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Old 10-07-2004, 07:28 AM   #1
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starlet32079 HB User
Very upset...what to do?

My grandmother is 70 years old and she helped my mother take care of me growing up. When I was 18 I moved in with her after a stomach surgery to take care of her. I lived w/her for 5 years. Even after I moved out I lived in the same apartment building right across the hall until just recently. We have always been close.
I don't know if I am over reacting or not. About a 2 years ago my grandma started getting weak, fatigued, and started falling alot. She ended up having to have surgery on her back twice. She was put in a nursing home for a few weeks to recover. When she had been home for a while it became very obvious that something was not right. She has become so frail, and lost alot of weight, she cannot stand up straight because it hurts, oh...the list goes on. Well out of the blue her doctor asked for her to have a lung CT. So she had it done. They found several nodules in/on her lungs. The doctor wanted to weight for 6 months before repeating the CT scan. I find that totaly uneceptable. She also has almost every single symptom of Tuberculosis. When we asked if he could test her , he said that it was very uncommon and he wasn't concerned about it.
I am so upset about this. that I don't know where to start to get help or who to talk to. Does anyone have any suggestions about how to deal with doctors like this. Any tests that might me helpful? I searched the internet for "Lung Nodules" and this is what came back...
-lung cancer
-Tuberculosis
-lymphoma
-metastases
-bronchogenic carcenoma
-histoplasmosis
-rhumatoid nodules
They have alot of the same symptoms, and I don't understand why her doctor will not test for them while we are waiting for 6 months to see in the nodules spread. thanks for listening and any suggestions would be great.

 
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Old 10-07-2004, 07:38 AM   #2
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Re: Very upset...what to do?

Starlet,

Did they tell you how big the nodules are, usually from what I have been told and read they will not biaopsy or cannot biaopsy anything till it is 1-2 cm. There are several of us on this board going through the same thing that you have described about your grandma.

Chazzzzzz

 
Old 10-07-2004, 08:04 AM   #3
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Re: Very upset...what to do?

why do they have to wait so long? At the rate she is deteriorating she may not be here by the time they can do anything.

 
Old 10-07-2004, 08:17 AM   #4
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txchaz HB User
Re: Very upset...what to do?

They tell me cancer grows slow, they will compare the xray or cat scan with the one they do in 6 months, well I am on a three month regiment. After two years of nothing growing they deem it as benign. Everytime they take a cat scan of me they find a few more, its driving me crazy.

CHAZZZZZZZZZ

 
Old 10-07-2004, 08:21 AM   #5
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SHAYSER HB User
Re: Very upset...what to do?

starlet, txchaz is right they wait because they don't know it could be anything right now, a cold, scar tissue, fungus the fact is they just don't know, i know what you are going through trust me i am 26 and they found a nodule on my lung when they told me to go back in 3 months i started crying, but thats the way dr's work it is a sit and wait game to see what happens

 
Old 10-07-2004, 09:26 AM   #6
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mwessell HB User
Re: Very upset...what to do?

Hi,

I agree with you...change doctors...6 months is too long to wait...3 is more acceptable. And if she wants a TB test, she should get one. It is not that uncommon. What is the harm in doing a test for an anxious patient? None.

Just because he is a doctor, doesn't mean he is good. Your grandmother has a right to disagree with him, and go see someone else. Not so much to find one that agrees with her, bit that will justify their actions (waiting 6 months for a CT) and put your mind at ease...and treat her, not the symptoms. Bedside manner is SO important!

I went through the nodule thing, and when doctor said I would have to wait 6 months for another CT, I said NO WAY...I want one now! And I got one...6 weeks after the first. I PAY FOR THE HEALTH INSURANCE...and the insurance had no problem picking up the tab for the CT scan, and a PET scan and several other tests.

Patients need to take control of their care. BE AGGRESSIVE. It could be nothing...but you need to know.

 
Old 10-07-2004, 10:01 AM   #7
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Re: Very upset...what to do?

how was the outcome with the nodule, how many? how big? and what happened? just wondering i am waiting for the 2nd ct scan scheduled for nov. but have recently been sick and i am very scared

 
Old 10-07-2004, 10:15 AM   #8
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mwessell HB User
Re: Very upset...what to do?

I had 1 nodule...1cm...had a small "tail" on it that made the doctors think it was cancer. No symptoms...it was found while looking for something else.

No growth 6 weeks later...still unsure what it was although PET scan and Pulmonary Function tests were negative. I was told to wait 6 months and have another CT. I opted for 3 months, which the doctor said he would do. I could not wait even that long and had surgery to remove it...called a "wedge resection". The take out the nodule along with a wedge of the lung surrounding it.

The biopsy it and within 10 minutes know if it is cancer or not. If it was cancer, they would have proceeded and took out the entire top lobe of the right lung. Since it was benign, the surgery was done.

You need to chill out!!!!!! I know it is scary, but the calmer you are, the better you feel!!!!!

 
Old 10-07-2004, 10:24 AM   #9
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Re: Very upset...what to do?

i know and i appreciate you sharing your story i just have been sick ever since whether it's allergy's the cold or flu so this does not help at all cause in the back of my mind i always think it is spreading (they detected 1 nodule) 4mm by 7mm which they say is tiny, my biggest fear is that it is cancer and it will spread out of control in 3 months

 
Old 10-07-2004, 09:29 PM   #10
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starlet32079 HB User
Re: Very upset...what to do?

Thanks you guys...hearing that it is common to have to wait helps me alot. I called her doctor today and told him I wanted her to have a repeat CT scan in 3 months and finally agreed. Now in the mean time I am trying to get some other tests done. Like the TB test and a sputum test.
I am really afraid of losing her. I lost my dad to cancer when I was almost 13 (I am 25 now), lost another grandma to cancer when I was 15. Shortly after that my Grandpa died from heart problems, my mom has Multiple Sclerosis and is a diabetic. I feel so overwhelmed with worry.
One more question...what is a calcified and non-calcified nodule. Is one worse than the other?
Thanks everyone-

 
Old 10-07-2004, 10:43 PM   #11
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Re: Very upset...what to do?

I am sorry the Dr. didnt give you any information as to the why's etc. sometimes they can be so short with us, not seeming aware how they contibute to our anxiety about all the unknowns...I would seek another opinion, and also demand more tests sooner... Also, IF he says no..Make him document that you asked for these tests and WHY he refused them (down the road this may be of value) get copies of everything if possible to take with you to another doctor (we even got copies of all xrays/ct's/pets) So the next doctor has a running start..
I understand your fear and anxiety of possibly loosing another family member.
I have felt that 'panic' mainly when I felt hopeless and things seem so out of my control...I know this is a trying time, but youll be more help to her once you can connect with someone to give you some solid answers and solutions. You have many options......
I would talk with grandma and see what role she would like you to play in her health issues. If she wants you involved, you can get releases signed, or power of attorney drawn up, then you will be able to persue many things and the medical proffession will have to give you info, plus copies of things etc.
Till then can you contact the county Nursing Department concerning her weight loss, nutrional issues? She should qualify for meals on wheels or at least a nurse to visit and check on her.
I know all the xtra running will tire her, she will need good nutrition to enable her to fight what ever is going on.
Sometimes we have to challenge those we regaurd as more knowledgeable than ourselves, and go by our gut instinct! Afterall the people they are making life descions about are part of us.
Your grandma is fortnuate to have you to see her needs and act on them.
Ill be praying for you both. Mattie

Last edited by Lady_J_1_01; 10-07-2004 at 10:45 PM.

 
Old 10-08-2004, 08:37 PM   #12
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Re: Very upset...what to do?

Well today my grandma was rushed to the emergency room and we found out she had a stroke. She cannot move her right side of her body. The doctor at the hospital said she will be there for a while and that her family doctor is WAY overmedicating her with narcotics for pain. He also said that we need to find out about the nodules in her lungs right away. He will be doing a MRI of her whole body and also will be doing a bronchoscopy to biopsy the nodules. He said there was no reason to wait so long.
Thank you so much for your prayers. I am praying too.

 
Old 10-09-2004, 07:00 AM   #13
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mwessell HB User
Re: Very upset...what to do?

I hope all turns out well. So sorry she had a stroke, but maybe it will eventually lead your grandmother into the hands of a better doctor. Sounds like the other one was a knucklehead.

I hope she makes a full recovery!

Mary Ellen

 
Old 10-13-2004, 09:25 PM   #14
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Re: Very upset...what to do?

Star, Im sorry to hear she had a stoke on top of all the other things going on,I have to agree with Mary Ellen maybe it is a blessing.... now it seems someone will 'get on this' and get her the type of care she needs! Hang in their, and take good care of yourself... "buckle up" ya never know what lies ahead! Thank God your in her life! She is blessed. Hugzz Mattie

 
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