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Lori51

Results from PET Not too Reassuring

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Hello Everyone,

Well Friday was my appointment with the Surgeon to go over my PET scan. He drew me a picture that showed the tumor in my left lung (seems to be in the upper middle portion) and one on the lymph node fairly close to the lung. Also there is a spot in the liver, one on the adrenal gland and one on the pelvic bone. I've had a previous liver biopsy because of a Hep C diagnosis from a long time ago. He said the spot MIGHT be from that but doubts it. Next step is a liver biopsy. Doc said the spot is between a rib and fairly accessible, hence the easiest place for biospy. That will verify met disease, staging and next steps for treatment. The hospital called today to set up the biopsy. It's not until the 10th of May. I will go insane by then. Is the appointment so far out because I'm hopeless and going to die so it doesn't matter????? Don't they realize I'm a walking time bomb????? I am on such an emotional roller coaster....hopeful one moment, in total despair another and mostly crying a lot. The insane thing is how good I feel....aside from the fact that I'm probably dying.....how could this be happening? Should I push to move up the biopsy.....should I call my Doctor and ask why so long? Please forgive this post; I'm sure I'll get better.....please tell me I will......with the emotions, that is. In my quest for knowledge and the reading I've done, I've seem stage 1 changed to stage 4, I've seen stage 4 changed to stage 1. It seems anything goes and anything is possible with this disease.....I'm so confused and scared. Please advise. I'm praying so much for myself and everyone.

Lori

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Lori,

I would definitely call the doctor and see if they can move the date up. Ten days is a long time to wait. Your emotions will get better, but it takes time. One thing at a time, get the biopsy down as soon as possible.

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Oh Lori,

You definitely WILL do better as you get moving along the journey. This beginning is always the pits...........has been for about all of us here. And it always seems we are waiting for one thing or another. I don't know how to help you with that..............other than hopefully knowing we all feel exactly the same way will allow you to feel not so all alone.

You could call your doc and ask to have your date moved. Personally I waited much longer than that to get my show on the road. The 10th is next Wednesday. I know it may as well be 6 months away. Call and see what can be done. In the meantime, just step back a moment and take a few deep breaths. Come here and allow us to support you. Know that you are not in this alone. We have ALL been right where you are at this moment. We will help you.

Kasey

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Lori:

10 days is probably not too long to wait, but if it were me, I would push for an earlier date too. The wait would bug me.

You should look into cyberknife surgery as a way to control mets at some point along the way. If the tumor in your lung is not too big, cyberknife could get rid of it and the other mets too. It would not be a cure, but it could be an effective way to control the disease.

check it out:

http://www.cyberknifesupport.org/forum/default.aspx?c=4

Having a liver biopsy is a good idea. Then you would know for sure the extent of the metastasis.

One thing I did to help me stay focused during my wait for various surgerys and treatments was to research and learn as much as I could about my disease and its treatment. As you can imagine, It was an intensely absorbing learning experience.

Don M

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Hi Lori,

May 10th does seem like a long time for you now, but in reality of medical care, it isn't I guess. I would be wild with anxiety myself, and when I think back to my diagnosis time, I had my PET and was hoping for a call with results on a Friday, but it turned out that the call didn't come till Monday afternoon. Talk about a horrible three days.

The reality is, though, that you do have to do some waiting with all this, and I found that anti-anxiety medication (Xanax) at least let me sleep, and when I wasn't awake all night with worry, I found it a little easier to tolerate the waiting part.

We all know the anxiety of this, and I feel for you at this time, but highly recommend calling your PCP for something to help.

Best of luck to you,

Cindy

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Hi Lori,

I can't imagine what you are feeling right now, but I have been a caregiver and witnessed many people who started this journey, in your shoes, looking for answers.

I think that you will feel more secure once you know what your dx./stage is, and have a solid game plan in place.

Don't focus on statistics or the "what ifs" and just try to get thru the day a moment at a time.

Chances are, your dr. isn't worried about immediate progression of the cancer, or he would have scheduled things more quickly. (My dad was a SCLC diagnosis (doubling rate is something like 30 days) , so they moved like lightening)

If I were you, I would call and request an earlier date simply because of the anxiety the waiting is having on you and the toll it is taking on you emotionally.

Keep posting and venting and talking. It helps to have support, a support group, friends, and family as you begin this journey.

We will be here for you too.

Keeping you in my thoughts and prayers. Keep us posted.

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Hi Lori,

Is it the hospital's schedule or your surgeon's schedule that is the reason for the delay? If it's the hospital, perhaps your surgeon has privileges at another hospital that might fit you in sooner?

I'm praying for nothing but good news for you when the biopsy results come in.

Trish

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Lori,

Most of us understand the stress and anxiety of having to wait for our tests, it can be excruciating at times.

When our doctors schedule our appointments what is "only" a week to them is like Kasey said, six months to us.

Let your doctor know how high your anxiety level is getting, it's my understanding if your doctor happens to work at the facility you will have your tests at, he can speed up both the test and the length of time you have to wait for the results but a doctor ordering from his office to another facility waits longer. That's just been my experience, my doctor does not work in the hospital where my tests are done so I'm a waiter at test time.

I wish you the best and hope you can get in there earlier.

Kathy

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