Tuesday, June 12, 2007

From June 11 to end-June, 07

Today I met my oncologist, Dr. F. I understood from Hannah that today was cancer newbie day and that I would be well advised to set aside a few hours for it. When I arrived at the oncology department, I was met by what can only be described as a hostess, a woman in civilian dress (i.e. no white coat) who greets the newbies as they arrive, and shows them where to pluck a number for the queue and which clerk they need to approach. She also led me to the doctor’s room and treated me to a short testimonial of the doctor’s stellar qualities.

Dr. F went through the history of my lump and was actually able to locate it on the mammogram. She said that some 10% of cancerous growths are missed in mammograms. Statistically, my situation is excellent and treatment will probably be radiation and hormones, or rather anti-hormones, because treatment with Tomoxifen blocks the estrogen in the body from reaching the receptors in the breast. I signed a document allowing the delivery of a sliver of my lump (I’d assumed it had been thrown away but apparently it’s kept and frozen) to be sent to America for tests to determine if my chances of survival would be substantially increased by undergoing chemotherapy. This test, called Oncotest (see and excellent animation of how this works by clicking Oncotype), is paid for only by Kupat Holim Clalit, one of the rare occasions when I am actually pleased to belong to Clalit instead of one of the other health funds. There is a slight chance, she warned, that they could discover something hitherto undiscovered in the local laboratories. The results will be available in two to three weeks. More waiting!

Dr. F did not really endear herself to me – she directed most of her comments to Gabi, probably because as she too is a doctor, she is more qualified to understand her explanations that I, a mere patient, can. Also, she started answering my questions before I’d finished asking them, which always irritates me. However, this woman’s knowledge and expertise is going to keep me alive so I’m giving her the benefit of the doubt for now.

I made an appointment for the radiation doctor. The secretary asked which breast had been affected with cancer and I asked why that was significant – was there perhaps a different doctor for each breast? – but she explained that the radiation setup would have to be adapted to account for the presence of my heart in the vicinity of my left breast. I hadn’t thought of that – the idea of fried heart is not appealing.

As chemo is carried out before radiation, I’ll have to wait to see what Oncotest will report. If they recommend chemo, I’ll have to begin it right away and then only after it's over begin radiation treatment. If they dismiss chemo, I’ll be able to start radiation treatment with no further ado.

Looking around me at the women who are at different stages of their treatments, meeting my oncologist, setting up appointments and generally moving through the minutiae of hospital and medical procedures forces me to come to grips with the fact that I have cancer – something I tend to forget or perhaps sublimate during the course of a day. It’s still frightening, my stomach still gives the odd churn or two, but I’m beginning to accept that it’s now a part of my life.

June 14, 2007. My Radiation Therapist

My radiation therapist is Dr. Bernstein. I had some idea of what to expect from today's meeting because Hannah (the oncology nurse) had loaned Gabi a DVD of a film featuring a woman who'd undergone radiation therapy and the different stages involved. I wasn't happy to see that large machines with forbidding-looking moving parts, reminiscent of the one that so traumatized in the bone mapping test, were used. I asked a mass of questions and Dr. Bernstein preceded each answer with a drawing of a breast on his post-it pad. It consisted of a large half circle on which he drew a smaller half circle, topped off by a thick dot to represent the nipple. I wondered if he'd perfected his breast doodling skills in medical school.

Radiation therapy is designed to target and destroy cancer cells that might still be lingering in the area to reduce the risk of recurrence. As Dr. F had done, Dr. Bernstein threw a lot of statistics at me. Breast cancer treatment - as with other diseases - is based on research studies which, in this case, were conducted over the course of the last 25 years. Women are divided into different groups and conclusions based on which groups produced the most survivors over the longest period of time are drawn. There are so many factors involved in determining different treatments, including whether a women is pre- or post-menopausal, the size of the lump, the type of receptors, lymph glands, age and so on. All I really needed to know was by what percentage the recommended treatment would ensure my long-term survival and would it hurt.

It seems that yet again I am lucky in that, because my lump was close to the surface, radiation will be delivered by an external beam which produces fewer side-effects than other, more invasive forms of radiation. There will be a course of 25 treatments plus a booster of eight treatments, carried out every day, five times a week. Possible side-effects include blistering and discoloration of the skin, tiredness and weakness. According to the head nurse of the radiation department, a former Brit called Alison, 70% of women who have radiation therapy continue to work throughout.

June 20, 07. Branded

I find it so hard to separate my emotions from events and be comforted by practical and rational conclusions. Instead of being calmed by the large, expensive machines that are mobilized for my treatment, the sheer grandeur of the machines causes me an even deeper sense of disquiet because they serve to underscore the life-threatening nature of my disease.

Today’s simulation was to prepare the coordinates for the radioactive beam that will be delivered to my breast during radiation therapy. As the cancer was in the left breast, the ray needs to be precisely delivered to avoid nuking my heart.

Everything proceeded just as it had been described in the DVD – with the one exception that I was not given a gown to wear to walk the distance from the changing room to the table. Personally, I never fully understood the need for a changing room if the intent is to emerge half naked anyway.

The technician instructed me to lie down on the bed and place my arms on a red plastic block above my head. A large mobile platter moved over my head and hovered over my chest. From within the platter, what sounded like metal plates began to whirl and a yellow light flashed on and gazed at me. It lasted about a minute, maybe less. The procedure was then repeated a second time. I noticed interlocking red beams on my body.

Another technician joined the first and together they tattooed three different points on my body, each the size of a pinprick. Thus branded, I went home to wait for the results of the oncotest - and the question will be: do I begin radiation immediately or start chemo. If anyone is listening to me up there, please let it be the former.

June 24, 2007. Outraged

I’m shocked. This morning, I phoned Hannah, the oncology nurse, to ask if she had any idea when the oncotest results would arrive (tomorrow will be two weeks to the day that Dr. F said she was arranging for the sample to be sent to Oncotype). One of the reasons I asked was that on the day I visited Dr. Bernstein (June 14), Dr. F, noticing me waiting in line for the secretary, had mentioned in passing that I would have to pick up what I had understood were the results of the test myself as it was private. I was mystified by the comment but assumed that I would be enlightened when the results arrived.

Hannah asked if I’d picked up the sample and now, completely baffled, I asked if she meant the sliver of lump that I’d assumed had been sent to America following my meeting with Dr. F on June 11. She said she would call me back but she didn’t. She called Gabi instead.

Gabi began to explain that because Herzliya Medical Center is a private hospital they would not release a sliver from my lump to anyone but a member of the family. It transpires that the sliver, which I assumed would by now be post-analysis and my fate determined, had not even left Israel.

Two weeks of tension exploded in me. I went almost beserk with rage. I phoned Hannah again for an explanation of why the hospital had failed to inform me of the situation. Her explanation barely acknowledged hospital culpability for the screw up. I told her, inter alia, that I had asked her a question and her answer should have been directed to me – at this, she became a little more spirited in defending herself and said that as Gabi was in the vicinity, it was reasonable for her to give her a letter to fax to me. This of course is nonsense – she could quite easily fax me the letter herself - Gabi works in a different department.

As far as I can piece together, this is what happened. Hundreds of tests have been sent to Oncotype but this is the first time that anyone at Rambam tried to send a sample that had been extracted from a patient in a private hospital and they were therefore unaware of the restraints placed on them by HMC. Dr. F received a letter from Teva, which appears to be Oncotype’s representative in Israel, on June 12, one day after I’d met her for the first time, informing her that they’d asked HMC to prepare the sample and that they would let her know as soon as it was ready so that she could instruct a member of the family to pick up the sample and bring it to Teva. Dr. F’s casual remark to me while I waited in the queue on June 14 now became clear.

On June 17, Teva again wrote to Dr. F informing her that the material was ready and that I should be directed to collect it from HMC and bring it to Teva. This information was never relayed to me and if I hadn’t phoned Hannah this morning, I would still be living under the illusion that my results were imminent.

My rage is in part disappointment in a system that until now had proven itself to be so compassionate and efficient. I felt let down and betrayed and that neither Hannah, nor Dr. F, saw fit to accept responsibility and proffer an apology fueled my sense of outrage and frustration.

Nachum went to HMC to pick up the sample and took it to Teva. According to the clerk he spoke to, the results would take another two weeks.

Calmer now, I phoned Hannah again to ask her what the procedure was to change my oncologist. She suggested I wait until I get the results and then meet with Dr. F again. I suggested that I not wait because there is a total breakdown in trust between myself and Dr. F. The relationship between a patient and a doctor is of paramount importance – it says so in the pamphlets the hospital gave me – it’s a relationship where the patient should feel free to ask questions and be secure that her oncologist is acting in her best interests. Clearly Dr. F no longer fulfills that role. Again Hannah suggested that I not make hasty decisions, maybe because she feels culpable for this outrageous deficiency in performance. To my mind, Dr. F bears ultimate responsibility.

Today is June 24 – I won’t know until July 8 if I will have to undergo chemotherapy or not, more than a week longer than would have been necessary if proper procedure had been observed.

June 26, 07. Still angry as hell.

Although I entitled it Outraged, the account of the negligence exhibited by my doctor was a dry recording of events as they occurred. Two days later, I can better articulate how the breakdown in communication, the sense of betrayal, the isolation I felt when no-one would take responsibility caused me an immense emotional setback and serious harm to the coping mechanisms I've developed in order to function more or less normally.

The emotional impact it had on me was profound, more disturbing even than a negative medical report conveyed in compassionate and sensitive tones, would have been. It was an episode equal in intensity to the torrent of tears I produced on the evening after receiving my cancer diagnosis.

Tomorrow I will have recovered my equilibrium sufficiently to call the hospital secretary and take the first step to replacing Dr. F.

June 27, 07. In Limbo

Have I been rash? I phoned the department's secretary this morning and told her I wanted to change my doctor and she was taken aback when I told her that the doctor I wanted to replace was Dr. F. Apparently Dr. F has an excellent reputation and nobody has ever fired her before. She insisted I tell her why and seemed to understand that, under the circumstances, I could no longer continue with her. However, she has to bring the situation to the attention of the department head, who won't be around until next Monday and it's possible that I'll be assigned a resident and not a veteran doctor.

I asked her who would inform me when the oncotest results arrive if I still haven't been assigned a doctor and it seems it's up to me to call Dr. F's secretary. Or Hannah. I'm not sure what I anticipated (well, I was thinking positively and somewhere at the back of my mind I expected to hear, Yes, of course Ms Carmel, I'll immediately assign you to Dr. Dropdeadgorgeous Superman whose patients have a 100% survival rate), but I don't think I foresaw a situation where I would in effect be bereft of a doctor.

Everything seems to be on hold: the type of treatment I'll need, the doctor who will supervise it, my myriad questions.

I don't dare die from this. I know if I do, there will be those of you who will nod sagely and say, See, she didn't think positively!

NOTE: I have removed the name of the oncologist, and refer to her by an initial for a few reasons. First of all, the trauma I suffered at the time is receding to a mere nightmare and over time will no doubt segue into a bad memory. In relating the incident, I still come close to tears, but with less intensity and the feeling soon passes. Secondly, my unfortunate experience with her should not serve to prejudice her patients against her, especially as I would hope that the incident has put the doctor on alert and she now makes an extra effort to avoid similar incidents from occurring.

1 comment:

Adriane Schuster, M.A. M.F.C.C. said...

Hi Patricia,
I think your blog is doing a great service in explaining (and demystifying)what stages, processes and tests have to be done, or at least considered.
Hoping all your information serves you (and your readers) well in this rather challenging time of your life.
All the best,
Adriane Schuster