Hi Charm,

I haven't got time to read a 282 page book. As one who has had the same surgery, what link did you click on the find out about his 'surgical nightmare'? That part I'd like to read.

Take care,
Eileen

Eileen

Well, the "free" version is hardly 282 pages. On Brook's blogsite on the far right are a series of hyperlinks, the first saying Home and the second: Read my Book.
When you click on that, you get the whole story so I can't hyperlink it to you, but I have been a "speed reader" since 8th grade (actually won contests) so I just clicked on it, sped read it again and cut and pasted it out for you to read. While we may differ sometimes on issues, I have always found you both fair and fun so enjoy
[quote]Dr. Cooper began, �I would like to discuss with you the results of the pathological examinations. I have some good and some bad news. The good news is that there are no signs of cancer spreading into the lymph glands on the left side of the neck. The bad news is that the tumor is still in your hypopharynx. We have not yet removed it. The endoscopic examination done today confirmed that it is still where it was before.�
Words cannot express the extent of my feelings when I heard the news. I was stunned. How can this be possible? The surgeons didn�t remove the whole tumor last week? They had assured me they did, and the margins that were left around it were all negative. My first response was utter surprise and disbelief. Anger and loss of trust came later. Accepting my situation and making decisions for the best course of action came last.
The surgeon proceeded to explain that the tissue they removed with the endoscope was not the tumor, but rather scar tissue that looked abnormal. That abnormal area was only half an inch away from the cancer, but was higher up in my airway, so that when they inserted the endoscope, they observed it right away. Because that area looked very suspicious, they assumed that this was the tumor. They removed it and sent it to the pathological laboratory without confirming that what they took out was indeed cancerous. They then proceeded to take biopsies around the resected area. These biopsies were immediately frozen and inspected in the operating room and were found to be cancer-free. When the pathology laboratory read the resected tissue suspected to be cancerous several days later, to the surprise of everyone, there were no cancer cells to be seen, and the tissue contained only scar tissue. To my question why they did not do perform frozen sections of the tissue suspected to be cancerous in the operating room, Dr. Copper responded �We were convinced that what he had removed was the cancer.�
Obviously, the surgeons erroneously assumed that they had removed the cancer. However, if they would have requested that the pathologist who was present in the operating room confirm this by looking at the frozen sections of the suspected cancerous lesion, the error would have been discovered right away and they would have proceeded to search and ultimately remove the cancer, which was so close by.
It was no surprise that the biopsies around the scar tissues were all negative. The surgeons discovered their mistake only when the pathological report came back and showed only scar tissue in the specimen. What was left now to do was to go back and attempt to remove the actual tumor. The surgeons informed me that they were planning to do just that in two days.
I was puzzled and upset by the incompetence of the surgeons. I had so many disturbing questions for them: �Why is this not the standard of care to immediately study by frozen section the removed tumor right in the operating room? This could have prevented me from needing another surgical procedure. Furthermore, this failure has delayed the removal of the cancer for nine additional days. How could you have missed finding the tumor you observed several times before?�
What was even more upsetting was that a few days prior to the surgery, my surgeon reassured me that he was going to take biopsies of the cancer before removing it and confirm the presence of cancer at the site. His email just prior to my surgery said, �I feel confident that an initial endoscopic approach is reasonable in your case. We will, of course, take multiple mapping biopsies, from both your new primary site and old site.�
Later, I learned from the otolaryngologist that another adverse consequence of the failure to remove the cancer on the first surgery was that each surgery induces extensive local swelling and inflammation, rendering immediate surgery in the affected area more difficult. This was especially significant in my case because my tumor was located at a very narrow and difficult to access and visualize area. In other words, the best chance for successfully removal of the cancer by laser had been in the first surgery. After the initial surgery, the narrow passage where the tumor was situated became inflamed, irritated and swollen, and its diameter was therefore reduced. This made any follow-up interventions more difficult because insertion of an endoscope and visualization of the area were harder.
It was very difficult for me to contain my feelings of extreme anger and my loss of trust; but I knew it was inappropriate for me to express these emotions freely and in a non-inhibited way as I wished I could. I was very vulnerable and depended on these surgeons who were still taking care of me. I had close professional relationships with many of them for over twenty-seven years and liked them very much as individuals. I only wished I could tell them how angry I was and walk away to get treatment elsewhere. I regretted not having the laser surgery done by surgeons who had more experience with this procedure.
I realized then that experience is very important in this kind of surgery, and since throat cancer frequency is diminishing in this country, there are fewer patients with this type of cancer[/quote]
Charm

I can watch people eat steaks and all the other goodies and it doesn't both me as I suck down whatever I have made into broth. I do enjoy the odors of good food tho. I would feel bad if I made the others unconmfortable. When my youngest makes BBQ meats , he tries to get me some fat for to suck on and enjoy. That helps.

Thanks Charm. Boy that IS a bad experience. Am I to assume that the reason he had the total laryygectomy was because they failed to remove the correct tumor by laser the first time and they couldn't remove it by laser after that?

Dr Weinstein had hoped to be able to remove my tumor by laser, but when he put me under, he discovered it was too close to the esophageal opening to get a clean margin. Had he removed it by laser, I would have been on a peg for life. Another surgeon did my total laryngectomy. Inconvenient, but I've lerarned to live with it.

Take care,
Eileen

Jim I love the way you think about eating.I only wish Ron would too. I've offered him the fat to suck on when I also cooked beef brisket on the grill, he'd get all excited ya he will eat it and when the time came he refused. BUT he is getting better day by day with eating a lil something. Yesterday it was Ham and Bean soup I made and pureed it up for him, he complained it was only have a mug full, I didn't know how much to give him because he don't usually eat anything. Oh well will fill up a big ol' mug next time for him! Now he's on a Burrito Supreme kick, he said he just wants to suck out the inside of it. lol Taco Bell here I come! Whatever it takes, today he had his 6 mo apt with his Oncologist from his bout with Non Hodgkins Lymphoma, I asked him how much does he weigh, he said bout the same(130 last time)I asked him again how much(3x's) and he finally told me, 125. 6'1 125...God I need him to eat more and smoke and drink beer less. Now don't go preaching to me for help for him or myself, I get it. But he don't. So...I told him...he has to leave my house, because he is killing himself and I am not going to watch him die. I don't know what else to do for him.

Dr Brook, welcome to OCF. Thank you for taking the time to write such a long first post as your introduction. Im sure even though you are a doctor that you will learn many things about OC from this site. Wishing you all the best.

Suez - In my own experience with my son's recovery, I found out that tastes can change from day to day or even minute to minute. When Paul said he liked something I would go buy a lot of it only to find out he didn't like it anymore so it's better not to stock up on stuff but just get a small quantity cuz you never know how long the taste for it will last. When I would ask my son what he weighed, he said the same thing: "the same" meanwhile, his jeans were falling off his hips (like those "pants on the ground" people About the smoking, I'm at a loss as to what to do to instill in my other son (5 years older than Paul) the desire to quit. My mother smoked, my ex-husband smoked, my best friend (a nurse) smoked and they all died from smoking related illnesses. I just know that for some people it must be REALLY hard to quit. Maybe the only thing to do is to buy a lot of health insurance and life insurance to take care of expenses.

Eileen

Your assumption is correct. However the excerpt that I did only dealt with his laser surgery. He then within a week had TWO MORE SURGERIES by his doctors each one of which left cancer behind. Finally he had his larynx out on the FOURTH surgery described as follows
[quote]He felt that since the cancer had recurred after receiving radiation, removal of the cancer using laser was not a good option in my case. He believed that since my cancer was behaving in a non-conventional manner, skipping areas that had been scarred after being eradiated, the best option for me now was to undergo the most aggressive kind of surgery. This entailed removing my retropharynx and the entire larynx, including the vocal cords. To reconstruct that area and rebuild an upper digestive tract, he would replace the removed parts by transplanting a flap of skin with its underlying tissues from my hand or thigh. I would no longer be able to breathe through my nose or mouth because he would redirect the trachea so that it would open in my neck, creating a tracheotomy.[/quote]
I'd certainly be depressed if that had happened to me
Charm

I'm not married to him at least not legally on paper, we have been together since 1/16/98. He has life insurance I think his mom took it out on him many years ago. I told him to ask her if she has it still or what but of course he has not and I'm not gonna ask her either(she's mean) lol so if not...we will cross that bridge IF we come to it. I don't really buy anything special I do keep yogurt for him, sherbert, ice cream, choco syrup, creamed soups in can( i am a big cook so I always am making a big ol pot of some kind of soup every sunday especially now)I have individual packets of different flavored instant potatoes, jars of different gravies. BUT he won't eat "maybe" once a day. He says he drinks his boost and ensure and that canned stuff and I have found out lies to his family also, but I'm not blind, I bought a 12 pack of vanilla boost at least 1 1/2 weeks ago! and there are still 6 left. He is an alchoholic and when he drinks his beer, he don't/won't eat. I have given up. He chose cigarettes and beer over his life, or he just thinks he is invinsible since he's also in remission for Non Hodgkins Lymphoma since 08 too plus now this. I'm at a loss for words and feelings. I'm just making myself stressed and I'm not going to do that anymore because of somebody who won't take care of himself. I have to do something maybe drastic and make him leave. Either that will help him or it won't and if it won't it won't be on my head that I failed to help him get better it will all be on him. His father died of Non Hodgkins Lymphoma after 13 yrs in remission. Ya think any of this would smack this guy upside the head and make him realize his days are numbered if he don't change his evil ways? Nope not him.

Suez - I know it can be so frustrating being a caregiver and you certainly have been a good one with all you do for Ron. It still has not been that long since the end of his treatment - so maybe things could still improve. When my son was recovering, he was not always "accurate" about his meds or his intake of liquids or food. That's when I started keeping a spreadsheet on meds and everything he ate or drank and posted a copy on the refrigerator for him to fill in. That way I could show him what was really happening (and show the Dr. too). Also, you need to think about and care for yourself, so that you can keep your stress level down and your happiness level up.