OconoLife is a perfect place for survivors to go post treatment to get information on the "what happens now" phase. After answer a few simple questions - no personal information is needed - you get a report based on what your surgery and treatment types. It gives you a good detailed view of what to expect. It is great information for survivors who are not aware of what to expect. How your treatment will effect your body long term, side effects of surgery, what you should do to better your health and much more.
The best way to descride it is to show you an example. The following is my report output based on my surgery (Orchiectomy) and treatment (Radiation):
Welcome to your personalized OncoLife plan of care. This plan is designed for survivors of adult cancers and was developed based on the information you entered on the questionnaire. Childhood cancer survivors are encouraged to visit the Children's Oncology Group website for more information specific to them. While every aspect of survivorship is important, including psychosocial, emotional and financial issues, this plan focuses on the long term medical risks the survivor may face.
The information in this plan is based on the available research and literature concerning cancer survivors. This area is continually growing and as new information becomes available, it will be added to the program. For this reason, you may want to redo your plan periodically. The goal of the OncoLife program is to provide cancer survivors with information regarding the health risks they face as a result of cancer therapies. The level of risk can vary based on the duration, doses and combinations of therapy, therefore this plan should be discussed with your oncology team to better understand your personal risks. These results can be frightening, but remember, not every survivor experiences every side effect, and some do not experience any long term effects. This plan is to make you aware of possible long term effects that you and your healthcare team should keep in mind.
The following sections are broken down by the cancer therapies you entered on the questionnaire. Sometimes more than one therapy can cause the same long term effect, so you may see a particular side effect in more than one section. If there are specific things you can do to reduce the risk for or evaluate for the presence of an effect, these will be summarized at the end of the section.
You were treated for other cancer:
- removal of the testicle(s) (orchiectomy)
- radiation for metastasis to the lymph nodes
- treatment for testicular cancer
Coordinating Your Care
As a survivor, it is important that you keep a journal or notebook of your care. Include your doctor's contact information, medications taken, therapies received and radiology testing you have had. (Visit the OncoPilot section for forms you can use to organize this material). While some survivors continue to see an oncologist, many return to a primary care provider or internist for care, many of whom are uncertain how to care for you. Developing the OncoLife plan of care can help you and your primary care provider in understanding what effects to look for and how to handle them. If you are being seen only by a primary care practitioner, it is a good idea to be known to an oncologist or late effects clinic, should you need any guidance or referrals with regards to late effects. The Cancer Survivors Project maintains a list of late effects clinics, which will review the therapies you received, discuss risks with you and act as a consultant to your primary care team.
Risk of a second cancer
As a survivor, your chance of developing a second cancer is about twice that of a person of the same sex and age who has never had cancer. This may be a different type of cancer altogether, or a cancer in the same site as before, that is not related to the first cancer. While this sounds scary, it is important to be aware of this risk and be proactive in your own healthcare. It is not well understood why survivors have this risk, but having follow up care, cancer screening and a healthy lifestyle can decrease your risk. In some cases, a treatment (types of chemotherapy or radiation therapy) increases the risk of another cancer. These are called secondary cancers because they develop as a result of therapy. If you are at risk for a secondary cancer, it will be discussed further in your plan.
Because of this risk, survivors are encouraged to adapt a healthy lifestyle of exercise, avoidance of tobacco use and alcohol only in moderation ( less than two drinks a day for men and one for women ), maintaining a healthy weight and eating a health conscious diet, including lots of fruits and vegetables. The American Institute for Cancer Research has developed nutrition guidelines for cancer survivors to address questions related to diet. Practice safe sun habits by using sunscreen, wearing protective clothing and not using tanning booths. Survivors should follow recommended guidelines for cancer screening, with earlier screening if they are in a high risk category (i.e. radiation to an area, genetic syndrome).
The following sections will address risks related to the therapies you received.
Surgery Side Effects
- Removal of the Testicle(s) (Orchiectomy)
Risk of Developing Osteoporosis
Osteoporosis and osteopenia (the precursor to osteoporosis) are decreases in bone density, which increases the risk of fracture of the affected bones. Long term use of corticosteroids (dexamethasone or prednisone, > 5mg per day for more than 2 months), receiving chemotherapy medications (including methotrexate, ifosfamide, cytoxan, fluorouracil and interferon alpha) or radiation to weight bearing bones (spine, hips, legs) all increase the risk of developing osteoporosis.
Women, who develop premature menopause, have their ovaries removed before menopause or those who take aromatase inhibitors (anastrozole, letrozole and exemestane) are at increased risk. Men who receive hormone therapy for prostate cancer or undergo orchiectomy are at risk. In addition, patients who have undergone gastrectomy (removal of the stomach) are at increased risk.
As for lifestyle risks, smokers, people who consume excessive alcohol and those who do not participate in weight bearing exercise have an increased risk of developing osteoporosis. Survivors at risk should have adequate intake of calcium (about 1200mg per day) and vitamin D (400-800 international units per day), participate in weight bearing exercise (walking, dancing, jogging or any exercise where the legs are supporting the body's weight) and talk to their healthcare provider about screening with DEXA scan and options for treatment, if necessary.
- Avoid smoking and excessive alcohol intake
- Perform weight bearing exercise 2-3 times per week
- Calcium intake of 1200mg per day plus Vitamin D 400-800iu per day (either in dietary intake or supplements)
- Consider screening with DEXA scan
Long term effects of radiation therapy vary greatly depending on the areas included in the field of radiation and the radiation techniques that were used, as these continue to develop and improve. One issue that is consistent across all tissues is the possibility of developing a second cancer in or near the radiation field. Secondary cancers develop as a result of the exposure of healthy tissue to radiation. Newer radiation techniques are designed to limit this exposure, but it is not always possible to prevent all exposure and still achieve the desired outcomes.
Radiation to the spinal cord can cause damage to nerves, leading to a loss of strength, feeling or coordination of the arms or legs, paralysis or problems with bowel or bladder control. Occasionally, nerve damage can cause a sensation of electric shock spreading down the limbs.
Damage to bones of the spine (vertebrae) included in the radiation field can result in a reduction in height or curvature of the spine. Radiation to these bones can also put them at risk for fracture. Any new back pain should be evaluated with x-rays and, if necessary, other studies.
X-ray evaluation for any new back pain, loss of bowel or bladder control, paralysis, weakness of arms or legs.
- Evaulation by a neurologist for chronic, shock-like pains in the arms/ legs
- Evaluation by an orthopedist for any new curvature of the spine
Radiation can lead to permanent changes in the skin. This can include changes in the color or texture of the skin, scars, and changes in the color, texture of hair or permanent loss of the hair in the treated area. The soft tissue and muscles under the skin can develop scarring and/or shrinkage, which can lead to a loss of flexibility and movement or chronic swelling. Some patients develop chronic or recurring ulcers of the skin in the area treated. Blood vessels of this skin may become dilated and more noticeable, although this is not harmful. If the skin feels tight or sore, regular use of vitamin E applied to the skin can be helpful.
After radiation the skin is more sensitive to sunlight, and survivors should be especially cautious to use sunscreens when outdoors.
- Diligent use of sunscreen
- Evaluation by a wound care specialist or surgeon for non-healing ulcers
The bowel is a radiation sensitive organ, and several late effects may occur after radiation to the rectum, colon, or small bowel:
Scarring and strictures can lead to bowel obstruction, which is most commonly seen in patients who had surgery and/ or radiation to the abdomen. Any signs of bowel problems should be reported to a physician, including abdominal pain, constipation, vomiting, weight loss and bloating. A survivor with severe abdominal pain accompanied by vomiting and constipation should be seen by a physician immediately, either in the office or the emergency department. A patient who has a bowel obstruction will likely need to be admitted to the hospital. If this occurs, the survivor should be followed later on by a gastroenterologist or surgeon.
Ulceration/ bleeding can occur after radiation as the delicate tissue of the bowel may be damaged. Any bright red blood in the stools, toilet water, or toilet paper, as well as dark black stools, should be reported immediately to a physician. These may be signs of radiation colitis or proctitis, and may require evaluation with colonoscopy.
Chronic diarrhea/ poor absorption can result from radiation to the tissue of the bowel. Diarrhea accompanied by weight loss or malnutrition should be evaluated by a gastroenterologist. Anti-diarrheals or anti-spasmodics may be useful, and evaluation by a nutritionist may be useful for survivors who continue to lose weight or have electrolyte abnormalities.
Fistula formation: A fistula is a connection between two body cavities that should not exist. A fistula can form between the bowel and bladder, bowel and female reproductive system (uterus/ vagin), or the bowel and the skin. A fistula between the bowel and bladder may cause a survivor to pass gass through the urethra (tube that drains urine). Any abnormal passage of urine, feces, or blood should be immediately reported to a physician, and will likely need evaluation by a surgeon.
Like other tissues that have received radiation, research indicates that radiation to the bowel can lead to colon cancer. Unfortunately, this risk is not well understood, nor is there an established guideline for screening. Survivors should certainly undergo screening colonoscopies. The Children's Oncology Group guidelines for childhood cancer survivors recommends beginning screening 10 years after radiation, or at age 35, whichever is later, with repeat colonoscopy every 5 years. Screening of the general population begins at age 50, and adult cancer survivors should consider these 2 guidelines when deciding to start colon cancer screening. Survivors who may require earlier screening include those with irritable bowel disease, chronic diarrhea or bleeding, ulcerative colitis, familial colon cancer syndromes or previous gastrointestinal cancers or polyps.
- Immediate medical evaluation for severe abdominal pain, especially if accompanied by nausea/ vomiting and constipation.
- Immediate medical evaluation for bleeding from the rectum or dark stools.
- Use of anti-diarrheals for chronic diarrhea
- Consultation by a nutritionist for weight loss or nutritional deficits
- Immediate medical evaluation for new bleeding or abnormal passage of urine or feces.
- Colonoscopy 10 years after radiation therapy (or at age 35, whichever is later) for screening followed by colonoscopy every 5 years.
- Screening colonoscopy at age 50 for all patients.
Radiation can cause permanent damage to nerves. This is most often seen when the nerves that supply the arms or legs are in the radiation field. This can lead to pain, loss of strength, decreased feeling (sensation), loss of coordination or movement of the limb. This is often referred to as neuropathy. This toxicity can cause difficulties with fine motor skills such as buttoning a shirt, sensation of hot or cold (causing a safety hazard) or difficulty walking, which may require physical, occupational and medical therapy as well as adaptive changes and education to ensure safety and maintain function. Neuropathy can also cause pain ("nerve pain") that is not treated well with traditional pain medications. Tricyclic antidepressants, Carbamazepine and Gabapentin (Neurontin) are the most commonly used medications for the treatment of neuropathic pain. Survivors with uncontrolled pain may benefit from referral to a pain specialist.
- Consideration of physical/ occupational therapy for difficulty with motor skills, temperature, or loss of balance.
- Treatment with tricyclic antidepressants, carbamazepine, or neurontin for neuropathic pain.
- Referral to pain specialist if pain does not improve.
Late effects to the bladder can include scarring, leading to a decrease in the bladder capacity. If given in conjunction with chemotherapy agents known to cause bladder damage (cyclophosphamide, ifosfamide), late effects can include hemorrhagic cystitis, a condition characterized by bleeding from the bladder lining. Symptoms of hemorrhagic cystitis include urinary frequency and urgency, blood in the urine and pain. Survivors at risk should report these symptoms to their healthcare provider right away. Persistent bleeding should be evaluated with cystoscopy.
Radiation to the bladder may also cause the survivor to be more susceptible to urinary tract infection. This type of infection can be treated with antibiotics given by mouth. Any symptoms of urinary burning, frequency, or blood in the urine should be reported immediately.
In addition, radiation to the bladder can increase the risk of developing bladder cancer. Symptoms may include blood in the urine, urinary frequency and urgency, urinating at night and incontinence. Any of these symptoms should be discussed with a physician. Survivors should also avoid alcohol use and smoking as these may increase risk of bladder cancer.
Urinalysis for any urinary symptoms, and treatment with antibiotics if infection is shown.
Cystoscopy (small camera to evaluate bladder) for persistent bladder pain/ bleeding.
Immediate evaluation of any bladder/ urinary symptoms with awareness that survivor may be at increased risk of bladder cancer.
- Avoidance of alcohol and smoking.
- Male pelvis (prostate, rectum)
Radiation to the pelvis in a male patient may cause erectile dysfunction. This risk is highest in men who have erectile dysfunction before beginning radiation therapy. Remaining sexually active during radiation treatment may be helpful in preventing or minimizing erectile dysfunction. This symptom may be very distressing, and the survivor should discuss it with his physician. Medicine such as saldenafil (Viagra) may be useful. If these medicines are not helpful, the survivor should be seen by a Urologist. The MUSE system may assist men in having erections. Men may also consider penile implants or pumps.
Radiation to the groin area may cause damage to the lymph nodes, which can cause the genital area and legs to be permanently swollen. In these cases, physical therapy may be helpful.
- Yearly sexual history by a professional
- Medications for sexual dysfunction if survivor feels these would be helpful.
- Referral to a Urologist if medicines are not helpful for discussion of implants or pump systems.
- Physical therapy for genital or groin swelling.
Long term effects of radiation to the testes vary depending on the dose received, shielding and fractionation. The primary concerns are the risk of infertility caused by damage to germ cells (which become sperm) and damage to the Leydig cells, which produce testosterone. Without testosterone, a young boy may not achieve puberty or an adult male may have a loss of secondary sex characteristics (facial hair, mature genitals and deep voice) or loss of sexual function. Because germ cells are far more sensitive to the effects of radiation than Leydig cells, a man may have normal sexual characteristics and function while being infertile.
Radiation doses as small as 0.1Gy to the testes can result in decreased sperm counts and doses of 1.5-4Gy can result in permanent sterility. As previously noted, the Leydig cells (responsible for testosterone production) are less sensitive to the effects of radiation, with damage occurring at 30Gy in mature males (20Gy in prepubescent males).
If the testicles are not the primary radiation target, shielding can be used. This technique protects the testicle(s) from receiving radiation. Before a man begins radiation to or near his testicles, he may undergo sperm banking. This can allow his sperm to be preserved and used to produce pregnancy later on.
- Possible physical changes to the testes include changes in the skin, hair loss and atrophy (shrinking).
- Evaluation by an infertility specialist if pregnancy is not achieved and is desired.
- Evaluation by an endocrinologist if secondary sex characteristics are absent or change (loss of facial hair, genital changes, voice changes, erectile dysfunction).
The removal or irradiation of lymph nodes from the axillary (underarm), abdominal, or groin areas can lead to decreased drainage in the closest limb, causing lymphedema (a swelling of the limb) to result. Survivors who have received radiation therapy and surgery to the area are at greatest risk of developing lymphedema, which can occur years after therapy. While sentinel node biopsy can decrease the risk of developing subsequent lymphedema, the risk is not completely eliminated. Lymphedema can cause pain, disfigurement, functional limitations and increase the risk of a serious infection in that limb. A Certified Lymphedema Therapist should be consulted at the first sign of swelling to achieve the best outcomes. Survivors should be aware of this potential complication, given information on self-care and instructed to notify the healthcare team with any signs of swelling or infection. __________________________________________________________
Thanks to Missy for sending me this article.