The below represents my opinions only and is not medical advice. Please consult a doctor for all medical decisions. Please see full disclaimer at the bottom of the page.
If your doctor looks you in the eyes and says your cancer screening came back positive, I will not ask you to remain calm. I will ask that you not accept it right away. This isn’t about denial. It is about false positives. See this article for the percentage of false positives and number of procedures instigated by them.
Okay, let’s move on and sadly assume that the initial diagnosis is correct. What next?
- Form a team
- Get a second opinion
Your own, and your team’s research, will be very important, and depending on the specifics of your diagnosis, should potentially include the following:
- Stages of cancer/ time
- Effectiveness of various forms of treatment
- The best hospitals nationally, and locally
- The most up to date equipment
- Alternative/ complimentary treatments
- Health insurance options/ financial assistance
- Clinical trials
- Cancer consultant
- Message boards
- What to do while waiting (diet and exercise)
Form a team –There is going to be a lot to learn fast. Some of you will have more time than others to make decisions. Until you know that, a cancer diagnosis is nothing to dawdle around with. Family, friends, anyone you trust, who can help you disseminate the below, can potentially make a huge difference.
Some people like to keep their diagnosis private. This is an individual choice, but keep in mind you don’t know what someone else might know that can prove to be beneficial. Maybe they know a great doctor… Have first hand knowledge of something alternative that worked. Or just something, anything, big or small, related to what you may be about to go through that they can help with.
Get a second opinion – From diagnosis to treatment, doctors are not Gods. As alluded to in the opening paragraph, they are fallible. They make mistakes. Their knowledge is not absolute. Some are less skilled than others, and or, are more risk averse.
For example, there are some cancers where surgery may present the best (and only) option for survival. If your surgeon looks you in the eyes and proclaims that your cancer is too advanced and is inoperable, guess what? Another doctor may say something different! Do not give one doctor the power to decree your fate. For something this important it may be worth the time to look for a second, possibly third and fourth opinion! For more information on second opinions click here and click here (scroll down to number 3… although you might like reading 1 & 2 as well.)
Research – Research can keep you busy and here is where if you have a support group helping you, you can divide it up. Everyone will need to become very familiar with google. When doing searches, sometimes the slightest change in how you phrase a sentence can bring up new, different, and or better information. Some websites are more credible than others. Look for substantiated information and cross check important information on more than one website.
Cancer research – What type do you have? What stage is it in? Stage I for example would be the earliest. The higher the number, the more advanced the cancer. Depending on the type and stage of the cancer, you may have more time than you think to make decisions. For example, there may be time where waiting a month for surgery might be okay. And if that extra month means a better surgeon or hospital you may want to wait.
For support of the idea that you may have time, see this myths versus reality page from the MD Anderson Center. MD Anderson is ranked number one overall by U.S. News for cancer treatment.
For general information on staging click here. You will want to research specifically for the cancer you are concerned about.
More cancer research includes: What are the different and most effective forms of chemotherapy and radiation? What are the treatment options beyond chemo and radiation? What are the newest approved techniques and equipment? What are the risks and percentages associated with each treatment option?
Do not assume that all doctors and hospitals are the same! They do not all have the same knowledge, experience or level of care! Some doctors may not have even heard of the latest techniques or be well versed in them! Or if they are, they, or the hospitals they are affiliated with, might not have the equipment! Intraoperative radiation therapy (IORT) is an example. My mother’s surgical team in Las Vegas did not seem familiar with it, nor did the hospital have the equipment if they were.
Know your health insurance! – You might have more options than you think. For example, if you have an HMO, that doesn’t necessarily mean you can’t see someone out of network or out-of-state. Your cancer might require a specific procedure. That procedure might not be done by a doctor in your area OR might not be done by a doctor with much experience performing it. Don’t assume your options… Find out and be aggressive but respectful. This is your life!
How do you know which hospitals are best? – U.S. News provides a yearly ranking of best cancer hospitals. However, what may be ranked as the number one hospital for lung cancer may not be number one for breast cancer. You can search by cancer type. You can also search try to search for information on specific hospitals. You may also find information on websites like consumer reports and by doing your own google searching and researching for your area.
When picking a hospital – If hospitalization is necessary and you have settled on a doctor, ask him or her what hospitals he or she is affiliated with. It might be more than one. You want to know about equipment they have. You’ll want to check into your options for important answers to questions like: How many times your procedure is done at the hospital per year? Here is an article from the American Cancer Society talking about the Whipple procedure and how ideally the hospital will perform at least 20 per year. The Whipple is very complicated, what you may need might not be. But it is sill important to know information about procedure frequency as it may affect the odds of success.
You will also want to know about:
- Rate of death.
- Rate of infection.
- Rate of readmission.
And for other things like:
- Will you be assigned a case manager?
- Visiting hours?
- What the rooms are like and so on.
You can start by checking the hospital websites.
When picking a doctor – Among other things, you want to know how many times they have done what they propose to do to you. What is their success rate? Relapse rate? Expected recovery? Risks? Potential complications. For more sample questions, click here.
You can contact the national American Medical Association and local AMA (google to look up) to see if you can find out any information about a doctor or surgeon you are considering.
You can research and see if the particular type of cancer has organizations that could have helpful information on doctors, hospitals or other information that could be useful. For example, when I was looking for another potential option for my mother I called the pancreatic cancer action network. They were able to give me the name of a doctor and tell me the amount of times he performed a procedure I was being told my mother needed.
There are websites in addition to yelp where you can search for reviews on doctors:
Take these sites with a little grain of salt if the doctor you’re researching does not have that many reviews. Five or six reviews, positive or negative, is a limited sample size, but you may want every kernel of information you can get your hands on.
Listening to doctors: Whether as an inpatient or an outpatient, when it comes to your treatment and decisions, a saying I learned to live by is: Trust but verify. Of course it is important to listen to your doctors. But consider asking (respectfully) the reasons behind why you’re taking or doing whatever it is that is suggested. What are the side effects? If there is a newer treatment option you discover in your research and are interested in, ask your doctor why you are or aren’t right for it.
If hospitalized, you want contact information for all doctors treating you. When tests or procedures are needed, you may need to stay on the staff to make sure they are done.
If there is any medication you might need or want, make sure there is a standing order to receive it. Why? Because if you turn down medicine but decide you need it at a later time, and there is no doctor available to sign off on the order, guess what? You get to wait until there is a doctor who can. Then you get to wait for the pharmacy to be able to deliver it. Better to have it standing by if possible.
Other hospital caregivers – You may need to make sure that all caregivers, anyone responsible for giving you medicine or food, are up to date on your condition. If you have cancer, your diet should be different if you also have diabetes, or if kidney issues arise during treatment. Sometimes there are gaps in communication during shift turnovers and you and your team should be prepared.
One time, this nurse came in to change my mother’s I.V. and the other nurse was going to send her away saying it was just changed yesterday. This was not the case and if I weren’t there to clear it up, the I.V. would not have been changed.
Financial assistance – You may be eligible. Here are some links to investigate:
- Cancercare: Their homepage has a lot of information. And here is their financial page.
- Cancer Financial Assistance Coalition (CFAC)
- Cancer.net’s Patient Guide, “Managing the Cost of Cancer Care”.
- American Cancer Society: information and links on insurance and financial aid.
Alternative and complimentary treatments – Alternative treatments are things that you might do instead of traditional western medicine. Complimentary are things you can do in combination with western medicine. I would encourage you to keep an open mind and explore all options as best you can.
This category of treatment is not always about herbs, diet and new agey options. Sometimes there are FDA drugs that are approved for one purpose that some believe can be affective for another, like cancer.
For example, a diabetes drug, Metformin, is one you may want to look into. Here is a NY Times article about tumor growth, the connection between blood sugar and cancer, metformin and another drug called DCA.
You must do your own research and not rely on this or any one source. You will find pro and con information for most everything.
Especially if western medicine offers little to no hope, a documentary you may want to watch is Cancer – The Forbidden Cures. This documentary outlines the obstacles faced by alternative cures, alleges certain corruption in the system, and then presents a handful of options it states offer a cure. There are others you can research not mentioned in the documentary as well.
My mother’s situation deteriorated too quickly to delve deeply into any of these possibilities so I can’t vouch or speak from experience about them.
One of the challenges of alternative/ complimentary treatments face is because of the lack of profits to be made from them and or other reasons; the research for particular options may not have enough scientific evidence to support it’s claims or get FDA approval. However, depending on the stage of your condition, and what “the odds” are with western medicine, there may not be much risk. Depending on your specific situation,values and research, you may want to consider a different or complimentary path.
One can say there is not enough scientific evidence to prove… but can they absolutely disprove? Science, while very important, is also not infallible or all-knowing. Do not let that prevent you from having hope and exploring. While anyone who would intentionally give false hope is despicable, robbing you of legitimate hope, no matter the odds, is not someone’s place to do to you. Know the odds and make informed choices that are right for you. Trust but verify as best you can.
Cancer Consultant – There is a lot of information to process, and decisions to make. If you can afford it, a professional consultant to help you navigate the process may be a worthwhile consideration. We didn’t use one, and I have not talked to one, so I can’t recommend any. But it might be something you want to explore. Here is a blog about consultants I came across:
Other Websites – Websites like NCI, ACS, Livestrong, Stand Up To Cancer, and Cancer.net may be helpful. A couple of alternative sites you might want to look at are, Healing Cancer Naturally, and The Annie Appleseed Project. Search for organizations related to your diagnosis.
Forums and message boards – They can be a great source of information and way to communicate with people who have been through or are going through what you are facing. You may also find more information about the hospitals and doctors you are considering. Treatments you are considering. Treatments you haven’t thought of. And emotional support.
Until a message board or person on that board earns your trust, be careful with how much personal information you give. And as is the case with all other sources of information, maybe more important here, I repeat, trust but verify.
It is also a great way for “your team” to gather information as well as communicate with others who have been in the supportive role.
What to do while waiting – If there is time between when your diagnosis is made or is in the process of being made, help yourself by taking the best care of yourself that you can.
Kind of an interesting footnote to complimentary care is that there seems to be general agreement that from the point of view of prevention, exercise, diet, and other lifestyle habits can help. Disagreement over these things comes in about the benefits after a diagnosis. Consult your doctor but consider changing your diet. Also consult him or her about exercise and your living and work environment.
Here are some links related to diet to get you started in your research in this area:
Spices have also been studied for their benefits. One that you may want to look into is Curcumin, found in Turmeric. Here is an abstract for you to begin your research.
I hope there is some helpful information in this blog. Or I at least was able to point you in a direction. Over time I may add to it, edit, or write additional articles. And I welcome your comments to this page.
My last thoughts I’d like to share for you to consider before I sign off is, talk to the people closest to you, and be honest with them about your physical and emotional needs. You definitely come first, but this is also a hard time for them. This can be a beneficial discussion for all. And if you can’t communicate your inner most thoughts, fears and emotions to one of them, than perhaps consider a social worker. You can ask your doctor and or hospital about that.
For those reading this who have or know someone with cancer, I pray for a speedy recovery. If you happen to read this article without knowing anyone with cancer, lucky you! I am happy for you and hope you never need this information. Given the one in three rate of a cancer diagnosis for women and one in two for men, odds are many of you will. It is never to soon to become familiar with what you can do. And it is never too soon to take better care of yourself!
Peace And Adventure on the Journey
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