Although I wrote the following with cancer treatment in mind, many of these tips can apply to any kind of medical treatment.
Realize that a cancer diagnosis and treatment changes everything about life as you once knew it. A cancer patient can become easily frustrated over things that never bothered him/her previously. Emotions can easily surface, as the patient is having to deal with a life-threatening illness, side effects of treatment, side effects of the cancer itself, changes in work status and routine, changes in physical appearance, financial stress, loss of social activities, loss of physical capabilities, etc.
Let oral surgeons and dentists know if the patient is taking treatments to strengthen bones prior to invasive oral procedures. Oral surgery can cause osteonecrosis (death) of the jawbone (known as ONJ).
Ask what food, drink, or activity the patient should avoid on medications.
Find out if it’s safe to have sexual relations without protection while on chemo, since some drugs are excreted in bodily fluids.
Find out if it’s safe to get pregnant while being treated.
Remember that it’s a patient’s right to have full disclosure of possible side effects and complications to make an informed decision.
It’s a patient’s right to refuse treatment. The patient has the final decision regarding treatment; you must respect that decision, and so must the medical professionals.
Ask for medications to deal with side effects.
Seek treatment for depression, if needed.
For women undergoing cancer treatment, contact cleaningforareason.org for free periodic cleaning service. There is usually a waiting list.
Keep a list of medications, foods, and drinks that are contraindications to prescribed treatment (such as grapefruit or antibiotics in the quinolone family). Check the list against every medication prescribed. Don’t assume a doctor knows what the patient can’t have, especially if the patient is in a clinical trial. (The clinical trial administrator can provide you the information.)
If the patient is in a clinical trial, make sure you know what tests and procedures are to be done at each visit and the frequency. Make sure they get properly scheduled.
You must be proactive with the patient’s care. If possible, do your own research on treatments available for the patient’s type of cancer (including clinical trials at www.clinicaltrials.gov). Knowledge is power. You may download a sample of the spreadsheet I used to list pros and cons of each treatment option.
Be aware that the government’s clinical trial website isn’t updated as fast as it should be. Trials may be open although the website might reflect they haven’t opened yet. Or they may be closed while gathering results, yet the website shows they are open. Confirm with either the pharmaceutical company or principal investigator listed on the trial.
Be discerning when a doctor recommends a treatment. Is it really the best option at that time, or is the doctor recommending it because that’s all that is available at that particular facility? Is there a better treatment option elsewhere? Your loyalty is to the patient—not to the doctor.
Beware of quacky alternative treatments that promise a cure. Visit www.quackwatch.org.
If you decide to use an alternative treatment method, make sure that your oncologist is aware of it and approves of it.
Always have a backup plan for everything, including your next treatment option. Find out what the Overall Response Rate (ORR) is for each treatment to help you make a decision. You may download a sample of the spreadsheet I used. (I have a sample of actual data included to show you what type of information is helpful, but keep in mind this is out of date.) Keep track of what trials you’ve researched and which ones the patient might qualify for versus the ones that aren’t viable options (so you don’t keep looking at the same ones by mistake).
Find other people with the same diagnosis (including the same genetic mutation). [Try the website www.inspire.com.] Find out what treatments did or didn’t work for them. Share what you learn with your doctor. You may learn something that the doctor wasn’t aware of that just may be the key to curing the patient faster.
The patient and caregiver need to work as a team with the medical professionals. The patient’s medical information is usually scattered in many different databases (various doctors’ offices, hospitals, and unwritten family history). It’s imperative that you give the doctors a complete medical history.
You are your own best advocate. Be vigilant. Even the best professionals don’t know everything and can make mistakes.