Follow up scans - 1290584

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bobpaul152
Follow up scans - 1290584

Hi, wish I had found this site earlier, but sadly my medical practitioners told me not to look online for details on cancer. After an extensive and complicated workup I was diagnosed with sclc. Nothing showed on CT but some strong suspicions led to bronchial washings being taken, which confirmed sclc. What was strange was that I had no real respiratory symptoms but my doctor was concerned over some other symptoms and blood tests which he later told me pointed him in the search for small cell. Since diagnosis I have been under the care of the oncology team and have been undergoing chemo of cisplatin and etoposide. My questions are

Is it usual to not be able to see the primary on CT?

I have been told that the follow up scans will be CT. But I worry about the value of this other than to show spread rather than effectiveness of treatment, especially since I was essentially NED at diagnosis. Is there any protocol for situations like this.

As I haven't been able to find information on this, I suspect that it is an unusual situation and perhaps the usual care doesn't fit?

I am sorry for such a long first question, I have tried to keep it as short is I can, the whole diagnosis process seemed pretty complicated and I hope I have given you enough details.

Bob P.

JimC
Hi Bob,

Hi Bob,

Welcome to GRACE. I'm sorry to hear of your cancer diagnosis. It is unusual to be unable to see an SCLC primary, but kudos to your medical team for recognizing your symptoms and indications in the blood tests. The good news is that it's likely that your cancer has been discovered before it has spread from the lung.In most cases, lung cancer (both SCLC and NSCLC) isn't diagnosed until significant symptoms have appeared, and by then the cancer tends to be advanced.

As far as the value of CT scans for follow-up, it is true that it can be difficult to judge the efficacy of treatment when there is no visible tumor to measure, and there isn't a simple protocol to follow. On the other hand, SCLC tends to progress quickly, so if subsequent scans continue to be NED, that's a good sign treatment is working.

The other way to judge efficacy of treatment is clinical evaluation of a patient's symptoms. If the symptoms seen by your doctors diminish with treatment, that is also a good sign of therapy success.

Good luck with your chemotherapy. Please let us know if you have further questions, and update us on the results of your treatment.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

bobpaul152
Hi Jim,

Hi Jim,
You have made some great points which helps me appreciate the significance of a clear scan when dealing with a quick growing cancer. The pulmonary team were amazing in persevering to get a diagnosis, so humble too, they said the signs were quite strongly hinting at small cell so they didn't leave a stone unturned.
I hope the oncology team perform just as well and I will be glad to report in from time to time.

Thank you for giving me some good information.

Bob P.

bobpaul152
Hi Jim,

Hi Jim,
I completed my treatment in the summer and did feel much better, suggesting we were on the right path. Recently I have started to experience tiredness and symptoms that I had prior to diagnosis. I did have a CT scan that was clear, but nothing showed on CT at diagnosis. The doctors can't do the bronchial washings this time, but have suggested that I could fund a PET scan if I am concerned. I have read everything and it is hard to see what a PET scan could offer when nothing is showing on CT. I know PETs are not a good idea for follow up in normal circumstances, but I do seem to have exceptional circumstances. I did find a report on line that looked like it was saying that PETs could offer more in certain scenarios
https://www.google.co.uk/url?sa=t&source=web&rct=j&url=http://jnm.snmjou...

I can't find anything to help me make up my mind, do you know of any situations where PET has been more beneficial than CT in identifying lung cancer? It seems such a rare situation that I am in that there is no guidance? The report I found did seem to suggest that a PET scan can find tumors that are not picked up by CT.
Thank you for all the information.

Bob P.

bobpaul152
Hi Jim,

Hi Jim,
I completed my treatment in the summer and did feel much better, suggesting we were on the right path. Recently I have started to experience tiredness and symptoms that I had prior to diagnosis. I did have a CT scan that was clear, but nothing showed on CT at diagnosis. The doctors can't do the bronchial washings this time, but have suggested that I could fund a PET scan if I am concerned. I have read everything and it is hard to see what a PET scan could offer when nothing is showing on CT. I know PETs are not a good idea for follow up in normal circumstances, but I do seem to have exceptional circumstances. I did find a report on line that looked like it was saying that PETs could offer more in certain scenarios
https://www.google.co.uk/url?sa=t&source=web&rct=j&url=http://jnm.snmjou...

I can't find anything to help me make up my mind, do you know of any situations where PET has been more beneficial than CT in identifying lung cancer? It seems such a rare situation that I am in that there is no guidance? The report I found did seem to suggest that a PET scan can find tumors that are not picked up by CT.

Thank you for all the information.

Bob P.

catdander
Hi bobpaul and welcome to

Hi bobpaul and welcome to Grace. I'm really sorry about your diagnosis but as Jim said to catch is so early is almost unheard of.

I had a thought about the scans. As you're thinking is very reasonable. If you have incurable cancer with few treatment options then why bother finding it before it starts causing problems. But there's a but. Today oncologists have worked for 15 plus years at providing quality life and longevity. However that takes catching progression early enough to benefit from treatment. If you're willing to forgo "what you don't know won't hurt you" (a very useful tool) scanning is the way to go.

What I really wanted to hypothesize about is this. To cure sclc the most important step is to eradicate the main tumor. There's where the cancer cells have set up shop and there's where you need to target with either radiation or surgical resection. Added to that is chemo to add to the possibility of cure by killing rogue cancer cells. With that said, you may have a spot where the cancer cells are multiplying but it isn't large enough yet to see with even the most sophisticated technology. CT scanning would pick that up and have it resected if that time comes. Otherwise after treatment ends scanning will become less frequent over time.

I hope that made some sense but mostly I hope you remain NED!
All best,
Janine

bobpaul152
Hi Janine,

Hi Janine,

Thanks for adding to this. I think what confuses me is the study that I linked to which seems to suggest that PET picked up many tumors that CT missed. It seemed counter intuitive as I thought you would need a mass to light up and that CT was better than PET for finding small anomalies. So how can something light up if there is no associated mass to be seen?
As my situation does not appear to be common or typical, I might be best thinking outside the norm. Wherever it is, it must be very small and from what I have read, has the potential to get big in a short space of time.

Thank you for sharing your thoughts, it has been helpful to help me consider the pros and cons.

Bob P.