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« It's the Most Wonderful Time of the Year! | Main | Ugh »

December 10, 2008

Comments

Alena

I recently came across your blog and have been reading along. I thought I would leave my first comment. I don't know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.

Alena

http://www.smallbusinessavenues.com

A Super Girl

Wooo hooo!!! In my book, anything benign is good news, even if you have to go to all that trouble of having it removed. And that can be trouble, but still, better than the alternative!!

Gretchen

Oh, I'm so glad to hear that it wasn't cancer. Good luck with everything else!

MaryB

I am SO VERY happy for your family!!! That is the BEST BEST Christmas present EVER! I got my "its not cancer" news shortly before Christmas two years ago and, really, I had NOTHING else on my wish list. Nothing could have compared.

Hope the hubby gets home soon. Cold weather requires lots of hot chocolate and snuggling!

Mandy

Whew! Soooooooo relieved that it isn't cancer!

Alaska. Not as far as some other remote locations. ;)

Miriam

I think we should all take a moment and do the "it's not cancer happy dance" :)

Becky

I'm so so SO glad to hear that all went well. We lost my dad to cancer & you're right - the chemo and radiation are the worst part. What a Christmas miracle!
Becky

Shannon

Thank goodness for that! What a crazy situation. I recently went from being told that I had a type of brain tumor to "oh, sorry, you just have tilted discs in your eyes. Our mistake." What a relief for you and your whole family this Christmas.

RisibleGirl

Wow, my heart dropped right into my stomach when I read what you'd heard. I can't imagine hearing such news! I'm glad that it wasn't as bad as they thought, but still must be unnerving. Let your dad know that I'll be thinking about him.

xo

shani

WOO HOO!!!!!!!!!!!!!!!!!!!!

Jay

Wow. What shitty/crazy/wonderful news. Must be nice to be thrown under a busload of emotions like that. All the same, I suppose in the end it's good news, and a great reminder of how we sometimes take things for granted, such as our loved ones and limited edition holiday Oreos.

Kate

OMG, I'm so glad it wasn't cancer! What a wonderful gift!

wordnerd

Geez, girl, what a time you've had. So very happy to hear that it wasn't cancer, though. Take care, stay warm, and know that good thoughts are coming your way from way down here in the Dirty Souf.

Becky

I'm glad to hear that your dad doesn't have cancer and it looks like he'll be okay -- kind of frustrating that the doctors couldn't tell the difference at that point or should've at least let your parents know that they still weren't sure what it was. Unfortunately, I know exactly what you went through during those three days and I'm glad that Colby was still in town to comfort you through it (and of course, the ice cream!).

Anne

Oh Angela,

What a traumatic weekend for you, I'm so sorry you had to go through that. I never quite understand why my parents never call us right away when something happens but now I guess I understand a little better. They don't want to unnecessarily worry us until they know more for sure. :( Hang in there and I'm happy to hear that it's not cancer.
xo
anne

Jass

Oh I'm so glad it's not cancer! Phew What a scary thing to go through. Hugs Angela!!

And here is wishing Friday gets here soon!

TasterSpoon

Thanks for the full report. I was all, "!!!" and "???" when I saw your Twitter.

A friend who was fearing a brain tumor just found out she only has M.S. AWESOME!

katelin

glad to hear your dad is okay the waiting game and misidentifications when it comes to health is never a fun situation.

Jessica

OMG. Honey I'm so sorry. I would have had the same reaction to that news. I'm glad Colby was so supportive and there for you. I'm glad things are looking better for him.

Dianna Boomershine

Dear Angela,
I'm not sure how to start this! I guess the best way is to just say it straight out.

I am a carcinoid survivor whose cancer started in my small intestine and had spread to my liver, appendix and other abdominal organs before it was diagnosed.

I was appalled that someone told your father that carcinoid is not cancer. It most certainly is cancer and if his carcinoid in the lung is localized, i.e. has not spread to other organs or the lymph nodes, removing it surgically could be curative. Unfortunately, since carcinoid can be either aggressive or indolent, many doctors view it as something more benign than it may be...with bad results for patients. I would encourage you and your parents go to the official site for the Carcinoid Foundation (www.carcinoid.org) which was formed by doctors and patients to better inform medical personnel and patients and caregivers of the best current information, treatment options and testing protocols. I would also encourage you to see the carcinoid expert/specialist closest to your area. They are few and far between in the US but worth their weight in gold. There is a list of recommended physicians on the Carcinoid Foundation's site. They know the proper tests to run, and what treatments are best. They will even consult with your father's current doctors by phone or there is an email listserv for doctors only that allows them to consult with 15 or more doctors all over the world who have made the study and treatment of carcinoid cancer their life's work. One important issue is the protocol for a carcinoid patient before any surgical procedure. As we are susceptible to "carcinoid crisis" (even if non symptomatic in other ways), it is important to have an octreotide drip before, during and after any procedure. Failure to do this can allow a crisis...fluctuating blood pressure, bronchial spasms, heart irregularities...all of which can be fatal and are soooo preventable! Again, check with the experts before your father has any surgeries or invasive tests! This even applies to procedures like brochoscopy, colonoscopy or endoscopy. We carcinoid patients are susceptible for "crisis" for up to 12 hours after a procedure, so being prepared up front is highly recommended.

I know that a diagnosis of carcinoid cancer is devastating, but more devastating would be to take the wrong approach to the treatment and management of the disease. It is not a "wait and see" disease, but it normally does give you time to get informed opinions about the care and management of the disease. Get proactive...you and your family will have to be the best advocates for your father with medical personnel and insurance companies. Very few doctors know how to handle this rare cancer effectively. The Carcinoid Foundation site (www.carcinoid.org) also lists the carcinoid support groups nationwide! You can get very good information and helpful support from other patients, survivors and caregivers in those support groups! More importantly, they can help you find "carcinoid friendly" doctors in your area.

I pray that they have caught this in your father before it had a chance to spread, but nonetheless a consult with a carcinoid specialist is a must! If you would like additional information or have other questions, you can contact me at [email protected]. I wish you and your family a blessed holiday season.

Sincerely, Dianna

Old Warrior

Thank you for taking the time to write such an informative and thorough comment, Dianna. We are certainly gathering all of the information we can and have a very good oncologist who is doing all of the things you suggested. I am scheduled for the special PET scan using the isotope for carcinoids to check for other occurences that may not be as indolent/non-malignant as the one in my lung. That one is 8 millimeters and has not grown for 9 months since they first detected that something was blocking an airway and causing me to get pneumonia twice.

My managing oncologist has already talked to four other specialists including two world class carcinoid specialists on treatments and management. It seems the most likely course for this one they found is to remove it by laser from the inside. He indicated that it would probably just me monitored closely if it wasn't blocking the airway.

My wife is rapidly becoming the world's foremost expert on carcinoids and there will be Hell to pay if the doctors and I don't perform properly.

Charlotte Brown

I am a Carcinoid Cancer patient and had a good Oncologist but she knew nothing about Carcinoid and told me I'd die of old age before the Carcinoid kills me. After many scans, tests, Octreotice scans, PET, etc., they still are not sure where my Carcinoid primary is located. Carcinoid was found in the lymph nodes at the airway when they removed the top lobe of my right lung for Adenocarcinoma. Carcinoid is now my 4th primary cancer. One of the Carcinoid specialists said it appeared as if the Carcinoid was feeding the cancers. I am currently undergoing a HALO procedure to rid my esophagus of dysplasia cells.

Dianna's information is right on! Prayers for your Father and for the whole family are being said for you. Seek the help needed, this diagnosis is too rare and there are not a lot of options. But there are some pretty smart doctors beginning to take notice of the needs of the patients.

Charlotte

E.P.

I had NO idea this was going on, Angela, and I'm so sorry you and your family had to go through those couple of days. I'm so happy it turned out to not be cancer. *hugs*

La Petite Chic

Oh, thank goodness that the original diagnosis was wrong. Still...keeping you in my thoughts.

Fraulein N

How scary. I'll keep you and yours in my thoughts.

Maris

Hi Angela -

Your dad's story hits home to me in a way, as I've had experience with doctors where they've given wrong diagnosis. It's scary how often doctors are wrong and horrible to think of the people who probably endure awful treatment that they didn't need in the first place, and the people that are diagnosed too late or not at all.

Best wishes to your dad for a successful surgery and speedy recovery.

Steph.

I'm finally trying to get back to blog reading. I'm so sorry to hear your family had to go through that kind of a scare and I can relate. My Dad went through something similar recently with a clogged artery in his carotid artery--was told it was a blockage possibly up by the brain, scared at how serious that was, then oops--it was a shadow of a bone on the first test they did. Lovely. He still has to have surgery and he has a heart condition, so that's serious. But, we're all breathing a sigh of relief a brain surgeon does not have to get involved and we're now being told this is not an emergency, but elective surgery. Hope you had a good Christmas today!

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