Three Years & Counting on the Cancer Front

[drcollie]

An update to this thread;

In May, a friend on mine who lives in Nashville TN contacted me via email as his wife Emily (who is a nurse at Vanderbilt) was having some odd medical symptoms. Her doctors could not pinpoint her ailment and he remembered me telling him what my symptoms were of Carcinoid Cancer. At my suggestion, she had a blood CgA (Chromogranin) test and ! pow ! there it was. She had the same rare cancer that I had. Her doctors has said 'no way, couldn't be' but it was. Further tests confirmed it. After that. Emily and I became 'pen pals' swapping emails about cancer over the summer, and like all newly diagnosed patients she was a bit freaked out over it.

Seeing as she was part of the medical community at Vanderbilt, and they are one of forty national Comprehensive Cancer Centers in the USA, she sought care there from the cancer doctors on staff. I certainly could appreciate that, as she had worked there as an RN for over 20 years. None of the staff there were Carcinoid Experts, however. As summer progressed she emailed me that the cancer experts there decided the best course of action was to take a 'wait and see' approach, and stay on Sandostatin injections which will block tumor activity for a period of time until dosage tolerance comes into play in about two to three years, then the Sando is no longer effective. They told her she was not a surgical candidate, there were too many tumors in her liver and they could not locate the Primary Tumor.

I told Emily very firmly that "Wait and See" with cancer is really 'Wait to Die" and she needed to go see my surgeon at Johns Hopkins. After thinking about it for a bit, she got on an airplane to Baltimore and met with Dr. Micheal Choti, the guy who saved my life almost five years ago. He told her he could help her, though she remained very apprehensive about having a major surgery so far from home, especially when she didn't really feel all that bad. Eventually, after more emails with me, she decided to schedule the surgery - though she was nervous about it.

Yesterday she had her surgery with Doc C. Her husband called me immediately and was SO happy! Doc Choti removed all the tumors, including a massive 9cm one in the liver (size of a softball), found the Primary in her bowel and did a resect there, and told them that he got it all out! They are thrilled. From 'no hope' at one establishment to being cancer-free at another. That's quite a reversal of fortune. Like me, she will have to take periodic tests for five years to be largely past the recurrence stage, but Doc C got it all - he always does (I've directed nine people with this particular cancer to him, the outcome is always the same).

So I'm thrilled for Emily, and continue to preach to whomever will listen "NEVER GIVE UP, and GET OUT OF YOUR COMFORT ZONE WHEN A CRITICAL DISEASE STRIKES". You have to find the right doctor and the right hospital, they're not all created equal. Even some of the 'big name' places are not up to the task in specific diseases.

[yogi]

Thank you, Thank you, Thank you. I visit this site often and get more than just furniture advice. Thanks for sharing your stories and experiences. They are helpful and many times give us time to reflect. I will keep your friend in my prayers today.

[drcollie]

Update!

Emily had her surgery and is recovering nicely and has returned to her job as a nurse, but tires easily so is still having some difficulty working a full day's shift. Will take her a few more months until she gets that stamina back. She's struggling with the thought that the odds are her cancer might return in her liver, and that's put her in a bit of a dark place. We talk on the phone about it, but its something one ultimately has to come to grips with and confront, scary as it is.

I had a nice long chat with Mike Choti a few days before Christmas. He's really active into seeking a cure for this cancer and excited as to new treatments and detection tools coming down the pike, and says the key to getting funding it getting an awareness out there such as I do talking about it. As I will be five years post op next month, I'm past the critical recurrence stage with mine but he told me I should still get tested at least once a year to make sure it hasn't come back. Then he told me something that really gave me pause.

He said "You are one of the very few whose cancer has not returned in a five-year period."

I had to ask, "Really? What percentage group does that put me in?"

"So small as to be statistically irrelevant" he replied.

We talked performance cars (a favorite hobby of us both) for another 10 minutes, then bid each other a Merry Christmas and got off the phones. Afterwards I thought about what he has said for quite some time. "No recurrence a rarity". Guess at the end of the day it has a lot to do with plain old fate, or whatever you would like to call it. Sometime you just get lucky in life, even after all the highly skilled help of a world class surgeon. If mine - or Emily's - does return, we know who to go see....

[pstef]

Duane, Your a special kind of person and I hope some day to be able to meet you and shake your hand.
If Emily is reading this, God bless you, life is worth fighting for and never give up the faith. I have a friend that will under go surgery this week for cancer of the sinus cavity. They will remove some or most of his upper jaw, roof of his mouth and bones to support his eye sockets if necessary to get to the cancer. I find it totally unimaginable.
My aches and pains have been quietly dealt with since hearing of his situation.

[drcollie]

You will find that in most (but not all) cases people will do what they have to do to stay alive. Its not fun, I certainly didn't want to have most of my liver removed and nearly two feet of my small intestine, but that was my shot at living, so I went for it and came out OK on the other side. Its a very effective weight loss program, too!

There are two kinds of Stage IV Cancer Patients in my experience.:

* Those that do whatever has to be done and gut it out no matter what it takes in grim determination and quietly go about their treatment. They don't stop until they've exhausted all their options.

and

* Those who decide to not try the most effective treatment protocol then blog / talk constantly about how miserable they are about dying and have a non-stop pity party for themselves.

[Tom Burson]

Duane - Hi. My name is Tom Burson, and live in Loudoun County. I was diagnosed with a small bowel carcinoid last February and underwent a right hemicolectomy and gallbladder removal in March (in New Orleans). No signs of spread were detected (20 of 20 nodes negative), and no evidence in the liver. My scans were negative, and the markers were all negative. However, I've had bad diarrhea all year (even prior to surgery), loud noises from the gut, minor swelling of feet and ankles, heat intolerance, and flushing. However, all my doctors have said that I don't have carcinoid syndrome. Until last week. My CgA came back elevated for the first time. I have an O-scan this week. I was wondering if I might be able to obtain some advice from you on doctors, and generally how to navigage through all this. I've been disappointed at my doctors around here. I'm also heartened by your story (and also a little disturbed by Dr. Choti's comment that the number of people who go 5 years without recurrance is "statistically irrelevent". Would you have a few minutes to talk by phone sometime today or this week? All the best. -- Tom

[drcollie]

Hi Tom,

You must have had your surgery with Dr. Woltering in New Orleans, yes? He's a good guy. Certainly - give me a call at the store, I ALWAYS have time to talk with another cancer warrior.

Elevated CgA levels are caused by increased Serotonin production, which in turn is almost always the result of active tumors in the liver - at least that's my understanding. You may have had some microscopic involvement that was undetectable in scans and now those cancer cells are large enough in the liver to spike the CgA markers. The O'scan and CT scan can probably tell. Doc Choti was telling me that a new Carcinoid PET scan that is far superior to that Ocreotide scan is about ready to be available as well, he was very exited about that as the O'scans are quite primitive.

Since you're so close to Johns Hopkins, I'd absolutely recommend you go see Mike Choti and take your records and scans with you since day 1. He's on a different level than most doctors and I have 100 % absolute faith in him in being the best in the business for gut cancers. There is no Oncologist specializing in Carcinoid at Hopkins at the moment, Choti is a surgeon - but definitely go see him. Smart man, a real lifesaver. Call Shoshana up and see if you can get a consult.

http://www.hopkinsmedicine.org/surgery/faculty/Choti

[Tom Burson]

Hi Duane - Thanks so much. I will try to reach you later today at the Keeping Room, using the number from their website. By the way, I may also be interested in buying a sofa, if you have some advice around that too. - Tom Burson

[drcollie]

That Cancer Milestone:

As I type this, it was 5 years ago exactly that I was wheeled into an Operating Room at Johns Hopkins Sidney Kimmel Cancer Center and had my 'inoperable' cancer operated upon. In Cancer World, the 5-year mark is the finish line to reach in the marathon of survival. If you make it to 5 years without a recurrence, then you're considered 'cancer free'. Granted, there are always exceptions to that rule but for the most part you can ease off on the scheduled testing or even stop it completely, and unless you show symptoms can focus on other health issues like eating too much ice cream and getting fat.

I think that tomorrow, my cancer birthday of 5 years, I'd like to go by Falls Church VA and see if a particular surgeon is in his office and ask him to lunch. The one that told me 5 years and 3 months ago that I was terminal as my wife and I sat in his office and that I had no more than 18 months to live. The one that said "I'll operate, but there is really no point to it, your cancer is too advanced. But if you want to do it, I'll go in and clean up what i can." I wonder if he'd even remember me? I wonder if he would even care? Lucky for me, his attitude turned me off and I went on to find the man who DID operate on me and DID get all the cancer removed when others said it couldn't be done.

So - happy Cancer Birthday to me. To tell the truth I didn't think I'd make it without a recurrence. Think I'll treat myself to some of that ice cream tomorrow. I wonder if Baskin Robbins has any Chocolate Almond this time of year? <g>

[pstef]

Duane, Get on the BMW and have a great ride! I wouldnt waste time on the Dr.
Happy Life Day!
Paul in Ohio