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Seven Tips for the Newly Diagnosed

After you hear those words, you have cancer, it can seem like the floodgates have opened up because in a very real sense they have. Suddenly, you are forced to deal with countless medical appointments, personnel and procedures. You are poked, prodded, examined, questioned, analyzed and subjected to all kinds of potentially embarrassing, yes even humiliating situations. And not just once, but over and over.

On top of all that, you must absorb tons of often-times confusing information, try to formulate at least semi-intelligent sounding questions about all of it and then make life-changing (and often body-altering as well) decisions you never wanted or intended to make.

It’s overwhelming and then some.

During all of this chaos and confusion, you are also somehow supposed to morph into some sort of super-hero-like self-advocate, which is hard enough during relatively calm medical times, but after a cancer diagnosis, it can sometimes feel next to impossible.

Everything happens so fast, but at the same time, you might feel as if you’re moving in slow motion – at least that’s how it was for me.

But then somehow you get it together (more or less anyway) and begin to navigate the maze that is your cancer.

What choice do we have, right?

I do not have any ground-breaking, never-before-heard-of  tips, and there is no particular way to manage the chaos that follows a cancer diagnosis anyway. There is only your way. Still, sometimes a few suggestions from others who’ve been there can come in pretty darn handy.

So here are a few tips for the newly diagnosed which might be helpful:

1.  Self-advocate with as much gusto as you can muster because let’s face it, this is your life.

But remember, self-advocating is a learning process too; you will get better at it over time. Trust me. You will.

2.  Don’t allow yourself to be rushed into decisions before you are ready to make them.

And it’s perfectly fine to have things explained over and over until you understand the information or are satisfied with the answers. I always maintain it’s a good idea to ‘sleep on it’ before you make a big decision.

3.  Take someone with you to appointments IF you want to.

Also, take along notepads because you will be writing stuff down and, of course, write your questions out beforehand. And remember to take your questions with you.

Writing down answers matters, too, ‘cuz when you get home, you might not remember them. At least I didn’t and often still don’t.

Some doctors don’t mind if you record meetings, but some do, so it’s best to ask first.

4.  Get second opinions if you want to and if your insurance allows for it.

5.  Remember there are no dumb questions, plenty of embarrassing ones, yes, but no dumb ones.

6.  Get organized with medical files or have someone else do it for you.

Ask for printed copies of reports, put them in labeled folders when you get home and consider signing up on an online patient portal if your facility offers this. This allows you access to at least many of your medical reports 24/7 and you can email your doctor too. I love this access.

7.  Seek out support. It’s there.

I wish someone had told me this one at the start of my personal cancer shit storm. Family support is vital, but it’s so helpful to talk with others who understand whether it’s online, at an in-person support group or with a trusted friend who’s been there. Spreading the support around even just a little helps not only you, but also “lightens the load” a bit for your friends and family members.

Following a cancer diagnosis, things will sometimes feel undo-able. At times, you may feel overwhelmed, angry, frustrated, scared, cornered, lost, helpless, and who knows how else.

But somehow we muddle through.

And you will too.

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What piece of advice do you wish someone had given you early on?

Where do you find the best support?

Cancer or no cancer, how have your self-advocating skills evolved, or have they?

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Now What? Seven Tips for the Newly Diagnosed

18 thoughts to “Seven Tips for the Newly Diagnosed”

  1. Hi Nancy,

    Really good tips. I wish I had these when I was diagnosed. I did seek out support through the American Cancer Society and Gilda’s Club, and they made a huge difference for me. I did belong to a cancer support group, but in the long run, that wasn’t very helpful to me.

    The great thing is that now social media is here, and there are so many ways to gain support in the online community. I still benefit from the support systems in the social media realm.

    1. Beth, I didn’t seek out support right away and no one directed me to any kind of support group that I recall anyway. As you know, online support has turned out to be the most helpful and the most valuable to me for so many reasons. One of which is you! Thank you for being part of my support group, Beth. And thank you for reading and sharing.

  2. These are very helpful tips, Nancy.

    I had a very bad experience with the GYN who requested my biopsy. She pressured me to be treated at her hospital and was really nasty to my mother when I decided to go to MSKCC. Getting a second opinion is so important to me. I am glad I did it.

    The best support I received came from other patients. I am forever grateful for the ACS (online forum). They held my hand through the entire cancer experience. This support is like no other.

    I wish I was told many things that often oncologists leave out or ignore, maybe because their main concern is to keep us alive. My oncologist was the type to handle things as they came so not to worry me. But I am the type who likes to know everything so I can prepare myself. I wish I was told how some of my relationships would change and how I was going to be changed forever. I believed I would be back to who I was before cancer but that was not the case. One thing I realized though, is that the best way to handle this cancer mess is to take one day at a time, so not knowing everything was probably for the best. It would have been too overwhelming otherwise.

    1. Rebecca, My oncologists have been like that too for the most part – handle stuff as it happens. Maybe they do think they spare us some worry by not telling us too much all at once. I like to know as much as possible too, in fact, I get resentful if stuff is left out on purpose. I agree about that one day at a time thing. Otherwise it can all seem way too over-whelming. Thank you for sharing.

  3. Great tips Nancy. I wish someone had told me “it will be confusing and no, you are not losing your mind!” The relentless tests, the conflicting information, the need to check certain test results by undertaking yet more tests, the ambiguity of it all – that was really something. And at a time when I was feeling overloaded, vulnerable, nose-to-nose with death… I just wish someone had told me to expect endless ambiguity and no immediate answers (or solutions).

    1. Tracy, Yes, a little reassurance is always helpful. There is so much to absorb, learn, process and formulate into a plan and sometimes it can all seem so undoable. And yet, somehow we do what needs to be done. Thank you for reading and sharing.

  4. I wish I had been told That it was going to change A lot of things. I truly believed I would have the surgery, a time of recovery, and be the same. I was not prepared for Breasts that felt like dense pockets of tissue and that they would have the sensation of wearing a bra all the time, no more relief of removing the bra after a long day :(. I also wish I had been given some direction about challenges, what to call in about, and which Dr.was best to take care of what kind of problems that could show up.

    1. Areena, I think many of us think things will pretty much get back to normal… Survivorship issues are under-discussed and under-addressed IMO too.

  5. Still have not found much support so in turn it is a very lonely time family and friends don’t realize what is going on only people who have been there breast survivor 24 years lung ca 2015 surgery left lobe removed no treatment 2017 recurrent lung cancer in chest inoperable chemo radiation together now immune therapy every 2 weeks stopped treatment once because of balance mri brain and 3 other body parts pet yesterday find out results Tuesday very over welmiing any one else going through something like this

    1. Nancy, Very overwhelming indeed. Have you tried an in-person support group? Online support is there. I hope there’s someone or some place you can find the support you need and deserve. Thank you for sharing.

  6. Something I think we all face early on is dealing with thoughtless remarks made by well-meaning people. Everyone has to craft their own way of coping with them and responding, or not responding. I only know that, whenever I hear platitudes and – to be judgmental, sorry – just plain stupid comments, I am far less polite about what I have to say than when I was first diagnosed over 20 years ago.

  7. As usual Nancy, you’re right on the money! These tips are great for the newly diagnosed who are so overwhelmed. I love reading your words…always sincere, to the point & comforting. Thanks for all you put out there for us.

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