CHEMOTHERAPY
Note: Your Urologist may suggest that chemotherapy is appropriate for your case. There is nothing wrong with that, and you'll probably want to ask him some questions. However, if this does happen to you, your first question should be "Do you know a good medical oncologist in the area that has treated testicular cancer in the past?" The urologist probably knows something about chemotherapy, but you are better off saving most of your questions for an oncologist. Beware that urologists in Germany and other places in Europe like to prescribe chemo themselves. If this happens to you, I would urge you to go to a medical oncologist instead.
WHY CHEMO?
- Why is chemotherapy being recommended for me?
- What percentage of patients usually respond to this treatment?
- Will I be cured?
- What are the risks of the treatments?
- Do I have any other choice of treatment?
- How soon should chemotherapy be started?
- What does it take to say we're done? What is the criteria to stop treatment and go to the monitor phase?
WHAT KIND OF CHEMO?
- What drugs will I be taking?
The answer should normally be a combination of Bleomycin (Blenoxane), Cisplatin (Platinol), and Etoposide (VP-16). It is possible that Ifosfamide (Ifex) might be used instead of Bleomycin, and it is also possible that the Bleomycin will not be used at all. If any other chemotherapy drugs are going to be used, or if Cisplatin or Etoposide are not going to be used, ask a LOT of questions. The doctor is NOT following a standard protocol!
- Why have you chosen these particular drugs for me?
- I am a diver/pilot/athlete. Is it possible for me to receive a protocol that
does not use Bleomycin?
- How many cycles of chemotherapy do you think I will receive?
The answer should
be either 2, 3 or 4, depending on circumstances. Note that Indiana University
does not give 2
cycles of chemo to patients that have not had an RPLND, and they do not recommend
that protocol. If your doctor tells you that you will need more
than 4 cycles of chemo, the doctor is probably not familiar with the currently
accepted protocols. Ask them to contact an expert to discuss your treatment.
- Is this protocol one recommended by the National Cancer Institute, Indiana University, or Memorial Sloan Kettering Cancer Center?
- Have you treated someone for this stage and type of testicular cancer before? If so, how many and with what result?
- Would you be willing to consult with an expert if a problem arises?
- If my white count is low at the beginning of a chemo cycle, would you give me
the chemo or would you delay it a week?
This is an important and leading question. The answer should be that they
will give you the chemo regardless of the blood counts. If they say that they will
delay the chemo by a week, ask them to contact an expert from our experts list and
discuss this issue before it becomes a problem.
- Will I receive the chemo on an inpatient or an outpatient basis?
- If chemotherapy will be given on an outpatient basis, will I need someone to
accompany me?
- Where will I have to go for treatment?
- In what form will the treatment be given? (IV, Pills, or Shots?)
- How long will each treatment take? How many treatments will I have?
- How long will the entire course of therapy last?
- How often will I be treated?
- What type of results should I expect to see with the treatment?
- Will there be tests during my treatment to determine if it is working?
- Where will I receive my treatment?
- What sort of hospital room will I be in?
- Is there somewhere I can be treated with people of my own age?
- Can someone accompany me to my treatment?
- Can I drive to and from my appointments?
- Can I stay at home alone after my treatments, or should I have someone stay
with me?
- Who will administer my treatments?
- How often, during treatment, will I see a physician? a nurse?
- What will it feel like to get treated?
- How quickly must I decide about my treatment?
- What are the telephone numbers I should have in order to reach you? the nurse?
the hospital?
- Will a reduction or delay in treatment reduce my chances of being cured?
- How do I know I'm getting the best treatment?
- What happens when the treatment is over? (Will I need surgery?)
- What happens if the treatment(s) haven't worked?
- Can I continue to work, exercise, etc. during or between these treatments?
- Can I still go out and continue at school/college?
- I've got to wait a few weeks for tests - won't that let the cancer
spread?
- When do I next see you?
- Are there any medications I should not take while I'm going through
treatment?
- Are there any activities I should or should not do following treatment? (Alcohol? Smoking?)
- How soon after treatment can I go back to work?
- How often are checkups and tests required after treatment is completed and
which specialist will manage my care?
- What can I do to prepare for my treatment?
- Do I need to be on a special diet? Should I buy any special foods to eat after
each cycle?
CHEMO SIDE EFFECTS
What are the side effects of the drugs I am going to have? When might these
side effects occur? (Detailed information on each drug can be found on the
TCRC Chemo Links Page, but the doctor can tell you about the more common side effects.)
- Fatigue
- Nausea
- Vomiting
- Hair loss
- Low blood cell counts (anemia: low red-blood-cell count, neutropenia: low
count of one type of white-blood cell, low platelets, etc.)
- Neuropathy (damage to nerves)
- Reynaud's Phenomenon
- Hearing loss
- Tinnitus
- Diarrhea/constipation
- Skin changes - Bleomycin can cause dark streaks
- Infertility or sterility
- Pain
- Sores along the digestive tract
- Taste changes
- Slow heart beat
- Irregular heart beat
- Which side effects should I report to you immediately?
- What do I do if I think I have an infection while on chemo?
- How will I know if I have an infection?
- Should I go to the emergency room if I have a temperature?
SHORT TERM CHEMO SIDE EFFECTS
- Will side effects get better/worse/same over the course of treatment?
- What kind of "schedule" can I expect during the chemo cycle (when will I begin having nausea, when will I stop having nausea, when will my blood counts be lowest)?
- Could these side effects be life-threatening?
- Who do I call if I have an emergency medical situation during my treatment, or
shortly afterwards? What do you consider an "emergency"?
- Who do I call if I have severe or painful side effects, but am not in any
immediate danger?
- What can/will be done to prevent these side effects or reduce their
possibility?
- How long will the short term side effects last?
- Will the treatment affect my work/education?
- Will my treatment affect driving?
- Will I still be able to look after my family, or will I need help?
- How long will it be before I feel better and can get back to my normal
routine?
LONG TERM CHEMO SIDE EFFECTS
- What are the long term risks of this treatment?
- Are any of side effects permanent? Will any of these side effects interfere
with my current lifestyle?
Bleomycin may cause lung damage that might
prevent you from scuba diving, etc. You know more than your doctor what is
important to you. If you have specific concerns, bring them up!)
- How will it affect my sex life and fertility?
- How can I find out more about banking sperm?
If banking sperm is important
to you, do not let the doctor talk you out of this. In the past, a lot of men
were told not to bank sperm because the quality of the sperm was not good
enough for artificial insemination. That is no longer true, and all chemo
patients who are interested in preserving fertility are encouraged to bank
sperm.
Do I have time to bank some sperm before beginning treatment?
What is my prognosis for fertility following treatment?
Can I still have sex?
If I have sex during or right after my treatment, will my partner be at risk in
any way?
While I realize that I may be infertile after chemotherapy, should my partner
and I still use protection? If so, what kind and for how long?
How will I know if the treatment has caused long-term damage?
CHEMO SUPPORT
- Where can we go to get emotional/mental/marital/medical support during
treatment? Does the hospital/clinic offer such services?
- Who can provide help for me at home?
- I'm worried of what my friends will say. How can I handle that?
- Will I be able to live a normal life when I get older?
CHEMO MISCELLANEOUS
- Can changing what I eat help me recover from my cancer and/or the
chemotherapy?
- What type of costs am I looking at?
- What can I do to help myself?
