Malcolm Carmine, age 52, has metastatic prostate cancer.  

But prostate cancer doesn’t have him.

The difference between those two statements is as big as the gap between being alive and living – and Malcolm Carmine is living.  

His journey with prostate cancer began three years ago, when he was 49.  Malcolm works in a large commercial bakery in Escondido, California.   Part of his job involves heavy lifting, hoisting 50-pound bags of ingredients like flour.  He began having pain in his groin.  “Men tend to ignore pain,” he says, and at first, he did.  But the pain persisted, so he went to his family doctor.  The doctor suspected a hernia.  Malcolm disagreed:  “I was in the Navy for 20 years, and I have been very proactive about lifting using my legs.”  So he got a second opinion.  The second doctor suspected a hernia, as well, and referred Malcolm to a general surgeon.   

“I remember, it was late afternoon.  He started examining me and said, ‘You definitely don’t have a hernia.  But I need to know why your lymph nodes are so enlarged.  They’re about as big around as my thumb.’  He started doing tests.  Nothing came up about my prostate.”  Neither of the family doctors he had seen had mentioned his prostate, either, and Malcolm had never had a PSA test or any screening for prostate cancer.  Finally, the surgeon said, “’Well, I think I’m going to give you a PSA,’ and that’s where it all started.”

Malcolm’s first PSA was 127.

Then came tests, including a prostate biopsy and a CT scan.  Malcolm’s wife, Patty, is a medical records supervisor for a long-term care facility.  One of the doctors there told her to make sure Malcolm got a bone scan, so he requested one.  “It showed two very small lesions, one in my hip, and one in my rib.  At that point, they put me on Lupron and (for a month) Casodex.”  His PSA jumped up to 154.  

When the biopsy results came back.  Malcolm and Patty walked out of the hospital, to “a little area of grass where people sit, and we cried for probably half an hour,” he says.  “When we found out how bad it was, how aggressive it was, we really didn’t know what to do.”  This was Spring of 2014.  “We met with my urologist.  I asked him, ‘What can we do?’” Malcolm had two choices: to give up or to fight.  He told his urologist, “I’m willing to do pretty much whatever it takes.  If this is going to be aggressive, I’m going to be aggressive, too.  Whatever hoops I need to jump through, I will jump through, as high as I need to jump.”

He started chemotherapy.  “I went through six sessions of taxotere over an 18-week period.  Each chemo was between three-week intervals.”  He almost didn’t survive the first week of chemo:  after a brief hospitalization with nausea and a fever, he was released.  That night, “we were in bed.  The hospital called and said, ‘We need you to come back in.”  He had sepsis, an infection in his blood.  Malcolm did not realize the significance of sepsis, but Patty did.  “Honestly, I’m kind of an idiot when it comes to knowing what medical terms are.  But my wife knew what it was, knew how serious it was, and it scared her a lot.”  A few days later, he developed a blood clot in his arm.  “This was all after that first session of chemo.  The chemo hit me so hard.”  But he finished it.  

Malcolm was out of work from October 2014 to March of 2015.  “My work was very good about it,” he says, and his insurance is good.  “The good news is, I just had a PSA yesterday, and my PSA is undetectable.  When I was coming off chemo, they did another bone scan, and there was no evidence of those two small spots.”  A CT scan of his pelvic area shows no new sites of cancer.  He gets a Lupron shot every three months.

“Everybody who sees me now would never know that I had metastatic prostate cancer.  Nobody would know.  I owe all this to my wife.  She takes care of me.  I tell people this a lot:  if it wasn’t for her, and my kids, and my support group that I go to – unfortunately, I don’t get to it a lot – if it wasn’t for these people that I love and care for so much, I could never have done this by myself, ever.  My wife is my rock.  She went to every chemo, every meeting.”  Patty doesn’t always go to every doctor’s visit now that Malcolm is doing so well, “but she’s always texting me questions to ask the doctor.  She’s my advocate.  She explains medical terms I don’t understand, and asks the questions I don’t know how to ask.  She’s always been there for me.”

Malcolm has a good excuse for missing some of his prostate cancer support group meetings:  “I work full time, I work nights – I go in at midnight, and get off at 9 a.m., and I also go to college.”  He’s been going to Grossmont College on the GI bill; he even went while he was on chemotherapy.  “It was hard, but the teachers were understanding.”  He is working on a degree in fine arts, in graphic illustration, and a certification in photography.  “School starts back up again next week.  With me going to school and working nights, I don’t get the chance to go to the group meetings as much as I would like to.”

But he goes when he can, for two reasons:  because it helps him, and because he wants to help and inspire other men.  “The first time I ever went to my group, I probably cried a little bit, I probably had a very big emotional setback, because it was very hard for me to talk about what I was going through.”  Malcolm is usually the youngest guy in the room and the only one with Stage IV cancer, but his upbeat outlook helps the other men as they find their way back from the diagnosis of prostate cancer and through treatment and recovery.   “I have to be positive.  I’m positive for my children; I’m positive for my wife.  That makes me stronger.  I’m not saying that I’m always on the upper level of being positive all the time.  There are days when I have struggled, when it makes me think.

“But I don’t allow this cancer to define who I am.  That’s why I continue to work and go to school.”  In 2015, Malcolm and Patty celebrated their 25th wedding anniversary and renewed their vows.  

About the Lupron

“I don’t think the side effects have hit me as hard as men who are their sixties or older.  I do get hot flashes occasionally, but some guys at the meetings are hot all the time.”  He takes Megase, which helps control the hot flashes.  “They also say because the Lupron takes away your testosterone, that you’re supposed to be losing energy.  I do get tired some days, but I work long hours; that’s part of the job.  If I work a 10- to 12-hour day, I do get tired, but I’m not exhausted, I’m not going to fall asleep on the way home.  There are a lot of side effects to the Lupron, but I don’t feel like all those side effects are affecting me, and I think it’s because of my age and my mindset.”

A positive outlook is the key, Malcolm believes.  “Your mind controls the body.  It’s how you think, how you program yourself.”  He tries new things:  last winter, he went skiing for the first time.  “I live for the day.  I don’t know how long the Lupron is going to work.”  His oncologist told him that the day might come when the Lupron stops working, “but there’s other treatments out there.  I’m going to use the Lupron until it stops working.  When that comes, I’m going to cross that bridge.  I’m not going to live in a box until then.”

A Bad Gene

In 2013, Malcolm’s father died of a stroke after surgery.  In 2014, Malcolm was diagnosed with cancer, and in 2015, his mom died of pancreatic cancer.  “It’s been an emotional roller coaster that I wish I had never gotten on.”  Malcolm and Patty heard about genome screening, and asked Malcolm’s oncologist if he could have that done.  It turns out that Malcolm has a faulty gene, called ATM, which is linked to the development of colon cancer, prostate cancer, pancreatic cancer, and breast cancer.  (Note:  This is one of the genes that Cascade Genetic Screening looks for.  You can read about that here.)    It is likely that Malcolm’s mother had the faulty gene, and passed it on.  “It’s been there all my life,” Malcolm says, and he is glad to know this:  “Now I have ammunition of knowledge for my two sons,” Malcolm, 24, and Zachary, 20.  He doesn’t want them to get genetic testing yet because it might be hard for them to get life insurance if it turns out that they have this gene, but he hopes they will get tested for it in a few years.  Knowing there’s a bad gene in the family means that “my two boys can be screened for cancer a lot earlier, like 10 years before I was diagnosed.  That’s a good thing.”

Surviving  

“My doctors say I’m not in remission,” says Malcolm, that “I’m controlling it.  There’s no cure for Stage 4 prostate cancer right now; I understand that. But I’m thinking there will be in two or three years.  My older brother told me, ‘You don’t have an expiration date on the bottom of your foot, you don’t know when it’s your time.  There’s no reason to get worked up about it.’”

Malcolm tells the men in his support group:  “We’re all going to beat this.  We’re all going to survive.  Men who are diagnosed with Stage 1 cancer have a 99 percent survival rate.”  One man in his group was newly diagnosed.  “He hasn’t decided what he’s going to do.  I told him, ‘Whatever you decide, just remember, you have a lot of support, but don’t allow someone to make that decision for you.’  The decision I made with my wife – I can’t tell people, ‘Go do chemo, do Lupron.’  Everybody’s different.  I’m 52 years old.  Hopefully I’ll live long enough to see my grandchildren, and my sons aren’t even close to getting married yet.”  

Malcolm says he gets on his soapbox, and tells friends to get checked, and to make sure their fathers get checked.  “It’s better to know than find out later that you could have done something.  What really bothers me is that men who aren’t getting checked find out they have prostate cancer, sometimes when it’s too late.  That bothers me a lot.  Men in their forties aren’t getting screened soon enough.  If I hadn’t gotten checked when I did, my doctor told me I would have had six months to a year.”

When Malcolm asked his oncologist what else he could do, his doctor recommended that he cut out all animal fats.  For seven months, “my wife and I went completely vegan.  My whole body changed.  I had a lot more energy.  Some studies have been done, but it’s not proven, that getting away from animal fats helps slow prostate cancer down.”  He has not eaten red meat since May 2014, although he now eats chicken and fish, and has ice cream every now and then.   He doesn’t drink much alcohol, but he’s a home brewer, so maybe once a month, he has a beer.  

“What do I have to complain about?”

“The prostate cancer is what it is,” says Malcolm.  “I live with it.  I used to tell myself, I wish I could have one day of amnesia so I could forget all of this, but why would that change anything?  I don’t think about it in a bad way.  The good thing about chemo is you get to save money on razors and the barber shop.  I lost pretty much all my facial hair except my eyebrows.  I started losing my hair in the shower, so I went to the barber shop and had it shaved off.  I lost some of my fingernails on both hands, but they grew back.  It all grew back.  

“I don’t allow myself to be negative:  It’s all about my heart, and about my mind.  If it wasn’t for my wife, my rock… she’s been there for me, always.”

And he is there for her.  Patty has Grave’s disease, and just went through eye compression surgery.  “We fight together.  We’re positive together.”  Malcolm sees patients from the children’s hospital in San Diego who are going to chemotherapy, and he thinks, “What do I have to complain about?  These kids who haven’t even lived yet are going through this.  I’m healthy right now.  My body is in good shape right now.  I’ve already lived a lot of my life; what have these children done?  I see women with breast cancer, people with colon cancer who have it a lot worse than I’ve gone through.  I thank God every day that it hasn’t been as bad as what it could be.  I thank my wife and my children every day that I’m able to be still here with them.”

Malcolm contacted the PCF because he was happy to see the Home Run Challenge, “something with a major league sports group.  With the NFL and hockey, you see the pink ribbons for breast cancer all over the place.  I would love to see light blue all over the place.”

And that brings him to the biggest problem men have in talking about prostate cancer – the fear of losing testosterone.  

“What makes men whole?  It’s up here in your brain.  That’s what makes you whole.  You have to make yourself whole.  I understand where they’re coming from.  But if you’ve got somebody who’s a part of you, who is there for you, who cares for you – then you’re whole.  Some men might not be able to perform the way they need to perform, but that doesn’t make you a man.  That doesn’t.  I’m sorry, but it doesn’t.

“It’s hard for men.  It was hard for me at the beginning.  But I’ve got somebody in my life who cares about me, who stands beside me whatever we go through.  Most of the men I talk to have somebody like that.  If you can get through that little part – that you’re not a man because of prostate cancer – you can get through anything.”

This keeps him coming back to his support group.  “No men in my group are in Stage 4.  The reason why I go to this group is to inspire other people, to allow other people to hear my story and be inspired, that their situation isn’t as bad as mine.”

Some days are a little tough, he says.  “I tell my wife, ‘I cried yesterday.’  Sometimes it gets to you.  I think it’s the Lupron; I get a little emotional.  She says, ‘You’re just going through menopause.’  I kind of chalk it up to that.  I live one day at a time.  It is what it is.”

Terms to know from this article:

Lymph nodes

A rounded mass of lymphatic tissue that is surrounded by a capsule of connective tissue. Lymph nodes filter lymph (lymphatic fluid), and they store lymphocytes (white blood cells). They are located along lymphatic vessels. Also called a lymph gland.

Screening

Checking for disease when there are no symptoms.

Biopsy

The removal of cells or tissues for examination under a microscope. When only a sample of tissue is removed, the procedure is called an incisional biopsy or core biopsy. When an entire lump or suspicious area is removed, the procedure is called an excisional biopsy. When a sample of tissue or fluid is removed with a needle, the procedure is called a needle biopsy or fine-needle aspiration.

Bone scan

A technique to create images of bones on a computer screen or on film. A small amount of radioactive material is injected into a blood vessel and travels through the bloodstream; it collects in the bones and is detected by a scanner.

urologist

A doctor who has special training in diagnosing and treating diseases of the urinary organs in females and the urinary and reproductive organs in males.

Testosterone

A hormone that promotes the development and maintenance of male sex characteristics.

Oncologist

A doctor who specializes in treating cancer. Some oncologists specialize in a particular type of cancer treatment. For example, a radiation oncologist specializes in treating cancer with radiation.

Remission

A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.

PSA

prostate-specific antigen (PSA): A substance produced by the prostate that may be found in an increased amount in the blood of men who have prostate cancer, benign prostatic hyperplasia, or infection or inflammation of the prostate.

Gene

The functional and physical unit of heredity passed from parent to offspring. Genes are pieces of DNA, and most genes contain the information for making a specific protein.

Janet Farrar Worthington is an award-winning science writer and has written and edited numerous health publications and contributed to several other medical books.

In addition to writing on medicine, Janet also writes about her family, her former life on a farm in Virginia, her desire to own more chickens, and whichever dog is eyeing the dinner dish.