Childhood Cancer

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Childhood Cancer Survivors

Skin

Skin is composed of two main layers: the epidermis and the dermis. The epidermis is a thin outer layer that is only 10 to 30 cells thick. The top layer of the epidermis is made up of dead cells full of keratin, a protein that keeps bacteria from entering the skin.

The thick, inner layer of the skin is called the dermis. Cells in the dermis produce melanin, a pigment that gives skin its color. Exposure to the sun increases the amount of melanin, causing a darkening of the skin. The dermis also contains nerve endings, blood vessels, and hair follicles. Sebaceous glands are usually attached to hair follicles in the dermis. These glands secrete oil that helps keep skin and hair from drying out.

Sweat glands produce a fluid containing water, salt, and waste products when the body is hot. When sweat evaporates, it cools the body. Blood vessels in the skin store blood to help regulate body temperature. During exercise, your skin appears flushed because the body pushes warm blood to the surface to cool off.

Organ damage

Skin can become discolored from some types of chemotherapy, higher doses of radiation, and graft-versus-host disease (GVHD), which occurs after some types of stem cell transplants.

My daughter had a BMT (bone marrow transplant) in March of 1995. She had no radiation. Conditioning was Cytoxan ® and thiotepa. The thiotepa caused Paige to get what looked and acted like a very severe sunburn over her entire skin. It turned very dark brown and then all peeled off—all of her skin! It did heal with the rest of her body, and you would never know except for the softness and the brown mottled areas in her skin creases.

• • • • •

Robby has funky discoloration on his skin from the total body irradiation he had prior to transplant. He is brown-skinned, and has big freckles where the skin has lightened. He also has scars on his cheek, ear, and chin from shingles. They could eventually be helped with visits to the plastic surgeon, but for right now they don’t bother him. He has also gotten quite a few moles all over his body, which now need to be watched.

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I had Hodgkin’s stage IIB and was treated with mantle radiation and ABVD (combination of four chemotherapy drugs). It came back 2 years later, and I had MOPP (another combination of drugs) and radiation again. I have a dark patch of skin in the hollow at the front of my throat. It always looks dirty—like I never wash my neck.

Some children and teens treated with bleomycin or etoposide develop darkened areas of the skin (called hyperpigmentation). Pressure from trauma (such as removing a bandage from the skin) can result in darkened streaks in the traumatized areas. Bleomycin and etoposide can also cause darkening of the nail cuticles and creases on the palms. Dark bands on the nails may form as well. Doxorubicin (Adriamycin ® ), daunorubicin, and idarubicin can also cause darkening in skin creases, nails, palms, soles of feet, and face. These changes usually disappear over time.

Eric had very dark skin on the joints of his fingers and toes. Also, his knees were very dark. I hated it because he always looked dirty. His doctor told me that it was a side effect from the chemotherapy. It took a few months for it to disappear after treatment stopped.

Moles

Children or teens who had radiation therapy sometimes develop large numbers of brown moles on their bodies, often in unusual places such as the scalp, hands, or toes.

Garrett has a bunch of moles, all over. I even found myself digging in his belly button one night trying to remove what I soon discovered was a mole. He has them on the bottom of his feet, on his scalp, between his fingers, and everywhere else you can imagine. We have even observed some of them form (they started out looking like bug bites). We had the staff look at them, but they didn’t seem surprised. We were told they were a direct consequence of the radiotherapy and should be monitored closely for unusual changes. Other than that, they said, “Don’t worry, we see this all the time.”

Scars

Most survivors have scars on their skin that serve as a daily reminder of their bout with cancer. Children or teens who had solid tumors may have extensive scarring from the tumor removal surgery. Those who had leukemia or lymphomas have scars from central line insertion and removal.

Chris has lots of scars in addition to the four big ones on his head to remove the tumor and put in the shunt. He has a scar from where the catheter was implanted, a hole from the G-tube (gastrostomy or feeding tube), and a scar in his belly button where he was checked to see that the shunt was placed correctly.

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I had Wilms tumor in 1962 when I was 2 years old. I have a big scar that goes right around my waist. It’s no big deal. I just don’t wear bikinis.

• • • • •

Logan’s scar is a giant Mercedes ® symbol. Upside-down V with a 2-inch cut in the center going up the breastbone. He had a port and has a 2-inch scar from that. He has a scar from his G-tube that is deep and quite large and looks just like another belly button. He also has two drainage tube scars. But they’re all beautiful to me. I tell him they’re just his battle scars and he has a special tummy. But I hope they’ll fade out some.

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I had cancer twice. I finished treatment for the second bout 6 months ago. I have a 3-inch-long bright red scar from the ports on my upper-left chest. I wore the push-up bra for months after the port was removed trying to keep the scar from stretching, but it didn’t work. It looks awful and really limits the kind of clothes I wear. I like to look pretty and it bothers me. I was recently at a store in one of those big dressing rooms with mirrors all around. I felt like all of the women were staring at me. I ran out in tears.

Some children and teens who get severe cases of shingles have scarring along the nerve tracts. Mild and moderate cases usually heal without scarring.

Robbie has some scarring across one side of his face from having shingles after his bone marrow transplant. The biggest is the size and shape of a half dollar. Being fairly dark-skinned, the scar is very visible, and is actually darker than his regular skin. I told him he could go to a plastic surgeon if he wanted to, but he doesn’t really want to go to any more doctors, and who could blame him.

Many survivors who had radiotherapy (except those who had cranial radiation only or total body irradiation) have permanent tattoos (small black dots) on their skin to outline the treatment areas.

Maybe others aren’t as bothered as I was by the tattoos, but in my case they were always so public and sometimes led to the disclosure of my treatment that I wasn’t ready or prepared to share with people. At least my staging laparotomy/splenectomy scar was hidden from view, but those darn little black spots were scattered across my body and two of them were right at the edge of most necklines of blouses.

One in particular seemed to catch everybody’s attention, and on more than one occasion someone would wet the end of their finger and lean over to rub off the ink spot on my chest. I eventually had that one removed although my oncologist thought this was neither sensible nor necessary. But it did put an end to that particular intrusion.

Stretch marks

Some children and teens gain weight when they are on steroids (i.e., prednisone, dexamethasone) for extended periods of time. This can cause stretch marks. This is a variable side effect—some children gain weight but have no stretch marks, while others get them all over the body. Stretch marks sometimes fade with time.

My daughter gained 50 pounds while on high-dose steroids to treat her GVHD after her bone marrow transplant. Luckily, my daughter’s skin never split, but now, 2 years later, she has massive stretch marks. They run down the inside of her legs, all the way to her ankles. They are everywhere on her thighs, hips, stomach, breasts, and arms. She has learned how to tolerate the stares and answer the questions about all the stretch marks.

Radiation injuries to the skin

Survivors of childhood cancer who had high-dose radiation frequently have acute skin problems (e.g., redness, peeling) during treatment. Chronic radiation injury to the skin and underlying tissues can occur months or years after the radiation is given. The signs and symptoms of radiation injury to the skin include the following:

  • Dry skin

  • Dark and/or light areas on the skin

  • Thinning of the skin

  • A spidery pattern of capillaries visible in the skin (telangiectasia)

  • Ulcers on the skin

The first late effect to the skin after radiation is usually a loss of elasticity. Areas of the skin can become tough (called fibrosis) and the tissues can contract. In some cases, telangiectasia appears.

Radiation can also cause the skin to age faster. Skin in the areas radiated may become drier and more wrinkled and may develop age spots. These late effects are much more likely in survivors who had high-dose radiation. Late effects to the skin depend on dose per fraction (the amount of radiation given at one time) as well as total dose. The most damage occurs to skin and underlying tissue when radiation is given in fractions larger than 200 centigray (cGy). Current technology uses megavoltage (skin-sparing) radiation to avoid severe damage to the skin. Those who were irradiated in the 1960s and at some institutions in the 1970s with orthovoltage radiation are at higher risk for late effects to their skin.

I had 4500 cGy of mantle radiation in the 1970s to treat my Hodgkin’s disease. The skin over my sternum always looks slightly reddened with deep wrinkles and creases, unlike the skin on any other part of my torso. I’ve heard some survivors call the thickened, wrinkled areas “chicken skin.”

Tissue damage under the skin can make the skin tighter and more vulnerable to breakdown. Factors that contribute to ulcers in the radiation field are trauma, pressure, ultraviolet light (from sunlight or tanning beds), and exposure to intense cold.

I had my thyroid removed recently (casualty of Hodgkin’s treatment). When I told my surgeon that it still hurt, he reminded me that because there is radiation damage at the vascular level I could expect to heal slower than a normal person. He teased me because I have no body fat on my neck or upper chest to help keep the skin loose. Then he told me I can take him off my Christmas card list because we are through with each other. He was so sweet and such a fine surgeon. The scar is already pencil-line thin.

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I had 2800 cGy of mantle radiation 10 years ago. I never even had any skin problems, even irritation, while getting the radiation and I have no skin problems now.

Damage to glands

Radiation can also damage or destroy sweat glands, sebaceous glands, and hair follicles. Damage to these glands may be permanent.

Since my daughter’s transplant she doesn’t sweat at all. As a consequence, she can’t tolerate heat or humidity. I first thought it was the skin GVHD problem causing it, but now the GVHD is gone and she still doesn’t sweat. When she is hot she gets beet red and finds it hard to breathe. So she stays in the air conditioning. It’s a problem because she’s in the marching band at school and she can’t march on hot days. She carries a water bottle and drinks cool water if the room is hot.

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I only sweat on one side of my head and face now. When I work out, the right half of my face gets bright red and dripping wet. The hair on that side gets sweaty and yucky. I sweat on just the right half of the skin above my lip. I look really weird. It looks like I fell asleep with my face turned to the side and got sunburned. The left side of my face is perfectly white, dry, and looks like I haven’t even exerted myself. My hair stays dry too. My oncologist told me to be careful about not getting overheated since half of my head can’t release heat.

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An effect that causes us all great humor is not sweating in the armpit that was heavily radiated and not having underarm hair. Go figure—survivorship humor is very sick. I only sweat on the right side and have hair only on the right side. You’d think all these years I could have gotten a break on dry cleaning.

Itchy skin can persist for years after treatment with radiation. It is most common in those who had high-dose radiation or GVHD after an allogeneic bone marrow transplant.

Katie had itching on her torso for many years after BMT. We were told this was very, very mild GVHD. It was so mild, usually a good back scratch cured the problem.

• • • • •

I suffer from itching and incredibly long-lasting hives. When I went through my worst bout a couple of years ago, I discovered that a combination of Atarax ® , Temovate ® cream, and some kind of antihistamine with my steroids really helped.

Skin cancer

A serious late effect to the skin after treatment for childhood cancer is skin cancer (although it can develop in people who never had childhood cancer). Radiation increases the risk and shortens the development time of skin cancers. Skin cancers can arise in irradiated or non-irradiated skin, and exposure to the sun may hasten their development. Having a family history of skin cancers and getting older also increase your risk of developing skin cancers. See Chapter 19 , for more information about skin cancers.

Medical management

Careful evaluation of skin changes should be part of your yearly follow-up examination. In some cases, referral is made to a dermatologist for more frequent examinations. Any changes in color, scarring, dryness, fibrosis, or tightness should be identified and recorded in your medical chart. Reversal of late effects to the skin is not possible, but education about ways to slow the process can help.

You should protect your skin from the sun. If you had radiation, you have a definite risk of cancers of the skin, especially in the irradiated areas. Try to limit your sun exposure, and use sunscreen of at least SPF (sun protection factor) 30 when you are out in the sun. If you had radiation to the chest or back, always wear a shirt when in the sun. If you had radiation to the arms or legs, keep them covered. Anyone who had cranial radiation or who has thin hair should wear a hat when outdoors.

I wasn’t supposed to go out in the sun after my transplant, but I did anyway. The sun aggravated the mild GVHD that I had and I turned blotchy. I had itchy light and dark patches on my stomach and face. I had to go back on steroids.

Scars need extra protection from the sun. Normal skin sloughs off if sunburned, but scars cannot do that. They may remain darker. If you are going out in the sun for extended periods with your scars exposed, it’s best to put zinc oxide on them.

If you have lots of moles on your skin, be sure to inspect them regularly. The moles probably won’t become cancerous, but it is best to keep an eye on them. Always point them out to your healthcare provider at your follow-up visits, especially ones he wouldn’t normally notice—between your toes or on your scalp. Ask your healthcare provider to check areas you can’t see. If moles change shape, color, or size, make an appointment with a dermatologist. Some dermatologists take photographs of a survivor’s moles so they can do a yearly comparison. Moles need continued surveillance, and you should always use sunscreen to protect your skin and moles from ultraviolet rays.

If sebaceous gland damage makes your skin especially dry, using a moisturizing cream may make you more comfortable. Dermatologists sometimes treat scars, stretch marks, and other skin problems with medicated creams. If your scars and/or stretch marks bother you, check with your dermatologist to see if there are any medications available that might help them fade. You could also consult a plastic surgeon to learn about any surgical options for removal of scars and/or stretch marks.

My daughter developed a large keloid scar on her back after a chicken pox lesion was biopsied. She wanted it removed because it was itchy. The plastic surgeon said he could fix all the other scars too, from two central lines, two ports, and a gastrostomy. She said, “No, those are mine.” She doesn’t mind. She puts on her bikini and goes out on the beach with all the rest of the kids.

Make sure to tell your surgeon about your cancer history if she needs to operate on previously irradiated skin. Special precautions must be taken as the tissue might be fragile and slow to heal.

Chapter 18. Skin, Breasts, and HairBreasts

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