Helen Hohan

my story

My journey with granulosa cell tumour began in 2006 after a ruptured tumour. In the first 11 years, I had 7 recurrences, had 12 operations, received 3 different chemo treatments (Carbo-Taxol, BEP and Abraxane) and tried as many as 7 different types of hormone treatments, all with severe side effects. Then the time came when my doctors indicated that surgery was no longer possible, and a type of experimental chemo was their final suggestion. I couldn’t contemplate that; I was deadly ill and above all wanted more, or even any, quality of life, as I hadn’t had that in years.

brave doctors

Having no options left after refusing chemo, I moved with my husband from Chicago to Las Vegas, where I’m from. My new oncologist, Dr Parikh, devised a different plan. He carried out research and got in touch with CyberKnife specialist Dr Curtis. After initially saying no, they decided they would give it a try based on genetic testing of my tumour. At that time my last surgery, in which they removed 7 tumours, had happened 6 months previously and I already had 8+ new tumours. All the irradiated tumours were on the bladder, against the abdominal wall and intestines. In July 2018, Dr Curtis started irradiating two tumours and so on, two more every 3-5 months. They got smaller or they disappeared; the untreated tumours also disappeared or got smaller and no new ones appeared. My doctors suspected an abscopal effect.

2023

Unfortunately, radiotherapy does not provide a cure. It did save my life and also gave me back the much-desired quality of life. I remained stable until early 2023. I was taking letrozole at a maintenance dose to slow down the growth of new tumours. But then it happened again and I developed a new tumour. This one was encased in my intestines with my bladder above. My doctors were not sure whether irradiation would be successful, as they were unable to place a fiducial marker. (This is a sliver of gold that gets inserted into the tumour. This helps the medical team use AI to guide the machine to the right spot for the radiation.) The radiation from the CyberKnife had to pass through the intestines and bladder to reach the tumour. And, of course, your intestines move constantly. In short it was a huge challenge without fiducial and everyone was afraid of irreparable damage.

a plan

After 4 months of hesitation, the team came up with a proposal to use my pubic bone as a kind of fiducial and to do a weekly MRI for a while to check the amount of movement of my bowels. Fortunately there was so much scar tissue there due to the many surgeries, that nothing much moved. The team devised a plan to go through the intestines and bladder with the CyberKnife, but never through the same area twice, and so to arrive in the middle of the tumour. They warned me about complications and discomfort, but what choice did I have? I decided to go for it.

You know what? I had zero side effects. I played golf, saw two Broadway shows on tour, celebrated my birthday and wedding anniversary, all during my treatment.

life

Five months later, in December 2023, I received the results of the MRI and the tumour had completely disappeared. I can get on with my life again, for quite a while yet!