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Old 08-05-2004, 04:18 PM   #1
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delady HB User
Question not sure what to do...please help

I am new to this, so please bare with me. About 4 weeks ago I fell and broke a rib. I went to my local Er and they took a chest x-ray and a cat scan that showed a spot on my lung and mild emphysema My family dr. sent me to a pulmonary dr. who then ordered a PET scan, pulmontary tests, and blood work. The dr. said she wanted to treat me aggressively because she didn't like the looks of the spot on the ct scan. After 2 weeks of testing and being so worried, I go back to her today and she now says she wants to wait another 3 months to do anyother CT scan to see if there are any changes in the spot. (The PET scan didn't show cancer) If so, I would go straight into surgery. I am 49 yrs. young and I have smoked since I was 13.
My husband thinks I should get a second opinion because of what she said in not liking the looks of the spot at my first visit and then now it's no big deal to her. Does anyone know how reliable the PET scan is? I know it is fairly new and nothing is 100% but I sure would like to have some assurance...like maybe 75% chance that I don't have lung cancer. (Is that asking to high for %'s?) I'm just as worried, if not more, now than I was at my first visit.

Thank you for any help,

Delady

Last edited by delady; 08-05-2004 at 04:19 PM.

 
Old 08-05-2004, 07:29 PM   #2
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Kitchener HB User
Re: not sure what to do...please help

Yes, definitely get a second opinion, it never hurts to do so. Pet scans are good from what i know but nothing is 100%.
Did they do a sputem test or biopsy ?
Regardless, I hope you have at least quite smoking ?

 
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Old 08-05-2004, 07:32 PM   #3
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Re: not sure what to do...please help

Delady- I am by no means saying that it sounds like you have lung cancer But I do know, in early stages, it can be missed. Please do yourself (and everyone that loves you) a favor, get a second opinion ASAP. It is better to be safe than sorry. Trust me when I tell you, if you can catch it early, you want to.

Renee

 
Old 08-06-2004, 12:25 PM   #4
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jogordon HB User
Exclamation Seek 2nd opinion as fast as you can ...

Hi delady,
I'm sorry to hear about your possible lesion and your broken rib, but thank God you did break your rib!

My mom had a routine lung x-ray in 5/2001 and they saw a ~2.0 cm lesion. They saw it again in 8/2001 and said it was in a spot too hard to get a biopsy. Eventaully they did a biopsy in ~3/2002 and it was determined to be cancer. The *******s did not do surgery to remove the cancer until August 2002!!! They did a lobectomy and appeared to have removed all the cancer.

She underwent raditation and chemo to make sure the cancer was all gone. She was making an extraordinary recovery. Despite her surgery, she complained little of the pain and never took any of the vicodin they prescribed her. She was doing remarkably well and even went on a cruise in September/October after the surgery.

After she came back from the cruise, she went back to work. Although she was a little weak, she didn't complain, and worked (as a bar manager) 10-12 hour days a few days a week. A couple of weeks into resuming work, she began getting headaches. Actually, the headache never went away. She saw the doctor and was prescribed ibuprofen and the did a cat scan of the brain.

Well, the cancer had metastacized to her brain and there were 3 lesions visible. This was March of '03. She did radiation for 20 days.

During the time of radiation, we took her to Cedars-Sinai in L.A. because Dr. Keith Black is reknowned for his work on brain tumors. We paid out of pocked for her care there with Dr. Yu and an MRI for mapping the brain and the tumors. We were going to do the gamma knife (pin-point) radiation on her tumors. Dr. Black said the tumors may not be curable or operable, but they were controllable.

Well, we never got that far because mom ended up with huge blood clots in her lungs (possibly due to the surgery). She gradually got weaker and weaker due to lack of oxygen. We went to emergency on June 20 due to swelling in her legs and they ran a pile of test and found the clots. At that point her situation was dire.

We took mom home to hospice care that night. (The hospice people were always very nice, and we would recommend hospice for those who require it!) Mom was great til Thursday the 26th, when she wasn't really able to take her normal daily meds (i.e. vitamins, hormones). She drank very little from then on and ate even less.

On Sunday the 29th about noon, I told her I had to go to my grandbaby's 1st birthday party and that I would be back as soon as I could. She was pretty much non-responsive at that point and slept mostly. I came back later around 3pm and some others of the family were there. Every time I passed by her bed (in the living room) I would touch her or kiss her and sit at her side and hold her hand.

I could tell she was much more relaxed, and that the morphine was doing what it should (although she was not in pain, they said the morphine would help her relax and breathe better). I spoke with my brother on the phone and told him she was more relaxed. Little did I kknow it was nearly the end, or I would have told my other 2 brothers to come right away.

I passed by mom and she was crying (with what little fluids were left in her body because she hadn't drank in 2 days). I got a wash cloth and told pop to come sit by her and tell her everything would be ok. I wiped mom's tears away and kissed her. The sadest part was that she KNEW she was going and she didn't want to die. On the other hand, she would not go for us taking care of her, and she chose her own time, I believe.

Well, most of us were there (4 out of 6 kids) and Pop was there, and I called them to her side and I said it's time. We all kissed her and talked to her and said goodbye.

My mom smoked since she was ~19 and had quit for several months for a few times. Quitting came easy for her because she was very strong-willed. I'm just sorry she didn't quit for good,until the end.

Sorry this is so long - just make sure if you have an HMO or wahtever kind of health insurance - YOU need to keep on top of them. I learned most everything I learned here online and through pamphlets from the American Brain Tumor Association. You can find info at your oncologist's office too.

Although my mom was doing chemo, she still ended up with brain tumors because the medicine in chemo does not penetrate the "blood-brain barrier." And the brain is one of the most likely places for initial lung cancer to spread to.

There is a lot of information out there, you just have to go find it. do searches on the symptoms, different medications that will help, drug interactions, etc. And don't let the doctors put you off. you need to get everything taken care of as early on as possible! My mom was only 63 and I feel she would still be here today if they hadnt watied so long to do certain things. They *****footed around and delayed nearly everything.

I had a customer come in who I hadn't seen ina while. He had just gotten out of the hospital from lung surgery. He said that from the time he initially coughed up bloood to THAT DAY, was TWO MONTHS!!! Not a year and a half, like my mom was made to wait for surgery. He said he insisted on appointments being fast, etc. If my mom had had surgery 2 months after they first saw something, she still be here. I know every situation is different, but what I'm trying to say is that YOURS MAY BE DIFFERENT TOO!! Please get it checked ASAP, get a second opinion, and keep on top of them and insist that they squeeze you in somewhere!!!

Of course, if my mom was still here for me to hug, I might not be here on the boards telling you this, and maybe you'd let it go and trust that the doctors know what they're doing. did you know that doctors kill about 80,000-100,000 people a year due to professional negligence? Please don't let one of them be you.

Please let me know how things are going. My prayers are with you and your family.

 
Old 08-07-2004, 08:19 AM   #5
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delady HB User
Re: not sure what to do...please help

Quote:
Originally Posted by Kitchener
Yes, definitely get a second opinion, it never hurts to do so. Pet scans are good from what i know but nothing is 100%.
Did they do a sputem test or biopsy ?
Regardless, I hope you have at least quite smoking ?
Thank you for your response. I have almost quit smoking. I went from 2 1/2 packs a day to 4 single ones a day. I know it's not how many you smoke but how long you've smoked so I have to give up the 4 ASAP. I never thought, as I'm sure so many others do, that it would be this difficult. No, I haven't had a sputem test or a biopsy. On my first visit to the pulmonary dr., she said that she wanted a biopsy but changed her mind after looking at my CT Scan because she kept telling me she didn't like the way the spot looked and that it has something growing off of it. At that point she said that after all the test I had done, I would be going into surgery to have to spot removed no matter what. BUT when I returned for my second check-up and after all test results were in (PET Scan, blood work, and pulmonary tests) she said that the PET didn't show signs of cancer so now she wants to wait 3 months and redo a CT scan to see if there are any changes. She said that for right now she is going to assume that the spot is scare tissue because I swallowed a hat pin that had to be removed from the same lung 21 years ago and I had treated pneumonia 3 years ago. At this stage, I am waiting for a return call from my Dr. because I have some questions and to get copies of my CT and PET Scan results for a second opinion at Johns Hopkins Hospital. You are so right about nothing being 100%. Thanks again.

 
Old 08-07-2004, 08:24 AM   #6
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delady HB User
Re: not sure what to do...please help

Quote:
Originally Posted by renee_ky
Delady- I am by no means saying that it sounds like you have lung cancer But I do know, in early stages, it can be missed. Please do yourself (and everyone that loves you) a favor, get a second opinion ASAP. It is better to be safe than sorry. Trust me when I tell you, if you can catch it early, you want to.

Renee
Renee,

Thank for you for your response. I have placed a call to Johns Hopkins Hospital in Baltimore, Md. to set up an appointment for a second opinion.

 
Old 08-07-2004, 02:33 PM   #7
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renee_ky HB Userrenee_ky HB User
Re: not sure what to do...please help

Thank you for letting me know that you have made an appointment for another opinion. I have been thinking about you, and hoping that you did that.

My husband was treated for pneuomonia for several months before they determined he had lung cancer. Unfortunately, it took a broken hip and an orthopedic surgeon to realize he had cancer, but it was too late. My husband is terminally ill, because his cancer was not caught at an early stage. By time his was found it had already spread from his lung to hip, liver, spine, brain and lymph nodes. As of now, the treatments are for "comfort/qualty" only. There is not a whole lot of comfort or quality for him, but apparently the best they can offer.

Let me know how it goes, praying it is nothing!!

Renee

 
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