Scanxiety...

Google Scanxiety and you will actually get a definition: Anxiety suffered while waiting for the results of an important medical scan.

My definition: Anxiety suffered while waiting to get the scan!

I met with my oncologist yesterday and while everything seems fine, he did say that I should have a scan now rather than wait. I was a little surprised because at our last visit he said I could wait as long as my tumor markers remained "normal." This time he said he wouldn't want me to go longer than a year, which it has been as of Monday.

I am actually relieved to be getting a scan. Even though my markers and other blood work are good, I still want to "see" what is going on, if anything. Better to know that I am still stable than to wonder if I am. I don't trust tumor markers to show everything. However, even with the relief, there is anxiety. You just never know. He also told me I could get it within the next couple of weeks, like no hurry. Then he told the nurse to schedule it "now." NOW? Did he feel something when he palpated my abdomen and just didn't want to say anything? Then I remembered that we discussed getting the scan before he examined me. I'm sure he just told her to go ahead and schedule it now, not meaning urgent but to get it done since I may have had to wait a couple of weeks to get in. Well... that ain't the case. I go in Monday morning at, gulp, 7am! I'm not too thrilled about that but at least I'll be done early and can get to work. This is at a different hospital than I've had my other scans. This is at the hospital where I had my mammogram. Its a nice place and I'm sure it will be fine.

Keep your fingers crossed for good results!

Also, today is World Cancer Day.

Proposed FDA Regulations of 'Lab Developed Tests': Could Cause Harm to Patients

I received this information in another post from a fellow blogger: Cancer....an unexpected journey

Please, click on the link and sign the petition. Change.org

I don't want to plagiarize Luna's post but I want to say that most NET Cancer patients receive very specialized blood tests that are not "standardized" tests and could potentially not be covered by insurance if this proposed regulation goes into effect.  I receive one that it not considered a "standard" blood test that gets sent to a specialized lab in California (ISI) and there are several more that I could get as well (a few I have had once but have not repeated them yet)...

If you are so inclined, please contact your Congressional Representative and your Senators to let them know that these proposed regulatory measures should not be passed.  You can even email them!
To find your Senators:

http://www.senate.gov/general/contact_information/senators_cfm.cfm

Find your Representative:

http://www.house.gov/representatives/find/

Email President Obama/the White House:

http://www.whitehouse.gov/contact/submit-questions-and-comments

This can affect those with all types of cancer and rare diseases for which standardized testing may not be available.

Speaking of blood tests...

I had my 6 month  tests.  Everything is normal.  My CgA is the same but my pancreastatin has gone up.  It's now at the very top of normal.  (0-135 is the range and mine is 135).  That's a small increase but I'm sure nothing to worry about.

I meet with my oncologist tomorrow.  I have to find out if they really are on my employee's health plan now.  If so, I will switch.  It'll save me some money-I think.  Not much but a little.

Patient Advocates

I received a "tweet" that said I was listed on Listly's list of 300+ patient advocates.

http://list.ly/list/4V0-300-plus-patient-advocates-on-twitter#item_970146?

I'm not really familiar with this list but I'm going to check it out.  I'm #316!  You can follow me on Twitter through the link on that site.  I'll try and add a "twitter" button on my blog too.  I don't tweet much--I'm hardly online anymore after working hours.  I spend most of my day on a computer and the last thing I really want to do at night it spend more time on it!  Of course with smart phones and iPads it not easy to get away from our online "life".

So what is a patient advocate?

Patient advocacy is an area of lay specialization in health care concerned with advocacy for patients, survivors and carers. Typical advocacy activities are: patient rights, matters of privacy, confidentiality or informed consent, patient representation, awareness building, and support and education of patients, survivors and their carers. Patient advocates give a voice to patients, survivors and their carers on health-care related (public) fora, informing the public, the political and regulatory world, health-care providers (hospitals, insurers, pharmaceutical companies etc.), organisations of health-care professionals, the educational world and last but not least the medical and pharmaceutical research communities.

Patient advocacy in its current form finds its origins in the early days of cancer research and treatment, in the 1950s. It's part of the notion of Total Care, a term coined by Sidney Farber, a Harvard physician and cancer researcher, referring to the treatment of children suffering from leukemia where "the cancer clinician treated the family as a whole".[1] The concept of Total Care subordinated clinical investigation to patient welfare ... "clinical investigation in the field of cancer may be carried out only as part of the total care of the patient" (Farber et al.,1956).[2] Cancer patients are usually not in a position to take an assertive stance, and even less so in the 50s; clinicians recruited patients for tests and suspicion reigned at the NIH as researchers had to convince doctors and patients they weren't experimenting on people. In order to properly represent the patients in this medico-legal and ethical discussion patient advocacy came into being as a way to make the voice of the patient heard.[3] http://en.wikipedia.org/wiki/Patient_advocacy

I'm not sure I consider myself a "patient advocate".  I started my blog to keep my friends and family informed on my medical issues and treatment.  Of course, I think most personal cancer blogs start out that way.  I do want to share what I learn along the way and help others.  I'd like to do more but with working full-time, I just don't have the "time" or energy to keep up with everything.

To me, a Patient Advocate is someone who "stands for the patient". Helps them navigate this world we call "cancer".  Lends moral support, medical information and shares treatment experiences.

What is a Patient Advocate to you?

 

Fake Cancer Claims

Lately there have been 3 instances of people faking a cancer diagnosis (online support groups) either to get money or attention or both.  One was a local girl who bilked people out of thousands of dollars.  She even had her place of employment fooled.  They held a fund raiser for her and raised $16,000!  She also received money from non-profits but they won't say which.  You can read the story here:  Charges-filed-against-utah-woman-accused

Two other instances were on a "community" website.  I won't say which but it is one I go to occasionally and read up on how people are doing.  Two young women.  Diagnosed with two serious cancers. One was kidney and the other was endometrial and colon cancer.  One girl died.  There were over 100 posts on her blog.  IT WAS ALL FAKE!  The other blog just disappeared, however, I also followed her on Instagram.  Then that one disappeared and I received a "follow" request from her again and when I clicked on the link, it was from another person who said this girl was a total fake!  I found out that it was true.  I don't understand people mental frame of mind that can do this.  Don't they realize it hurts all of us who are REAL?  I know some are just plain criminals and want to milk money out of people however they can.  Sociopaths.  Others may be mentally ill and craving attention.

When I googled "fake cancer blogs" to find the article about the girl here in Utah, I was shocked to see how many reports came up of people faking their cancer diagnosis (or their child's) for financial gain (or in one case, breast implants).  Really?

I don't know how you can tell who is real and who is not.  I guess you just take your chances in the online media and communities.  Be careful who you donate too!  Donate to a charitable organization if you can.

Please know this.  I am real.  Yes, I have hair.  No, I have never had chemo but even if I had, not all chemo causes hair loss.  I have scars.  I have pathology reports.  Even though those can probably be fakes pretty easily.  My scars can't.  Just sayin....

Happy New Year!

Happy 2015!

I had one goal for 2014.  I'm not calling it a "resolution" because I had little control over it.  My goal? No major surgery!  Yup.  I made it.  Nothing major in 2014.  Only one minor procedure completely unrelated to cancer.  I'm not sure if I should set any goals for 2015.  I could keep with the same theme and probably be safe.

A few personal milestones in 2014.

• I was laid-off from my job of 3 years after a cancer diagnosis and two surgeries.  This was after my boss told me they would do whatever necessary to support me.  Right.  Lay me off me and take my insurance away unless you sign this "release" that states you won't sue us! Blackmail?  You bet!  Stress?  Nah.  No stress there.
• I got a job after 2 months.  It's a great job.  I like it a lot.  I actually work for an insurance company now.  Ironic?  I think so.  Oh, I also make more money than I did before (but my insurance costs me more and I had to switch around some doctors but not my oncologist).
• Remained stable according to my blood work (last scan was in February, 2014 a few days after I was laid-off my job).  I have not had a scan since. 
• Attended my first Dressage show with my horse Abbie.  We got a second place.  It was a really small show but I was proud of how well she handle the "show" atmosphere.  It was her second show ever.  

Up in 2015: What's next?

• Bloodwork scheduled for next week.  I'm not expecting any changes.  I still feel good with no carcinoid syndrome symptoms.  I do have a lot of headaches but this could be from the Sandostatin or it may be my sinus's.  I'm calling a doctor tomorrow.
• Schedule a scan before July 1st since that's when my insurance deductible kicks in again.  since I've met my deductible, I'd like to get it before I have to reach it again.  I have not (for the first time since diagnosis) met my maximum out-of-pocket.
• Switch insurance to my employee health plan.  My oncologists clinic is now part of our network.  I have no reason not to switch.  I'm very, very excited as this will save me some $$$.
• I'd really like to go to another couple of Dressage shows.  I'm not sure if I can afford it but I'm going to try.
• Go on a sister's trip.  Its been too long!  Even if we keep it domestic.  

Check out the TOP TEN Highlights of the Year for Carcinoid-Neuroendocrine Cancer
from The Carcinoid Foundation website:  https://carcinoid.wordpress.com/2014/12/18/10-highlights-of-the-year-2014-for-the-carcinoid-and-neuroendocrine-tumor-community/

1) Gallium 68 Clinical Studies
2) PRRT Clinical Trials
3) FDA Approves Lanreotide for Gastroenteropancreatic Neuroendocrine Tumors
4) Immunotherapy for NETs
5) Global NET Patient Survey (yes, I took part in this)
6) NET Conferences
7) NET Cancer Day
8) ONCLive Features Series on pancreatic Neuroendocrine Tumors
9) Warner Advocacy Award
10) NETs in the News and on Television (link to the BYU men's basketball coach here in Utah w/PNET.


Here's to a safe and healthy 2015!

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.