having my life turned inside out and having no certainly.  In that near infantile state, the wise counsel of an experienced cancer psychologist could have returned me to my former self:  a strong, intelligent and assertive person who asks questions, argues using logic and demands guarantees and proof before handing over responsibility for their body to others.  And that is really what every pre-cancerous patent should be like – totally in charge of their own body and life, a force to be reckoned who earns the respect and admiration of medical staff and who scares off thoughts of cancer.

F.  Speech Therapy = 2

Whenever surgery impacts speech, the patient needs a speech expert to help them recover what it possibleof their speech.  I can say this unequivocally today, having spoken to many oral cancer survivors.  For most of us, when we lose or have function loss in respect of our primary means of communication, the impact is not simply limited to difficulty in speaking and being understood.  It can easily lead to social isolation, withdrawal, depression, and if left for too long, worse permanent damage than what was absolutely necessary.  In this regard my surgeon did not think that I needed help, even when I asked him about it.  He felt that eating and talking would be adequate exercise to mobilize my tongue. 

Given this advice, I coped with speech and eating as best I could during the time that I had a series of operations and was left with declining function and increasing scar tissue over a period of two years.  I coped so well that I taught myself to speak in a manner to compensate for the sounds I could not manage, and I leant to speak incorrectly.  My diction, which was previously fairly good, became haphazard.  As I grew fatigued through the day, I made less and less effort to correctly articulate and eventually fell into lazy pronunciation all the time.  My family and friends tried to follow me, but no expert feedback or advice was available to guide me along the best way to make the most of what remaining function I had for speech.  We all know how difficult it is to unlearn habits.  When I eventually met up with a speech therapist many years later, I had great difficulty improving my speech, and I had missed a window to gradually adjust my speech in tandem with my changing oral pathology.  I think a few well-placed words of feedback could have made a significant difference in terms of learning to make sounds in a different way when the normal way of sounding became impossible.  In the absence of such guidance, I score this criterion a two, as I had taught myself – albeit the wrong way.

In later years I met up with a very smart acting coach, who taught me how to compensate for speech problems with facial expression, making sure I always face my audience, speech supporting hand gestures and body language in social situations.  These skills are valuable and universal – I even use them on my dogs, who have learned to follow my silent commands and gestures.  I finally understood what was meant by the adage that the greatest part of our communication is not verbal, and I have become aware of many ways in which to exploit non-verbal communication.  A raised eyebrow, shrug of a shoulder, smile or even hands folded together in a mock-curtsy can stand in for ‘thank you’.  I have now learned how to use non-verbal communication skills to much greater effect and I wish all folks with speech problem could learn the basics too – it is simple and these little gestures really go a very long way to make you appear ‘normal’ when your speech is slurred or otherwise indistinct.

I have lost my ability to do formal presentations and public speaking.  It is barely possible for a non-English (first language) speaker to follow what I say over the telephone.  This leads to much frustration on both sides of the phone.  I have become reliant on my husband to handle call centre agents, shop assistants and other strangers when there isn’t direct and focussed visual contact.

Since the partial loss of speech I have stopped making many new friends and acquaintances.  My  ‘old friends’ adjusted to my loss of function over time and they can still comprehend my speech, whereas newcomers have less chance of following what I say.  A level of social isolation has been the result, and I feel that whereas I had previously been able to spontaneously chat up strangers, ‘work a room’  and connect comfortably with people I had never met before, I have become more reclusive.  I have lost some spontaneity and I have less social contact than I would like to have.

My self esteem took a dive when I realised that folks were not that interested in making a effort to understand what I had to say. Some folks speak S L O W L Y or LOUDLY - in the mistaken belief that I am somewhat retarted or deaf.  If you have lived as a leader, as someone in charge, then suddenly being on the receiving end of this type of patronising treatment, is cruel, it evokes an animated emotional response to being disrespected and is not a good start to new relationships. I now regocnize when my anger flares up in situations like these and I breathe and let it go.  But it has taken time - and learning to get to this point of acceptance.  But it still hurts like hell during unguarded moments.

G.  Career Advice and Financial Planning = 1

Today I am, despite a number of university degrees, years of international experience and a keen interest in learning, mostly unable to find work in the South African job market.  Most jobs for which I am qualified require a level of contact with staff or clients.  At the time that I had the first excisions, I was at an earlier stage of my career, and a change of direction at that time could have been managed without too much loss of seniority or income.  Older now, with significantly less function, it is not so easy to re-skill.  I have learnt to write more than before and this has worked well for me.  At present I am building a new career after a few years of hit and miss in a range of areas.  I am excited about this, but I regret the time wasted in trying to make it work in my former career, where I encountered much negativity.

Like everybody else I have to provide for my old age and having to now move into a new career at mid-life results in beginners salaries and often not being able to leverage my considerable experience.  The South African job market is recovering  post apartheid and a frenzy of job reservation for ‘previously disadvantaged’ folks has ensued – it will be a while still before they can shift into gear and focus on jobs for oral cancer survivors.

Career counselling would have benefitted me by getting me to timeously begin study and work in a direction where my loss of speech is not a disadvantage and to allow me to integrate into a new industry and community in order to network and find a place to belong. 

With adequate time to prepare for a career switch,  it I would have managed to make better arrangements for retirement.   A number of fears persist about my old age, which I am coping with by squirreling away as much as I can.  I fear that I will need specialised care at premium rates because I now have unusual oral anatomy which presents a problem with swallowing, being able to communicate my need and cleaning.  My insurance policies do not cover this type of disability and as a consequence, there is now an urgent rush to prepare for the next phase.

Having not had the benefit of career or financial guidance at the inception of my illness has been costly for me and my husband.  Our previous plans were based on living a ‘normal’ dual income life and then retiring to a condo on the beach with our friends.  The shortfall in medical bills that was not covered by our insurance and the years thereafter in which my earning potential has been compromised put a spanner in the works.

I believe that the type of medical insurance cover I had should have changed once I had been diagnosed as pre-cancerous.  My discovery was that my medical scheme did not pay for much of the expensed up to the time I had been diagnosed and became an oncology patient.  My husband and I were still playing catch-up after his medical expenses and although we were insured with what was touted as being the best medical scheme in the country, our personal contributions covered most of the expenses in my pre-cancer stage.  For example, my scheme only paid for one MRI per year – and the cost of these scans are high.  I required up to three scans in one year to track the progress of the lesions and the bulk of these I paid for myself.

So perhaps one’s case manager should include a financial advisor and someone to help with re-skilling or a fresh career start on the support team.  It is difficult for the patient to focus on these matters mid-surgery and mid-treatment, so an investigation of their financial and career opportunities should be undertaken to bullet-proof their future earning potential.

Since I received no guidance in this regard, I score this criterion a one.  The patient’s job is to get well.  If they are like I was, they will not be in a position to research financial alternatives and the guidance of an expert can go a long way to ensure quality of life for the time ahead.

H.  Holistic approach = 3

In summary, when one is in a pre-cancerous stage, it is extremely important to try and co-ordinate all aspects of the patient’s life towards the best possible outcomes – and not to focus only on the area affected by possible cancer.  Patients have to be able to work and live again, as there is life after cancer and one has to believe that they will survive the ordeal at this early stage.  If the progress of the disease is arrested, it is possible that life saving surgery could have impacted normal life and function to such an extent that the patient’s recovery is not all that different from that of a recovering cancer patient.  Educating the patient and their relatives is of critical importance – to manage their expectations and to focus them on being able to get better and to provide for themselves again after they have beaten the illness.

It requires a team of people – a proverbial village – to look after the patient.  While the patient may act and even think normally most of the time, they lack experience in this field, they need coaching, guidance and being taken care of.  Our society has thus far done much to deal with the medical issues – and the number of oral cancer survivors stands in clear testimony to this fact.  But there is room for all to focus on life after cancer.

How will the patient eat, confidently appear in public, clean their mouth, earn a living, have normal relations with loved one and participate effectively in society – all these questions need to be asked and answered and a comprehensive strategy needs to be documented with the patient for Life After Cancer.

In my case, I would have been enthusiastic and motivated about re-inventing my life and choosing a new career, a new appearance, a new place to live – all future-oriented activities which would have made me optimistic and which would have improved my chances of warding off actual cancer.  But I could not have done it without a  support team – a village around me to help me understand what the journey ahead had in store for me.

I made decisions to see different experts on my own.  This was because I began suspecting that not all experts had my best interests at heart. Therefore, I score this item a two, based on the fact that different experts were involved, but their efforts were not co-ordinated.

My next post will cover the first phase of Oral Cancer – my initial treatment, my experiences and  how my family coped with my experiences.