Slightly scary, but overall a good oncologist visit today

Well, today's visit was a very interesting one indeed. First I met with an "oncologist intern" and I was super impressed with him... more so because I have found some oncologist interns really should not be doing their practicum with patients until they've taken a "Patient 101" course. They have the knowledge and are very book smart, but their communication with patients leave a lot lacking. I have had some of them who could barely (and I mean BARELY) speak English. Now that is fine if they are communicating with someone who has the same mother tongue as them... and in some ways, it's great for those patients because English can be a tough language to understand when trying to get information about their illness... but when I can't understand them because THEIR English language is very limited, then Houston, we have a problem! But today, I got to speak to a wonderful intern from the Czech Republic who was absolutely wonderful! We went over my CEA markers (for the past year) and the RFA procedure results and where we go from here. He and I were both on the same wavelength.

The scary bit? We went over the RFA report, which was a detailed report of the CAT scans I had for the follow-up appt. with the interventional radiologist. When I saw him, it was literally minutes after I had had two CAT scans... one without contrast dye and one with (hahaha.. I STILL have the huge bruises on my arms from the IV attempts before IV Therapy finally got a good vein). I have always assumed that I had 7 nodules, of which he ablated 1 (the largest one), leaving me with 6 nodules. So you can imagine my surprise and uneasy feeling when the report indicated 11 small nodules and this is AFTER the RFA.

This intern was very good at explaining what was the most likely scenerio. When a CAT scan is done, it is taking pictures in "layers" or "slices". Every radiologist does CAT scans in their own way but each layer or slice is done in measurements. So if the machine is set so each layer is done every 5mm, if you have a nodule that is 1-4mm, it may be imbedded in the middle of a slice and it is not able to be seen. If the slices are taken every 3mm and you have nodules at the 1-2mm size, they won't necessarily be found unless the layer is taken right at where the nodule is. To even find them, a radiologist must sit and go through slice by slice. Meanwhile, depending on the angle of the CAT scan and whether the patient has held their breath, taken a deep breath vs a shallow breath, this can all affect whether a small nodule will show up on a CAT scan. That is why, if you have more than 1 or 2 nodules, they refer to this as "multiple nodules" and if they are small, consider this as possible "seeding" (there will be more nodules but they can't necessarily be seen).

So, the end result is, I have 11 nodules, with none of them being new (only new to me). They are considered to be extremely small and "indolent" (aka as lazy and extremely slow progression). Because they are so small, there is no way to confirm whether they all are malignant or how many of them are in total. Here is an excerpt out of the radiologist's report:

"There are a total of 11 lesions scattered throughout both lungs. Statistically the majority of these are most likely metastatic although this cannot be confirmed unequivocally since the largest lesion is only 7 to 8 mm in diameter and most of these are too small to be detectable on a PET scan. There appears to have been very minimal progression as compared to the December 2008 exam."

So, what does this mean? The intern explained that this is actually very good news for me because it means right now I do not need any treatment. The fact that I have now gone 17 months without any form of chemotherapy is excellent and the plan is to keep me OFF of chemo unless it is needed. With the nodules being so small, chemo will not have any benefit or affect on them, so there is no reason to pump chemo into my body only to expose it to toxicity for no reason. They are also too small and too scattered for RFA.

Sharlene Gill, my oncologist, then came in and confirmed everything the intern said. A year ago March, when a nodule in my right lung and my right adrenal gland lit up the PET scan, my prognosis was grim. That is when I lost it because I was given the 2 months - 2 years talk... and at that point, I thought with the surgery and the 8 months of chemo and 6 weeks of radiation I had been through, I was finished and cured. So you can imagine the terror and shock when this showed up on the PET and at that point I didn't understand the ramifications until I was told that the prognosis was not good.

A year from that PET has now gone by and yes, I have these very small nodules... but hey, I've been 17 months off chemo and the plan now is for me to have another CAT scan in 4 months. That means I will have been off chemo for 21 months... and I would be thrilled if, whenever you think of it... just focus your thoughts on sending healing energy to my lungs. For all I know, 50% of these nodules are nothing... but we won't know unless they start growing... and I'd just as soon none of them grow

I had a great visit with both the intern and my oncologist and they both are very happy with where we are today and the fact that I am treatment free and still doing well. So I think today was actually a good day

Hugggggs,

Cheryl