Parents, survivors and their primary doctors should be aware of the risks for second primary cancers.
Below are symptoms of the most common second primary cancers linked with a constitutional RB1 mutation and retinoblastoma treatment.
Below are symptoms of the most common second primary cancers linked with a constitutional RB1 mutation and retinoblastoma treatment.
While many of these signs and symptoms can be caused by other diseases, the cancer risk should be taken seriously, and all symptoms promptly and thoroughly investigated. Early diagnosis saves lives.
See your doctor promptly if you have any unexplained symptoms that persist for more than 1-2 weeks, particularly unexplained fatigue, fever, weight loss, or general feeling of ill health. If your primary doctor is unable to help, contact your long term follow up oncologist, the doctor who treated your retinoblastoma, or the hospital where you received treatment.
Osteosarcoma (a type of bone cancer)
Symptoms depend on the cancer’s location, but include:
Limb
- Persistent bone pain or tenderness.
- A lump or swelling under the skin that may be red and feel warm.
- Increased pain with lifting (if an arm is affected).
- Limping and pain on walking (if a leg is affected).
- Limited range of movement (if a joint is affected).
- Broken bone (especially arising from a simple movement).
- Unexplained fever (this may indicate infection in the bone).
Orbit
- Numbness, tingling, pressure or pain around the eye.
- Pain around or behind the eye.
- Swelling and/or visible deformity around the eye.
- Painful protrusion of the eyeball, or poorly fitting prosthetic eye.
- Changing or decreasing vision.
- Loss of previous ability to move both eyes in sync.
- Swollen or drooping eyelid.
Soft Tissue Sarcoma (cancers that develop in the muscle, tendons and ligaments, and fatty tissue)
Symptoms depend on the cancer’s location, but include:
- Painless or uncomfortable swelling.
- Any painful or tender lump that is bigger than 5cm (2in).
Specific symptoms by common location include:
Bladder
- Visible blood in your urine.
- Increased need to urinate.
- Abdominal pain.
- Painful or difficult urination.
Uterus
- Post-menopausal bleeding, or bleeding/spotting between periods.
- Abnormal vaginal discharge.
- Pressure or pain in the pelvis or abdomen.
- A mass in the pelvis or abdomen.
Abdomen
- Bloating in the abdomen.
- Stomach-ache.
- Black-coloured stools or blood in the stool.
- Loss of appetite and/or unexplained weight loss.
- Nausea and vomiting.
- Vomiting blood.
- Unexplained upper-back/shoulder pain (referred pain).
Lung
- Persistent or worsening cough.
- Recurring chest infections.
- Chest pain when breathing or coughing.
- Persistent breathlessness.
- Coughing up blood or blood-stained mucus.
- Persistent fatigue and lack of energy.
Jaw
- Increasing numbness, tingling, pressure or pain around the jaw.
- Visible swelling around the jaw or inside the mouth.
- A lump in the roof of the mouth or along the gumline that may or may not be painful.
- Loose teeth or teeth moving position.
- Unexplained toothache.
- Difficulty moving the jaw and trouble chewing.
Orbit
- Painless growth on one of the eyelids or in the tissues around the eye.
- Painless protrusion of the eyeball, or poorly fitting prosthetic eye.
- Discharge from the eye or eye socket.
- Increasing numbness, tingling, pressure or pain around the eye.
- Changing or decreasing vision.
- Loss of previous ability to move both eyes in sync.
- Swollen or drooping eyelid.
Oral Cavity (mouth) and Oropharyngeal (throat) Cancers
- A sore on the lip or in the mouth that doesn’t heal
- Pain in the mouth that doesn’t go away
- A lump or thickening in the lips, mouth, or cheek
- A white or red patch on the gums, tongue, tonsil, or lining of the mouth
- A persistent sore throat or feeling that something is caught in your throat
- Trouble chewing or swallowing
- Trouble moving the jaw or tongue
- Numbness of the tongue, lip, or other area of the mouth
- Swelling or pain in the jaw
- Dentures that start to fit poorly or become uncomfortable
- Loose teeth or pain around the teeth
- Voice changes
- A small lump on one or both sides of the neck, towards the back.
- Pain in the ear
Nasopharyngeal Cancer (cancers that occur in the nose)
- A painless small lump on one or both sides of the neck, towards the back.
- Hearing loss, ringing in the ear, pain, or feeling of fullness in the ear (especially one-sided)
- Recurring ear infections
- Nasal blockage or stuffiness
- Nosebleeds
- Headaches
- Facial pain or numbness
- Trouble opening the mouth
- Blurred or double vision
- Trouble breathing or talking
Malignant Melanoma (a type of skin cancer)
Look for changes in the size, shape or colour of a mole or freckle. Warning signs include:
- Irregular shape.
- Uneven colour.
- More than 6mm diameter (larger than the blunt end of a pencil).
- Unusual skin marks that last more than a few weeks.
- Tingling, itching, crusting or bleeding of a mole.
- Something growing under a nail or a new pigmented line in a nail.
Brain Tumours
Symptoms vary widely. They arise because the tumour puts pressure on the brain, or because it disrupts function of the structures where it is located.
Symptoms of increased pressure are:
- Headache: usually associated with nausea and vomiting. Pain and nausea are worst in the morning, easing throughout the day. Coughing, sneezing, leaning forward or exercise can increase the pain, and vomiting may reduce it.
- Drowsiness – sleeping or “dropping off” excessively.
- Blurred vision, ‘floating objects’ and tunnel vision.
- Balance problems.
- Confusion.
See your doctor if any of these symptoms persist for more than a week.
Symptoms caused by location include:
- Frontal lobe: altered personality or intellect; uncoordinated gait; weakness on one side of the body; loss of smell; occasional speech impairment.
- Parietal lobe: difficulty speaking or understanding words; problems with writing; reading or simple calculation; poor coordination; numbness on one side of the body.
- Occipital lobe: loss of vision.
- Temporal lobe: Speech and memory problems; seizures that may cause a feeling of fear, familiarity (déjà vu) or strange smells.
- Cerebellum: Unsteady gait; poor articulation (speech); flickering involuntary movement of the eyes; vomiting; stiff neck.
- Brain stem: Unsteady gait; a one-sided smile; drooping eyelid; double vision; difficulty speaking and swallowing.
These symptoms may be caused by other conditions. See the doctor if individual symptoms persist for more than two weeks or if a cluster of symptoms persist for more than one week.
Acute Myeloid Leukemia and Myelodysplastic Syndrome
Symptoms of these two conditions are the same. Most occur due to damaged bone marrow. The main symptoms are:
- Pale skin, fatigue and breathlessness (low red cells).
- Increased infection (low white cells).
- Easy bruising, bleeding gums, frequent nosebleeds (low platelets).
- A rash of tiny, flat red spots on the legs or in the mouth (petechiae).
- Aching bones (caused by too many immature cells in bone marrow).
- Blue-purple bumps under the skin (leukaemia cells in the skin).
- Swollen gums (leukaemia cells in the gums).
