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Just got scan results. F#$%


Karen_L

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Here they are:

IMPRESSION:

1. New right lung pulmonary nodules as described above. Findings concerning for metastatic disease.

2. Stable posttreatment changes of the medial right lower lung. [Yay! Good news!]

3. Decreased peripheral groundglass opacities of the right lung. [Pneumonitis is clearing: Yay! Good news!]

 

I see the oncologist tomorrow and the queen of radiation on Thursday (I think she is a genius and I love her.) 

I am really teary right now. I friggin' hate lung cancer. 
 

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RATS! I don't like hearing this. I'm in Portland too and I'm wondering where you're being treated. I'm with Kaiser and my radiaition oncologist could qualify as the Queen of Radiation, too, so I'm wondering if it's the same person. My lung cancer was 1a and I didn't need treatment beyond surgery. However, I had two prior unrelated cancers and I had radiation for both. My second one was a gynecologic cancer, Stage 3 Grade 3, with a "dismal prognosis" and my radiation onc was part of the team that is responsible for my 10 year NED survival.

Let us know how your Thursday appointment goes.  I wish you all the best.

 

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Hi Bridget, 

Thanks, I'm not thrilled with these developments either. Whaddya going to do? 

NED for 10 years puts you in the miracle category! I appreciate being able to hang out in spaces where miracles dwell. 

I'm at Providence & I've been happy with my care. 

I'll report in....

Thanks.

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I saw the radiologist last Thursday, 12/16. There is a reason I worship this woman. 

She started with, “I talked to Dr. Oncology yesterday. I told her I am not persuaded these nodules are cancer.” Her reasons?

The nodule that was first spotted on the scans in September wasn’t solid; it is now smaller to the point of being invisible.

The new sprouts aren’t near the tumor mothership, but they are in the area that’s been inflamed for months. That poor right lung is just so…messy (her term). While there has been a great deal of inflammation in the lung, you can see that the inflammation is dissipating. The sprouts are in the the mess– were they just invisible because they were hiding behind the  inflammation and now that the inflammation is healing they are visible? Who knows.

She ushered me through the CT scans & many different views of the new spots. They are really tiny. (And, we could see the tumor– it’s like a big scar. Dead! )

I feel fine. My breathing is fine. I’m working out for increasingly longer periods of time and will soon start to increase the intensity. I’m not coughing. Wouldn’t there be some overall indication that something has changed? She said that often there’s a holistic change, sometimes there’s not. But she was interested to hear my observation as just one more piece of data.

She thinks Dr. Oncology’s plan to scan, see what’s up is the right thing, then talk about re-staging. She’s not sure if the nodules will even be big enough to light up with the PET scan, but at least we’ll see if other areas of the body light up. And we’ll get a view of the brain, too.

She thinks the best thing will be to bring the scan results to the tumor board and have lots of sets of eyes on the case in order to come up with consensus on the next steps. (I would love to be a fly on the wall for one of those meetings– I got the impression there can be a lot of heated discussions…?)

So. I have the PET and MRI are on a Monday (1/3), I see Dr. Oncology on a Tuesday (1/4), and the tumor board meets the following Monday (1/10). Dr. Radiology doesn’t always call in to those meetings, but she will try very hard to do it for this meeting. I can call her any time to discuss the findings and plan.

Do you see why I think she is the Queen?

Meanwhile, I welcome the break and I am feeling at peace. 

Thanks for having my back.

Karen

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Karen,

What a whirlwind you're going through!  I'm glad you advocated for yourself and that your doctor is one who listens and is enlisting others to help determine a final decision on diagnosis.  The tumor board should be able to put your mind at ease regarding a final diagnosis.  You're doing good things for yourself so keep up what you are doing in that regard.  It's also good to try and remain serene through all of this.  Diagnosis is such a crazy time and we all understand that it's necessary but difficult.  Keep that strong attitude you have, it is serving you well.  I look forward to more of your updates.

Lou

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