A Guide for Testicular Cancer Patients

A Guide for Testicular Cancer Patients

Introduction

I was diagnosed with testicular cancer in 1986 and had a testicle removed. In 1987, I had four cycles of chemotherapy over 3 months which was successful.

In 2015, the cancer returned and I had a further four cycles of chemotherapy over 3 months. I had two cycles of another regimen of chemotherapy in August 2015. In 2016, I had four cycles of another regimen of chemotherapy.

I have received treatment in four hospitals in the UK. This guide is intended as a summary of what I have learned during this period. It is not intended to replace or be a substitute for the advice and services of professional experts. I hope that you find it useful.

Prompt Treatment is Essential

Testicular cancer (specifically metastatic teratoma) is an aggressive illness which only responds well to prompt treatment. Delayed treatment leads to a much poorer prognosis.

Diagnosis

A common symptom of testicular cancer is pain in the lower back.

Testicular cancer is diagnosed following a CT or MRI scan and blood tumour marker tests. It is common to have a scan of the chest, abdomen and pelvis. You could also have a scan of your head. The presence of any metal in your body should be declared to the operator of the scanner (the radiographer). It could still be possible to have a scan. All scans carry with them a degree of risk. For example, CT scans lead to exposure to X-ray radiation. You will normally receive an injection of contrast during a CT or MRI scan. Scans are compared with previous ones (if available). Any abnormalities in the lungs can be seen clearly on a CT scan. (Chest X-rays seem to be less useful than CT scans in monitoring abnormalities in the lungs). A radiologist will look at the scan and write a report (which could take up to a week to reach your consultant).

The blood tumour marker tests which are specific to testicular cancer are HCG, AFP and LDH. Their normal ranges of values are 0.1 – 3 (u/L), 0.1 - 7 (kU/L) and 100 – 250 (u/L) respectively. If blood markers are moving away from normal values this is bad. If they are falling, it is an encouraging sign.

PET scans show areas of high metabolism such as cancer. (They highlight regions where lots of energy is being consumed). PET scans can reveal cancerous tissue which does not appear on CT or MRI scans. For example, you might have high blood tumour marker levels but have few abnormalities on your CT and MRI scans. A PET scan can show the location of the tissue which is causing the raised marker levels.

When in the scanner, the machine comes up close to your face. To avoid claustrophobia, it can help to close your eyes.

Treatment

Chemotherapy

The common chemotherapy regimens for testicular cancer are IPO (Irinotecan, Paclitaxel and Oxaliplatin), BEP (Bleomycin, Etoposide and cisPlatin (which contains platinum)), VIP (Vinblastine, Ifosfamide and cisPlatin) and TIP (paclitaxel (Taxol ®), Ifosfamide, and cisPlatin. A cancer may be responsive to some regimens but not to others.

High-dose chemotherapy

High-dose chemotherapy should only be used when there is a chance of a cure, as it carries a risk of death. Your immune system is weakened as a result of it. Your body becomes vulnerable to fungal infections. High dose chemotherapy is not used when blood tumour markers are rising as the risk outweighs the likely benefits.

Ahead of possible high-dose chemotherapy your stem cells will be collected. This involves having G-CSF injections (Granulocyte-Colony Stimulating Factor) to encourage the production of stem cells. The injections are followed by being connected to a machine which harvests stem cells. If the collection is successful, the cells will be returned to you after the high dose chemotherapy, to boost your white cell count.

Surgery

Lymph node dissection in the abdomen and chest sometimes takes place after initial chemotherapy.

Radiotherapy

This is sometimes offered as a treatment for back pain due to cancer.

Oral chemotherapy

A regimen of oral etoposide tablets is sometimes offered as a palliative treatment.

Side Effects

Different regimes cause different amounts of sickness. If vomiting, drink plenty of fluid. Take anti-sickness tablets regularly. Measure the volume of sickness and record your fluid intake. Try to get some rest overnight.

Diarrhoea can be caused by chemotherapy. This is because some chemotherapy regimens affect the lining of the gut. Also, diarrhoea can be a result of infection (perhaps picked up in hospital). Record the frequency for a fluid balance (input and output). Keep drinking to avoid becoming dehydrated. If due to infection the diarrhoea may clear up in a few days. Carry a change of underwear.

If suffering from continuous diarrhoea and sickness take medical advice. It might be necessary to go to your nearest Accident and Emergency department (A and E) for an anti-sickness injection.

Hair loss is a common side-effect of chemotherapy. When your hair is falling out, it can be collected in a bath by placing a sieve over the plug hole. Keep warm by wearing a hat.

Tracking occurs when chemotherapy harms the vein. There is red inflammation from the site of the cannula up the arm to the arm pit. The cannula should be re-sited promptly to the other arm.

Cancer increases your vulnerability to a clot (also known as a Deep Vein Thrombosis or DVT). Chemotherapy further increases your vulnerability. Clots can occur after a long time in bed in hospital. To reduce the risk of thrombosis, try to get some physical exercise such as a walk off the ward. They appear as reddening and soreness of the calf. They can be confirmed by an ultrasound scan. There is a risk that a clot will spread to your lungs (known as a pulmonary embolism). If you suspect that you have a clot, you should see your GP or go to your nearest A and E department as soon as possible. Treatment for a clot might include anti-coagulant injections or tablets.

Chemotherapy can lead to reduced kidney function, a permanent reduction in hearing and reduced lung function. Hair will grow back in a few months.

Many regimens of chemotherapy reduce the white blood cell count and the platelet count. This increases your vulnerability to infection. In order to increase your white blood cell count you could be given G-CSF (Granulocyte-Colony Stimulating Factor) injections. G-CSF injections help your body to produce white blood cells.

If the cancer has spread to your bones, its presence could be revealed after chemotherapy. Once chemotherapy has killed the cancerous tissue, there remains healthy bone tissue. A subsequent CT scan will show abnormalities in the bones. That is, it will be apparent that some tissue has been lost.

Managing and Coping

Shortly after diagnosis, you should be assigned to a nurse specialising in cancer care. You should be given the nurse’s contact details so that you can get in touch with questions or to discuss problems.

A permanent line (known as a central line or a Hickman line) is a tube into a vein in your chest which can make it easier to receive chemotherapy. It carries a risk of infection near the site of the connection.

While in hospital, unless you have an infection, it is better to share a ward (than have your own room). Other patients can raise the alarm during the night if you have problems (e.g. a fit). Try to get washed and dressed every day. Your case could be discussed in various meetings of doctors. Initially, this is likely to be a urology meeting. It might then be a regular (such as fortnightly) regional cancer meeting of cancer specialists. These meetings will include oncologists, urologists and radiologists. The minutes of a regional meeting could include recent scan and blood test results, the latest decisions made, and past scans and decisions.

If you have been referred away from your local hospital, ask if you can have blood tests close to home.

The frequency of blood tests (e.g. Full Blood Count) while in hospital varies according to the preference of your doctor. Some doctors think that daily tests are unnecessary.

Distribution of Information

Keep everyone involved in your care up-to-date. It is important that all the doctors know what the others are doing. If you get a letter from a consultant, check that your GP is listed as a recipient. If not, print a copy and hand it in at the surgery. This also applies if you have more than one consultant (e.g. an oncologist at more than one hospital, after a second referral).

Appointments

Check the letters you receive for accuracy. Read appointment letters and leaflets carefully. Attend appointments whenever possible. Try to attend with a relative or a friend. A relative or friend provides a second pair of ears for you, so that you don’t miss or fail to understand something, when you might be feeling stressed. They can help you to assimilate difficult (or detailed) information. Also, they can support you when being asked to make a difficult choice. Check that scan appointment letters are for the right part of the body. If you think that another part should be scanned as well, check with the secretary of your consultant. If you cannot attend an appointment, always reply to cancel.

Keep your own record of hospital appointments. This can be made on the back of the appointment letter. Record what you are asked, summarise what you said, note any decisions made with the doctors, and list any tests which took place. Also, ask for the results of previous tests (i.e. blood tumour marker tests and scan results) and add this to your record. Ask to see the recent scans on the hospital’s computer system.

Keep a copy of all leaflets, appointment letters and discharge summaries. If you are asked, opt to receive copies of letters to your GP and to your consultant. Arrange appointment letters in a bundle, by order of time. Arrange doctor’s letters in the same way. Consider indexing the bundle. That is, write a timeline of appointments, and other hospital contacts, with a reference to each letter. Mark each letter in pencil with a reference (e.g. LettertoConsultant1 or LtC1).

Access to Record Requests

If you formally request access to your records, you should receive a DVD or CD of CT, MRI, X-Ray and Ultrasound scans. You should also receive copies of letters to your GP, letters to your consultant, discharge summaries, imaging reports, medical notes (i.e. handwritten or typed up notes of a doctor), nursing notes, emails of doctors, blood test results, and the results of other tests (e.g. kidney function test, lung function test, or hearing test).

You could have to pay an administrative fee for access. You can apply for access to hospitals and to a GP surgery. There might be a fee for each application.

Sources of Information