Words of wisdom for the newly diagnosed

A dear friend of mine asked me to compile a list of things to know when facing a cancer diagnosis. A friend of hers is newly diagnosed with breast cancer, and so my friend turned to me for advice for her friend. While I am by no means an expert, I have walked a mile or two in the pink shoes, so here’s my list. Readers, please chime in with your advice.

1. Don’t panic. I know, easier said than done. Hearing the words “You have cancer” is scary, no doubt about it. No matter where you are in life, it’s the one thing no one wants to experience, and yet more and more people are finding their lives turned upside-down by cancer. The American Cancer Society estimates that more than 200,000 women in the United States will face a breast cancer diagnosis each year. Looking at your diagnosis, treatment, and surgery options may seem overwhelming, so break it down into manageable pieces.

2. Keep a notebook. Being a cancer patient is a full-time job, and like many other jobs, it involves a lot of paperwork. Get a 3-ring binder and some divider tabs and set up an organized system to track your pathology reports, insurance statements, notes from doctors’ appointments, and research. Ask for copies of everything from your doctors. Like it or not, you need to become your own advocate.

3. Figure out how much information you’re comfortable with and go no farther. I’m an info junkie and have a deep-seated need to know as much as I can about my cancer. I ask lots of questions at my doctor’s appointments and want to look at the ins and outs of all the issues. I watched videos on youtube of the different surgeries I would have (bilateral mastectomy with tissue expanders then DIEP reconstruction and several revisions to the reconstruction.) While a deluge of info works for me, others may prefer to work on a “need to know” basis and to take sips instead of gulps when it comes to the facts & figures of cancer. Decide what level you want and don’t venture beyond that unless you’re comfortable doing so. Also figure out how much of your story you want to share. I didn’t set out to write a blog, but found it to be the best way to update my peeps on my status. Once the cancer morphed from the star to more of a supporting role in my life, I realized that blogging about it is incredibly therapeutic for me. That’s a personal choice, however, so don’t feel that you need to broadcast your status.

4. Educate yourself so you can be the decision maker, then follow your gut. This is your show, for better or worse, and you must be the one to run it. While it’s perfectly acceptable to solicit opinions and to ask your docs what they would do if in your shoes, ultimately the decisions that must be made are yours. And there will be a lot of decisions to make. I remember wishing there was a manual for this part of the cancer “journey” that would tell me what to do. Alas, no such manual exists, so it was my job to weigh the facts when deciding on surgery and treatment. The decisions (lumpectomy vs mastectomy, chemo or no chemo, Tamoxifen for 5 years to reduce recurrence odds or roll the dice?) are big, and the stakes are high. Do your homework then trust your instincts.

5. You gotta love your doctors. Or at the very least, you gotta respect them. Even if your personalities aren’t aligned, you want to feel confident that he/she is the best at what they do. If you don’t love him/her or feel unsure about his/her abilities, keep looking. Ask for recommendations from people and doctors you trust, but then decide for yourself if it’s a good fit. One of the oncologists I visited came very highly recommended; everyone and their brother had been to this guy and respected him to the moon and back. I wasn’t crazy about him, though, and didn’t relish the idea of a long-term relationship with him. And his office was depressing — morose decor and outdated, muted colors that dragged me down every time I was there. This made me realize that I needed to look at the whole picture — does the office make me more nauseated than the proposed chemo? are the front office staff members courteous? does the waiting area suggest chaos or tranquility? what is the average time spent waiting to see the doctor? how responsive is the nursing staff to your phone calls, questions, or concerns? what system is in place in the event that my doc is unavailable? Remember that they work for you, not the other way around, and if you’re not getting the care you feel you deserve, you have every right to speak up.

6. Avail yourself of another set of ears. As much as I hated being dependent on others (see number 8 below), it was crucial to take someone with me to my doctors’ appointments. In the beginning, especially, there’s a ton of information being bandied about, and most of it is very emotionally-charged, technical, or hard to process (or maybe all 3); having someone else there to listen and take notes was a must for me. Even now, 2 1/2 years later, I still take my trusted sherpa with me to my checkups and often have to text her after the visit to confirm what the doc said about a particular issue. My brain gets very full very fast with all the cancer business, so I need my sherpa to lend me some of her brainpower, and my memory took a beating from the stress & strain of all the cancer fallout. Having someone else along to recall all the little details makes a big difference.

7. Talk openly with your kids, if you have them. They’re more observant–and resilient–than you think, and conversations about cancer will dominate your life at first, so trying to hide it from them is a bad idea. Explain it to them according to their age and ability to understand. My kids were 8 and 10 when I was diagnosed, and I told them that my doctor found a cancer in my breast that needed to be removed with surgery, but that once the surgery was over, the cancer would be gone and I would be around for a long, long time to harass and embarrass them. I said that I would need to lay down and rest a lot, but that it was temporary and once I healed, I would be ok. My 8-year-old accepted that as fact, while my 10-year-old asked repeatedly if I was sure I wasn’t going to die. He needed more reassurance, so I took him to my breast surgeon, who explained the same thing I’d explained, but hearing it from her, in a more clinical setting, reassured him.

8. Let people help. Man oh man this one was so hard for me. I don’t like depending on others, and I don’t like accepting help. However, I learned real fast that I needed to let go and get comfortable with delegating and giving orders. It was hard, hard, hard for me. But I realized that many people wanted to help, and that because they felt powerless in many ways, allowing them to bring a meal or pick up my kids allowed them to participate and made them feel good for helping. For those who are the ones wanting to help, a little piece of advice: don’t ask what you can do to help, and don’t say, “Let me know if you need anything.” I was so bamboozled by all things cancer that I didn’t know what I needed some days. Volunteer something specific, i.e., I’ll come walk your dog, or I’ll drive you to your doctor’s appointment, or I’m coming over to vacuum your house and fold your laundry.

9. Nix the pity party. Another great piece of advice from my amazing breast surgeon. She allowed that there would be days in which I didn’t want to get out of bed, but she put a time-limit on it. She gave me 3 days of wallowing, and said if I felt like I needed more, to come see her and we’d talk. It’s tempting to wonder, and even ask, Why me? But the answer inevitably will be Who knows? so ya might as well get up and get on with it.

10. Limit your exposure to anyone in your life who is negative or not supportive. Trust me, people will come out of the woodwork when they hear through the grapevine that you “won” the cancer lottery. You will likely hear all manner of advice and anecdotes, most of which are neither helpful nor amusing. Also trust me that you do not need to hear about how your next-door neighbor’s brother’s boss’s wife had the same kind of cancer you’ve been diagnosed with, and she was sick as a dog and bald as an old man all through chemo and then died a year later. I repeat: you do not need to hear this kind of talk. Distance yourself from anyone who brings that kind of junk into your yard. I had to tell a few people flat-out that their diarrhea of the mouth was not helping me and that if they couldn’t think of something constructive to say or something banal upon which to comment, they could just keep on walking. You will learn who your real friends are, you will likely make some new friends, and you may even find yourself outgrowing some friendships along the way. All of this is ok. Don’t be surprised if you have friends who can’t be bothered to listen to you vent or who are afraid that your bad luck will bleed over onto them. Don’t be surprised if you have a friend who backs out of a commitment to help you in your cancer “journey.” The sad truth is some people are fair-weather friends, and cancer can be a blustery wind that uproots the seeds of friendship. The good news is that cancer can also bring people into your life just when you need them most. Two of my dearest friends are those I was merely acquainted with pre-cancer, but whose kind hearts and fine character led them to me in my time of need, and by my side they have remained.

23 Comments on “Words of wisdom for the newly diagnosed”

  1. leia in la la land says:

    Thanks for this. I’m 20 days out from diagnosis and I can’t begin to tell you how helpful this is. I, too, am an info-junkie – or was, until October 9. Now, for the first time in years, I’m taking sips instead of gulps (as you so eloquently worded it). I’m afraid I’ll start choking and never stop if I take too big of a gulp right now.

    • Trevor Hicks says:

      Leia – the most frustrating part of trying to help Nancy with her decision making was the difficulty in finding useful actual data. I had two simple questions, based on the specific characteristics of her cancer, what is the likelihood of recurrence? What is the impact on her odds of each treatment option? I didn’t think these were weird or difficult questions, but most cancer websites and oncologists just refuse to provide the answers. How else are we supposed to weigh the very substantial physical and other costs of the treatment against their benefit if nobody will discuss the magnitude of the benefit?

      Eventually I found some good sources online. The best is Cancer Math. I hope this is useful to you.

  2. David Benbow says:

    I especially like #10. That’s good advice in general.

  3. Those are wonderful tips. We can all use the refresher, even if we’ve already been down the road. xox

  4. billgncs says:

    Good advice. I found livestrong sent a good journal/workbook to help get you started on an organized way to begin the fight. It was free except for $7.50 for shipping/handling.

    Once you get structure, or an idea of what it might be like — it is easier to craft your own plan.

  5. Lauren says:

    Good job chicka! How about read blogs…I mean really, everyone out here has so much advice to share from so many perspectives…it sure helped me!

  6. Amy H. says:

    I love this post on many levels! It’s one of the best ones yet!! Lots of great advice!

  7. mmr says:

    Oh, Girl, what cosmic karma timing. I took one of my best friends to a needle biopsy last week. She has been there for me throughout my ordeal and tonight she gave me the bad news that indeed she has BC too. Seeing what I’ve been through has no doubt scared her silly. So I am soooooo grateful to see this post. I’ll print it out and give it to her tomorrow. And now I’m going to go cry.

  8. Editor says:

    Reblogged this on Journeying Beyond Breast Cancer and commented:
    Newly diagnosed with cancer? Take some advice from someone who has walked in your shoes.

  9. Meg says:

    Looks like my iPad will be going to the bc support group meeting tonight. These points are well stated and kindly written. Thanks!

  10. Melissa B says:

    Great article. So much was what I did. I started keeping a journal almost 3 years out, and wish I had done it from day one.
    As for the negativity – I selected those who would know. I knew that some would give me horror stories,etc. I chose not to let them now, some even until now. It is hard enough dealing with the cancer situation without someone b
    ringing you down.

  11. Very good list. I like the 3 day limit on wallowing . . . I might suggest people start a blog online (if they are comfortable with that). It’s great for keeping ppl updated without mass emails, and it’s great for putting out your needs so people know how to help, and for the occasional rant or gratitude moment as well. Thanks for this thoughtful list! ~Catherine

  12. I LOVE your no-nonsense approach to things Nancy!

  13. Renn says:

    Great list!! I found #10 especially pertinent. I gotta be honest: Post-diagnosis, I wasn’t prepared for the changes that occurred in many of my closest relationships.

    Pre-cancer, I would have told you that I had a forest full of mighty oaks surrounding me, protecting me from the storms of life. Post-cancer, I know this isn’t true. Turns out there were many plywood facades masquerading as trees in my forest.

    Cancer sheds a particularly harsh light on friendships and reveals them for what they really are. The hard part is coming to terms with that truth. Then you can go about mending your forest with folks who are real.

    • Trevor Hicks says:

      Sadly I realize now how useless I was for a good friend who died from bone cancer 20 years ago. I never understood why his brother was so cool to me afterwards, but now I do. I can’t change my past, but hopefully I can avoid repeating my mistakes.

  14. I read this on Marie’s blog and just had to check it out again. I wish I had this guide when I was first diagnosed. Great post!

  15. twingham says:

    Thank you so much for sharing this. It is a wonderful resource and I have just referred a new Canadian friend here and will save this link for other women seeking support. I wish people were not getting diagnosed, but until we find a cure, we need places for people to turn. So THANK YOU!

  16. These are exceedingly useful tips. I wish I had such information when I was going through diagnosis.

  17. Paul says:

    If I may … 11. Trust your Instinct. Self-explanatory.

  18. Christie Hickman says:

    I’m glad I found your list. My sister is finishing an 11 month journey with breast cancer and I was diagnosed 10 days ago. I am still in shock but appreciated #1, Don’t Panic.

    • Oh Christie, I’m so sorry, for you and your sister. I’d say welcome to the pink ribbon club, but there’s nothing welcoming about this club, and I wish it didn’t exist. Glad you found my blog, and I hope it provides some good information (don’t read about the post-mastectomy infection; it’s a freak occurrence). Stay strong and know that there’s a whole community of women online who know exactly how you feel.

  19. […] I also wish I had been able to read this sensible and reassuring advice from The Pink Underbelly, but I was yet to encounter the wonderful support to be found online – Words Of Wisdom For The Newly Diagnosed. […]

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