What To Expect In That First Month After Diagnosis
Last updated: June 2022
“You have cancer.” Those three words change your life forever.
Nothing is ever the same from then on, but that doesn’t mean it has to be all bad, especially if you know what to expect during that horrible and overwhelming time just before and right after diagnosis.
It’s something that all of us on this site go through, and hopefully, having a day-by-day guide will make it just a little it easier for anyone who is facing the same veritable firing squad as so many of us have already – and come out the other side, changed but surviving.
Sometimes the diagnosis isn't a surprise
Even before a blood cancer diagnosis, many of us have an inkling, at the very least, that something serious is wrong. Cancer is discovered most times when people show up to the ER or doctor’s visit complaining about a symptom, usually some sort of bleeding or even abnormal blood tests.
As humans we have intuition, and just like that chopped meat that you kept in the fridge a few days too long, when things don’t pass the smell test, there’s a part of us that knows.
Ignoring our intuition
Unfortunately, if you are like me, you probably ignored it until it's 3am on a Tuesday night when your guts are falling out of your rear end before you admit, “uhhh, yeah, this may not be indigestion….”
Don’t worry, many of us do it – probably because we know that life is about to change. Before my non-Hodgkin lymphoma diagnosis I actually dreamed about cancer and cancer related things for two weeks straight.
Like I said – our bodies just know when something is wrong. If you’ve experienced anything like this don’t worry – it’s normal and you’re not alone.
Anxiety and waiting
So, now you are waiting in the ER or the doctor’s office for the results of your testing. It’s totally normal at this point to be more anxious than that dream where you are in class with no homework. And naked. And also, it’s midterms. You get it.
When you are sitting in that office, awaiting the worst, with the Sword of Damocles hanging over your head, it is completely within reason to freak out. Heck, you wouldn’t be human if you were just sitting there, cool as a cucumber playing Candy Crush on your phone.
The things going through your head are the same things that most of us probably thought at that stressful time, a moment pregnant with dread. It all leads up to that point when the doctor comes in, sits down, and says, “well, you have cancer.”
Now things start to happen
At this point things will start to happen fast. More than likely the doc will want to get started right away, so either you’ll be admitted to the hospital, or you will be in outpatient testing for a while – probably the next few days.
Those tests will include a bone marrow biopsy, if they haven’t done one already, and a PET scan. A bone marrow biopsy is a wonderful thing.
First off, ask if you can be sedated during the test – I wasn’t offered that option but in talking with many in our community it seems that it is something that you can ask for, and you should. A bone marrow biopsy involves using a needle to pluck out a piece of bone from your pelvis and guess what? It isn’t painful at all! Ha ha, of course that’s total baloney – it’s awful and just as painful as it sounds, even though they’ll tell you it isn’t. It’s something to expect and be ready for.
Also in the first few days, you’ll likely have to do a PET scan. This is where they shove you into a metal donut for 20-45 minutes at time after they inject you with radioactive isotopes that travel only to where cancer cells are active.
You’ll know it’s radioactive because when they come in to inject it, they pull it out of a lead case and are wearing hazmat suits like the feds from E.T. Both of these tests are necessary, normal, and nothing to be too anxious about although that’s easier said than done.
After the first few days where there is a flurry of activity like it’s opening day at Yankee Stadium and someone forgot to buy baseballs, things will calm down slightly.
At that point your physician or oncologist should have an idea of exactly what cancer you have and what treatment plan will be best – chemo, radiation, surgery, or some combination of the three.
If it’s chemo, they’ll schedule an infusion as soon as possible and you’ll get the poison pumped into you as fast as they can squirt it. The side effects won’t show up for 2-3 days but be prepared for mouth sores (I’d ask for anti-fungal mouthwash or pills ahead of time).
Radiation treatment isn’t as much of an imposition when it’s happening, but afterwards you can expect skin burns, nausea, and, of course, hair loss as with most cancer treatments.
Finally, if it’s surgery then, well, it’s surgery – not much I can tell you about surgery that you haven’t already heard.
Either way you should be starting this treatment within a week or two from diagnosis, and it’s completely normal to feel overwhelmed and have a million questions. Write them down in your phone and ask them.
Finally, about a month after diagnosis you should be in the full swing of treatment side effects with the low white cell count and the nausea, sores, and fatigue. That’s par for the course and there are many articles on this site on how to deal with the side effects, so I won’t dwell on it other than to say don’t worry – you’re not the first to experience it and you won’t be the last.
So that’s the first month of cancer, and I hope it helps to put some of your concerns at ease. The feelings you are feeling are the same ones we all do, and they’ll come and go until you are in remission or otherwise.
What blood cancer were you diagnosed with?