Merry Christmas!

I've been trying to write  blog post for the past week but never seem to have the time or energy (or enthusiasm) to do it.  It's not that I don't want to, I just don't feel like getting on a computer at the end of the day after work.  I'm actually typing this today while at work!  Bad...

I wanted to wish everyone a very Merry Christmas!

I have a blood draw in early January to check my CgA and pancreastatin.  It's been six months. Depending on those results, we'll decide whether to do a scan or not.  I don't expect my levels to have changed, or if they have, not by much.  I have no symptoms to speak of.  My one concern is that we know these tumors don't usually spew out their hormones that show up in these tests until it's in your liver (usually, depending on the primary tumor site--lung & ovarian tumors are a few of the exceptions) but what if I have tumors outside my liver?  Do we just not worry about those?  I think not but that's the feeling I get (sometimes) from my oncologist.  He did say once that anything else that shows up is going to be so small so what would you do about it?  Cut it out!

These are just the thoughts that stumble go through my mind.  I meet with him in February.

This isn't turning out to be a very positive Christmas post...

I had a moment.  I wanted to add this fantastic post on CURE magazine by one of my favorite bloggers, Tori Tomalia.  A young mother of 3 with Stage IV lung cancer.

http://www.curetoday.com/community/tori-tomalia/2014/12/recipe-for-living-with-metastatic-cancer


It's the best "recipe" ever!  Thanks Tori!

Blessings all!

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! 

A time for reflection.

I said goodbye to my dear cousin Dave today.  He passed away last Monday.  54 yrs old.  He and his brother were like my brothers.  He was my sisters age and his brother Steve was my age.  We grew up together.  Our Fathers were brothers.  Our families spent so much time together when we were kids.  Camping, vacations, Holidays-- especially Thanksgiving.  One year it would be at our house and the next it was at theirs.  I loved their dad so much.  I always wished he was my dad (grass is always greener on the other side).

Dave had many demons throughout his life.  He was a skilled and gifted baseball and football player. My uncle, his dad, sadly took his own life due to the incredible amount of pain he was in from Rhumatoid Arthritis.  Dave was the one who found him and I think it really affected him not so good ways.  I'm not going to get into details because it's not my story to tell but he had many challenges throughout the rest of his life.  He did have four beautiful boys and another who was a son of his ex-wifes that he more or less raised.  I learned new things about Dave today.  How much he was loved and how kind and caring he was to everyone.  There was no judgement in Dave.

I had no idea how much pain he was in.  He had bone-on-bone hips.  Both.  He needed surgery years ago.  Everyone talked about how much he feared this surgery.  Something I don't understand but know that we all have our fears and it's not my place to judge others.  Of course, I feel bad that I didn't know how hard a time he was having.  I wish I 'd reached out to him.  He still lived in his mothers house.  I wasn't sure he was still there.  He was living without power or water.  The bank had taken the house back shortly after his mother died (four years ago), and Dave was still there.  I'm so glad he wasn't alone at the end.  He died from pain.  Literally.  Breaks my heart.

I wanted to write this post to talk about something one of the speakers spoke about.  He said that this life is just the beginning (hey, even if you are not religious, this is a good thing to believe).  This life is just a short blip.  We're here for just a moment.  We will be together again with our loved ones.  I sure hope this is true.

Rest in peace Dave Larsen.  You will be missed.  Until we meet again.

Onc Appointment

I had my "visit" with my oncologist yesterday.  My very own Dr. W.  (not the esteemed Dr. Woltering, a Carcinoid Specialist).  I do really like my oncologist.  He definitely is not an alarmist.  We had a good visit.  Since all my labs are normal (he was very pleased), we discussed the scan-or-not-to-scan.  His reasoning behind waiting is that when you have a lot of scans closer together, the radiologist will compare the new scan to the last scan and may not notice much difference but if you wait a year (or more) then any growth will be easily noted (I guess we just hope it's not a lot of growth).  I'm not really one to argue with a doctor so since I am feeling well, with minimal to no side-effects, then I am just going to wait another six months.  We will re-do labs and take it from there.  If I have any increase in symptoms, then I'm to call him.  Of course, I'll be in every 4 weeks for my butt dart (Sandostatin shot).  On that note, I had a nurse I have never seen before give me my shot an she was awesome!  She did it super, super slow (I know that can increase the chance of the needle clogging but it didn't) and I didn't feel it at all!  I have very little discomfort.  No leg pain.  Yeah!

Normal is...normal!

It took me 20 minutes to get logged into my blog.  Loooonnnnnnngggg story.  I almost gave up.  Sometimes I feel like "why bother".  Not that many people read my blog--not that I blame them.  I don't have much to say and not much is going on in my cancer-land.  Then I remember those few who have reached out to me and said "thank you--your blog has help me!"  Ah, that is music to my ears and why I started a blog in the first place!  I don't talk much about my day-to-day life because this isn't what this blog is about and is not the purpose of it.  I wanted an easy way to update family and friends on my medical condition and to help other suffering with this or any type of cancer.

So, getting back to my post title, Normal...is normal!  All my bio-markers (or tumor markers) came back NORMAL!  Awesome news right?  Well then why do I feel so unsettled?  I guess because deep down inside I really need that scan, that peek inside, to tell me everything is OK.  I am still on the fence about asking for a scan. I want one but I also think that everything is fine.  Maybe better than fine.  Maybe my little tumors decided to vacate the property (of my liver) and disa-fucking-peer!  That would be funtastic!

This is what I've decided (for the moment anyway):

1. I am not going to worry about it.  I will see what my oncologist says.  
2. I will voice my concerns (hey, nothing growing in the liver but what about elsewhere? Even though I know what his answer will be--which is "whatever is there is small so what are you going to do about it?)...
3. If I wait, how much longer do we wait?  6 months?  3?  4? 5?

That's about it.  No major issues really.  Oh, my heart palpitations have been going crazy the last week or so--until today.  Today they have not bothered me at all.  Weird.  I don't know what they are related too.  If they continue, I will mention it to my oncologist.  He said if they came back he would send me to a cardiologist.

I've found a new GP.  I have an appointment next week.  I just need my thyroid meds refilled and I forgot to have my OBGYN check it before my insurance changed.  I HATE going to a new doctor just for that but I saw another doctor in this practice years and years ago--he's no longer there (I was sad cause when I found his name on my insurance I was very happy).  I really liked this doc.  This was about ten years ago. I remember his nurse was in with me before the doctor came in and when she saw that both my parents had colon cancer, she told me I MUST go get a colonoscopy NOW.  I wonder if I had, would they have found my cancer then while it was still small and hadn't spread?  Could I have been CURED?  I will never know.... and it doesn't really matter now anyway.  

So, this new doc.  I am going to ask him for my complete thyroid panel, Hydroxy 25 Vit. D test and I will talk to him about my heart palps but my guess is once he see's that I have carcinoid, he won't want to deal with anything outside the normal stuff. Maybe my blood pressure too--it's a little higher than it was pre-cancer.  Used to be low and now I'm definitely in the pre-hypertension to hypertension range. I also need to go have my yearly mammogram.  I'm about a month past due.  I dont' have anyone to send the results to so I decided to wait.  I will get this new doc to order it for me.  I'm not sure with my new insurance where I can go.  I hope I can go to the same place but its doubtful--they don't play well with outside insurance.  I just don't know how they compare them if they don't have them, you know?  I'm not worried about it.  I'd skip it this year but I'm so lumpy I don't think I'd know if I had a "new" lump to be concerned about.  

My results of the Neurokinin A test was..... 20!  Remember, less than 50 is the desirable range!!!  My Pancreastatin was also in the normal range!  It was a little above normal last time so it's come down even more!  This is such good news all around!  

Thanks for reading!

  

A quick update

I haven't posted anything in a while because there isn't much to tell you about.  I did get some blood work done last week and so far, all is good.  CBC and blood chemistry.  Liver function tests included in the blood chemistry and those are all normal!  I haven't seen the CgA (tumor marker) results yet but it should be available this week sometime.  My Pancreastatin and (for the first time) Neurokinin A was sent to ISI in California so those take 3 weeks to come back.  I probably won't know those results until I meet with Dr. Whisenant on the 19th.  I might be able to get the results through LabCorp. but I'm very frustrated with their website right now.  I've tried to log-in all morning but it wont' take my password and when I reset it, it resets my Microsoft password. Weird.  Frustrating.  I give up!

I did get my appeal approved for the last CgA test I had done through my old insurance.  Talk about stupid. They paid $22 of the $236 charge, which is the "allowed" and "contracted" amount.  I owe nothing.  So, if no insurance, a simple blood test costs over $200!  Crazy.  At least with BCBS, I don't have to worry about pre-authorization for blood tests!  Duh.

I am still not sure about NOT having a 6 month scan.  Dr. Whisenant said he didn't think I needed one unless by tumor markers increased but that it was up to me.  I know I probably don't need one but I'd still like to know what is going on. I know it won't make any difference treatment-wise unless I had a lot of progression or new tumors (very unlikely) and we should see that in the tumor marker blood tests first.  I have read other patients stories about having normal blood tests and seeing tumor progression anyway so I still worry.  I guess I will talk to the doc about it when I see him.  It's my life after all (and my money too)!

If you are curious about Neurokinin A (NKA), it is more of a prognostic blood marker test.  I found this in a study paper:

Turner has shown in a retrospective study using a clinical
database comprising 117 midgut carcinoid patients that NKA
is an excellent prognostic indicator. In the patients who
presented with NKA > 50 ng/l (45 pmol/l) survival at 5 years
was 18%, whereas in the group who presented with NKA
levels lower than this threshold the survival at 5 years was
70% 

I think the prognosis is a bit better than listed above.  As much as 84% at 5 years for the <50 group.  I wanted this test run a long time ago but didn't push for it.  I didn't have to push at all. I just asked him (Dr.) to do it and he did.  It'll be interesting to see what my results are.  Although I don't put much stock in just numbers and statistics.  We are all so different.  Every patients disease seems to take a different clinical course.  Its one of the reasons it's so hard to treat.