Writing a book on receiving a diagnosis of cancer- what to do next- what would have helped YOU?

Hello;

My name is Dr. Kerry Forrestal.  I am a practicing physician in Maryland.  I am writing a book about what to do next and what you might expect starting out on your journey to beat cancer.  

I'm an ER doctor.  Over the years I have had to give people the news that they have a finding concerning for malignancy more times than I can count. I go the extra mile setting up appointments with oncologists, finding reasons to expedite care by getting people admitted, but beyond those first few hours, I can affect nothing for my patients other than setting them towards the resources they need to get started.

I have seen every reaction imaginable, but once that word "Cancer" drops I don't think anyone really hears anything else for days.  I'd like to create a resource for people who are newly diagnosed to help them. Something that reaches beyond the ER. Something that is a practical guide.  

So the question to this group is this:

What would have helped YOU?

Thanks for looking at this.  All the best!

Kerry

Comments

  • 7 Comments sorted by Votes Date Added
  • ncarlinncarlin Community Member

    One thing that I wish I would have known and had help with was the mental emotional side of having cancer and going through treatment. I was told over and over again what the physical side effects were and what to expect with all of that and who to call if I needed to. However I was never told anything about the dreaded chemo brain or any cognitive effects ever by anyone and there really aren't too many people to call about it. 

  • IctoosIctoos Community Member
    What were your effects and what did you find that best dealt with it?

    (Thank you for the response- I very much appreciate it)
  • GingerAmyGingerAmy Community Member
    First Kerry, thank you for showing interest in not only the cancer community but the young adult cancer community.

    My diagnosis came throught the ER. I was diagnosised with APL leukemia which as I'm sure you know can also mimic symtomaticly HIV positive patients. My ER doctor went above a beyond and I saw about three people before meeting my oncologist. The thing he lacked was good communication. He just told me that were checking for HIV and gave me a retal exam and walked out... Didn't even buy me a drink first.
    Then I met the internist followed by infectious disease and so on. In the end no one told me if I had HIV or not only that I had cancer. I had to finally ask my night nurse my lab results. I wish there was better communication between doctor and patient in my experience. Like for example: "these are the things were looking at, I'm calling this specialist to look at you" vs random doctor after doctor and not knowing what's going on.
  • GingerAmyGingerAmy Community Member
    Also maybe how to tell loved ones once hearing the diagnosis. Also weighting the options of the negative sides of treatment, chemo radiation. Etc. such as infertility, nausea, neruopathy, weight loss.
    How to contact your insurance and fining a social worker to help you within your hospital stay or one within your insurance company to help handle thousands of claims.
  • whiteasswitchwhiteasswitch Community Member
    edited June 2015 Vote Up0Vote Down
    Hey Kerry. 

    I think we should work hard towards changing public opinion when it comes to cancer. We are stuck with a terminology that reveals war ideology (talking about cancer in terms of war against, warrior, victim, survivor).

    I think we need to construct a more peaceful approach towards the disease. We must free ourselves from fear. 

    Sincerly,
    Michèle
  • very good idea. what would have helped me was time with the doctor and maybe a room to sit in and process the info.
  • PBCPBC Community Member
    I wish that my oncologist had been honest about the lifetime of long-term and late stage side effects.