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I still can't believe I need an oncologist

After A Cancer Diagnosis, Then What?

When you first receive a cancer diagnosis, you likely feel overwhelmed by the number of appointments  you suddenly need to schedule and show up at, the questions you have with no certain answers, what your treatment course might be like and the general feeling of loss of control over your life, to name a few. In addition, things often feel as if they are spiraling out of control at unstoppable speed. You, on the other hand, feel like you are moving in slow motion, unable to keep up with life around you.

I remember my primary physician telling me to prepare myself. “Things generally get rolling really fast,” she said. “Biopsies, surgeries and treatments often happen very quickly.”

On the one hand, she was right. Things did get rolling quickly. The avalanche of appointments began immediately. During the first weeks alone, I had ten doctor appointments. I know this because dear hubby keeps track of such things and documented each one. There were even days when I had more than one appointment. I felt like I was being examined, analyzed and questioned over and over. I explained about my “heart attack” to each new face I saw, every time feeling a bit more foolish about my wrong self-diagnosis.

Next, the process of gathering and deciphering mountains of information began. The amount of information one is bombarded with after a cancer diagnosis feels overwhelming as well. You feel pressured, or at least I did, to suddenly become knowledgeable about biopsies, pathology reports, surgical procedure options, genetic testing and various treatment options often accompanied by even more data and prognostic predictions.

You are expected to think clearly and make life-changing decisions at a time when you are perhaps at your most vulnerable and are anything but clear headed.

Since I required genetic testing results to come in before final decisions about my treatment could be made, my diagnostic stage was intentionally slowed down for about three weeks. After the genetic test results came in, I had to wait another couple weeks before my surgery could be scheduled.

At first this seemed like a long time to just sit around and wait, but I came to realize this waiting period was a good thing. When feeling most overwhelmed, and I certainly was, that’s perhaps the best time to step back, take a breath and allow things to slow down. Waiting for test results forced me to do just that. It gave me time to mentally “catch up.” I needed time to process, evaluate and sort out new information as it came in.

Perhaps there is a little too much emphasis on fast-track, quick decision making during times of medical crises. While it is perfectly normal to want to “get on with it” or “cut the cancer out” as soon as possible, it is also in most cases, perfectly alright to take a little time to think things through. Generally speaking, there is a window of time during which your cancer will not change that much, if at all.

You don’t have to decide everything immediately, in fact, you probably shouldn’t.

It’s important to take time to process each stage of your experience. It is after all, your body and your cancer experience.

SOME THINGS TO CONSIDER AFTER A DIAGNOSIS 

  1.   Take time to carefully think through treatment decisions.  

  2.   Get second opinions if you choose and if your insurance allows for it.  

  3.  Always bring paper and pen to appointments so you can write stuff down.  

 4.  Have someone accompany you to appointments, if you choose to.   

 5.  Make a list of questions before each appointment and remember to take it along!  

 6.  Advocate for yourself by voicing your thoughts and opinions – YOU know your body best!

 7.  Always get things repeated or explained to your satisfaction.  

 8.  Be sure all your questions are answered, especially the embarrassing and hard to ask ones.  

 9.  Do your own research or have someone you trust do it for you. Don’t depend entirely on the “experts.”

10.  Follow your instincts when appropriate and stand up for yourself.  

11.  Ask for printed copies of reports discussed so you can look them over at home.

12.  Demand respectfully to be treated as a whole person. You are not just your breasts or your ovaries (or whatever body part is being scrutinized).

13.  Find out what all of your options are before deciding upon one.

14.  Before making a major decision, sleep on it.

If you do these things, you will probably make better decisions, feel more in control and have a better outcome. And that’s the beginning of healing.

How do you prepare for doctor appointments?

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After a Cancer Diagnosis, Then What?

18 thoughts to “After A Cancer Diagnosis, Then What?”

  1. Excellent list! I’d add one thing. We always planned something fun after appointments so there was something else to look forward to. Dinner out, drinks with friends, shopping at the Cheese Shop of Beverly Hills… we still do it when I go in for check-ups. Even when I had my lumpectomy, we stayed the night before at a nice hotel and had a fantastic dinner. After surgery we were back at the hotel having room service. Whatever gets one through–that’s what you do!

  2. I think Teresa showed great wisdom in her preparation and I wish Haydn and I had done something like that. The appointments and treatments were just that. Boring and mundane.
    Nancy, reading this Post allows me to see just how much my past has contributed to my present. My, late husband was diagnosed in 1978 hence I have had many years of ‘living with cancer’
    … either my own or my late husbands.
    At the time of my diagnosis I chose to drive myself to Qld to stay at a health resort. Two weeks there allowed me to detox and plan for my future.
    Many of your suggestions I undertook and feel your recommendations are essential reading for patients when receiving their diagnosis.
    You are so very wise my friend. I look forward to learning more…

    1. Chez, I can’t believe how long you have been living with cancer in your life. It really is so unfair. It makes you all the more remarkable. Thanks for your kind words.

  3. Nancy, lots of great information. Where were you in May of ’09. I could have used your help. I wish there was a way to let newly diagnosed women know about blogs like yours. Nothing beats hearing the honest stuff from women that have done it and come through.

    Great list.

  4. Great list! I think the most important for people to understand is that it’s OK to take time to figure things out. These are really big decisions that will have major impact on your life. It’s alright to sleep on it before making a choice.

  5. This is a really comprehensive and very well thought out list Nancy. I agree that number #1 is taking time to think about your options. When I first got diagnosed back in 2004, I was so completely overwhelmed AND ignorant that all I could think about was getting on with it and “killing the cancer”. In hindsight there were several key decisions made that I wished I’d taken more time on. Now I know better and am quite happy to go into a “holding pattern” whilst I consider the options.

    Also #6, advocate for your own body. Yes ! I seem to have a sixth sense when it comes to what is going on with me, and each time my cancer has reared it’s ugly head, I’ve been the one to find it first. (Mine is the kind that can be felt through the skin in certain areas). My doctors don’t ignore me when I say something doesn’t feel right, and I haven’t been wrong yet. In fact, this sense is what led me to getting diagnosed in the first place, after initially been turned away the first time by the first idiot doctor, with the advice that I should perhaps “consider breast massage and come back in 6-months if I still thought I felt something”. Had I listened to that I wouldn’t be here today, plain and simple.

    And #12, demand your body be respected. I’ll never forget going to see a surgeon about my oopherectomy, and whilst I was on the examining table he decided to take it upon himself to give me a uterine biopsy (without telling me first) and without any kind of pain relief. It was a total and utter violation and I have never forgotten his callousness in doing that. I also now refuse to disrobe until the Doctor is actually ready to examine me….I’m not sitting in the room half-naked and freezing cold whilst they take their sweet time in getting to me.

    Thanks for all your insight in compiling this list. I’m sure it will be of immense use to many.

    1. Anna, You are lucky to have that sixth sense to rely on and the fact that you have never been wrong is really pretty amazing! I don’t blame you for being so upset about the unplanned uterine biopsy, that was inexcusable! And good for you for being so assertive! We do have that right, sometimes it’s just hard to actually follow through and be our own best advocate. Thanks for reading and sharing your experiences.

  6. I’m glad you have that list to go by and share with us, it looks like a very good one. Thank you for sharing Nancy, you are truly an inspiration.

  7. Great list and happy your exchange surgery went well! I’d also suggest asking what ALL the options are–even ones the dr you’re visiting doesn’t do. This is especially important when trying to figure out reconstruction. Sometimes you’ll only hear about procedures your dr or medical facilities can do and not learn about other options that might be more appropriate for you. And I’m also an advocate of second, third and even fourth opinions if it helps you understand your options better and choose more confidently (because in my case it works that way).

    1. LSB, Thanks for reading and leaving a comment. I agree, knowing all options available is important and so is getting second, third or more opinions, if you can afford it or your insurance allows it. Hope your latest appt went well.

  8. If I don’t write my questions down, I will forget to ask, guaranteed. It may also help to jot down some notes immediately after your appointment while it is still fresh in your mind. Like right when you get to your car. You may also have taken notes during the appointment, but it’s hard to write a lot when you’re trying to pay attention.

    1. Lindsay, Good idea to write down the answers right away. I try to do that. This is when having someone else with you can be of great help too. They can write the answers down for you while you just listen. This is especially helpful when going to all those “cancer” appointments.

  9. I completely agree. There is a series of major decisions including what doctors you will see and how you will go about treatment. That list you provided is an excellent start to clarifying your personal objectives and finding a plan that works for you.

    1. Lauren, Hi again and thanks for commenting. (I will check out BCR after the holidays.) I think lists are almost a requirement for any doctor appointment these days.

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