Friday, January 05, 2007

I Belong To Several Cancer Mailing Lists...

...and have read many horror stories. I can attest, from personal experience, to the fact that you can get lost in the mix of that which is health care. It takes a lot of diligence on the part of the patient to make sure it doesn't happen. But this one just stunned me. Have a read...

My name is Gregory Brown and I am a 34yo male living in Los Angeles.

In November of 2004, I noticed a small spot on my cheek while I was shaving and I brought it to the attention of my doctor in December.

For six months and repeated visits she told me to "chillax" and that I worry too much. Unfortunately, I put a lot of faith in this doctor and followed her advice to simply keep an eye on it.

I saw her in March and June of 2005; still getting the same response even though it was growing. By that time I was covering it with a band-aid and even using makeup on ocassion.

In July, 2005 I went to Urgent Care and inquired about the spot, which had since grown to about the size of a dime and was a deep purple/blue color on the surface of my skin. I was finally given a referral to a Dermatologist who removed the lesion under the guise of "out of sight, out of mind".

During the follow-up appointment I was told that it was stage 3 melanoma and surgery was highly recommended. By the time a course of action was plotted and the scheduling was prepared it was October, 2005. It had been eleven months since I had initially brought it to the attention of my doctor.

I went into surgery to have the tumore removed from my face in November, 2005. During the surgery they also removed 17 lymph nodes in my neck, two of which tested positive for cancer cells.

In January, 2006 I was cleared to begin radiation therapy and endured a two and a half week course of high doses of therapy that tore apart the interior of my mouth and left me feeling nothing short or aweful, yet I was hopeful and confident this would be the end to my dilemma and the beginning of my recovery.

I spent the following months undergoing CT & PET scans at three-month intervals in which I repeatedly received a "clean" bill of health.

The week of Thanksgiving, 2006 I noticed a faint bruise covering a small nodule in the exact same spot as the original melanoma tumor and I notified my Oncologist. I was scheduled to see him in the beginning of December. I also made an appointment with my surgeon to secure a second opinion.

At the same time my Oncologist cancelled my pre-exisiting appointment, stating he was going on vacation for a month and refused to give me a referral for the routine CT & PET scans that I had been receiving all along. Even when I mentioned that I had a "new concern in the same spot", he failed to hear my cause and left me to my own devices and to worry.

I contacted my surgeon again, whom ordered a needle biopsy to give themselves the best chance possible of detecting any suspicious matter within the nodule. It came back negative for melanoma.

I recently saw my surgeon again. She cut into the nodule to see if it was an undisolved suture or tissue that had been affected by the radiation treatments I recieved in the previous year. During that procedure she told me that she did not like what she was seeing.

Today (January 4, 2007) I got the news that the Pathologist concluded it was recurring melanoma exactly where I had spotted it fifteen months before. Exactly where the surgery had been performed, only deeper into my cheek tissue.

I am now due to lose the cheek on the left side of my face and faced with yet even more uncertainty. As of today I will have to undergo skin grafting of some sort (the details are yet to be determined) to reconstruct my cheek and the left side of my face. I have yet to hear of the exact date of the procedure and the finals details.

I am worried about what I might endure as I have twice brought my concerns to my doctors and twice they have failed to show any care for my situation. Not once, but twice I was left in a "holding pattern" while I was frantically waving a red flag at them.

As I mentioned, I am a 34yo male and I have lost my brother to murder on my sister's birthday in 1992, when he tried to stop a robbery. I lost my mother to colon cancer in 1998 and my sister - who was left distraught over the series of events, passed away on January 6, 2000.

I am now living with my father, as we are the only two people that remain in our family.

From the first day that I knew something was wrong I began calling out for my HMO to help me and they have ignored my warnings and cries for help - with the exception of one person, the Otolaryngologist (surgeon). She has been pulling the weight of everyone at the hospital to make sure I am not forgotten.

I came across your story and your web site while I was reviewing articles on recurrant melanoma and facial reconstruction.

Of course I am scared and worried but I am also a fighter and a survivor. I am more worried about my father and the sacrifices our family has made - as a whole - than I am of my own appearance. In Los Angeles, that tends to be far from the norm.

As I type to you I have a large, swollen cheek from the biopsy and am covered in a head bandage.

During the previous operation my neck was pulled up to meet my cheek and now I face a more complicated surgical procedure in the exact same spot that I did only 14 months ago.

I cannot understand why someone can be ignored by doctors and Oncologists when I have repeatedly called out to them that something is wrong and needs to be investigated.

From the sounds of it I am fast-approaching a surgery similar to the one you endured - that is, if they do not forget about my needs.

I have faith in myself, the willpower and strength to not give up but I cannot go at this alone. While I do have my father and a supportive group of friends, none of us are doctors.

Twice, I have done my job as a human being and a patient. Twice, I inquired about a noticeable problem and change in my skin. Twice, I have been ignored and overlooked.

I am angry at myself for trusting in doctors who proudly hang credentials on their office wall and I am fearing the series of events that lay before me, yet I also plan to fight and win this new battle that looms before me.

My biggest problem is that my HMO is not recognizing my needs and in an environment/climate such as Los Angeles, my nature of being fair-skinned and blue-eyed, their will to care for me as both a human being and a patient seems extremely dimished and insufficient. After years of being with them I feel they have already written me off as a statistic.

I have researched melanoma from the day I was first diagnosed with it and I boisterously declared that I could look like Frankenstein - as long as the issue would be dealt with in a proper and professional manner. I have done my duty and now I feel I am being robbed of my very own existence, not once - but twice.

Yes, two to three weeks from today I will awake from the operation and see half of my new face in the mirror but I wonder if anyone other than my father will realize that I am still alive and have the will to survive.

I grew up in a family that respected professionals; doctors and the like and as such I had a great trust in them. Now I am faced with looking them in the eye and wondering just how it is they even came dawn a white coat.

All of the signs that something was not normal were there from the beginning and I did my duty as a patient. How do you find the trust and faith in others to stand with you in a time of need after they repeatedly fail to heed your cry for help?

This is round two and this is life with an HMO but this is my life and I, like you, still plan on living it.

Thank you for sharing your story and any information you may be able to provide would help me a great deal as hope itself, fades in and out, hourly, on a dialy basis.

I wish you the best and I pray for you. I hope you can find the time to say a small prayer for my struggle and speedy recovery because I think myself, my family and my friends need all the support we can get.

Gregory Brown


Anonymous Anonymous said...

I wish the best for both of you. Damn. What a hell of an ordeal. Pisses me off to hear about people being treated like that by "professionals" who should be tested for a conscience.

11:08 PM  
Anonymous Mark said...

I can't look at the medical profession as anything but a business anymore.

4:15 PM  
Blogger k said...

I've been through a fair amount of HMO hell too, although different from both of yours. You two have my sincere and profound condolences for everything you're going through.

I've had great doctors and terrible ones. Without the good ones I'd be dead several times over now. Just in time for the bad ones to almost kill me all over again.

And when they act like they did with you? I want to drive out to LA and gun them down for you.

Because you did YOUR job just right - and you had to wing it, it's not a job you go to school for.

But them? They DO go to school for it. And in that school, one thing that actually gets taught is the concept of compassion.

Only thing is - they can graduate without having a sliver of real caring anywhere in them.

Keep up your good work, Gregory. Now that you know you should NOT just automatically trust them, you'll be, at least, safer. Your efforts and your perseverance and your character - the one that says to live your life despite appearances, that it's not the looks that matter - are remarkable and commendable. I bet you'll come through with flying colors.

Good luck to you, both.

8:49 AM  

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