NET Cancer Day

NET Cancer Day was November 10th.  I'm a bit late in posting anything about it and feel somewhat remiss...

We had some great news coverage on Nov. 10th!  All due to the hard work of a fellow carcinoid cancer patient (or 3).

A year or so ago, we learned that Coach Dave Rose of the BYU (Brigham Young University) men's basketball team was diagnosed with pancreatic neuroendocrine cancer.  One of our support group members knows him and said he would talk to him and see if he could help us get our Governor to declare Nov. 10th as NET Cancer Day in Utah.

Through his efforts and the efforts of another member of our support group, Governor Gary Herbert signed the declaration for Nov. 10th to be recognized as NET Cancer Day in Utah.  We were very excited as last year, he didn't sign the declaration.  Sometimes it takes someone "famous" to call attention to a "cause".  Below is the link to the interview with Coach Rose.  They also interviewed Merlynn, our group leader.  Merlynn and his wife Laurie, know the reporter who came and did the interview.  It's a start on the road to getting more recognition and awareness out there.

Coach Dave Rose has P-NET

On a personal note, I haven't blogged much because there just isn't much to say... this blog was always about my "cancer" journey and not my personal day-to-day life, although I know that they are definitely intertwined in every way.

I don't have any blood work scheduled until January. I meet with my oncologist in February and depending on my tumor markers, I won't have a scan.  I am not sure how I feel about this.  It'll be one year in Feb. since I've had a CT scan.  My oncologist feels that it is better to wait if my markers remain the same (normal).  It'll be better to compare scans done further apart to see if there is progression.  Meaning, it'll be easier to see if there is any progression or not.  I get where he's coming from but I'd also like the peace of mind that a scan showing stable disease brings.  I also want to know if things are progressing in any way.  I know he is mainly concerned with my liver tumors.  I also want to make sure nothing else "pops" up outside the liver.  My lymphnode involvement was pretty heavy according to my original pathology report.  This means the cancer could spread just about anywhere.

A fellow NET cancer patient, who I only know through Facebook, has just been diagnosed with 11 tumors in her brain.  This can and does happen.  I hear many patients say that their oncologist tell them that this type of cancer doesn't spread to the brain.  This is just not true.  I asked her if it was found on a routine scan or if she was having symptoms.  She said she just didn't feel like "herself" and since it was time for her routine scans, she asked for a more extensive scan and this was how the tumors were found.  She is getting radiation to the 3 bigger tumors and the rest are quite small so they will watch those.  I hope the radiation works and kills those tumors.

I've been feeling pretty good.  Fatigue comes and goes.  Some discomfort around my scar from my liver surgery and some cramping/pain in my abdomen.  I also started having hot flashes--I think that's what they are.  It could be flushing but I don't turn red.  I don't really sweat much -- just a little around my hair line and hot flashes are usually "wet" whereas carcinoid flushing is "dry".  I figured if they stopped after my Sandostatin shot then it may be flushing but they didn't.  I had my shot last week and they've continued at the same frequency so I'm pretty sure that they are hot flashes and not carcinoid flushing.  Both suck.

Mammo, Mammo, Mammogram!

I was a couple of month overdue for my yearly mammogram.  Guys, you may want to stop here. 

So... I've had four "lumpectomies" over the years.  The first one when I was 19!  It was a lipoma (fatty tumor).  Looked like chicken fat and felt like gristle (yes, my surgeon asked me if I wanted to see it and touch it--so of course I did)!  I don't even remember how old I was for number 2.  Maybe my early 20's.  I felt a lump.  Went to my doctor/surgeon.  He said "let's take it out".  I had not had a mammogram ever--yet.  This one wasn't even a tumor at all.  Just a knot of fibrous tissue.  I have extremely fibrous tissue.  Third one... I don't even remember what it was.  Then at 40, I started the FUN yearly mammogram program.  Always, always, they say my breasts are extremely dense and could prevent the detection of a lesion, etc., etc.  So then I had a lump that came on suddenly and was hot and red and hurt like hell.  I was married then.  It just happened that my yearly gyn appointment was in a few days.  My nurse practitioner thought it was either an infection or a cyst.  She sent me in for my first ever diagnostic mammogram.  What fun they are!  They just squish them more and take more pictures.  I then had an ultrasound (since my tissue is so dense--duh).  They confirmed a cyst.  It was already getting smaller and feeling better so when the radiologist asked me if I wanted him to drain it, I was like, um, that's ok!

I think the next year I had another diagnostic mammogram due to my history and it was ok.  Next couple years I just had regular screening mammo's.  I did skip about 3 years after my divorce.  Opps.  Bad me.  On my next mammogram, the tech saw a very tiny suspicious spot and they called me back for the diagnostic mammo.  I wish they would just skip them and go straight to the ultrasound!  Argh.  This "tiny" spot was not normal and they wanted me to have a "wire-assisted biopsy".  Won't ever do that again!  Basically, they do a really intense mammo--numb your boob and insert a HUGE needle that sticks a wire into the spot that needs to be biopsied.  It's too small to see with the naked eye!  I had this done and the pathology report said it was just some abnormal cells--not even the type that can become cancer.  Relief.  However, since that biopsy in 2009, I've had incredible pain in that breast a week or so before my period.  It hurts to even just brush something against my boob!  I've mentioned it to all my doctors and they've never known why. 

A couple weeks ago I had the usual pain.  Even a bit worse then normal.  I was poking around and that's when I thought I felt a lump but I wasn't sure.  I'm pretty lumpy all the time but especially before my period.  I was "exploring" a bit more and found another lump (almost on my nipple) that I had no doubt about.  Fast forward--called and scheduled a mammogram and when I told them I had a lump, they said I'd need a diagnostic.  yeah!  I knew that would happen.  Again, why not just go straight to the ultrasound?  Well, it's because insurance won't pay!  Mammogram showed nothing.  No lumps.  Nada, Zero.  Just extremely dense fibrous tissue (it looks like white spiderwebs on the ultrasound).  The ultrasound tech said she could feel the one lump (the one I wasn't even sure was a lump) but nothing showed on the screen.  She could feel it when the ultrasound wand moved over it.  Weird.  I showed her where the other little pea-sized lump was and she couldn't see anything there either.  The radiologist came in and ran the wand over me and he could also feel the other bigger lump but nada showed.  He said it was most likely just another mass of tissue but that I should watch it.  He did finally find the other smaller, harder lump.  He pushed the wand a lot harder than the tech did.  He said it was a cyst.  Again, watch it. 

Now aren't you glad you checked in today?  No really, I'm not 100% convinced that neither of these are anything to worry about.  I am keeping a close watch feel on them! 

My point here is just that I don't understand why I have to go through the mammogram process when every single one I have say's the same thing.  Too fibrous to see anything! 

Of course, I am also relieved that they didn't find anything suspicious. 

Why the whole history?  I just wanted you to know where I was coming from and why I didn't freak out when I felt something.  My mom also had several lumpectomies over the years.  I'm so much like her it's scary!