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Anger at late diagnosis


bug4461

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I hear what everyone is saying about not wasting energy being angry about delayed diagnosis, BUT....

For the past eight years I have undergone MRI's, CT's( both kinds), sputum tests, x-ray assisted injections for back pain, MULTIPLE treatment for bronchitis and lung infections. I have reported constant productive cough, a growth was detected on my adrenal gland 5 yrs. ago and NOTHING was done to follow up despite me expressing my concerns. My primary DR. treated me as though I was a hypochondriac when my Pulmonologist ordered the sputum test. So YES! I am ANGRY. Now that I have a diagnosis of adenocarcinoma, it has progressed beyond surgery. Why would this have not been discovered at any point over the past 8 yrs. of medical tests? The University of Michigan Hospital conducted immunology tests in 2005, they did not report any cancer findings.Of course one MUST consider the fact that I was on Michigan's disability Medicaid insurance at the time. Now, I get to try to find treatments on Medicare and Mich. Medicaid. Feel like they would prefer I roll over and die than cost the state a penny.

Again I appologize, but I am flaming mad and feel as though out of the 23 doctors and specialists I have seen in the past 8 yrs., only my Pulmonologist cares.

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Hi again bug. I am so glad to see you posting. If I were you I would be extremely angry as well. That number of years does appear to have been wasted in coming up with a proper diagnosis. I would have major difficulties in getting over that. The fact is though as you know, there is not a hill of beans you can do about it and it is wasted energy. The only thing you could do, and this is something I would consider, is giving all those doctors some feedback on your disappointment. That might make you feel better. I know it would for me. Ask to go in and see them or write them a letter. Early on after my diagnosis I decided that I did not need anything negative going on in my head. So anyone from that day on who has dissappointed me, medical people, friends, family, etc. have heard back from me if they have done so. I promised myself I needed to forgive them first and tell them that, but then they definitely heard from me on how they made me feel. Most appreciated the feedback. I have to say though, in the case of your doctors, I would have real trouble with the forgiveness part...

Whatever you do though, you do need to get over it, just like those of us who beat ourselves up for smoking. It is wasted energy that you need to fight this disease.

Being diagnosed late is not great but it is not a sentence. Someone here told me recnetly "Cancer is a word not a sentence". And albeit perhaps at your stage the docs will tell you it is not curable that doesn't mean that you can't live with it for a very very long time. Hey you already apparently have and if you have had cancer all this time then you have already outlived many statistics and might as well keep on going. There is lots that can be done to reverse the tumour growth and get your cancer into maintenance mode. So hang on to that hope and ask lots of questions about your treatment options.

I hope that helps some

Sandra

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Thank you Sandra,

I guess I just needed to hear that my anger is justified; and I think I will contact those folks and let them know how dissapointed I am in how they handeled me.I don't have anything else I can direct my energies toward at this point as I am in a holding pattern until I see the oncologist. I tell it to the dog, but he's not real vocal with his opinions. I want you ALL to know how grateful I am for this place to talk to 'others', I am alone in this and sometimes may just need someone elses opinions.

Sandy (bug4461)

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Well hi again Sandy. Always feel free to vent away here. That is what we are here for. The waiting period is awful...between diagnosis and treatment plan and actually getting started with treatment. I think I waited at least 6 weeks but I did have to wait for a PET scan to assist with radiation planning. But please don't fuss too much about the waiting period either. I hope you get in sooner than I did but in the grander scheme of things a few weeks is probably not a big deal. My first line radiation was very successful. Take good care and please continue to post while you are waiting. PM me anytime. In the meantime please know that many of us here have been through the same gamet of emotions that you are currently experiencing. We get it!!

Sandra

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Hi Sandy-

Just "talked" to you over on the other board.

Please don't feel like you are alone in this - we are all here for you. I have a husband and a son at home and sometimes its amazing how the people on this board "get it" so much better than they do. We have all been through it and no matter how much they would like to, sometimes its hard for them to truly understand. Now, thats just my observation in my particular case.

I would be angry too but as much as you would like, there is not much you can do about the time wasted except maybe consider a second opinion with a doc you might trust more.

I hope your treatment plan comes into place soon so you can begin to kick some cancer butt. Please remember to keep us posted!!

Hugs - Patti B.

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Your anger is most certainly justified. That being said you must concentrate on now and try to use that energy to get the very best treatment. I hate that this happened to you. Prayers

Carol

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Sandy

Of course your anger is justified! I am angry for you, as well. It is just inexcusable that this went so long without being diagnosed.

As Carol said, now is time to focus that anger into fighting this disease. Now is the time to be learning as much as you can about the best way to treat this and then giving it hell!

We weill be here for you, as I said before. Just scream and rant and vent all you need to and know we are going to be here to help you through.

Warmly

Christine

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Well Sandy your singing to the chior with what your saying! So many of us have had MAJOR issues with not being cared for correctly. I went through the same things your descibing on with heart problems. I went through 7 cardiolgists before I found ONE that would listen to me and do something for me. I TOTALLY GET YOUR ANGER ISSUES! You have all the RIGHT to be P I S S E D!!! I damn mad for you!

Our medical profession is BROKEN and it needs to be fixed, and what really urks me, is they are doing it at the expense of people's lives, yours and mine! :twisted::twisted::twisted::twisted::twisted::twisted:

You have no reason what so EVER to apoligize for your feelings here my friend. We hear you and we are sorry you have to go through all this happy HOOHAA! What a crock!

((((((((((((((((((((((((((((((((SANDY))))))))))))))))))))))))))

Now you have to put on your fighting gloves and go show them WHO's BOSS. Thank God for your Pulm Doc. It honestly helps to have one good one on your side. Funny thing, my Pulm Doc was the one on my side too, and he has been for 13 years. I'm a 13 year lung cancer survivor. I'm going to hope and pray you will be a 13 years LC Survivor too! :wink:

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Sandy,

Your anger is so entirely justified. If it helps you fight the cancer, hold it close. If not, maybe you can let it go. I know --easy for me to say.

My cancer was found early, on a routine chest x-ray. But my then dr. is a lyme disease specialist and didn't really seem to care about anything else. She refered me to a surgeon and that was that. No follow-up; no phone call; didn't visit me in the hospital; nothing.

The surgeon refered me to an oncologist and he recommended a new primary care doctor. I still get angry when I think of my first doctor -- so much for my advice to let the anger go, huh?

Some of these docs really should not be licensed to practice!

Sounds like you're a fighter and that should help in the days, months, years to come.

I'm rooting for you,

Linda

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I can understand your frustration, bug. We went through something similar though not nearly as long as you. People kept telling my husband "I do not believe its cancer" and there was a waiting period and in that waiting period the tumors grew. We cannot help but wonder if the cancer spread to his bones in that waiting period. But I try to look at the positive side. That waiting period where we were sure it was not cancer gave us a few more months of "normal life". We had taken a wonderful trip to the Florida Keys and went camping in the Thousand Islands in NY during that waiting period. That would have been taken away had my husband been diagnosed sooner and honestly, the cancer most likely had already spread by then anyway.

Again, I am so sorry about what you are going though.

Christie

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The more I read the more I realize that I have been extremely fortunate. My PCP believes in yearly C x-rays for all of his smoking patients. He actually found two of us the same week, and we ended up going to the same surgeon. The gym where I go has a RN as an owner and put me in touch with the best thoracic surgen around. They found mine when it was still 1B. I will continue to pray that we find an method for early detection.

Take care

Sarah

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