Hi Dr West,
You were a great help to me when I was having 2 nodules in my left lung monitored for almost 3 years….and since then…..your talks on the Bonnie Addario Lung Cancer Living room…have been so very informative!
I will give you a quick background
When it was my last CT scan to check the 2 left lung nodules….One of them showed some increase in size (10mm to 12mm)….more importantly…it showed a difference in shape (speculated)…and was very concerning…the other upper left nodule increased by only 2 mm,as well but no change in shape.
PET scan showed slight uptake in larger one : 2.4…..smaller one : 1.8
They tried a Bronchoscopy (EBUS) failed to reach nodules. VATS by Robotic (LUL) performed in April 2013. Both nodules were adenocarcinoma. only 3 nodes were removed because of beleding issues….they were neg. I was staged at 2b…the larger tumor (1.4 at time of removal) was touching the pleura,not invading.
I had 4 rounds of Cisplatin/Gemzar.
I also had a nodule in middle right lung of app 7 mm. GGO. This has been watched by alternate CT/PET scans every 3 months…..has been stable. BUT my last scan last week showed that it was 10 mm…but still stable…I questioned my Onc about this…he measured it comparing the last 2 scans (PET was 3 months ago…CT was last week)…he said they measured the same….He decided after I was concerned..to get a consult with another radiologist that he thinks is amazing.
This radiologist felt that the nodule has not changed but he felt it did show more density. My Onc is giving me the option to wait 3 months for PET or have it done now…I chose to have it performed now. I am concerned that due to the low uptakes I have had in the past…that this will show a false neg.
Should I be doing anything else….and I was wondering what your view is on this situation….I am concerned because my mutation testing showed only KRAS . EGFR and ALK none detected.
Thank you for all you do!
Thu, 03/13/2014 - 18:58
These decisions are really judgment calls, and those best equipped to do so are your doctors, who have access to all of your scans and records. In this case, they seem to think there is very little if any progression and their recommendation seems to be watchful waiting.
Taking their judgment of indolence as a given, their recommendation is consistent with Dr. West's algorithm for treatment of asymptomatic multifocal BAC (which he notes is similar to his thinking on other slow-growing cancers): http://cancergrace.org/lung/2013/01/20/mf-bac-algorithm/
Thu, 03/13/2014 - 19:09
Hello Mara, Our doctors are clear on their preference to leave nodules alone and instead take a watch and wait approach if you have to squint to see a difference in size. The uptake values you stated are also quite low.
Another piece of the puzzle about what next is to know is the CT on a PET/CT doesn't have as high a resolution so a difference in a couple of mm from a PET/CT and a CT isn't much. I don't think you mentioned what type of treatment you're having.
Dr. West has written about slow growing tumors most of them being BAC but any lung cancer that's as indolent as you're describing could fit into the same treatment scenario. My husband has squamous nsclc which normally moves quite fast but his has acted more like BAC and we will treat it in the same way as BAC as long as it acts so indolent. In a prior post Dr. West stated, " But it may grow so slowly that it causes no symptoms and is no threat to a person’s life for another 5, 10, 15 years, or perhaps until that person is over 90. But you can make that person symptomatic if you remove enough good lung tissue every time they develop a 5-10 mm BAC lesion. That patient may find themself really missing that good lung tissue that was surgically removed as a lobectomy 5 years ago (perhaps their 2nd lobectomy for BAC) if they develop new BAC in the remaining lung" http://cancergrace.org/lung/2006/12/06/the-risk-of-overtreating-bronchi…
I hope this is helpful,
Thu, 03/13/2014 - 20:44
Thank you, Jim and Janine….I am reading your links now….
Fri, 03/14/2014 - 20:06
I really agree that if you're questioning whether anything has changed over a long period of follow up, it's very unlikely that you're going to see any meaningful uptake on a PET/CT. I must confess that I consider it so unlikely that the result will be positive that I question the value on a very expensive test that you couldn't realistically foresee leading to a useful answer.
What you're telling me is that you've demonstrated evidence of multifocal lesions that were not eradicated after surgery or chemotherapy, a cancer that doesn't have an activating mutation. Even if there is biopsy proven cancer, it seems to be changing (perhaps) at a remarkably slow rate, and we'd unfortunately need to expect that other lesions will very likely follow, no matter what you do or don't do with this lesion. However, with this pattern, we would foresee that they will likely follow the same exceptionally slow course of progression over a very, very, very long time. I am very wary that the treatments may well cause more problems than the disease and not change the overall trajectory of the disease in this kind of setting. I suspect that less aggressive monitoring could well be the most helpful approach.
Fri, 03/14/2014 - 21:18
Dr West,As Usual…I am amazed at the quick replies I get when I have a question or a matter that concerns me….and I thank you..Jim and Janine.
I totally understand what you have explained regarding the PET and also the treatment of the small slow growing nodules that I have, and you are correct..my last CT scan showed 2 more 3mm and 5mm).
What I do not understand is why I remember my surgeon …day after surgery stating that it was not BAC…then my last appt with him…he said that if it is BAC…we just need to just watch for substantial growth….
I have an appt with him on Monday I plan on discussing this further with him…..but wouldn't the pathology of the small tumors removed showed a definitive BAC or could I have adeno showing BAC characteristics…
Thank you once again for all your help,expertise and caring.
You are truly one of the finest.
Sat, 03/15/2014 - 08:23
As far as why this wasn't identified as BAC initially but now it is seen as a possibility, I think you answered your own question. If you've read Dr. West's "Basics of BAC" http://cancergrace.org/lung/2010/07/09/basics-of-bac/ you've seen that BAC is not just pure BAC but other forms which can be less obvious.
Sat, 03/15/2014 - 08:31
For what it's worth, I put little value on the semantics of what something is called, caring far more for the actual behavior of the cancer as we watch it over time. Here's something I wrote on this subject several years ago:
I don't care whether something is called bronchioloalveolar carcinoma, adenocarcinoma in situ, or minimally invasive (or even frankly invasive) carcinoma -- if it's growing at a rate that is barely perceptible over many months, it's important to respect that and not over-treat it, recognizing that the treatment may well prove to be worse than the disease. At the same time, having a biopsy-proven BAC is no comfort in the face of a rapidly progressing process (in fact, some BACs are very virulent in their aggressiveness, while others are exceptionally slow-growing, and the key is to look for the difference and treat them differently), like having right of way in a bad car accident.
Sat, 03/15/2014 - 17:52
Ok,I understand….makes sense. Thank you Dr West and Jim for your help!