Philip Pilato
February 2018
No Stranger to Cancer
Never in a million years would I have thought breast cancer. Not that I was a stranger to cancer – my father fought prostate cancer and died of lymphoma – and I was with him during that final year of agony. And my mother is a breast cancer survivor. I thought, for sure, if I were to get cancer it would be prostate, or God forbid, lymphoma. But breast cancer, not in a million years.
I first noticed something wrong in November, 2009. I looked down at my chest and realized that one breast was getting larger than the other. I touched my breast and the nipple felt like a rock. I had a physical in a few weeks, so I waited till then, being embarrassed to discuss my hard lump with anyone. I told my doctor, he felt the same hard lump and sent me to a breast cancer specialist.
The specialist felt the same lump I did – and wanted me to take a sonogram and a mammogram. The sonogram went fairly easily, but the mammogram was a whole different story. I swear I don’t know how women go through that every year or two.
So a few weeks later I’m back in his office – lying on my side in one of his examining rooms as he makes an incision in my breast to extract his sample.
He’s given me a local anesthetic but has warned me the nipple is very sensitive and so I could feel some pain. I did feel pain – a lot of pain – even with the anesthetic I felt more pain than the mammogram. That’s because the lump is so hard he has to dig three times into my breast to get out a core sample.
All through the holidays I’m thinking “it’s not cancer, it’s not cancer”, until the phone call came, and the doctor told me, it’s definitely cancer. I still couldn’t believe it, so I wanted a second opinion, and I went where both my Dad and Mom had gotten good results, the Memorial Sloan Kettering Cancer Center. I was 48-years-old.
I met with Dr. Tari King who looked at my biopsy sample, the mammogram and sonogram, and then she examined me. She found one of my lymph nodes under my arm was swollen, and had me take a sonogram of my underarm as well as a biopsy of the swollen node. I was thunderstruck when I was informed the node was positive for cancer. Dr. King told me I would need radical treatment; a mastectomy, removal of all the lymph nodes from under my left arm, and chemotherapy to treat my Stage II cancer.
Dr. King assured me it wasn’t a death sentence. We had caught it early enough that I should be able to beat it. And not to worry about the loss of my hair, it would grow back, eventually. I explained my worry being disfigured for life, having my breast removed, and how I wouldn’t feel whole. While women obviously have a bad experience losing a breast, and are all offered reconstruction, men are often not told it is a possibility. It was explained to me that, indeed, it was possible and that insurers had to cover all those undergoing a mastectomy for reconstruction.
After I got the diagnosis, I tried to figure out how do I tell my family, my friends, and my co-workers. Would some people laugh at me? Would they think I’m less of a man because I have a disease women usually get?
It took me nearly a week to tell my family; it was like my private shame. I’m still not sure why. But when I did tell them, they were all extremely compassionate and understanding. When I told my friends and co-workers,
the words I used went something like this: “I don’t know exactly how to tell you, so I’m just going to say it, I’ve been diagnosed with breast cancer.” And, lo and behold, my fears were all for naught. No one laughed at me, and no one thought I was less of a man.
In February, 2010, I underwent surgery at Sloan Kettering. After admission and preparation the last thing I remembered before Dr. King carried out my mastectomy, was the anesthesiologist placing an oxygen mask on my nose and mouth, and then darkness descended on me.
When I awoke, Dr King said she decided not to cut into my underarm but made the chest incision longer and pull out the lymph nodes from there. I looked down at my breast, which was bandaged up like I had a broken rib with an ace bandage wrapped completely around my chest. My wife kept trying to talk to me, but I was still groggy and kept falling asleep way into the afternoon. Although I was hungry, I could only eat small portions of my meal and ended up feeling nauseous and bringing up the little food I had managed to ingest. After a visit from my brother, and before I went to sleep, the nurse came in to empty the two drains that were attached to me, one from under my arm and one from where my breast used to be. The drains looked like two long flexible straws, ending in rubber bulbs that fill up with blood and lymphatic fluid.
The next morning I was checked for signs of infection and given instructions on how to drain the tubes in preparation for my return home. My wife asked if I wanted to get a car service, but the day was so gorgeous I told her I felt like walking, and taking the subway.
I forgot they were working on my subway line so what should have taken a half hour, took three times that long. But I was never happier to see my apartment and my cat.
It was in shock to learn that my reconstructive surgery would have to be delayed by year, and may not happen at all. Dr. King explained that because 10 out of 30 of my lymph nodes were cancerous, the skin on my breast had been infiltrated by the cancer and I would need radiation following my chemo.
Any reconstructive surgery would be a problem for the plastic surgeon, at least for the time being. I now realized that I had been accepting the scar because I believed it wouldn’t stay too long, and now that it could possibly stay for the rest of my life, I started looking at it as a badge, a badge of honesty. However, I still wanted to see what if anything could be done about it, and made an appointment with a plastic surgeon.
As for the rest of my recovery, I originally had no pain after my surgery, that is until the drain stopped flowing, and the fluid then got in the way of my muscles, nerves and bones. I had such a pain, that I was forced to take a vicodin. Dr. King’s nurse took out my final drain, and she used a needle to draw out the fluid, filling up two syringes of the lymph fluid.
My oncologist, Dr. Deandrea wanted me to get a echocardiogram to check my heart before I started the chemotherapy. A week later chemo started and before my second treatment, a clump of my hair came out. Before long it wasn’t just the hair on my head, it was my body hair too, except for my moustache and beard. The anti-nausea medications did their work and I was not nauseous or exhausted afterward, although dealing with my cancer, my mother’s illness, and working odd hours had of course taken their toll. I had been told by other chemo patients that the chemo is cumulative and I’ll get more exhausted as the sessions go on.
Losing my head hair is one thing, but losing my body hair is a different story. The hair under my arms thinned out, but honestly there was a forest under there anyway. My facial hair stopped growing, and while the hair on my arms and legs thinned out, my chest and pubic hair was all gone. After my third chemo I was very exhausted and had a new side-effect, night sweats.
After my first half of the chemo, the Adriamycin and the Cytoxan, I decided to get all my head shaved, which looked much better than the comb-over.
The final half of my chemo, the Taxol, was given once a week. I was told I could lose my eyebrows and other hair, and my nails. I didn’t get the expected diarrhea, but I did have to run to the bathroom to urinate while the chemo was going on, because of the amount of fluids being poured into my body.
Then the beginning of the second month – instead of urination during the chemo, I ran to the bathroom with the runs. I was often exhausted from dehydration, and they told me to make sure I was hydrated, and drink Gatorade for the electrolytes I was losing, and I would be okay. I often went to work, but could not always last the full shift. Fortunately, the hair on my head was starting to grow back, but it was blonde. However, the hair on my eyebrows is thinning out a lot – and so is the hair on my arms and legs.
Eventually, my hair grew back. As for my body hair, my chest hair was coming back, and so too was the hair on my legs. I found myself complaining about having to shave my face again.
I was all set to go to what’s called a “simulation”, where they tattooed marks on my chest for a grid to guide the beams of radiation. I was fortunately enrolled in a trial for a newer way to deliver the radiation. Normally, Stage 2 breast cancer patients get two beams of radiation, one aimed at the breast area, the other under the arm where the cancer-positive lymph nodes were. Radiation is recommended for patients with four nodes positive for cancer. I had ten positive nodes. With this kind of radiation there is a risk of hitting the heart and lungs. Heart and lung problems could develop 20 years later. The newer delivery is using multiple beams, six or more, of radiation, all adding up to the same amount of radiation as before, but aiming them more precisely to almost pinpoint accuracy. The idea is to reduce the amount of radiation that might hit the heart or lungs.
I had no problem with the trial since pinpoint accuracy is a good thing, and being followed for five years is another benefit. I was told however, that except for the pulmonary test and a few follow-up visits down the road, I’d basically get the same care if I decided not to participate.
Then they laid out a grid on my left breast-area, strips of thin metal (for the cat scan images). Dr. Ho adjusted it, and then, using a sharpie marker, they marked off the grid on my skin. Finally a nurse came with a tattoo machine and marked off certain spots on the grid. Then, after taking a series of photos and x-rays to pinpoint the spot, I was handed an appointment slip for the set-up, which would be the following week in the afternoon,
On the appointed day I turned up, was gowned and joined a waiting queue, before being set up on the table to be positioned for my first treatment. Then, one of the techs came in and placed a bolus on my chest to help diffuse the radiation to prevent burning of the skin and other damage to the chest area from the radiation. Finally, the tech said “don’t move from the position you’re in.” and then left the room. The platter and box started rotating, some whirring sounds came from the platter side and then a loud buzz, a warning alarm, went on for about 10 seconds, and then stopped. Then the platter and box rotated some more, clockwise, and the buzzer went off again.
Fourteen times this happened, with the platter rotating until it was directly over my head and finally off to my right. As it neared my head, I could see what was making the whirring sounds. It was a set of what looked like flat nails, sliding back and forth, allowing the radiation beam to be focused and refocused for each of the 14 beams of radiation I was getting daily.
When all 14 were done, the techs came back in the room and said “You’re done for today”.
I’ve been on Tamoxifen now for seven years. I get mammograms each year, it’s still painful, but necessary. But the great news is I’ve been cancer-free for seven years.