What TO and NOT TO say to a Cancer Patient

PLEASE do NOT say the following things to a cancer patient or someone who is very ill:

1.  “It will all be okay, I just know it.” – No, you don’t.  No one does.  Just because you may want that statement to be true, does not make it so.  This is NOT helpful.  It increases the patient’s sense of isolation, because it’s like telling him you don’t want him to talk about it.

2.  “Someday you will put this all behind you” (to a stage IV patient) – If you are talking to a stage 4 patient, this statement is 100% FALSE.  Stage 4 patients will NEVER be able to put their cancer behind them.  They will be fighting it for the rest of their lives.  It may go into remission for a while, or it may not – but they will NEVER be free of their cancer.

3.  “Don’t worry, things will get better.” (to a stage IV patient) – please see #2 & It increases the patient’s sense of isolation, because it’s like telling him you don’t want him to talk about it.

4.  “So when will you be all better?” (to a stage IV patient) – please see #2 & It increases the patient’s sense of isolation, because it’s like telling him you don’t want him to talk about it.

5.  “When will your cancer be gone?” (to a stage IV) – please see #2

6.  “But you don’t look sick.” – just because we don’t fit the stereotype of what you THINK we should look like doesn’t matter.  Many of us are extremely sick behind closed doors.  There are times we will be bed-ridden for days.  Many people who are terminally ill “look good” and you’d never know it just walking down the street and looking at them that there is anything wrong.  Not everyone will look like they are from a concentration camp. It increases the patient’s sense of isolation, because it’s like telling him you don’t want him to talk about it.

7.  “Lance Armstrong cured his stage IV cancer. You can too.” – This is a fast and sure way to piss off a cancer patient.  Good for Lance.  Whatever!  This is not HIS fight, this is MY fight.  Do NOT compare me to others!  This idea that people can triumph over cancer with will power and an upbeat attitude is just crazy. There are all sorts of factors that contribute to why some people recover and some don’t. The truth is, some people just get lucky.  Instead, try to reassure the cancer patient  that it takes a team of people: doctors, family, friends, support teams, etc to help the cancer patient through this time and that they are not alone.

8.  “But I thought you had chemo and surgery last time. How could it be back? This is why people shouldn’t do chemo.” – This just flat out tells us that you have no clue what you are talking about.  There are no guarantees with chemo, but it’s the best chance we have.  It’s part of our fight.  We use the tools we have available to us to fight.  There are no guarantees with anything.  We’re doing the best we can and have faith in our drs that they are offering us the best possible options.

9.  “Do you think it was a waste to do chemo last time?” – see #8

10.  “Live in the moment.” “Be strong.” “Fight hard.” “Keep your chin up.” “Don’t give up.” “Attitude is everything.” – DUH!  First, we know this more than ANYONE.  We’re facing death.  Secondly, these feel like “canned” sayings and offer nothing helpful or meaningful.  It increases the patient’s sense of isolation, because it’s like telling him you don’t want him to talk about it.

11.  “We just need a miracle for you.” – Well, I just need to win the lottery too!  Not helpful.  It increases the patient’s sense of isolation, because it’s like telling him you don’t want him to talk about it.

12.  “If anyone can beat this, you can.” – We don’t always feel strong.  And just because we’re strong and fight hard does not mean we can beat it.  We will try our best, but that is all we can do.  It increases the patient’s sense of isolation, because it’s like telling him you don’t want him to talk about it.

13.  “It could be worse, you know.” – REALLY?  We’re fighting for our lives.  How much worse could this get?  It’s already WAY more than enough.
14.  “Everything happens for a reason.” – just don’t…  and it’s not helpful at all.  It increases the patient’s sense of isolation, because it’s like telling him you don’t want him to talk about it.
15.  “It’s all part of a larger plan.” – again, just don’t… and it’s not helpful at all.  It increases the patient’s sense of isolation, because it’s like telling him you don’t want him to talk about it.

16.  “You’re only given what you can handle.” – According to who?  For those who are religious, this is NOT in the bible, although it’s a popular christian saying.  When we’ve been puking our guts out and have nothing left to give, this is not something we want to hear.

17.  “All you need to do is think positive.” – If you say this, we want to ring your neck and kick your ass! It increases the patient’s sense of isolation, because it’s like telling him you don’t want him to talk about it.

18.  “Half the battle is the mindset. Be determined to beat cancer and you will.” – see #17
19.  “Now that you’ve been through this you’re due for some good things to happen.” – this too is irritating to hear.  No one said life is fair or that good things happen to good people.
20.  “I’m sure it’s fine/I’m sure it’s nothing.” – *SMACK!*  If it were “fine” or “nothing” it wouldn’t be called cancer!  It increases the patient’s sense of isolation, because it’s like telling him you don’t want him to talk about it.

21. “Well, you’ve been needing a vacation for a while and now [during chemo] you get to lie around and read books all day. What could be better?” – Are you serious?  Again, this is an ass-kicking statement.  Feeling like you’ve been hit by a truck multiple times, puked your guts out until your inner linings are raw and bleeding is no one’s idea of a “vacation”!

22.  “Well, do they think [the chemo] is going to do any good?” – Of course they do or they wouldn’t put us through it!

23.  “People choose their sicknesses.” – What?  What kind of crazy juice are you drinking?!?!  No one would CHOOSE to have cancer!

24.  “Put your faith in God” – PLEASE do not assume that everyone believes in the christian god – or wants to.  This is not a time to try to convert people.  As an Atheist, this has been my BIGGEST pet-peeve .  I’m fine with my religious beliefs and my choice NOT to believe, so don’t try to convert me.  27% of Americans do not identify themselves as christians.

25.  “Have you accepted jesus christ as your savior?” – This is not about religion, this is about our fight with cancer.  Those who want have already done this.  Those who don’t want religion or are of a non-christian religion do NOT appreciate this in any way shape or form.  And PLEASE do NOT try to use this time to convert people!  27% of Americans do not identify themselves as christians.

26.  “You should try this diet I heard about.”  “Here’s an article about how to “cure” cancer” – These are more ass-kicking comments.  If it’s worth the paper it’s written on, our doctors will talk to us about it.  There are a lot of companies and people out there who are trying to sell their “vitamins” and all sorts of “snake oil cures”.  Do not begin to think that you know more than our doctors.  Some people MIGHT be into seeking into alternative medicines – ASK first.  If the cancer patient says no, then do not bring any of this stuff up.

27.  “Do you wear pink or want a pink ribbon to wear?”  – If we’re not a breast cancer patient, NO!  And honestly, those of us who have a type of cancer OTHER than breast cancer get really sick of seeing and hearing about pink and breast cancer.  There are other cancers out there!  We often feel we get lost in all of the pink and feel like our cancer isn’t taken as seriously or feel like we’re being told that our cancer doesn’t matter.

28. “I’ll pray for you.”  “It’s in God’s hands.”  “Put your faith in God.” – If you know for a fact that the cancer patient is christian, then go ahead.  If you don’t know FOR A FACT what religion the cancer patient is, do NOT offer these comments.  For and atheist, it’s the equivalent of telling us to put our faith in the Easter Bunny or unicorns.  27% of Americans do not identify themselves as christians.

29.  “What do they think caused your cancer?” – Many cancer patients take this to say that you are somehow implying that they did something wrong or somehow “caused” the cancer.  A cancer patient doesn’t need to feel like they are to blame in any way for “causing” their cancer (real or perceived).

30.  “Now, now, don’t get yourself all worked up” – Cancer is some scary crap!  Cancer patients are going to have all sorts of feeling and may even feel overwhelmed at times. Allow the cancer patient to go through whatever feelings they need to go through.  Reassure them that you and others are there for them through this and that they are not alone.

31.  “Congratulations!  You’re done with chemo (treatment)!” – When treatment is finished, it can feel like there’s nothing more for the cancer patient to do but wait, and naturally he/she may feel anxious and uncertain.

32.  “We can beat this.” – WE?  Yes, you want them to feel like they are not alone in this whole thing.  But they are well aware that “mind over matter”

What you CAN say/ask:

1.  “What kind of cancer do you have?” – Showing interest and wanting to learn is good.

2.  “What type of treatments have you tried or are going to try?” – see #1

3.  “Are you interested in alternative medicines or treatments?” – If the cancer patient says “no”, then leave it alone.  If the cancer patient says “yes”, then feel free to continue down that path.

4.  “Are you religious/Christian?” – I don’t mind people asking me this.  But when I say “No”, I want that to be the END of that topic.  If the cancer patient says “yes”, then feel free to go down that path.

5. ” What is your prognosis?” “What stage are you at?”- Some cancer patients are ok with this question, some aren’t.  I’m Ok with it because again, it shows that you are taking an interest and wanting to learn.  It can also help you to understand how serious it is and what the chances of remission are – or at least you can look it up.

6.  “What is you cancer ribbon color(s)?” – offering to help spread awareness about their cancer is appreciated.  Keep a look-out for their cancer ribbon and the colors .  Cancer patients like getting things they can wear to show they are strong and fighting the battle of their lives.

7.  “Is there anything I can do to help?” – There is ALWAYS things cancer patients need help with.  ONLY offer this if you REALLY want to help.   Offering to help come over and clean someone’s house is a HUGE deal and is greatly appreciated.  And if you can offer to do it on a regular basis – it is one of the MOST appreciated things you can do to help a cancer patient.  If you can offer to help take the cancer patient to appointments, scans, treatments…  Offer to do their grocery shopping or run errands.  And if you can, offer these things repeatedly.  If they have dogs, offer to take their dogs out for them – especially after a surgery or during treatment.  Offering any of these things to a cancer patient is incredibly helpful and very much appreciated.

8.  “Are there certain foods you can’t eat?” – Offering to make meals for the cancer patient and their (live-in) family is always greatly appreciated.

9.  “Can I get your email or phone number?  I’d like to check on you (and offer help) to see how things are going?” – Offering to be there on a regular basis and offering a support system is going to be a very important piece of the cancer patients life.  Early on, they may not realize it.

10.  “Do you have a donations page or a CaringBridge account where I can try to help with donations or get updates on how you are doing?” – A support system is very important to a cancer patient.  Again, they may not realize how much they will need this in the beginning.  And if the cancer patient doesn’t have these things set up yet, it may put the idea in their head to get these things started.

11.  “How many people know?  Who all are you telling?” – This is a very important one.  The cancer patient may just be telling you , thinking you’ll keep it confidential.  Other s may be letting everyone know.  Sometimes shouting it from the rooftops is very therapeutic – it’s one thing breast cancer patients seem to do very well.

12.  “How are your mood and spirits holding up through this?” – This opens the door for a meaningful conversation.  As an outside person, do not let any of your own fears or hang-up about cancer keep you from helping those who might need you.  You’re not going to “catch” cancer by talking about it.

13.  “Did/do you have any symptoms?”  “What were the symptoms that caused you to go in to the doctor?” – This helps you better understand their cancer and what they are going through.

14.  “What kinds of things are you doing to help yourself to relax or find support?” – these 2 things are needed in the life and world of a cancer patient.

15.  How are you feeling now that treatment is over?” – Whatever they are feeling is OK.  Just be there for them.

The above is a collection of various thoughts, opinions, and articles.  I hope all of you find this information useful!

Nov. 10th – 1st Annual Carcinoid/NET Cancer Awareness Walk

DATE

Start: Sunday, November 10, 2013 @ 1:00 PM (CST)

ADDRESS

DMACC Lake, DMACC Ankeny Campus
2006 S. Ankeny Blvd.
Ankeny , IA 50023

REGISTRATION CLOSING DATE

Sunday, November 10, 2013 @ 1:59 AM (CST)

Register by OCT. 15 and be guaranteed a t-shirt!

 

Welcome to the 1st Annual Carcinoid/NET Cancer Awareness Walk/Run! The Iowa Carcinoid Cancer Connection and The Carcinoid Cancer Awareness Network have joined together to create/intensify awareness of NeuroEndocrine Tumors and Carcinoid Cancer among the medical community and the general public. Our purpose includes providing education, awareness and support for Iowa NET and Carcinoid Cancer patients and their families.  ALL proceeds will go towards intensifying awareness and education to people who suffer from IBS and Crohn’s (common misdiagnosis of Carcinoid/NET cancers) and the medical community.

 

Note:

Those who register AFTER Oct. 15th, will not be guaranteed a t-shirt.

SPONSORS

We would like to thank our sponsors for their support! Ankeny Animal and Avian Clinic, DMACC

All proceeds will go toward the awareness and education of Carcinoid and NET Cancers. Sign in at NOON and get your t-shirt.The average temperature for November 10th is 50 degrees – so come join us!!!*To be guaranteed a t-shirt, please register NO LATER than OCT. 15th!

 

Additional Date Information

12:00 PM sign-in

 

To Register:

https://www.active.com/register/index.cfm?FORCE_A2=yes&E4P=9cc992a9-9a97-44bd-a9d4-3595559fcdb2&E4TS=1380251480&E4H=70959cb63f3ba77aebb31c89fbd5f996&E4E=snrcz00000000&LTCLICKID=09_67859143_73d696b7-c998-40a9-9a2a-ac91f3fd7357&EVENT_ID=2111416&INT=29-110-1&E4RT=Safetynet&E4C=active&CHECKSSO=0&E4Q=e3096822-eb14-481a-9481-85ca62734c80&LTCMP=194590

 

To Donate:

http://www.active.com/donate/carcinoidcancerwalk

Update on my health

So after over a year of trying to figure out what I have in addition to Carcinoid Cancer, the consensus is Sarcoidosis.  It’s an autoimmune disease.  The medical community suspects that there are links between Carcinoid /NET Cancers and autoimmune diseases.  I currently know of one other person who has Lupus (another autoimmune disease) and Carcinoid Cancer.  I’m now listed as the 5th person in literary history to have Carcinoid Cancer and Sarcoidosis at the same time.

And if THAT isn’t rare enough, I have a very unusual presentation and advanced progressive case of Sarcoidosis.  The treatment for it is going to be Methotrexate and Remicade.  Remicade can cause my carcinoid cancer to increase in speed, cause me to develop Lymphoma, and know my immune system out.  So, yay to that…  (I’m being sarcastic)  If the disease doesn’t kill me, the treatment might.

I’m so sick of ER’s and hospitals….

Anyway, we do what we have to do, right?  And we keep moving forward and hoping for the best.

If you are a Carcinoid Cancer, NET cancer, or Sarcoidosis patient – contact me.  I’d love to talk to you and hear your story.  And if you are a Carcinoid/NET patient who lives in Iowa, join us out on FaceBook at “Iowa Carcinoid Cancer Connection”.

Email any time!

Jen Holm

iowacarcinoid@yahoo.com

Do you have IBS or Crohn’s?

If the answer is YES, then you NEED to know the symptoms of Carcinoid Syndrome.  The majority of Carcinoid cancer patients are misdiagnosed for 5 to 6 YEARS with
IBS or Crohn’s before getting the correct diagnosis.  Unfortunately, during that time, our cancer spreads.  Most of us are at stage 4 by the time the doctors figure out that they had misdiagnosed us.

 

Carcinoid Syndrome Symptoms:

* Skin flushing/feeling suddenly hot – you may look sun burnt on your face, neck, and/or chest

* Heart palpatations – feeling your heart beating

* Heart rate increases/blood pressure decreases

* Feeling nauseous and dizzy all of the sudden

* Feeling like something is “wrong”

* Followed soon-after by diarrhea (either mushy or watery) – lots and lots of it

Many things can cause Carcinoid Syndrome to flair up, such as:  stress, seeds, nuts, dairy, many types of foods.

I knew for a long time that something wasn’t right with my body, but the drs couldn’t find anything.  I got tired of going to drs and going in for tests and finding nothing.  In the fall of 2009, I started getting episodes of stomach pain.  I figured that it was probably an ulcer or gall stones.  So, I  blew it off for several months.  By the end of December 2009, I had the worst episode of pain yet.  It felt like I had been hit in the stomach with a baseball bat.  I scheduled a dr appointment with my gastrointestinal (GI) doctor for early January.  After a few tests and some sample medications that didn’t work, my CT scan came back.  The CT scan showed a “slight thickening of the terminal ileum wall”.  That’s the area where the small intestine turns into the large intestine.  My GI dr said that she thought she could r each that area during a colonoscopy.  It was further than they usually go, but she felt she could reach it and biopsy the area.  The biopsy came back as Carcinoid Cancer.  I had been misdiagnosed for 6 years with IBS.  I had never heard of carcinoid cancer or carcinoid syndrome.

It only takes a couple of easy tests.  A blood test to check your Chromagranin (CgA) levels and a 24 hr urine collection test to test your serotonin levels.  Some places are equipped to test your blood serotonin levels.  It’s EASY to get tested.  It’s better to find it and treat it before it gets out of hand.

 

 

Turning Nonprofit!

This is HUGE for our group!

When I’m having good days, we’ve had a lot of things going on. I’m working on turning our little state of Iowa support group into a 501c3 Nonprofit Cancer Charity! This will allow us to raise money for Support, Education, and Awareness (SEA). So many people are mis-diagnosed for an average of 5 to 6 years. By the time they are correctly diagnosed, most patients are stage 4 and not curable. It’s so important to get the information out to the Medical Professionals as well as the general public. There are 13,000 newly diagnosed patients every year, with thousands more continuing to be misdiagnosed.

We will be becoming more active as a group.  Just recently, we had a member meeting/lunch with Dr. O’Dorisio.  We had a Q&A with him for almost 3 hours!

Because it is so important for both Medical Professionals and the general public (possible patients) to be aware and educated about NET and Carcinoid Cancers, we will be making a stronger effort on November 10th, “Worldwide NET Awareness Day” to get the word out about  these types of cancer.

I hope things are going well for all of you! You’re always welcome to visit with us. And if you are in Iowa, you are welcome to join our interactive Facebook group!

My best,

Jennifer Holm

Iowa Carcinoid Cancer Connection

iowacarcinoid@yahoo.com

Bone Marrow Biopsy

I just had a bone marrow biopsy in IA City yesterday.  One of my lymph node biopsies in my neck showed a fungal infection – histoplasmosis.  We don’t know how wide-spread it is, therefore we did the bone marrow biopsy to see if it’s infection in my bones or if it’s cancer.  The bone marrow biopsy should tell us how to treat it.  It wasn’t as bad as I thought it would be. The lidocaine burned going in to numb things up. And the aspiration (pulling the bone marrow out) only hurt for about 5 seconds. I must have had some sort of reaction as my tongue and lips got numb and I got really tired and had a hard time staying awake. But that passed after about 45 min. Otherwise, it really wasn’t that bad.  We should get some result tomorrow afternoon and others they had to send out and will take a little longer to come back.  We can only treat one thing at a time.  So chemo has been put on hold until we get rid of the infection. Minimum 6 wks of treatment.  Then we’ll reassess the situation.

Presenting My Carcinoid Case to a Group of Doctors

I’ll be speaking to a group of drs (during Internal Medicine Grand Rounds) over their lunch hour 2 days after x-mas over in Iowa City!  And I’ll be answering questions about Carcinoid Cancer.  Yay!

Help me raise money for my cancer treatment

http://www.gofundme.com/y486g

Update on my health

A recent PET scan showed that the cancer has spread faster and further than we had anticipated. I have multiple tumors in my: liver, spleen, lungs, lymph nodes (throughout my upper body), spine (L3 vertebrae), and left pelvic bone. The drs were surprised. I was not, as I have had pain in these areas. We’re waiting to hear back from Iowa City/University of Iowa Hospitals.

What You Need To Know About NET/Carcinoid Cancer

• Carcinoid tumors are NOT benign – patients ARE DYING because it’s not being taken seriously.
• Surgery does NOT mean “CURE” (regardless of where the primary is found!)!
• Symptoms show up prior to the tumors showing up on the scans, while still at the cellular level.
• Tumors spread once they are between 1-2 cm in size and spread like a buckshot.
• 80% of patients with carcinoid syndrome will develop pancreatic insufficiency – leading to type 2 diabetes.
• Many carcinoid cancer patients develop thyroid problems.
• Patients need to be followed up to 20 yrs for recurrences of carcinoid.
• Irritable Bowel Syndrome (IBS) and Crohn’s are the two most common misdiagnoses for patients with midgut Carcinoid.
• Over 11,000 new patients are diagnosed each year.
• As many as 125,000 Carcinoid/NET patients are living in the US today.
• The number of diagnoses is increasing by more than 5% annually.
• Over 90% of all Carcinoid/ NET patients are incorrectly diagnosed and treated for the wrong disease.
• Average time from initial onset of symptoms to proper diagnosis exceeds five years.
• Most prevalent Carcinoid / NET symptoms are diarrhea, constipation, abdominal pain, wheezing, flushing, heart palpitations, and blood pressure fluctuations. This feels like living with the stomach flu 24/7.
• Carcinoid/NET cancer can often lead to thyroid and pancreatic problems.
• Carcinoid cancer can cause heart valve damage and electrical problems with the heart.
• There are strong correlations between autoimmune disorders and Carcinoid/NET.
• The patient’s entire endocrine system can be affected by Carcinoid/NET.
• Many Carcinoid Cancer patients have or get: vitamin D and B12 deficiencies, diabetes, thyroid problems, Multiple Myeloma, hormone imbalances, electrolyte imbalances, migraines, insomnia
•  This is a very controversial opinion between doctors and patients…  Whether or not a cancer patient should have children.  This is something that should be discussed between you and your doctor.