Looking Back Briefly

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I hope you'll bear with me while I step back to the time after I left hospital which I described with in blog post number 7,  "Hospital and Gradual Recovery".   Pain medication tends to lead to memory blanks and there are times when I remember events that happened long after the event and, because my purpose in writing this blog is to inform, there may be times when I zip back and fill in a blank if my memory of an event suddenly grabs me.  In this case, I have remembered how I came to be referred to my first oncologist.  Many people who have or have had cancer will be aware that not all oncologists are created equal and there are times when we have to follow our instinct if something doesn't feel right.

After I left hospital there were so many appointments that I can no longer remember the chronological order but can only discuss them as they come to mind.  There were post-operative visits to the breast surgeon to have my drains checked and removed once they were no longer needed.  This, as I've said, can take up to three weeks  and, if drainage has not been completed at that stage, the last one will be removed despite that in case infection sets in.  It's a weird feeling, having a drain removed but definitely not painful.   From then on it's necessary to have the fluid drawn off by a needle and syringe.  This isn't as traumatic as it sounds because all the nerves in the area have been severed and I didn't feel a thing!

Once that was over it was a matter of time and healing and coping with the continuing pain of the stress fractures in my ribs and spine.  At an early post-operative visit the breast surgeon told me I would need to be booked in for radiation in order to avoid skin metastases from occurring at a later date.  He booked me in to begin a series of radiotherapy five days a week for five weeks, commencing six weeks later.  I knew I would be in no fit state to carry this out but I didn't argue, just nodded meekly and decided I'd worry about that when the time came.

He also booked me in with an oncologist and this is the reason I've interrupted the continuity of posts to include this one.  It's my understanding that a breast surgeon's job is done once surgery and post-operative follow up has been completed.  Speaking for myself, a lay person, I was expecting to be given a few names of oncologists that the surgeon recommended but also to be given the opportunity to ask around before I made a final decision.   However, I wasn't given that choice and it could have been highly detrimental to the future I hope to have.  He checked on his computer and then turned to me and told me he'd made me an appointment with Dr XYZ  (no names will be mentioned) and gave me the date and the time to turn up for the appointment.  Being new to this game and still in shock, we (my husband, son and I) expected that he would have chosen that oncologist in my best interests and, to be fair, I'm sure that's what he did, so we complied.

My first experience of an appointment with this oncologist was that I found myself in a temporary building, with the waiting room and office all in one small room.  The receptionists' desk was simply a counter across one wall, with three receptionists crowded along it.  Patients in the waiting room could hear everything the receptionists discussed openly about other patients, both on the phone or to each other.  Full names, addresses, details of operations, state of health, scan and blood test results - all were discussed in detail and nothing was private.  I was horrified!  These conversations should have been held in private in a separate office.

For that first appointment, I waited for three hours to see the oncologist.   Remember that I was in excruciating pain, unable to be out of bed or to sit up unaided, I was nauseated and had low blood pressure from pain medication that I was unused to.  I'm not the complaining type and it was obvious there were at least twenty patients to be seen before my turn so I somehow sat there, prepared to wait patiently because I had never in my life seen so many obviously very, very ill people in various stages of treatment.  I've had a lot of appointments with specialist consultants in my time and know that it's impossible for them to always be on time because problems crop up and there are often urgent cases needing to be squeezed in.  Some patients go over their allotted time for various reasons but three hours is excessive for patients to wait who are in extreme pain and, if this is something that happens often, a more comfortable waiting area with supportive chairs should be provided, not small, hard, upright chairs with as many squeezed into the tiny area as possible.  Oncology is very different from a lot of other specialties.  Patients have special needs that should be met.

At that first appointment I became aware that very ill people rarely complain.  They know that others are also ill and in pain and they are actually too sick to make a fuss.  There was not one patient or support person who uttered a word of complaint.  Instead there was a general atmosphere of caring and concern for others.  No matter how bad we felt, we were all prepared to lend a helping hand to each other if we could and, when I entered, my drain bottles in their little blue bag were a badge which demonstrated which stage of treatment I was at.  It was clear by the tiny steps I was agonisingly taking and the way my husband and son helped me into the chair that I was in serious pain and I could feel waves of sympathy coming at me.  It was palpable!  I was to learn that this is normal and this was the beginning of my understanding that most breast cancer patients have a feeling of connection with each other.  This is an experience that is impossible to imagine unless you've had it.  I've also observed that cancer patients try very hard not to reveal their discomfort and, if they do give in to it in public, you can trust that it's real.   I had never publicly wept because of pain before this but I found that, frequently, tears would be streaming down my face from the inability to find a way of sitting that didn't hurt badly.  At this stage the only time I had any relief was lying flat in bed, immobile.  The pain and the self discipline it took me to stay in that place for three hours is still etched in my mind.

When it eventually came to my turn to see the oncologist, at first I felt very confronted.  She certainly didn't sugar coat anything for me!  Usually I prefer the straightforward approach but this was borderline aggressive, although not in an unkind way.  I tried very hard to like her because at that stage the news that my cancer had spread so much was still uppermost in my mind and the thought of it was raw.  I was prepared to like and trust anyone who would help me.  She outlined what her management of my cancer would be and explained that, because it is so highly hormone positive, the treatment would be to remove all oestrogen from my body; oestrogen being the hormone that the cancer was feeding on.  I would be taking a drug called Letrozole, one a day, for the rest of my life.  Chemotherapy was ruled out at this stage and would only be called upon if the cancer progressed and spread to my organs.

My husband was waiting for her to mention a new drug he had discovered through our first hand knowledge of medical research but the topic wasn't raised until he raised it  (on behalf of the zombie sitting next to him, who was half dozing throughout most of this conversation!).  The zombie came 10% alert to listen to the answer though, which was that there was a trial in my city but that I wouldn't be a candidate for it and she dismissed it out of hand.  Her concern,  she said, was the cost,  which was $7,000 for each month's supply.   As the drug wasn't (at that stage) available in Australia, we would need to go overseas to obtain a three month supply regularly, as and when it was needed if I couldn't find a place in a trial.   We had read so many excellent reports about this drug that we would have sold our gold teeth if we had them to get hold of it but she assured me that I could live quite well for a few years on Letrozole alone and "when it failed we will try another drug and I should manage to live for a little longer, until we run out of treatments".    For an optimist like me these words fell upon my ears like lead weights.  For my husband they represented fighting words; he would get this drug for me no matter what he had to do.  

She told us that her approach was to "keep ahead of the cancer and not let it control us" (there are parts my zombie brain remembers perfectly) and that, if we could obtain the drug, Palbociclib,  or Ibrance as it's marketed under in some countries she would prescribe it for me for three months and then we would wait until the cancer progressed (i.e. spread further)  and, when that happened, she would prescribe it for a further three months and follow this regime for as long as I lived.  We all nodded politely, filing this away for private discussion later.  What we wanted was the optimal treatment available and this didn't sound that way to us.

I continued to see this oncologist throughout the next month, which was December, feeling more and more disenchanted with each visit.  OK, it was Christmas so the office staff members were excited; the tinsel was up and they all wore Santa caps as they danced around the office excitedly.  To be honest, I've never seen adults so excited about an office Christmas party before and certainly not in a waiting room  filled with women and one very embarrassed and uncomfortable gentleman patient in all stages of breast cancer, some quite obviously terminal.  They made it very clear that they couldn't wait for us all to be out of there so they could get on with the party, as they danced in and out of the waiting room with plates of food from the party, which had started without them.  We patients were clearly an inconvenience.  The moment when one staff member, who was holding a platter of smoked salmon, stopped to chat with another, who happened to be standing next to a woman who had had chemotherapy the previous day and who was very obviously terribly ill,  (you can imagine what this did to the lady's nausea level)  was the moment we three (my husband, son and I) exchanged an unspoken agreement that I would be changing oncologists.

We had another reason for wishing to change oncologists as well.  When I asked about pain management, she actually laughed and, waving her hand in a dismissive way, told me I could take Panadol if I wanted to.  We heard her out in silence as we left the room.  We knew then that I needed to find an oncologist with a more empathic approach, whose staff reflected this.

As soon as we arrived home, my husband began to research the drug, Palbociclib, to see whether it would be possible for me to be a candidate on the trial that the oncologist had dismissed out of hand, saying I was unsuitable for it.  Two phone calls later, he was called by the consultant who was managing the trial and told that I was a perfect candidate for the trial and he'd like to start me on it immediately.

This diatribe serves a purpose, as you've probably realised by now.  If your instincts are screaming at you, or even whispering, that something doesn't seem right, listen to them!

Palbociclib had been the subject of a double blind trial in the US three years previously, double blind meaning that half of the recruits to the trial received the actual drug, whilst the other half received a placebo in order to compare the effect of the drug.  It was so highly successful at stopping cancer cells from finding a new source of oestrogen that the trial was stopped after a short time because it quickly became clear that the recruits who were receiving the placebo were lagging dangerously behind those who were given Palbociclib.  The life span was clearly longer for those given Palbociclib, making it unethical to continue giving the placebo to the others.

Palbociclib, in that trial, was taken in tandem with Letrozole, an aromatase inhibitor, the drug that removes oestrogen from the body.  Letrozole has been an effective drug for many years, with one problem - that eventually, as I've mentioned, the cancer cells get wise to it and find a way around it.  Palbociclib stops that.

I have to repeat here that I'm not a medical person so I'm describing this from a lay person and patient's understanding.  The process would be better described by a qualified person therefore I'm only giving the outline of it as I understand it but I do know that those patients who have been given Palbociclib in tandem with Letrozole have, during the time it has been available for use,  been granted a longer life span by months and, in time it will most likely be proven to be years.  Because it's a relatively new drug, it's impossible to pinpoint exactly how long the average amount of time Palbociclib adds to the life span but I hold hope that my own life will be prolonged by years, not months, by participating in the trial I've been added to.

This is, more or less, where I was up to when I described the way the drug, Palbociclib, is used in blog post number 7, Hospital and Gradual Recovery.  Before I started on the trial there was another round of blood tests and a CT scan to provide a baseline for my blood levels and to be certain there were no metastases in my organs.  Fortunately, I was given the go ahead and I was able to begin once I had been given five days of radiotherapy in an effort to relieve some of my back pain.  Unfortunately, the radiotherapy had very little therapeutic effect and I've had to continue taking high doses of powerful pain medication to this day.  I've been told that this will be necessary until the tumours regress (i.e. shrink) and my bones can begin to heal.

I've gone into a lot of detail because I want people to know how important it is to feel comfortable  with your oncologist and to have faith in him/her.  We put our lives into their hands..... ~


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