My Experiences At Stony Brook Cancer Center And I have Updated Learning From My Mistakes

I have decided as my blog grows to review and revise and correct any earlier blog posts that I may have written early in my cancer fight. In that light, I have updated and republished this early blog post. It was originally written July 3 of 2013. I have fixed a few things and made a few corrections. I hope it helps you in your fight. ~ Ed You can read the original post here.

I’ve had a bad experience and so, in an effort to help others I have decided to post what happened and what I’ve learned from that experience. The “incident” happened right after I was diagnosed with cancer. Hold on because the ride gets a little bumpy but maybe you can learn from my mistakes. I’m learning from my mistakes and maybe you will too.

You should know that throughout this entire process I am nothing but, polite and respectful to all of the medical professionals involved in my care. Never did I have a tone in my voice. I never had an eye roll. I am only looking to get the best care possible and to educate myself regarding my condition.

The reason I feel the need to mention this is because I feel that I should dismiss the “He had it coming.” reasoning before I start my tale. It gets a bit negative but, in the effort to be helpful to others I’m trying to put it all out there…good ~ bad and otherwise. I will try not speculate on the motives of the individuals involved. As a side note, there was a nurse there who actually was very professional and did her best to make me comfortable.

So, here’s what happened to me ~ This is the short version.

I felt sick. I didn’t feel terrible but not healthy either. I started having trouble with my stomach…and “the lower bits” to be polite. So, I got scanned and had a colonoscopy, the surgeon removed some polyps and the biopsy was returned with a cancer diagnosis. Of course there’s more to it than that but, that’s the gist of it to save time.

Carcinoids, what’s that?!

So, I have cancer. Here’s how little I knew. I didn’t realize that there were different kinds. I just thought you had cancer in different locations. Now I know better.

I was told that I had a type of cancer that is called a carcinoid and I was told that I was lucky because they grow slow. (Lucky Me. I would have preferred a lottery win.) I was told that in the same way that there were humans and humanoids that there were carcinomas and carcinoids. Yes, a doctor told me that. I’m still not sure what a humanoid is….should we all think of a politician now? <just kidding>Β  πŸ™‚

I should have been directed to a cancer specialist but I was not. I should have known to do this myself but, I did not. I know now that I did not know anything.

Lesson Learned: I realize now that there is a lot of ignorance regarding carcinoids and neuroendocrine tumors and a lot of insensitivity as well. I should have known that just because a doctor neglects to admit ignorance on the subject of carcinoids and neuroendocrine tumors that does not mean that they are qualified to advise you. I should have gotten to a carcinoid, neuroendocrine specialist right away.

My Next Step ~ A Consultation

I was referred to another doctor for a “consultation”. I was told that this doctor was a specialist and that he had previously dealt with and removed carcinoids. I was told that I was in good hands and that I could trust him. He was supposed to be the best.

Lesson Learned: I should have asked “The best at what?”. As it turns out, it was NOT carcinoids or neuroendocrine tumors.

The night before I was to “meet” with the doctor for a consultation I received a call from his nurse telling me that the doctor wanted to conduct a small examination while I was there and she wanted to know if I was willing to undergo the “procedure“. That is the word I should have “red flagged” on. The nurse told me that he could operate on my liver as well as the tumors in my gut so, I agreed. I think they deliberately misrepresented the situation so that I would agree. You see, at the time, I did not know that the tumors had spread to my bones and other areas of my body but I did know about the liver. The more questions I asked the less patient the nurse became. I felt pressured and stupidly went to the appointment….but, what could I do? I was full of fear….I had cancer. I’ve learned a lot since then.

Lesson Learned: I should have gone to a doctor who specialized in carcinoids/neuroendocrine tumors. I should not have allowed myself to be “sold” on a procedure. I should have listened to the “little voice” that said wait.

So Shiny, Modern and Clean

Huh? Valet Parking! Wow, look at this modern building. Not a piece of paper in the parking lot. Wow, this place looks good. I was wrong. As it turns out, none of that matters if the doctors and the staff treat you poorly. I’ll try to make this short and sweet and factual. Here we go….

Will Patient THX-1138 Please Step ForwardΒ  The valet takes my car keys and points me to the cancer center and I sign in. So far so good. After sitting for a bit, but not too long, a woman steps forward and calls for somebody who’s name begins with an “E”. I’m sitting for a while and nobody steps forward. I look at my wife and she looks at me and so, I’m assuming that they meant to say “Edward” (maybe). So, I get up and ask. Yes, it’s me and I get lecture #1 from the person who will take my information for the hospitals registration procedure and insurance details. She couldn’t read my name. “OK, I think (surprised), but you could have called my name a second time instead of just turning your back and walking back to your desk.” (I never said this out loud.) I wonder how long they would have let me sit? She gives me lecture #2 as I’m sitting at her desk because my insurance is not a typical plan, according to her, and she let’s me know without looking up and sighing in annoyance. I guess my insurance plan is more difficult but, I don’t really know. Yes, the hospital messed it up and billed me for thousands of dollars later. We’re still fixing this. They complete the check in process and point me toward the doctor’s waiting area.

Meet the Doctor and Staff Attempt 1 – I fill in more paperwork which is no big deal but it is a bit lengthy. We get it done and wait to be called. We are called fairly quickly. Sadly, I see so many people who seem so much sicker than me. It breaks my heart and I want to help them but, they’re strangers and so I stay silent. Anyhow, my name is called and I’m ushered in to a room. Yes, they could read my name. πŸ™‚ I’m told to disrobe and that the doctor will be in soon.

Again, my wife and I are looking at each other. Why am I disrobing? I’m supposed to be getting a consultation from a specialist who has dealt with carcinoid/neuroendocrine tumors before.

Meet the Doctor and Staff Attempt 2 – The nurse returns and tells me to disrobe again and, before she darts back into the hall, I ask about the consultation. She doesn’t know anything about any consultation and I should disrobe because the schedule is packed. I don’t. Now, I’m starting to worry. There is no changing room, no curtain, no privacy…and the room is like grand central station. No one has asked how I feel. I’m not sure what is going on or what the procedure is for.

Meet the Doctor and Staff Attempt 3 – Now, I’m sitting on the table completely clothed and every person who walks in tells me to disrobe. In between their coming and going my wife and I are whispering to each other convincing ourselves that we are not crazy. Why am I not getting a consultation. Finally, the doctor steps in and tells me to disrobe and begins to write something. There are at least 5 or 6 other people in the room just staring at me and are now waiting for me to disrobe in front of them so they can get on with their day. There is no concern for my privacy or dignity.

Lesson Learned: When you are being treated like a lab specimen it might be time to step out gracefully, cancel the appointment and seek medical professionals that have more compassion.

Consultation, What Consultation – I ask the doctor what exactly is going on. What about my consultation? I need to know what this carcinoid stuff is, what kind of cancer do I have…anything?! Β He tells me what I already know (it’s a carcinoid, slow growing, I’m lucky etc.) and informs me that he doesn’t have time for this and to disrobe and we will talk after the procedure. He then tells me that “He doesn’t have my records from the other doctors and couldn’t tell me much anyway” and now I’m blown away. I ask how he is going to perform an examination without my medical records? He insists that he doesn’t need them for what he is doing because it is a simple examination. I try to get in touch with my doctors and have them fax the records but, I cannot reach anyone.

I ask if there is pain involved in the procedure, he says no (AN ABSOLUTE AND DELIBERATE LIE) and so, I agree. THEY INVITE MY WIFE TO STAY AND WATCH! I’m not making it up. Of course she doesn’t want to stay and waits in the lounge area. I am read of list of medications and asked if I took any. I say yes to aspirin for some mild headaches and I receive lecture #3. Didn’t I know that I should not take aspirin for more than a week before a procedure?! Actually, I did not know that and I say “You didn’t tell me.” In fact they didn’t tell me anything, sent no email and scheduled me at the last moment. They never told me how to prep for the procedure at all. You will probably not be surprised that they moved forward with the procedure anyway.

Not So Shiny Any More – In the middle of the “procedure”, which is in no way simple as it takes more than an hour and a half to complete, the equipment breaks and he yells at his staff for not checking it beforehand. Yes, I am fully awake and I have no anesthesia and no pain killers. Everyone is scrambling and banging the equipment and I’m thinking I might have gotten better care in a third world country. The wow factor has shifted from me being impressed with the shiny facade to how badly I need to get away from these people. Oh, and there were 2 procedures not one. The entire process was a nightmare.

My Consultation – The Procedure(s) end and I’m told to get dressed and, afterward, I am directed to the “Doctor’s” office. He has a huge desk and after all of this I am hoping that I can finally extract some information out of this man.

Nothing but Name, Rank and Serial Number – Everyone piles into his office including a student who was there during the procedure(s). He says that I have “a disease of the liver” and I ask what it is. He says that I don’t need to know. I look at my wife and then return the doctor’s gaze and say “I think I do since it’s my body.” He then says that he cannot remember. I’m starting to wonder if he is incompetent or deliberately withholding information. My wife is convinced he was withholding information and I suppose she is probably correct since he is an accomplished physician. Finally, after some back and forth he tells me. You have carcinoids. Yes, and there is only a single medicine for it. I ask what it is and then the same dance ensues. I look up and the nurse that sold me on coming here is grinning. I still cannot fathom what was going through her head.

This is Going to Make You Angry – Everyone that I have told this story to has been in shock until I get to this point in the story. This is where everyone gets angry. I did not. I continued to try and get information and find out about my best course of treatment.

He says, “Edward, “How serious are you about this?” I ask, “Is my life in danger?” and he replies “Yes”. I reply, “Then I am deadly serious.” and he says then I need to have surgery right away to remove the tumors in my gut. He insists that this needs to happen NOW. We agree and schedule an appointment. My wife, Lisa, agrees because they have successfully terrified her. I have agreed because I know that I will get no further information unless they foresee a possible surgery.

I ask for my medical records fully intending not to return and he says that they have nothing. I say what about the results of the procedure. He says that his notes are only for his reference but, he has some records that I can have. They tell us to wait and leave us waiting for over 20 minutes in his office in the dark. Finally, I get up and ask if the doctor will be back and the nurse laughs and sarcastically remarks “Are you still here?!” Yup, one last punch in the face. We get the records and leave.

I Finally Get it Right – I get my “records” and head to the lobby to get my car. There’s no valet and the security officer will not let me take my own keys. I show her my driver’s license and registration….no good. I have to wait. We wait…and wait. He finally shows up, retrieves our car and we drive away.

The drive is silent for a while as we try to deal with my prognosis. I have 5 years…10 if I’m lucky…at least that’s what the doctors are saying. My wife is shocked to learn that I won’t let this “butcher” touch me again. She protests because she is afraid and we talk and cry.

If the doctors are right then our family will be eventually ripped apart by this disease. Our son will have no Dad. My wife and I will be separated from each other when nothing on heaven or earth has been able to do that to us. Until death do you part takes on a new meaning now. We still struggle with these possible realities but we hold out hope and faith that this will not happen to us.

Don’t Believe Your Lyin’ Eyes – We begin to talk about the “hard sell” we were just given and I explain that the doctor has just told me that I have a slow growing cancer but, I need immediate surgery to remove it. It doesn’t add up. When I talk about the tumors in my liver he changes the subject and tells me that’s a different problem and that I should focus on where the cancer originated.Β  I later find out that everything that I thought and suspected is true. There is no rush for surgery. If it was only in my liver and gut then it could have been operated on at the same time not separately. He was pushing me for surgery WITHOUT having my medical records or any of the scans from the other doctors. In addition, after following up with other doctors I find out that it has spread to my bones, lymph nodes, liver, gut and probably other places. They have ruled out surgery as a cure. They suggest surgery only to relieve symptoms.

THE BIG LESSON I’VE LEARNED –Β Β You must stir up all of the courage that you have, all of the strength that you have and prepare for a long hard fight.Β  You must become your own health advocate and have the courage to say “no” when something is not the correct medical choice for you even in the face of pressure from those you respect. You must also have the courage to say “yes” to something that others do not approve of but, in your opinion, may be best for you. You must become a completely new person. You must become a warrior. Hate the cancer. Stir your passions and fight. Fight for your family and those that love you.

Trust God. If you believe in God, and I do, then you must have faith that he loves you. It is said that we are God’s children. If you believe that then think of yourself as being under his care in the same way that a parent loves and cares for a child. Then think about how much more love God must possess than even the most loving parent. I am not sure that I will make it through this but, I am sure that God loves me and mine.Β  I have faith that this is true although the things I see may not always confirm that.

Make a battle plan. Part of the reason that this all went so bad for me is because I had not yet developed a plan. It can be a simple plan at first but, I’ve learned that I need to make a plan just like any other large and important project. Part of my plan includes seeking the best medical experts and not an “also doctor”. In other words, I do this and also carcinoids. Seek someone that will be a good match for you and is, in your opinion, a good fit.

It is my hope that by sharing this negative experience, and the lessons that I’ve learned from it, that it has helped you in some way. Then I will know that it was worth putting out there.

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11 Comments

  1. I think this is repeated daily amongst the Newbies…I kept waiting for you and your wife to walk out. I am fortunate that such was not my case. The newly diagnosed need to see such stories and…learn from the mistakes of others who are willing to tell others. Glad to see your update.

    • Yes, thanks Gary. πŸ™‚ We were “newbies”, and you are right, we should’ve walked out. Thanks for the moral support. πŸ˜€ I think they would literally have laughed at us if we stood up and left. They were horrible people. ….oh…and YES, I have had multiple nurses laugh at me before and after my cancer diagnosis in New York. I am so glad we are not there any longer.

  2. Thanks for sharing your experience and lessons learned. I think no matter where cancer patients are in their journey, that we can use a reminder about the importance of trusting in our instincts when something doesn’t feel right. Not an easy task by any means.

    • Hi Susanna,
      You know, I was sitting there and thinking….I’m being “sold”. I felt like I was sitting in the manager’s office at the car dealership. The bid desk says “don’t question my authority over you.” The rush to surgery says “You better move on this because you may lose your opportunity for surgery (or to buy this car). The gang of employees watching us putting pressure on us to obey the doctor so they can be deemed “good employees”. and so on……horrible.

  3. Great post ED! for me GET A SPECIALIST was my battle cry from the very begining The reason I have lived for 16 years is beacause I found one early on, back in 1999 when not a lot was known about this cancer. The internet wasn’t like it is now, so we flew from Seattle to New York and met with Dr Warner, head of the Carcinoid Tumor Foundation, from him, after my REAL consult, found my Specialist Dr Rodney Pommier all the way back on the west coast and only 200 miles from home! I have sent him many patients and my regular Onco doc here at home always sends me new patients to chat with once dx with Carcinoid.
    I am so sorry you had to go throug that ordeal, but now you are able to help SO many other patients using what you LIVED through!
    Keep up the GREAT work!! Xochi

    • Ug! It really was difficult but you are right…people get to benefit from my pain and that is why I write this blog. πŸ™‚ Maybe, if I am lucky, somebody will be spared the same pain we have gone through. πŸ™‚ Believe it or not, I have tried to find a specialist so many times it is ridiculous. I have actually navigated most of this journey on my own. It’s crazy but, my next move is to try one more time to find a specialist that I can work with. Thanks for the encouragement!!!!

  4. Excellent posts! We have been the victim of ego-based medicine rather than evidence based medicine. I’d like to see more attention raised from the NET community regarding insurance coverage. We are fighting for coverage of 4 PRRT treatments. Insurance requires large scale randomized controlled trials, well that doesn’t fit with rare diseases. There most assuredly is insurance policy discrimination against those with a rare disease. ERISA regulations need to address the unique coverage needs for those fighting a rare disease and require health plans to address those needs. Am trying to arrange meetings w US congressman and US Senators to discuss , no response so far.

    • Thanks for the kind words. πŸ™‚

      We are fighting for insurance coverage of 4 PRRT treatments as well !!! I think one of the big websites has an article on it. I will look. I’ve never heard of ERISA. WOW. Maybe you should run and make your cancer fight public?!

  5. Pingback: Learning from My Mistakes - Carcinoid-Cancer.com

  6. Thanks for sharing so much that can go wrong.
    Patients need to get the information out there to highlight the few qualified (quality) specialists

    • It’s true, so much can go wrong. I went through a lot of difficult experiences to find quality doctors. I hope it has helped others to find the doctors that work for them. It’s hard…..we trust them with our lives and some of them don’t deserve that trust.

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