Rare Adult & Pediatric Cancer Web Blog

I spent several hours doing updated research on adenoid cystic carcinoma - breast and head & neck, cancers of the appendix, carcinoid, phyllodes, pseudomyxoma peritonei (pmp), and several other rare cancers.  On some, there was not much new since my last update.  But, others had some very interesting journal articles. 

If you new (or relatively new) to the rare or pediatric cancer world, you are probably wondering where I got all these great articles. So, I will share what I learned early in my own cancer journey. 

When I was dx’d in 1998, I had a very rough time finding information.  The internet was not as easy to navigate and the rare cancer info on it was sorely lacking.  I knew I needed to do my own research because my oncologist honestly told me that.  I asked around until I found out that tucked away in my local hospital, in a coat closet (it sure felt like one), under a stairway (literally) was a treasure trove of information.  It was called the medical library and it was there to service the doctors on staff.  And in that library was a virtual life raft for me - Laura, the medical librarian!

This lady was drop dead gorgeous, so the last thing I expected was someone so helpful and intelligent (me and my stupid assumptions!).  She not only helped me find articles, she printed them for me, even spent her free time researching for me.  She was very computer literate and medically literate and she taught me a great deal about finding treasure troves of info on the WWW.  And I shut my mouth and listened and learned.

That was several years back and I have migrated around the country.  I am sure Laura has moved on (at least I hope someone offered her something better than a stairwell!).  The most important lesson she taught me was that most hospitals, teaching hospitals, or universities with medical education programs, have a medical library. 

Today, I spent my research hours at the University of Arizona Health Sciences library. It is a 45 minute drive from my house, but well worth the trip and gas money.  I always find a great deal of precious information there.  I downloaded 4MB of journal articles today that I will read in my spare time (WHAT spare time??). 

In any event, if you want information on your cancer, search the stairwells of your local hospital.  Find your medical or university library and start using their resources.  For me, I just want to give two thumbs up to the librarians of the world.  One of you not only helped me save my own life, but gave me the knowledge to help others save theirs!

Since 1998 I have been helping rare cancer patients find information for their cancers.  It has always astounded me that the larger percentage of these people do not have a copy of their original pathology, hematology, or surgical report. 

This report is invaluable when it comes to doing research for rare tumors or cancers.  It gives you the specific diagnosis, size of the original tumor, whether it was completely excised with clean margins, cell type, and any important characteristics (sometimes called ‘markers’).

Doing research without this information is like driving with a blindfold on.  You may be lucky and find things, but you may just crash and burn from spending hours doing research that does not apply to your cancer.  So, my best advice for any person who is newly diagnosed is - Get a copy of this report. 

Keep it in that notebook that I discussed earlier.  And, if you have multiple surgeries to remove your tumor(s), get all subsequent reports.  I have a close friend whose cancer migrated in cell structure three times.  Changes can occur.  They are rare, but isn’t that what brought us all here?

When someone is diagnosed with cancer, they are profoundly and immediately changed.  ‘Overwhelming’ is a gross understatement.  Then there is all the new ’stuff’ you have to do - doctors, labs, surgeries, treatments.  I am going to add one more, very important, thing to your ‘to do’ list.  Start a Cancer Notebook.

 I learned, very early in my cancer journey, that doctors don’t necessarily communicate well.  You will most likely be traveling to a number of doctors or medical facilities.  And asked a LOT of questions, reapeatedly.  You will find out that doctors do not necessarily share precious information about you with each other.  This is where your notebook just may save your life when you are in the fight of your life - battling cancer.

Start the notebook with a complete medical history - all surgeries, diseases, conditions, medications, etc..  Anything your doctor asks you for in the way of information should be added to the notebook. 

Also, include all the doctors you are seeing - general practitioner, cardioloigst, oncologist, etc..  Any, and all doctors should be included, along with their addresses, phone number, and specialty.  List all the laboratories where you commonly have lab tests, such as blood tests, xrays, mammograms, etc.. And any facilities that might have imaging or laboratory tests pertinent to your cancer diagnosis.

Now, you need to start filling your notebook with reports.  When you are first diagnosed, your doctor will discuss your diagnosis.  He/she get much of that information from your pathology, hematology, or surgical biopsy report.  You need a copy of that report to put in your notebook.  This is a MUST!   If you had multiple biopsies or surgeries, make sure you get copies of ALL pathology, hematology, or surgical reports.  Every time a piece of cancer is removed from your body, you need the report

You should get copies of all reports from imagings, labs, ekg’s, pre-surgery tests, etc..  And it would be very beneficial if you could get your ‘consult’ reports.  Normally, when one doctor sends you to another for an ‘opinion’, they draft up a consult report to summarize their opinion about your case.  Get copies of these and put them in your notebook. 

Now you are ready and armed to do battle!  When you go to see a specialist, you will have everything they need to review your case, wisely.  If you have just a few reports, you may want to make copies and give them to the new specialist.  They may not know any of this information.  You would be surpised how many doctors do a consult without being given the entire history of the patient.  They depend on you, most often, to verbally tell them everything.  Well, being a cancer patient, your mind might not be clear enough to remember it all yourself! 

Oddly enough, doctors treat cancer patients as if they should be clinical, calm, and detached in their view of their own cancer.  I don’t know about you, but I was anything but calm and detached.  I was nuts!  My notebook somehow saved me from looking nuts, though.  I ‘had it all together’ - at least in the notebook!

Take Care,  Sharon Lane   www.rare-cancer.org

I am going to do a little ranting today.  As anyone who knows me well, I have spend the majority of my days, since 1998, working on websites for rare cancer patients and giving them support and information.  I work extremely long days doing this and have not had a weekend off in years.

 Throughout those years, I have had several people ‘volunteer’ to help me.  A few are sincere about it, but they seem to not follow through with any requests.  Most are not sincere.  I have even bartered with some people to try and get some help (building websites in return for their help), and they never helped.  In all these years, and all these offers, I currently have one volunteer who is actively helping.  So, you’ll have to forgive me if I am coming from a ‘biased’

 This week took the cake.  I was contacted by a lady who said she really wanted to help.  She wanted to put a smile on children’s faces and that she would be willing to do anything.  I spent several hours sending her information and some direction on what I needed her to do.  I told her she could do as much, or as little, as she wanted; at her own pace.  She wrote me back that she really didn’t want to work, she just wanted to put a smile on a cancer kid’s face!  Maybe this was my first run-in with a predator looking for kids, who knows.  But, it sure ticked me off.

I run the website, and all the systems, alone.  I live on a VERY meager monthly stipend.  I would love to be working and making some money (I am pretty good at website programming and design); but each time I try to do this, my cancer work starts taking up my time.

I have someone who wants me to build a website, for pay.  I started doing the work this week and put my cancer duties to the side.  I had to spend every waking hour for the last three days catching up on that cancer work!  It is incredible the effort it takes.  But, I have to find some outside work, or I won’t be able to pay to house the site pretty soon. 

So, I am in a dilemna.  A real pickle!  How do I find volunteers who actually want to work?  How do I find the time to do other work to earn an income?  How do I turn my back on a kid with cancer, and tell them I am trying to earn some money and can’t help them?  I can’t do that.  Total selfishness is just not a quality I have!  But, I can’t keep up with this pace either.  YEOOOOW!

Take Care,  Sharon  www.rare-cancer.org