Arthur Frank - Interview 96

Age at interview: 55

Age at diagnosis: 40

Brief Outline: Arthur W. Frank, diagnosed testicular cancer (seminoma) in October 1985. Orchidectomy followed by chemotherapy for secondary abdominal tumours. Author..

Background: University professor; married, 2 children

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Arthur Frank first noticed symptoms of what would eventually be diagnosed as testicular cancer after he suffered from a virally induced heart attack. He said that he had not anticipated further health problems and was shocked when he began to experience symptoms. He was suffering with extraordinary back pain and had found a lump in his testicle. Arthur and his wife had an intuition that it might be testicular cancer. He explained that he went through a long period of misdiagnosis and had a hard time making his doctors listen to him. He felt that his doctors did not pursue a diagnosis aggressively enough and had fixated on confirming Lymphoma. He was admitted into hospital and refused an exploratory operation to check for Lymphoma, and was eventually seen by an urologist who diagnosed him with testicular cancer. He found it difficult to trust his doctors as they had been so reluctant to address his concerns. He knew of cancer as a fatal disease and had regarded it as death but was relieved to find out that his was one of the most treatable cancers.

 

He underwent an orchidectomy followed by chemotherapy for secondary abdominal tumours. He recalled a great sense of loss for a short while over the loss of his testicle but found that he soon had other things to worry about, such as chemotherapy. He felt that it was important for him to realise that his sexual function was not impaired and adapted easily to having one testicle, and said that he almost preferred it. He decided against a prosthesis. He explained that no one had informed him about or mentioned the option of sperm banking and that he and his wife had been too concerned with his diagnosis to think about it. After speaking with his oncologist he became aware that infertility was a possible side effect of his chemotherapy and decided to delay treatment for a few weeks so he could bank sperm, which would allow him to conceive a child at a later date. He feels grateful that his wife had been there to ask these kinds of questions as he had still felt groggy from surgery. He then underwent chemotherapy. He recalls that losing his hair was one of the most traumatic moments of his illness, and described it as even more powerful than losing his testicle. He found comfort in knowing that the hair loss was temporary. He felt that hair loss marked him as someone who had had cancer. He explained that treatment left him feeling slightly sunken but that he would always pick up spirits again. He explains that no one warns you of the side effects and that it is important to be clear with your doctors about how much you want to be told. He found that he was able to be relatively active and that complementary therapies were useful in minimising the side effects of chemotherapy. He explained that he and his wife had fears of recurrence and that he had further cancers scares, which turned out to be false alarms or other manageable health problems. 

 

He said that his wife had been a great comfort through the whole experience and had supported him every step of the way. He explained that long term relationships may suffer as the result of cancer as you are putting together a relationship after a long period of time where one spouse has been completely dependent. He characterised remission as where the real journey begins in terms of relationships. He wanted to be able to support his wife and help with their baby. It was an exhausting time but they would always manage to pick themselves up. He explained that he had flexibility with work but felt that he was treated unfairly when he was unable to produce his expected number of publications for that year. He found that some colleagues were more supportive than others. 

 

He explained that having cancer was a life changing event and that you find a way to go with that change. He believes it is important to recognise that it is a part of his life. He found solace in music. He had felt that he was living in a bubble of chemotherapy with no immune system, and that music gave him a new perspective on his experience of cancer. He feels that if cancer has one value, it is to not take your life for granted. He decided to write a book about his experience as he wanted to provide an alternative source of information from healthcare professionals. He had initially felt that he was too busy dealing with his cancer to join a support group but after speaking to a support group about his book he has remained involved in a number of different ways. His advice to men is to talk to someone who has survived testicular cancer. 

 

After treatment for testicular cancer he went on to conceive a daughter normally so did not need...

I mean I think the thing I was trying to think of before that's important is we did go, we didn't have any fertility problems at all and we conceived this perfectly lovely daughter. Now I think the thing I'd really like to end on would be the birth of our daughter, because there's something about that affirmation of life that's just so extraordinary after you've nearly died, that was, it made that experience so incredibly richer than it ever could have been.

After having an orchidectomy for testicular cancer his sense of loss was short-lived; he says he...

The loss of a testicle was a big thing for about a week and a half maybe. I mean at first there was this great sense of loss and particularly because your pubic hair is shaved, you've got this scar, you've got surgical dressings. I remember the scrotum just kind of hanging there and I did feel a definite sense of loss. Again I would say that really lasted for, you know, no more than 10 days or so because the, the surgical site quit causing me any problem within 2 or 3 days, and then very quickly I was moving onto chemotherapy and I had other things to worry about.

 

Before you go on, can you just expand a little bit about your sense of loss, was it - I don't want to put words into your mouth - in a sense of your masculinity or part of your body or…?

 

Well both. I mean there's this common expression, at least in North America, where you talk all the time about balls, you know, "That really took balls", or, "He's really got balls", and all of a sudden you don't have balls, you've got ball, and so there is a kind of threat at least to masculinity. It was important to me to realise very quickly that sexual function wasn't impaired at all and really that the funny thing is that once I got used to having one testicle, which was really, again, very quick, it all of a sudden seemed incredibly clunky to have two. I mean the idea of, "Well don't they bump into each other?" And they do bump into each other, and all of a sudden having one just seemed like a very natural and even sort of preferred way to go through life.