You only get one chance to fight cancer the first time
You’ve just been told that you have this life-threatening and scary disease. It is okay to flip out, cry, be angry, to feel overwhelmed and lost. I know. I’ve been there. It hurts. It sucks. But try not to wallow in these emotions. You have important work to do, and you need your wits about you.

Gather your Network. Ask lots of Questions. Do your Research. Make your Plan.

This is not easy, you may need help from a therapist or other advisor, meditation, yoga, exercise or time with loved ones, but you can view this as a big problem to be tackled by you, a strong fighter.

Gather Your Network
Surround yourself with people who will help. You will be amazed at how many people will reach out to you if you allow them to. People are fundamentally goodhearted and caring if given the opportunity. Don’t be surprised if some of your friends and family are not be able to handle this right now. That’s understandable, and hopefully those relationships will work out with a little time.

Have a friend or family member with you at all times when you meet with doctors. They are really helpful for taking notes. I have left many a meeting with a doctor and then wasn’t sure about some of the information. Having a designated note-taker is extremely helpful for clearing those things up and avoiding follow-up phone calls. This will also give you some people to discuss your choices with.

Beyond friends and family, you can reach out to other survivors for great advice. Get involved in conversations like those at any of the discussion boards below. And of course, you can always follow us here, or email me at esther@cancer-dancer.org.

Do Your Research
Spread the word of your diagnosis to your friends and family, especially those in the medical field, and ask them to find out who the very best doctors are around the country. If you have the ability to go see a few of these people, do it.

If there is any way possible, contact a major teaching hospital. The fellows there know the absolute latest information about treatment options. They can help you better consider whether a clinical trial is right for you. You want to find a doctor and a facility where you feel comfortable and have great trust. There is enough frustration in this fight without having niggling doubts about your doctor. Find the one that feels really right to you.

Research treatments online but be cognizant of the source of information.

Consider whether you are open to alternative treatments as well as conventional treatments.

While you are reading books and internet sites, be mindful that you are going to run into sad and scary information; I stopped reading blogs for a while for that reason. You may want a friend to cull this stuff for you and send you things to read that might be most helpful.

Get on discussion boards and ask women who have been through it. Here are a few, you can post questions or read discussion streams on one of them or all of them:

Inspire.com

American Cancer Society

WebMD

MedHelp

Association of Online Cancer Resources

Ask Lots of Questions
When I was diagnosed, I wanted the cancer removed immediately and scheduled surgery for a few days out. I thought that every second counted. In retrospect, I should have solicited a few opinions and done a little more. Remember: You only get one chance to fight cancer the first time. Don’t rush. Here are a few things to discuss with your doctor (and your second opinion doctor):

What exactly is my diagnosis? What stage am I? What kind of tumor do I have? If you do not know, how are we going to find out?

What is your recommendation for treatment at this time? Why? Is this the standard of care? If you are deviating from the standard of care, what is your reasoning?

Do you recommend surgery? If so, do you plan to optimally debulk my tumors? (Optimal debulking is doctor-speak for removing all of the tumors they see — some doctors really adhere to this philosophy, others will leave tumors in tricky spots and rely on the chemotherapy to take care of them later. Listen to the doctors and decide which sounds like the right plan to you).

  • What are my other options? Who would you recommend I consult for a second opinion? Get a second opinion if at all possible.
  • What do you think about clinical trials at this stage?  Can you help me put together a list of trials for which I would be eligible?
  • What information do I need from you to do my own research? Please tell me about the different treatments available so that I can make sense of these options.
  • Can I please have copies of all my medical records that have been created so far? (You will probably need sets in the future so it is good to keep up with them— get a well-organized friend to help set up a filing system and to keep a secondary set for future mailings to doctors, insurance companies, social security, etc.)
  • Should I be genetically tested? Would those results impact your recommendation? Review the Facing Our Risk of Cancer website, Force, for information on hereditary cancer. I fall into this category, and it absolutely shaped my choice of clinical trial when I recurred. Had I known earlier, it might have shaped my first-round treatment choice, too.
Make Your Plan

Good luck. There are brighter days ahead, and you are not alone. If you have any suggestions to add to this note, please feel free to email me at Esther@cancer-dancer.org. And when you get some time, lift your hands to the sky and post that cancerdance. It’ll feel good.


Copyright 2012 by CancerDancer