A former Auditor-General who discovered she had stage IV cancer seven years after it was first diagnosed is urging others to make sure they understand everything their doctors tell them.

Heather Jacobs Matthews found out last year the disease she was battling was terminal only after she obtained and read medical notes written by Sein Aung, her cancer specialist at King Edward VII Memorial Hospital.

The news shocked the 67-year-old, who insists the severity of her illness was never explained to her by doctors in Bermuda or by those who treated her at Brigham and Women’s Hospital/Dana-Farber Cancer Institute in Boston.

“If they had told me how serious it was, I would have started early doing my wills and stuff like that,” she told The Royal Gazette. “I could have done a lot in those years ... making sure my children were not impacted by my demise.

“If they had mentioned the word ‘terminal’, I would have thought ‘wow, I don’t have much time’. I was never told I had stage IV cancer. That was a shock.”

Mrs Jacobs Matthews first found out she had cancer in 2011, after pain in her right shoulder led to an X-ray and biopsy at KEMH.

She had radioactive iodine treatment, but in 2014 more cancer was found at the base of her spine.

Doctors told her on both occasions she had metastatic follicular thyroid cancer but, according to Mrs Jacobs Matthews, they didn’t spell out that it meant the cancer had spread from her thyroid to other parts of her body and was life-threatening. “I didn’t even, at that time, put them together,” she said. “As far as I was concerned, they were isolated occurrences of cancer.”

Mrs Jacobs Matthews added: “I didn’t understand the terminology. It was up to them to make sure I did understand it.”

She added: “Maybe it’s because of my attitude to being sick; it didn’t really bother me. I was able to do my work, as best as I could.

“I didn’t think I had to worry about stage IV disease. I was under the impression that I was OK.”

Mrs Jacobs Matthews, who was appointed Auditor-General in 2009, continued to work in the high-pressured role even after the second tumour was found, producing detailed reports that told taxpayers how public officials had ignored financial instructions and public funds had been misspent.

One report led to a commission of inquiry.

She retired in May 2016, when George Fergusson, then the Governor, commended her for the “enormous commitment and professionalism” she brought to the job.

Mrs Jacobs Matthews’s health continued to deteriorate after her retirement, despite the radiation treatment, and she began trying to piece together why she was so sick.

But after obtaining her medical records from KEMH and Brigham, she has been left with more questions than answers because of inconsistencies in the doctors’ notes.

She had her left thyroid removed at KEMH in 1979 owing to a neck swelling known as a goitre. No cancer diagnosis was given and KEMH has been unable to tell her or her referring doctor, Wilbert Warner, if a biopsy was done or a pathology report written.

Yet one doctor at Brigham said in his notes there “must have been a malignant nodule” 40 years ago.

Another Brigham doctor wrote that Mrs Jacobs Matthews had a “reported history of a thyroid cancer diagnosed in 1979”.

In 2004, her right thyroid was removed at Brigham.

The pathology report after the surgery showed a “normal thyroid” and no cancer.

But in April 2018, when Mrs Jacobs Matthews read the file from Dr Aung, she discovered that one of her doctors at Brigham noted in 2014 that the 2004 operation revealed a cancerous tumour.

Seeing that, along with the stage IV diagnosis, was devastating to the mother of two, who wondered if the thyroid cancer could have been cured if treated when first detected.

“Seeing that cancer had been discovered in the 2004 operation in Boston was a big shock to my system,” she said. “All I kept thinking was that cancer had been running through my body for 14 years, mostly unnoticed, and for most of my professional life, and here I am at stage IV.”

After inquiries from The Royal Gazette, Brigham said the 2004 note was a mistake.

Hospital spokesman Mark Murphy said: “There was no carcinoma found in 2004.

“The pathology report from Mrs Jacobs Matthews’s 2004 thyroidectomy at the Brigham clearly stated that she did not have cancer ... While Mrs Matthews was being treated at the Brigham in 2014, a bone biopsy was performed, which confirmed the stage IV cancer.

“When recording that biopsy in the notes, there was an error in the clinical documentation that incorrectly referenced the 2004 thyroidectomy instead of the 2014 bone biopsy.”

He said Mrs Jacobs Matthews was referred to Brigham in 2014 for “highly specialised radiation therapy by her physicians in Bermuda, who were already treating her for metastatic, stage IV thyroid cancer”.

Mr Murphy added: “In light of Mrs Jacobs Matthews’s confusion about her case, the hospital will arrange a call to provide information directly to her about the history of her care and answer any questions she has.”

Mrs Jacobs Matthews acknowledged that “everybody makes mistakes”, but added: “How does this happen?”

She said she was sharing her story to warn others to be vigilant with their healthcare.

She urged people to ask for their medical records, educate themselves on medical terminology and ask questions if anything didn’t make sense.

“I spent my time as Auditor-General honing my investigative skills,” she said: “I never thought that I would need them to solve my medical dilemma.”

She added: “Trying to address this situation has been a nightmare.

“But for the grace of God, I am still standing, although getting weaker.

“I’m at peace with it now. There is nothing I can do about it at this stage. It’s a matter of getting on with life now.”

Dr Warner said he could not comment on individual patients.

Mrs Jacobs Matthews’s GP, Constance Richards, said: “Normally cancer staging is not for GPs. It is left to oncology.”

A Bermuda Hospitals Board spokeswoman said Dr Aung was unable to provide information on a patient’s care.

The spokeswoman added that the hospital would search again for the 1979 records and provide them to Mrs Jacobs Matthews if found.

Four decades of fighting

• 1979: Heather Jacobs Matthews has her left thyroid removed at the King Edward VII Memorial Hospital in Bermuda, when no mention of cancer is made. A pathology report has not been seen by Mrs Jacobs Matthews or her doctor, Wilbert Warner.

• 2004: She has her right thyroid removed at Brigham and Women’s Hospital/Dana-Farber Cancer Institute in Boston. The pathology report shows no cancer. An unsigned operative report, dated March 9, 2004, states: “This patient presented with a large right thyroid mass having undergone a left thyroid lobectomy years ago for unknown pathology.”

• 2011: A biopsy of her right shoulder in Bermuda finds a secondary cancerous tumour, with the primary cancer identified as being follicular thyroid cancer.

• January 12, 2012: Dr Warner e-mails Reed Larsen at Brigham a history for the patient, which says: “1979 left subtotal thyroidectomy (Bda). I have been unable to date (still trying) to get Path. report.” Dr Warner asks Dr Larsen for the pathology for the 2004 surgery carried out at Brigham. Dr Larsen responds by attaching the 2004 pathology report, which makes no mention of cancer.

• February 2014: A biopsy in Bermuda of the patient’s sacrum, the bone at the base of the spine, confirms another secondary cancerous tumour.

• March 19, 2014: Dr Larsen writes an e-mail to Jochen Lorch, director of Dana-Farber’s thyroid cancer centre, copied to Dr Warner. It states of the patient: “She had had a lobectomy long ago before any of us knew her which must have been a malignant nodule.”

• March 26, 2014: In a report, Harvey Mamom at Brigham states: “In 2004, she then underwent a right thyroidectomy, which revealed follicular carcinoma.” Brigham told The Royal Gazette last month that this was a mistake and no cancer was found in 2004.

• March 28, 2014: In a Brigham report signed electronically by radiologist Heather Jacene, it states that Mrs Jacobs Matthews had a “reported history of a thyroid cancer diagnosed in 1979”.

• April 3, 2017: A progress note from Dr Lorch states: “Mrs Matthews returns for follow up. She had some second thoughts about starting systemic treatment [chemotherapy] and was considering returning to the Bahamas and not to pursue further treatment.” In the same note, he later writes: “Patient would like to go back to Aruba and will follow up with her local oncologist.”

• October 23, 2017: In a note, Sein Aung, at KEMH, writes: “In 1979, the patient had left partial thyroidectomy for goitre which has increased in size significantly and, at that time, there was no diagnosis of cancer.” The same information is given in a note by Dr Aung in March 2019.