How to Survive Stage IV Cancer, Part III

Baby, I know death pro’lly hasn’t happened yet

‘Cause I don’t remember living life before this

And darling, our disease is the same one as the trees

Unaware that they’ve been living in a forest

Vampire Weekend, “This Life”

Part III- Your evolving story: Read Your Reports, Keep Documentation, and Ask Questions.

Scans

Before your diagnosis, if being strapped to a board and rolled into a dark tube was not on your list of fun things to do, I have bad news for you.  Scans are a part of your new normal.  CT scans are the easiest.  You will graduate to MRIs and PET scans soon after.

What most people do after these scans is wait to go see their doctor, who will then quickly summarize for the patient what THEY think is important (usually anything that says cancer).

What you should do is immediately request a disk with your scan and written report along with a hard copy of your written report (in case the hospital software used is different than that of your home computer), which you can then pick up usually within a day or two after your scan is completed.  I never look at the scans by myself, because I am not qualified to read them; nor are you.  But you will be going or should be going to other hospitals and doctors for second opinions; and when you do, they will want the disk so that they can download it into their system and review them.

If you are not good at reading scary news and would prefer to get it from the doctor, there is definitely an argument for waiting until the doctor’s visit.  You can still do that.  Get a copy of your report anyway.  And then once you get the doctor’s read, open the written report.  You will be shocked at how much information is in this report that your doctor will not even mention.

For one thing, your doctor will not pay much attention to anything found in those scans that doesn’t specifically say “Cancer.”  And he or she will not tell you about it.  Not only that, but after that initial visit with you, that scan will become forgotten altogether as your doctor is now focused on the cancer-y parts.

Here is what you, as a smart, informed patient need to do:

• Read your entire report.
• Put together a binder.  Title it “scan history” and keep all of your written scan reports in those plastic sleeve thingy’s.
• Keep reports in chronological order.
• Look out for ANY discussion of lesions, hemangiomas, cysts, nodules, inflammation etc.

But why would you need to know about those?  Three reasons:

• Because your oncologist or surgeon probably won’t tell you about them.
• Because you will want to compare these from scan to scan.  Are they stable?  Have they changed size?  Your doctor will not.  You, the patient, have to be able to spot warning signs and bring them up.
• Because they often are not “just” lesions, cysts, and inflammation.

I have had to learn this last lesson in a very hard way.  And I am not the only one.  If I had a dollar for every story I read online and in community forums where something was ignored for a while because it was labeled in a scan report as “only” a cyst, I would probably have a hundred by now.  First, it was a liver tumor that my first surgeon decided was a hemangioma when he had me open, and boldly declared that to me despite scans he had available to him suggesting the contrary.  Second, it was spots all over the outside of my small intestines with areas of “high FDG uptake” on the scan that was labeled “probable inflammation,” that later turned out to be spread of peritoneal metastasis, and of course the “cyst” on my ovary that is now a very large mass and causing all of my latest problems.

If this binder seems like it’s a lot of work, I can assure you that it isn’t.  I’ve never rated my organizational skills as my strongest trait and I found this to be very easy to assemble.

 

I put my genomic testing report in the front, and bring these scans to any appointment where I will need to share with a new doctor or remind my current ones as to my history.  You can see how in this case, I’ve placed stickies to highlight which scans and areas reference my ovarian “cyst.”  I can tell you when it appeared, what size it was at the time of my last surgery, and when it started growing and suddenly became a “solid mass tumor.”  My oncologist could not do this if you asked him.  My surgeon definitely could not do this if you asked him.

This is where I learned a lesson, once again, in a very difficult way.  I did not make a special appointment with my surgeon just prior to surgery to discuss this cyst.  I was aware of it.  I thought about it.  I decided to instead step back and trust my doctor’s prior words that he would “remove anything suspicious that he saw while in there” and that he would actually review the scans in the system prior to my surgery.  He did neither.  He didn’t remove the cyst.  He didn’t remove the ovary.  I now have a 12 cm tumor in my pelvis cutting off the flow of fluids from my kidney, a tube in my back, and a bag of urine to carry around with me every day.

Never, ever, ever just trust a doctor to know something in your scans or in your history without specifically discussing it with them.  I won’t ever again.

Second Opinions

Always get second opinions.  It is usually good to get one local opinion (baseline) and at least one other second opinion, preferably from a major center.  The first “no” doesn’t have to be a final “no.”  And when you find yourself surrounded by doctors with an “oh well” attitude and no solutions beyond riding SOC chemo until death?  Find some new doctors.  I know the odds are against me, but I refuse to just settle in to fulfil my doctor’s pre-ordained prophecy.  Odds are odds, but I need a doctor that is at least TRYING as hard as he or she can to beat those odds.

New Biopsies/Genomic Testing and Liquid Biopsies

I’ve been trying since April to get a doctor to put in for Genomic Testing of the liver tumors removed during my April surgery.  The surgeons in Cleveland don’t want to do it.  The local oncologist is too far removed.  I now have to go visit the oncologist in Cleveland with the hopes that SHE can put in the order.

It’s a bit of a long shot, but new testing might reveal new genomic mutations that I can use to advise my treatment.  While I am there, I plan to also ask about a liquid biopsy.  I am still learning about these myself, but my understanding is that these can measure circulating tumor DNA and pull up much of the same information to help guide treatment decisions, and in some cases be used to monitor the effects of treatment.

Find Your Community

For me, it has been the private ColonTown Groups on Facebook.  It is a rare and unique community devoted to educating colon cancer patients and providing support for patient advocacy.  If you have cancer of any kind, you are never a single tree.  There is a forest somewhere out there filled with other people going through what you are are going through.  Go find it.

Know What You Don’t Know

And when you don’t know, ask questions.

Advocate, Advocate and Continue to Advocate. Even on the Small Things.

Bring up ALL of your symptoms to your doctors and make sure that they put them down into their notes.  It’s unlikely, but possible that your oncologist might be able to link a string of symptoms to something specific.  At the very least, ensure that your notification has been documented in the record.

Insist that orders get put in and that treatments get scheduled in a timely manner.  This is another thing that I’ve had to learn the hard way.  My current oncologist is a nice guy.  So is his nurse practitioner.  My oncologist went on vacation and then apparently started working on plans to leave the practice.  During this time I went 6 weeks with bi-weekly appointments with ONLY the nurse practitioner.  Well, I guess out of sight is out of mind because the doctor’s orders for Avastin (a drug that helps cut off blood flow to tumors) never got put in and were delayed one full month (two treatment sessions).

I still haven’t had it, since my next chemo has now been delayed by the antibiotics I’m taking to fight off the infection caused by the GIANT TUMOR on my ovary.  Would it be as big right now if I’d been treated with Avastin?  I guess that we’ll never know.

Here’s what I do know.  When I see my oncologist next Tuesday, I will be telling him that I do not want any more appointments with the nurse practitioner through the remainder of the summer that he is with the practice.  Because when I see the NP necessary doctor’s orders don’t get put in.  And that is unacceptable.  Not getting the doctor’s order in can literally and has literally made a difference in my quality and length of life. This isn’t lawn care services. Why do those in the health care industry casually act as if it is?  I’m convinced that whatever people are surrounded by, day in an day out, tends to make itself mundane.

These are lessons learned through what I’ve personally experienced.  It’s YOUR job to get their attention, and to ensure that your life is NOT mundane to them.  Nobody else is going to do it.  And that is the key to surviving, for as long as you are able to, with your Stage IV cancer diagnosis.