CSN Login
Members Online: 10

You are here

Slightly scary, but overall a good oncologist visit today

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

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

dixchi's picture
dixchi
Posts: 438
Joined: Jun 2008

Cheryl, I am as always so impressed with your outlook, it is
inspiring....seems I remember someone on here saying that you
can have nodules on your lungs that are not ca....am sending
strong positive vibes your way that the nodules continue to
remain inactive....give Bridget a hug for me.....I have a dog
who thinks she is part bird, she won't leave the sunflower seeds
alone that I put in the bird feeder.....go figure!
Hugs,
Barbara

Monicaemilia's picture
Monicaemilia
Posts: 455
Joined: Nov 2006

Cheryl: You are right, it does sound like a positive report overall. I had 15 nodules removed from both lungs, 9 of them were cancerous. Here's wishing that your lungs remain as lazy as can be!!! Monica

usakat's picture
usakat
Posts: 625
Joined: Jul 2006

Cheryl,

Your attitude and outlook never cease to amaze me - something to truly admire. You are such a trooper!

Bob and I will be out and about today - going to the local flower festival here. It's a beautiful day following a huge storm, so the sun is shining brightly and Spring is in the air - everything is blooming. Spring is such a great time of renewal and hope. So today Bob and I will gaze upon the blooming flowers, think of you, and send you lots of good vibes of renewal, hope and good health!

Keeping you in our hearts...
Katie

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

Cheryl,

Your a tough and insperational person (heck you all are). I really hope once my chemo starts, I can be positive etc like you all are. And my spelling has gone out of the window lol

Hugs
Sonia

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Thanks for the update. Good news!
You have a great gift for sorting through all of the technical stuff and getting down to the nitty gritty. Not easy.

Enjoy the Vancouver sunshine!!

Westend Rob...

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Rob... is this not just too coincidinkel? You signed your post "Westend Rob"... and guess what? I'm "Westend Cheryl" :) In all of North America and across the pond to our members in Britain and the UK, we not only live in the same city, but we live in the same neighbourhood! How coincidinkel is that???

And yes... FINALLY we are having the weather we have been waiting for!! It has gotten me sooo motivated this morning to do those "Saturday morning chores"! The laundry is almost all done, the bed has been stripped and changed while the dog was out with the neighbour for a long walk along the seawall and into Stanley Park... AND I have finally got all the various reports/paperwork together to send into the insurance company for my LTD benefits. Not bad for a Saturday morning, eh??

Thanks for the compliment re: the writing. It's one of those things where I have to convert the technical jargon/babble into plain English so that I can absorb just what the heck I'm going through. I happen to also be lucky to have the BESTEST oncologist (in my opinion) at the BC Cancer Agency :) I see Sharlene Gill... who do you see? I'm sure they are all wonderful or they wouldn't be allowed to stay at BC Cancer Agency... but wouldn't that be even more ironic if we had the same oncologist?? :) Hahaha... and since you are in the West End... if you tell me your GP is Sean Fay at the Burrard Medical building, then we are going to have to compare notes!! LOL!

Hugggggggs,

Cheryl

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Hi Cheryl,

Beautiful Spring Day!!

My oncologist is Dr. Klimo in North Van, liver Surgeon is Dr. Stephen Chung at VGH. I guess I'm not likely to bump into you on one of my appointments.

I'll be looking for you on the seawall.

Be well... Rob; in Van

"We have only begun to imagine the fullness of life.
How could we tire of hope?
So much is in the bud."
Denise Levertov

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

Cheryl, that sounds like great news to me. Slow growing is good, that and stable are good words. Yes, the CT scan is like deli meat, slices. I've gotten copies on CDs in the past of my scans, they make wonderful home movies if you have guests that will not leave.
-p

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Well, I'm glad to hear this news from you, Cheryl. I can imagine it was very scary to see those numbers at first, but it sounds like you have it under control. I love that you don't have to pump your body with more chemo. Just concentrate on making it the healthiest body it can be!

*hugs*
Gail

P.S. And I love that you're still here!

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Hi Cheryl,
Thanks for sharing your update. It is good to hear that the nodules are small and very slow growing. I am so glad you don't have to go back on chemo.
Enjoy the sun and springy weather!
Aloha,
Kathleen

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Cheryl,

You do have overall good news! I had the same thing happen to me once- I thought I knew I had a certain number of lung nodules and then the next scan talked about other nodules that grew smaller- nodules I didn't even know I had at the time! So, now I know than to expect their numbers to be an exact science. I like the way you explained the CT scan "layers" being able to possibly miss some of the smaller nodules- it helped me better to understand how some scans seemed to have missed things. I can definitely understand, though, how finding out you had 11 nodules after RFA surprised and upset you a bit.

You do have a great attitude, though, and that's great that everything's been so slow growing and you've been off the chemo so long! I'm afraid that wouldn't be my case, though. I was off chemo for almost 5 months after my liver surgery and that's then when everything started lighting up "with intense uptake" in such a short time. So, I'm afraid I will need to keep the maintenance program going. I can live with that, though!

I'm very glad for you and love how you describe everything.
You take care and enjoy the rest of your weekend- hope the good weather keeps up for you!

Lisa

kmygil
Posts: 881
Joined: Feb 2007

Good job, Cheryl! I'm happy you will remain treatment-free for now. I'm also impressed with your intern. In my experience they have been either too nervous about the technical aspects to actually interact with me, or they have sort of been hiccupy about explanations. That will come with experience, but you lucked out! You are such a positive voice here, and I admire you for that!

Hugs,
Kirsten

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Sorry for the slow response here. Any day you leave an onc appt with her happy with where you are is a GREAT day! I'm very happy for you and your long term lack of treatment. Enjoy everyday and come and visit us,too. A few extra nodules (particularly if they're not new) are no big deal once you get your head wrapped around it. 7? 11? Heah? Makes no difference in your life or prognosis. Onc is happy so you can be, too! WooHoo!

Kimby

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

I am happy for you.It is really important that they didn't grow because growing is bad

michelle

Subscribe to Comments for "Slightly scary, but overall a good oncologist visit today"