Over Radiation at Cancer Clinic

The independent investigation into the over radiation of cancer patients between January 9 and June, 2010, at the Brian Lara Cancer Treatment Center (BLCTC) can take months. In the meantime, patients are calling me, e-mailing me, saying: “What is the over radiation doing to our bodies? What are the interim arrangements for us? Apart from one free appointment we were told we have to pay for all our tests ‘as usual.’” For weeks, now I have been calling the BLCTC to interview the senior radiation oncologist for answers but have been blocked by their platitudinous PRO. This week, a patient sent me a letter she received from the BLTCT.

“Dear (Patient X)–

name withheld,

As you may be aware, the Centre has been very much in the news in the past week following the release of a report by the Pan American Health Organisation (Paho) on summary findings of its 2010 investigation into our operating procedures and administration of radiation to people in our care for the period June 2009 to June 2010. “The BLCTC deeply regrets this most unfortunate series of events which has resulted in a general misunderstanding of the administration of radiation in the care of cancer patients and the resulting emotional distress caused to all concerned.

“We assure you that our records and the results of continuous monitoring over the past 13-25 months show that at no time did patients receive any radiation therapy that was above tolerable dosages or significant enough to cause a misadministration or overdose of radiation that would be harmful to the patient; nor do any of our patients to date show any symptoms or side effects of radiation overdose. “Even at the highest recorded level of variance at 13.9 per cent, the levels received were still within internationally established guidelines for safe or tolerable dosages of radiation. Those guidelines state that doses above 20 per cent of the prescribed dose would be considered a misadministration of dosage.

“The news stories may have caused you some alarm and distress, as it did our administrative staff. Please be assured that the Centre has not acted inappropriately nor has it put patients at risk. We are confident that our own internal enquiry, our consultation with five independent specialists and extensive research into a number of international institutions, support our view that no misadministration of radiation has occurred at the Centre. “We wish to assure you that our records reflect that you, and indeed all 218 patients treated by us during that period have not presented with any symptoms or side effects of over radiation and that we continue to monitor and evaluate your condition as part of your ongoing care.

“We have sourced a new clinical director and a radiation oncologist of international repute, and recruited the only board-qualified radiation physicist in the country to be part of our new team going forward. “In the meantime, we are doing everything possible to bring the highest levels of transparency to the circumstances leading up to the discrepancies in administered dosages and have made comprehensive administrative and operational changes to ensure that this never occurs again. “We thank you for choosing the BLCTC. We affirm our commitment to providing world-class, state-of-the-art technology in your treatment, and to safeguard your right to privacy and proper care. If there be ever any question or concern that you may wish addressed, please call in and schedule an appointment to see one of our oncologists who will address your questions or concerns at no additional costs. (Telephone: 624-6117).”

Patients need answers

Patient X felt this letter from the Centre needed to be publicised. She responded in an open letter (below) to Dr Bovell on behalf of many patients who are too ill or too fearful to speak out.

“Dear Dr Bovell,

I am in receipt of your letter dated July 20, 2011, from the Brian Lara Cancer Treatment Center–the first such communication from you. I assume that these letters are being sent to all the patients involved in over radiation, and I decided to publish my response as an open letter, to share it with others who might be lulled into a false sense of security by your letter. “I am baffled when you refer to ‘a general misunderstanding of the administration of radiation’.  What misunderstanding? The Paho report (September, 2010) clearly stated that there was a miscalibration of a linear accelerator at BLCTC. And several medical experts have concurred that we, the patients who were administered an overdose of radiation during the period June, 2009–June, 2010, could be exposed to potential late side effects of over radiation.

“You assure me that I was one of the patients being monitored over the past 13–25 months. This is false, grossly arrogant and unethical. How could the BLCTC be monitoring me when I was totally unaware that I was being monitored? My understanding of being monitored is that:

1 Patient would be called immediately after the clinic became aware of the problem, to be informed of possible side effects, and;

2 That the Centre would then set up a system for regular check-ups at no expense to the patient.  This was not done.

“You state that your patients to date show no symptoms or side effects of radiation overdose, but how can you come to that conclusion without the monitoring suggested above? “In fact, several fellow patients have complained to me of severe scarring, blistering, difficulty in swallowing and swelling of limbs. “The point is, we were administered an overdose of radiation above the dosage prescribed by your oncologist which could have resulted in side effects which may not have occurred, had we been administered the recommended dose.

“When you say the BLCTC will continue to ‘monitor and evaluate’ my condition, what exactly do you mean? What special considerations are you giving to us, the overdosed patients who are concerned about our future? The effects of radiation overdose can be manifested as late as five years after radiation–who will bear the financial burden then? “As far as I can see from the press coverage, the Centre was more concerned with covering up the problem and suggesting that the publicity was an attempt to undermine the BLCTC. The Centre never came out publicly to accept responsibility. The alarm and distress suffered by us the patients was more than justified given the attitude of the Centre. 

“I believe this letter is part of an attempt to silence critics. “Clearly, there is nothing in the Centre’s behaviour to inspire confidence. For those who have no option, the Government should insist on the BLCTC establishing a fund to cover the cost of patients wishing to have second opinions from other labs in Trinidad & Tobago and abroad. “Your letter, written ten months after the initial exposure at BLCTC, has done nothing to reassure me or to ease the trauma, alarm and distress I have endured due to the total lack of communication, when this report of miscalibration was first made public.  
 

Yours truly,

One overdosed cancer patient.” 

I forwarded this letter to the BLCTC, hoping finally for some answers as the questions had come directly from a patient.

Cancer Centre responds

Their response to me:

“Thank you for your offer to respond to the letter which you forwarded to us on August 3. We would welcome an opportunity to address all of the concerns and answer all of the questions of the patient who forwarded you his/her open letter to Dr Bovell. We are committed to continuing a dialogue with patients who have further questions and concerns. Given issues of patient confidentiality and the need to consider each patient’s case on an individual basis, we do not consider the press an appropriate forum to adequately respond to patients. 

“We have issued an invitation to all of our patients treated during the material time to consult with our oncologists and to attend the Centre for regular follow-up visits at no charge. The patient in contact with you is likely already aware that such an invitation has also been extended to him/her. Nevertheless, as the patient in contact with you remains anonymous in your letter and we are unable to identify him/her to make further contact, we would appreciate it if you would convey to him/her that he/she is welcome to make an appointment with the Centre to discuss all of his/her concerns.”  

Yours sincerely,
Dr Bovell

Open answers to open questions

Dr Bovell’s response is unacceptable and deliberately obtuse because the matter is now in the public domain. The patient was openly asking for general accountability on behalf of fellow patients, not discussing her specific ‘confidential’ case and wanted an open answer. She, and I firmly had the door shut on our faces. Over the weeks, I understood from the Centre’s PRO (who seems to have moved on to another “project”) that the matter was in legal hands, that everything that needed to be said was said, that finally they would “call” me back for the interview with regards to the oncologist I promoted in last week’s column. In other words, please, allow the issue to die a natural death. 

The fact, if there are 218 (or 223) patients out there who were wronged and need answers. We as a people also need answers because although individual patient’s records are confidential, accountability in the medical profession, because it is a matter of life and death for us all, cannot remain “confidential” since this could set a dangerous precedent. Paho and the Ministry of Health didn’t consider revealing the over radiation confidential. With great power and knowledge held by medical professionals (and the institutions they work for) comes great responsibility. The odds are heaped against patients, often poor, backed against a wall, held hostage by the spectre of death, anxiety and illness. 

As one reader put it: “We, the cancer patients, are just a number (among 223?) over radiated from a miscalibrated machine between 3 per cent–19 per cent ...depending on whose story you believe.”

That’s why, Dr Bovell, it’s everybody’s business. This nation wants open answers to your patients’ open questions.