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Guest spiritual

I have been holding back my anger of the fact I have to sit back and watch my love one with stage IV NSLC adenocarcinoma. I am waiting to hear back from the medical facility in their response to "medical negliance" since I found out in her medical report dated 9/03 that the Nose, Ear & Throat specialist found a 3 cm possible mass and never told us of it!!!!!!!! and both lungs were cleared on that date

On 2/10/04 she went in complaining of shortness of breathe and from a CAT scan found her tumor and her right lung had collapsed. To this date no one has mentioned their error/fault and will I just do not trust a single medical doctor because of this!!

I will do all that I can within my powers to see that they are held responsible for this and someone needs to clear up my "what if"!!!!!11

What if they had communicated this to us back in 9/03 when her lungs were cleared. Would she had been a good candidate for surgery??

Would it have been stage I, II or IIIA or B??? what other options would she had been given back in 9/03???????

instead on 2/04 we were told that it is inoperable and that we need to focus on her quality of life and care with a life cycle of 2 years with chemo at the most!!!!!!!!! DO YOU THINK I WILL BELIEVE THEM?

This is why I turn to this website because it sounds that you all care for one another and stay in touch.

She is okay and I am tracking down her medical records because even the oncologist had put down at one time she had stage III and it was breast cancer!!! can you believe that (#(*!!!! my GOD, they can't even get the diagnosis righ!!! now I am wondering other things!!!

anyway, i just had to get that off my chest.

I wish you all the best and keep us in your prayers as I do the same

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Hi,

I have had 3 different emergency room doctors "not see" my cancer on xray.The more you read on this board the more cases you will see of xrays not showing anything.I think you need to find some way to rid yourself of all the anger.It is a normal response but nothing about this b*stard disease is normal.You will need all your strength and emotions to deal with this disease and anger will do you no good.I can understand the frustration and anger but you need to find a way to move on and leave it by the wayside.Praying for us all.TBone

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I know your anger, LC is often misdiagnosed because many times it is diagnosed as pneomonia. That was my dads case for months, I remember my mom at one time pointed out this mass that she had seen on the Xray and the doctor told her it was from smoking it ended up being a tumor, how crazy is that, the doctor didnt even know after seeing it.. I know how hard it is, the anger will take ahold of you and drive you crazy. My advice is to try and let go of it and concentrate on getting your loved one well..I know you are saying yah right easier said than done, but I have been exactly where you are and its an awful place to be, the anger is so overwhelming, on top of everything else that you will be dealing with, your emotions are not quite in tact right now..Vent all you want though we hear you and understand..

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Channel your energy for positive, not negative. Find a counselor that deals with cancer patients/caregivers and talk it out, the anger is not good. It IS "normal", but to allow it to have a life of its own is NOT a good thing. Work it out, get rid of it.

Now, I'm NOT saying not to do what you feel needs to be done legally, but some of it, you may want to wait on. Right now, the important thing is treating what is going on. What ifs will not help you in this, you have to deal with what IS, not what could have been (Refer to Snowflake's Rule on Beer Trucks - it COULD have been caught earlier, but she also could have been hit by a beer truck on the way to her treatment, Bingo, whatever...AND cancer does not remove one from the Random Beer Truck Lottery, either).

Dwelling on how much better it could have been will not help your loved one's emotional state, either. It's like you confirming that she has a death sentence, I surely hope you aren't ranting about the shouldas and couldas to her, bring that here - or to a counseling session.

Point is, she is STILL treatable. She may NOT have been a candidate for surgery when her tumor was smaller, depending on location. There are people here that have had HUGE tumors removed, others have not been able to have small ones removed due to where they were...

I'm sorry it wasn't diagnosed earlier - if she was a never smoker, there was no reason for the average doctor to even SUSPECT she had lung cancer - after all, non-smokers NEVER get lung cancer (am I right, Hebbie, Don, you other non-smokers??). Mine was found quite by accident on a November x-ray - nothing showed on an x-ray I had had in March of the same year - eight months earlier! According to my oncologist, my cancer had been growing between three and five years, it just had to reach a certain point to actually be visible on an x-ray - and not exactly a neon sign at that. My GP just wanted a closer look at a small "cloud" and sent me for a CT, then the sh*t really began to roll downhill...

You MAY have a case for negligence, you may not...but dwell on that when the important stuff has been taken care of. Right now, I would label the "Important Stuff" as your loved one's emotional well-being, her physical treatment and her pain/symptom management. There are MANY people here that have been living with cancer and fighting it for a very long time. Keep reading!

My best,

Becky

PS - I'm SERIOUS about the counseling, it will help you and give you some good info on supporting your loved one...

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Guest spiritual

Thank you all for your comments..

I will be the first to say, that I am dealing with 2 separate issues: 1) the error of the doctor(s) and 2) the HERE AND NOW of my love one

Personally, for me TAKING ACTION is the solution. That is why I am here at the website, to vent without harm as DON WOOD has said. It is the safest place to go.

My strength of love, courage and hope comes from within and by releasing some anger I can make room for the sunlight of the spirit to enter and continue to give me just what I need, one day at a time to help those I love the most----my family. This has been working for me on a personal level for some years now.

I know I will get through this as I have been able to get through some other tragedies in life. Life is just that way.

As a matter of fact, my anger sometimes work for me, especially in my present situation with my love one.

I am her advocate, her eyes, her voice, her ears!

I walk in everytime into the medical facility ready for battle and. Just the other day they wanted to "just postpoine her CAT scan" because their power was down. They wanted to resechdule for mid July. Will that just isn't/wasn't acceptable to me!!!!

I told them (because of my anger) "either you call me when your power is up and running immediatley, call her oncologist at home and/or take her over to the local hospital for the procedure" YOU KNOW THEY FOUND A SPOT on their next business day...NOW IF I WASN'T USING MY ANGER THEN YOU TELL ME WHAT I WAS USING because I would have simply accepted their first response but since I am angry at them all, it is helping when used appropriately..I am directing my anger in the appropriate places for the right reasons---TO FOCUS AND BE HERE FOR MY LOVE ONE.

I visit this website to get information on some of your treatments since I will be going that route eventually.

I write and express what is on my mind because it is okay. IT IS OKAY TO GET ANGRY but it is not okay to keep it in, venting it and nursing it.

So, thank you Don for allowing me to vent and will continue to vent and do what I have to do to get what is due her.

Anger is part of the healing process and I may be here for some time but believe me when I say, the anger is not running the show! Anger is not controlling me this time==I am controlling it :)

I am making it work for me rather than against me..

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I too had a missed diagnoses, I believe. I had an abdominal CT scan 8 months prior to my diagnoses that apparently mentioned a "shadow" in my lung that should be followed up on. I was never informed of that.

Flash forward 8 months and an unrelated x-ray in the emergency room showed this same shadow, only larger. Fortunately, it was at the same hospital and they had the old slide to compare it to. One test led to another and the diagnoses was made with the comment "didn't you follow up before?", to which I responded "I would have, had I been told...." Dead silence followed.

I have had several loved ones try to convince me to take action and sue however, I have chosen to look forward, not back. I can't chance the diagnoses. Could I possibly have been a Stage I or a Stage II 8 months earlier? Probably not. My oncologist said from the size, it appears to have been growning for about 4 years. Would the 8 months difference have meant a few less positive lymph nodes in the mediastinum? Maybe. But again, I can't change it. I don't want to feel anger, resentment and negativity. I want to feel positive and hopeful and focus on moving forward.

The "what if's" will eat you alive if you let them. For your wive's sake, entertain those thoughts only in private or with all of us here!! But the face that you show her should be one of positivity and hope. She will need that from you.

I hope that you have an oncologist that you trust, who specializes in lung cancer and will provide aggressive treatment for your wife. I wish you both the very best as you continue this battle!

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Every patient needs an advocate who is assertive on the system. You are doing a great job of that with your loved one. By venting your anger here or in appropriate places, you are renewed with strength to fight the fight without going bonkers and being ineffective. I have learned a lot being primary caregiver and advocate for my wife. Keep up the good work. Don

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Just a note about taking action, this is not legal advice, and I truly believe each situation is unique whether or not action should be taken. I want to choke my mom's doc for laughing at her little cough and my insistance on a chest xray, but I know that was not med mal, most people who have a dry cough for 2 weeks don't have LC ;)

Anyway, one thing to keep in mind is statute of limitations--many states require that you must bring a negligence/medical malpractice claim within 1 year of discovering the mistake. 1 year can go by pretty fast :)

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Maryland has a 3 year statute from diagnosis.

I found out when I had enough energy to persue this, 3 years and 3 weeks after diagnosis. :?

BUT it is my understanding also that failure to diagnose cancer

is a deuced difficult suit to win.

Needless to say, I didn't worry about looking back, just kept looking forward.

I think some things are just not meant to be....

\XOXOX

MaryAnn

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A suit may not be what everyone whats to do, but at the very least I think a strongly written letter to the hospital and medical boards and possibly your insurance companies about the mistakes is extremely important.

If no one raises an issue about follow ups not being done, then there will be the same percent stage IV patients that should have been at earlier stages if better quality control was in place.

If doctors continually rely on x-rays then there will be more late stage patients as many people (my mom included) did not have the tumor show up x months earlier on an x-ray. X-rays usually won't find anything until a person is stage II at the earliest, since it takes about a 3cm mass to show up.

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A suit may not be what everyone whats to do, but at the very least I think a strongly written letter to the hospital and medical boards and possibly your insurance companies about the mistakes is extremely important.

If no one raises an issue about follow ups not being done, then there will be the same percent stage IV patients that should have been at earlier stages if better quality control was in place.

If doctors continually rely on x-rays then there will be more late stage patients as many people (my mom included) did not have the tumor show up x months earlier on an x-ray. X-rays usually won't find anything until a person is stage II at the earliest, since it takes about a 3cm mass to show up.

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Well, I'm not going to give you any advice, because sometimes giving no advice is best for the situation. And in your's I just want you to know your welcome to come here and vent all you want. Ask questions, get support, scream holler, what-ever as long as you don't attack anyone here, your in the right place. :) Good Luck and God Bless in your journey!

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Using the energy that anger produces can be very profitable. I've gone off on the VA hospital here in San Diego a couple of different times and, in both cases, got exactly what I wanted out of the deal. But there is a caviat (sp?) that goes along with it. Once you've used the energy to do the things you feel you have to do .... get rid of the anger!!!! My wife is always amazed at how quick I "get over it" when I get mad about something. That's because I've learned, over the years, that if I don't I only hurt myself or those close to me.

I also don't play the "what if" game. I've found I loose that one every time. As far as your loved one goes I doubt very seriously there was much change in her condition between the misdiagnosis in September of 03 to February of 04. As you probably know NSCLC is a slow growing cancer so I suspect, unfortunately, that she was stage IV back in September.

That does not, in any way, mean you should let the doctors who made that mistake "off the hook". What I AM saying is don't let it eat at you. Do what you feel is necessary, but I think, for right now, that energy could be better spent in the fight you and your loved one are now embarked on.

Quality of life vs. Fight with every ounce of energy. THAT is a choice your loved one must make. There ARE options and treatments that have worked for every stage of this disease and the proof of that can be found right here on this board. At the same time there are those of us who have chosen a different road and HAVE concentrated on the quality of life rather than the quantity. There is no "right" or "wrong" answer to this question. It can only be decided by what is in each persons heart.

You said you're dealing with two seperate issues and I agree with you. But I would caution you not to let your anger over the mistakes of the doctors get your priorities mixed up. You have a person who you love who is begining the biggest fight of her life. THAT, it seems to me, is the important part.

Good luck with all that you are facing. I will be saying a couple extra prayers for you and your loved one.

Dean

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Hi Spiritual,I along with the others welcome you here and encourage you to vent.My feelings go hand in hand with Dean Carl's.I also am a patient,&dealing with the VA health system in Pgh.I have had anger spasms over lots of things too however kept it in check and channeled the energy to productive fighting not only for myself but to benefit others who follow me in this war.It is difficult I'm sure as a caregiver to sit back and not retaliate to anything you feel is harmful to your loved one,however please don't do anything without thinking it thru.I hate to mention this but there are medical institutions in this great land that may tend to forget their oaths and not give as good as care as they should on return visits.This could harm a loved one more than help them.I'm sure you will do the right things and you and your loved one are in my prayers.

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I don't have to tell anyone here that lung cancer is a disease of extremes; I certainly have experienced emotions in extremes unknown to me until I walked this journey with my father. Extreme anger: botched diagnosis, lost time. Extreme happiness: he, my mother and I sighted a perfect double rainbow the evening of his first treatment. Extreme bittersweetness: he called me outdoors at midnight to watch a lunar eclipse with him and then drew a picture for his greatgrandson(4yrs.)of a man on the moon waving to his wife on earth. Extremely good days are followed by extremely bad ones and symptomless hours lull one to al-most forget for a moment -until some extreme change/symptom/reaction reminds one of the land mines all around and precipice somewhere up ahead in the fog. My dad lost his voice in less than a week's time and has a dr. completely insensitive to the emotional impact of losing one's primary means of communication quite suddenly. Drs. miss a lot of stuff.

It seemed that you felt you needed to further define and explain your anger in the second post. Don't...your anger is justified and right for the moment. I have found that my anger ebbs and flows (sometimes in extremes) as the ocean tides but that my love for my Dad is the Ocean and all comes into balance in good time. Remember, at the bottom of anger is usually fear. And fear demands courage, strength, and often action from us. It also informs our spiritual selves...by the way, I like your screen name.

PS re diagnosis: My Dad's oncologist said he believes that the rising incidence of young, non-smoking and predominately female adeno. diagnoses are related to hairspray/makeup/personal care products often used and inhaled several times a day??? Sorry for the book...

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Dear Spiritual,

Get this. My husband was having severe headaches, so he went to an ENT. The ENT ordered a CT scan of his sinuses. When he went for the results, the doctor said he had a deviated septum (crooked nose bone) that was probably causing his headaches and wanted to do surgery. He didn't even suggest an MRI of the brain. My husband was not happy. He then got with our family doctor, who ordered the MRI, and voila, we got the diagnosis. I know that originally my husband said, "I ought to sue his *ss", but like some others have said here, once we got the diagnosis, all of our efforts and thoughts have been focused on a cure.

One other thing I might add is that I think a person needs to be very careful how much, how often, and how intense you express anger toward or at the people who are caring for your loved one. We were taught in one of my paralegal classes that many paralegals and young lawyers think they are really hot _____ (you know what). They go over to the courts and get smart aleck with the clerks, bailiffs, etc., and act haughty. It doesn't take the staff in the courts very long to recognize this type, and when they have a rush project that has to be court filed by 4:30, and they get to the door 10 or 15 seconds after they lock it, the staff will turn their backs on you and not let you in. I'm afraid that expressing too much anger at your wive's caregivers could work against you in the long haul. Just please be careful. I know you want her to get the best care available, and the care that she needs.

God bless you,

Peggy

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Count us in on the misdiagnosis fiasco. In Steve's case they didn't even bother to do an x-ray - this after he passed out and fell to the floor from not being able to breathe. To worsen the situation, several weeks later when I tried to contact them to tell him his real diagnosis, no one would get back to me. This was after I repeatedly told them I wasn't interested in suing them, just wanted them to never do this to someone else. Got too busy in the cancer fight and dropped it several months, but eventually wrote a letter to the president of the hospital foundation. Received a call from the head E.R. doc the next day. Hopefully, they have now cleaned up their act and it really helped to release some of my anger. But also feel free to share your anger and frustration here. Just look at the opportunity you gave several of us to get out a bit more of ours in the process.

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  • 2 weeks later...

Was flipping through old subjects, came across yours. First, I hope your Mom is doing well. You are her only advicate, you stick up for her and don't take any crap (power out - reschedule CAT, yeah right)!

My first chemo I reacted to all the meds they gave me, when I saw the Nurse a few days later and explained everything that had happened, she looked at me like I was crazy, said it sounded like an allergic reaction to steriods and said I might want to speak with a shrink. What kind of crap is that?! I pulled up all the side affects of the meds I was taking and every problem I complained about was there! I meet with my new Dr on Tuesday, I am armed and ready, don;t imply that I'm a whimp and need a shrink! I was up and walking within 8hrs of surgery in ICU because this was not gonna get me, I was getting better!!!!

Get mad when necessary, keep an open mind and fight like hell!

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You can count us in too. Niether our primary doctor or pulmonory specialist picked up the fact that my husbands lung was full of fluid. I had been frightened that he had "pneumonia but they reassured me that he didn't! Ha Ha! Makes you wonder doesn't it! Anger, yes, I have enough to go around but I try so hard to forgive and forget as it doesn't help at all if you hold on to it, does it!

Paddy

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Guest spiritual

Speaking only from experience and MY OWN OPINION AND THOUGHTS in dealing with my anger I TAKE ACTION! I am the only caregiver to my beloved partner and I attend to not only make our days quite pleasant I attend to fight for her!

I hope all that have dealt with a "gross neligence" from the medical profession have contacted the medical board in your community/city/state and reported your case! TRUST ME the more they hear from us SOMEONE will hear it. Please let the staff/customer service of your plan AWARE OF THE MISTAKES!!! It helps me with letting go of my anger. You see, I don't have anything to lose! I am getting peace by doing the fight because at the end of the day, when I lay down I can honestly say I was productive!

I have started the paper work on 2 issues regarding my partner. The medical facility denied my appeal in adding alternative medicine to her current chemo treatments through their plan. You think I will stop there, HECK NO...I have filed a "quality customer service complaint" for pain and suffering. I plan to fight until the end. I am waiting on the paper work and information in how to take this to the medical health department :)...funny how that was a week ago and no info has arrived...SOMEONE WILL BE GETTING A CALL TOMORROW MORNING :)

Bottom line: she is not just "another patient" that they can say opps, sorry about dropping the ball on her medical care! THEY PICKED THE WRONG PERSON TO DO THAT ON.

Aside from that issue, She is doing quite well ;) and pray for just another peaceful day to embrace our "quality of time".

We went ahead and set up her "funeral arrangements for the future" and that has brought some relief in getting that business done..However, we don't anticpate using the service for another 10 years :) :) :) GOD WILLING THAT IS THE PLAN ;)

thanks for sharing and please remember I think of all of you and wish you peace and love every moment. STAY STRONG NO MATTER WHAT

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I too understand your anger. My Johnny has been gone for 19 months and I still feel the anger and even more I question his entire diagnosis. Having said that let me agree with everyone else as far as venting here and not in front of her. She has enough to deal with without your anger too.

What I don't understand is why you are still dealing with these doctors. If the missed they diagnosis then didn't even know that they were dealing with lung cancer it soundls like they are not only very inept but dangerously incapable. I suggest that you find someone else and then by all means don't let the issue drop. Keep at them until you run out of people to complain too. Once that happens do as you are doing now. Tell everyone you come in contact with. Word of mouth is very powerful and reaches a lot of people. That in itself is more likely to keep them from harning anyone else.

I must warn you. Do not expect much in response from the state medical boards. What investigations they do are so lame that they often never even check the patients files. In my case they never mentioned Johnny's name. Their entire investigation was just to check and see what proceedures they have not if those proceedures were carried out adequately. When it comes to lung cancer no one wants to hear or accept that a doctor did wrong. They all consider it a death sentence and don't feel like it is worth wasting their time or causing the doctors embarassment. Isn't that a crock?

I hope your loved one will be one of the miracles that we wait for. I hope too that you can get the word out about what happened. If you are afraid that they will take it out on her then TAKE HER SOMEWHERE ELSE. I sure wouldn't trust them now anyway. God Bless you and her. Remember use that anger to do some good. You may not get very far but getting it out of your system can give you enough peace to help both of you.

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Dear Spiritual,

I still remember the letter you wrote me and the kindness you showed to someone you didnt even know.

I have to agree with most that wrote that primarily your partner is #1. There is plenty of time for the medical profession to pay, and I am sure as strong willed as you are .... they will.

I also agree that anger is hardest on the person who is angry and further makes things worse. I, as I believe Snowflake said hope your partner doesnt see or hear your anger as she has enough to do batteling this cancer. The last thing she needs is to watch you all upset and steam coming out of your ears. She needs your support which I am positive you are giving her but does not need the stress all this causes. When people are fighting stress as I often told my Brother they are NOT fighting cancer. Stress is very hard on your body and cancer is a lot harder. She has her own mountain of stress just with her dx never mind fighting a bad dx. Try hard to let go of the anger for right now. Be someone that smiles every time she sees you. Be the sun in her eyes. you are both in my prayers always

God Bless You Both,

Jane

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Jane,

Jane said it well. Anger is normal, but it doesn't really help unless it's directed at the cancer itself. I am glad you are using the anger to try to get the best possible care for your loved one. Just try not to let anger consume your days.

Love

elaine

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