Long-term survival after cancer / survivorship

A frequent late consequence can be cataract with thickening and clouding of the lens. Risk factors are therapy with cortisone or busulfan (chemotherapy), as well as cranial or total body irradiation. A cataract is usually well treatable by minor surgery.

In addition, after stem cell transplantation (SCT) from a family or unrelated donor, also known as allogeneic SCT, symptoms such as rubbing, burning or a sandy feeling of the eyes may occur, indicating eye dryness. The cause is often a reduced production of tear fluid, which can occur in the context of a chronic graft-versus-host disease (GvHD).

Note: When visual disturbances occur, an ophthalmological examination is always necessary.

Hearing impairment may occur especially after therapy with carboplatin/cisplatin (chemotherapy) or cranial irradiation. Hearing impairment usually affects both ears, may persist permanently, and may increase after the end of therapy. Typical symptoms are a hearing loss in the high-frequency range and permanent hearing noises (tinnitus). They are more likely to occur when children under 5 years of age have been treated, and in cases of pre-existing diseases or pre-existing malformations of the auditory tract.

Note: When hearing disorders occur, an ENT medical examination should be performed.

Diseases of the teeth, such as caries, damage to gums or enamel, malpositioned or missing teeth, or temporomandibular joint disorder, occur primarily when therapy has been given to children with milk teeth. Older patients* may also develop problems with their teeth and/or gums after chemotherapy or radiation of the head. In addition, long-term therapy with certain drugs that suppress the immune system (e.g. calcineurin inhibitors such as ciclosporin A or tacrolimus) can increase the risk of occurrence of secondary tumors in the oral cavity.

Note: Regular dental care is particularly important, recommended are dental checkups every 6 months and an annual professional dental cleaning.

Diseases of the heart often affect the heart muscle ("cardiomyopathy"), the heart valves or the vessels ("coronary heart disease"). Risk factors for the development are a young age at diagnosis (< 5 years), radiation therapy to the chest and/or therapy with anthracyclines. Anthracyclines are chemotherapeutic drugs andinclude, for example: Daunorubicin, Doxorubicin, Epirubicin, Idarubicin.

Individual factors such as pre-existing diabetes mellitus, obesity, arterial hypertension, lipid metabolism disorders and/or smoking contribute to an additional increased risk.

As part of the follow-up examinations, an ultrasound examination of the heart (echocardiography) should be performed to assess the cardiac output (pumping function) if a risk profile exists or if symptoms such as shortness of breath or swelling of the legs due to water retention occur.

Note: Please check your chemotherapy schedule to see if anthracyclines were used.

Tip: Under "Tips and tricks“, you will find instructions on how to keep your heart healthy and minimize the risk of cardiovascular disorders through a healthy lifestyle.

Some chemotherapeutic agents, such as bleomycin or busulfan, targeted cancer therapies, and/or chest radiation can damage the lungs. Pre-existing lung disease or smoking increase the risk of late and long-term lung toxicity. Symptoms may include shortness of breath at rest and/oron exertion, and/or coughing. However, these symptoms can also occur with other diseases such as heart disease and should therefore be clarified by a doctor during follow-up care.

Remember: Every cigarette does additional damage to your lungs. It is therefore important to give up smoking.

The kidneys can be affected with a reduced function known as renal insufficiency. Symptoms can include a reduced urine volume, shortness of breath, and water retention (edema). Chemotherapeutic agents such as ifosfamide, platinum-containing chemotherapies or radiation in the upper abdomen are harmful to the kidneys. Kidney dysfunction is more common when there is a younger age of onset of therapy. Additional diseases such as diabetes, high blood pressure or increased alcohol consumption often damage the filtering capacity of the kidney. With progressing renal insufficiency, blood washing (dialysis) may become necessary.

Remember: Drinking enough is important! Depending on body size and weight, a minimum of 1.5 l per day is recommended, better 2 l per day. If you already have renal insufficiency, the amount you drink may need to be adjusted - please discuss this with your doctor. Avoid the (permanent) intake of medications that can additionally damage the kidney (e.g. painkillers such as ibuprofen and diclofenac).

This refers to functional disorders of the hormone-producing organs. They include, for example, the thyroid gland, the parathyroid gland and the pituitary gland. The following late and long-term effects may occur:

Sexuality and partnership are essential factors for general well-being. Nevertheless, in clinical practice, questions about intimacy are very often neglected despite the knowledge of their importance. The body and body image, but also social life can change after cancer therapy. Various problems may occur (such as weight loss, muscle wasting, pain, hair loss, vaginal dryness, erectile dysfunction, problems in the partnership), which may lead to sexual discomfort. These need not only concern sexual intercourse and reproduction per se, but can also mean problems with touch, tenderness, affection and trust. In a conversation about it - in addition to the exact collection (anamnesis) of the hematological/oncological underlying disease, concomitant diseases (such as diabetes or thyroid diseases, operations, therapies) and the search for organic causes - it should also be asked about medications that can have an influence on sexuality (e.g. antidepressants, anti-hormonal preparations, beta blockers, etc.). In clarifying organic causes, a gynecological and/or urological examination and determination of hormone status (testosterone, estrogen, prolactin) can be very helpful. In addition to medical treatment with medications (e.g. local hormone therapy with creams, lubricants, PDE-5 inhibitors such as sildenafil (Viagra®)), psychological counseling can also provide additional support.

Tip: Dare to proactively address the topic of sexuality as part of your follow-up care and accept appropriate help.

After many blood transfusions (usually >15-20 red cell concentrates) as part of cancer treatment, the iron level may be permanently elevated. The excess iron is stored, for example, in cells of the heart, liver or pancreas and can cause functional disorders. General symptoms may include fatigue, weakness and / or joint complaints. To detect an iron overload the level of ferritin is analyzed in a blood sample (not iron!). If iron overload is detected, the excess iron must be removed from the body. The iron level must therefore be reduced.This can be done by medication or phlebotomies, i.e. therapeutic withdrawals of a maximum of 500ml of blood at regular intervals.

Diseases of the peripheral nervous system ("neuropathy" or "polyneuropathy") can also be a complication after cancer treatment. Often this is only temporary, but in some affected individuals, it can last longer. Particularly "peripheral" nerves in the hands/feet, which are responsible for tactile sensation, pain transmission and temperature sensation, are frequently affected. Chemotherapeutic substances are usually responsible for symptoms such as tingling ("formication"), burning, numbness, muscle weakness or pain in the soles of the feet or fingertips. These can destroy nerve endings, nerve cells, or even the insulating sheath around nerve cell processes. There are some individual risk factors for developing such a neuropathy, such as diabetes mellitus or regular, increased alcohol consumption.

In addition, the autonomic nerves, the fibers that "automatically" control the internal organs and functions of the skin (such as heartbeat, digestion, circulatory regulation or sweating), may also be affected. This is a sub-area that is not yet very well understood. For example, an affection of the digestive tract may manifest itself in digestive disorders, diarrhea and abdominal pain, or blood pressure may respond only delayed to stress and dizziness occurs. Up to now, polyneuropathies can only be treated symptomatically.

Note: Regular exercise and vibration training can also help with neuropathies! Physiotherapeutic measures (e.g., carbonic acid baths) or occupational therapy (e.g., lens baths, therapeutic clay) can also lead to relief of symptoms. If the feet are affected by the polyneuropathy, podological treatment may also be useful.

As a consequence of chemotherapy and radiation, further cancers ("secondary malignancies") may occur. These can affect the blood system ("hematologic disease" such as leukemia) or organs ("solid tumors" such as breast cancer). They can be diagnosed early after completion of initial treatment or decades later. A genetic predisposition or older age may favor second tumors. In principle, any chemotherapy can potentially cause a secondary malignancy; certain substances (such as etoposide) and radiation therapy to the upper body or abdomen are particularly associated with an increased risk. The dose administered also plays a significant role. In addition, however, there are also individual risk factors that predominantly relate to lifestyle (such as smoking, obesity, lack of exercise). After cancer therapy, preventive care should therefore be provided by appropriate specialists, e.g.:

• Dermatologist*s for mole control

• Gynecologists for screening or early detection of breast and uterine cancer

• Gastroenterologists for colorectal cancer screening

• Urologists for prostate cancer screening

In order to reduce the risk of secondary malignancies, therapies continuously improve and targeted substances and immunotherapies are becoming increasingly important in this context. In the field of radiotherapy, technical development is a major goal in order to avoid high doses for patients and to optimize the radiation field.

Tip: Make use of the preventive examinations for early cancer detection (e.g. skin, colon, breast and uterine cancer screening)! Take care of yourself and ask your doctor about unspecific symptoms such as unwanted weight loss, night sweats and/or unclear fatigue. Under "Tips and tricks“, you will find instructions on how you can influence your subsequent malignancy risk through a healthy lifestyle.

The serious and drastic experience of a life-threatening illness can trigger or intensify mental illnesses (such as anxiety and/or depression). These can be accompanied by pronounced emotional distress (such as sadness, withdrawal from everyday life, loneliness, sleep disorders, suicidal tendencies).

Tip: Get help! Sometimes it may already help to talk about the complaints with other survivors, e.g. in the meeting places of the German Foundation for Young Adults with Cancer. In addition, psychological counseling can provide relief. There are specially trained psychologists for psychological problems associated with cancer, so-called psychooncologists. We have compiled further information for you in the AYApedia chapter Psychooncology (see AYApedia Psychooncology) here.

The stress reaction resulting from cancer can also cause problems in school, training and work, which can make it difficult to return to a normal life or to build up a daily routine. Various other risk factors often play a role as well, including tumors of the brain, chronic pain, family and social influences, individual personality and previous mental illness.

Tip: A rehabilitation measure can improve performance before a planned reintegration into everyday life and training or working life. This can also be applied for more than once if necessary. Ask specifically about rehabilitation programs for young adults and make a consultation appointment with social services. For more information, see the AYApedia chapters on "Rehabilitation" (see AYApedia Rehabilitation) and "Occupation and Social Services" (see AYApedia Occupation and Education). You can get individual advice under the heading "Social legal issues" in the Young Cancer Portal.

In the case of fatigue, most sufferers report persistent, pronounced fatigue and a feeling of exhaustion, which do not improve permanently, even with sufficient rest and breaks. Other symptoms of fatigue include a lack of energy and desire, general weakness, difficulty concentrating, remembering and finding words, loss of physical and emotional resilience, disinterest, reduced libido, loss of motivation and sleep disturbances. This multi-faceted condition can have a significant impact on patients' lives even during therapy. Even after completion of therapy, fatigue can persist despite healing of the underlying disease and prevent patients from leading a life as before the disease.

Mental illnesses such as depression must be distinguished from this. This is important because the treatment approaches are different. The therapy of fatigue is only symptomatic. Regular physical training, adapted to what the individual can manage, is particularly important. In addition, sufficient breaks and rest periods should be scheduled. It is important to be informed!

Tip: We have compiled more detailed information for you in the AYApedia chapter Fatigue (see AYApedia Fatigue).

As a result of cancer treatment, many people notice changes in their abilities with regard to memory, learning new things, remembering and finding words, concentration, and planning and making everyday decisions. Some of those affected cope well, but for others, quality of life suffers significantly. Chemotherapy is not the only factor that can affect brain function; other factors such as sleep disorders, hormonal changes and psychosocial factors also play a role. These "cognitive" impairments are often associated with complaints of fatigue, i.e. chronic exhaustion.

The risk is increased at a young age of onset, if there has been an attack on the central nervous system or if the head has been irradiated, and also if there are pre-existing attention or learning disorders.

Tip: Be patient. Give yourself and your body time to deal with the consequences of the disease and the therapy. In most cases, the symptoms improve as the disease progresses. There are also many ways to improve brain performance, e.g. through memory or exercise training. Relaxation exercises and autogenic training can also be helpful. Find out more!