Newly Diagnosed

I agree! That was a great answer, Martine! And, Yes, IT IS super important NOT to ACT on any medical procedure until all the options are on the table. Within the last month, I had my sister discussing a situation with me about a friend's recent breast cancer dx. She was still considering a bilateral mastectomy. I suggested my sister might try to see if she could have her friend delay that surgery. There was no stopping her. Fast forward a few weeks and circumstances tipped the scale. The plastic surgeon did not see a problem but did indicate she **might** encounter an issue with a one step implant (no tissue expanders) due to the scar tissue from the lumpectomy.

BREATHE, BREATHE and BREATHE some more......

Also, helpful to talk to a patient volunteer who can discuss the less clinical and more practical side of the decision making process. Of course, as a patient volunteer, I can only share what worked for me. And, I can help decipher the options provided by the medical team.

Just another thing to consider.... If you have been diagnosed with a serious illness, you might need time to absorb what the doctor has explained to you. For most of us, it is difficult to distill all of the information from a doctor even if the diagnosis is not serious.
Some good tips:
1. As your doctor for information on your diagnosis. He/she might have pamphlets for you to read. Ask for credible websites you can research yourself.
2. If you have not gotten all of your questions answered in the appointment with the doctor when you were given the diagnosis, make another appointment or possibly call him/her on the phone. Most doctors are not paid for phone calls so you might be better off seeing this doctor in person for a number of reasons.
3. Before that appointment, create a list of questions.
4. Get a notebook for these questions. You can do research on your diagnosis on credible websites only (websites ending in .edu, .gov or .org--medical academies, disease organizations, medical school websites, government websites) Bring that notebook with you to your appointment with the doctor and write down the answers to your questions.
5. Enlist an advocate. It's hard enough to deal with a new diagnosis much less remembering every detail of information. Your advocate can act as your second set of ears and eyes. She/he can even take notes for you in your doctor's appointment.
6. Gather copies of your medical records from the doctors you've seen that pertain to your current diagnosis. Make copies so you have a packet for each medical professional you see. This will also include your list of medications, dosages, allergies to medications, over-the-counter medications, herbs and supplements. If you see a new doctor or more than one specialist, you will need to present a complete picture to each professional. You cannot count on doctors and their offices to send copies of your medical records to other doctors. You cannot be sure that your doctors will talk to one another about your case. You must help facilitate this communication process. Ask your advocate to help you with this.
7. Get a second opinion from another specialist about your diagnosis and treatment plan, preferably a specialist affiliated with a highly respected medical school. This is not to doubt the first doctor's diagnosis, but to gather further information about your diagnosis, possible treatment plans,and more. You might find out there are alternative treatments you have not thought about. This is very important.
8. Create a support system. You will need a support system but if you have a spouse/partner and/or children, they will need support as well. For example, if you cannot drive your children to their after-school activities, who will? You can ask your advocate to help you with this.
9.Create a medical journal. Going through a serious illness requires a steep learning curve on your part and you will be learning new language and how to navigate a new world. Taking notes on new doctors, terminology, possible treatments, new research, possible medications and more, can help keep you organized, but more importantly, help you feel more in control of your medical care.
10. Get familiar with your health insurance plan. Find out what is covered by your plan and what isn't. Being prepared is so much easier now rather than later.
11. Research proposed treatment plans and weigh the benefits and risks of a treatment plan. Ask questions. Get educated on your disease. You'll be able to ask more effective questions but you'll also feel more empowered.

Hmmm, interesting Murray...that is the question that I was posing on an earlier date. Where are the oncologists in the decision making progress PRIOR to surgery???? Interesting that you are taking up that question now.

My first signs of breast cancer was feeling bloated all the time, and SERIOUS pain in my back that came and went to the point where I could barely walk and needed a wheelchair. But still the surgeon did not pick up on this and the ONCOLOGIST DID. IMPORTANT: YES Hmmm, interesting Murray...that is the question that I was posing on an earlier date. Where are the oncologists in the decision making progress PRIOR to surgery???? Interesting that you are taking up that question now.

My first signs of breast cancer was feeling bloated all the time, and SERIOUS pain in my back that came and went to the point where I could barely walk and needed a wheelchair. But still the surgeon did not pick up on this and the ONCOLOGIST DID. IMPORTANT: YES

First, you need to slow down by using deep breathing techniques, buy some meditation tapes and get a journal to keep track of your feelings and what you are going through.
That being said, there are number if factors that will determine what your treatment options are, for example:
What stage _____ are you; What grade _____ are you? Have you had your biopsy yet and, if so, did you have clear margins, were any lymph nodes involved, etc. If you need a list of questions to ask your oncologist, please e-mail me and I will send you a list.
I am a two time cancer survivor and a Certified Professional Cancer Coach, just like Elyn. I also work with cancer patients with the goal to get them through this journey and come out the other side thriving and surviving.
Susan Mayer-McHugh
susan@helpyouhealcoaching.com


This is such a complex question, and there is no one answer. An excellent resource is http://ww5.komen.org/. The first link on the top of the page is "Understanding Breast Cancer." There are several choices in the drop-down menu, including Questions to Ask Your Doctor. That is divided into sections every step of the way.

Ask your doctor if there is a "Breast Cancer Navigator" or a "Peer Navigator Program" at your hospital, or call the local cancer center. You can also Google "Peer Navigator Program" to find one near you. There are women there who can help guide you through each step and provide resources to help you sift through the decisions you will face.

As you go to your upcoming medical and testing visits, it's helpful to take a list of questions, a notebook to write answers, as well as a supportive friend, spouse or family member with you as a second set of ears.