onthemark
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I've got two stable ground glass small lesions (one 5 mm and another faint one 5x9mm) in my right lung and have been reading about other people's experiences with them on the web.
On a different forum it is often stated that these lesions rarely grow large, but I thought it was the case that they can grow large but are not called AIS when they grow to larger than 3 cm so it is only a question of definition rather than related to the natural life history of these lesions.
Can a sub-centimeter ground glass lesion that is stable for over a year grow large or does it usually stay small?
Forums
Reply # - March 27, 2018, 06:07 AM
Hi onthemark,
Hi onthemark,
Such lesions rarely grow large, and the longer you follow a small ground glass lesion without growth or with only very slight growth, the less likely that it will ever grow significantly. You may find the comments by Dr. West and Dr. Pennell in this discussion informative. Despite the age of the discussion, the principles remain the same.
JimC
Forum moderator
Reply # - March 27, 2018, 07:53 AM
Hi Jim,
Hi Jim,
Thanks for your reply and for linking the thread. I read through it and I see how it discusses growth rates and has a lot of information about observing their growth and the importance of not over treating indolent lesions, but I don't see any discussion of a maximum size or a limit on how big these lesions get if you wait long enough.
If the volume doubling time were long, let's say 2 years, then the linear size grows by the cube root of 2 = 1.26 in 2 years.
In 10 years, the linear size grows by (1.26)^5 = 3.18
and in 20 years it would be the square of that which is 10.09.
So even a sub cm lesion would become huge if you waited long enough, unless there is some absolute limit on the growth of these lesions.
Of course this is also assuming the growth was uniformly exponential rather than episodic and that there was no intervention and also that the lesion didn't undergo a transformation to an invasive cancer with a higher growth rate.
I'm 54 and have been previously operated (left upper lingula preserving lobectomy) and had chemo for lung cancer. My life expectancy without lung cancer is sufficiently long that slow growth lesions might impact my health. My next scan is in July and then it will have been 2.5 years since the original detection of these lesions with my pre-op ct. Up to now they haven't grown but it will have been a year since my last scan. I don't think any one likes the idea that there is a cancer growing in them even if it is slow for lung cancer. It would be comforting to think there's an absolute limit on their size.
Reply # - March 27, 2018, 10:53 AM
If the nodules don't and
If the nodules don't and haven't grown then they probably aren't cancer or even AIS. They may just be benign nodules that never grow nor cause symptoms, this is very common. If it is cancer or AIS then it can and probably will grow. Your right about the growth rate not following a consistent rate of growth and there is no limit to how large a cancer can get. AIS is a newer name for BAC which is usually slow growing (hence in situ) on the CT BAC looks cloudy instead of the solid white of typical lung cancer. It can grow throughout the lungs but doesn't usually metastasize outside the lungs. BAC can change behavior and become more like a typical lung cancer where the rate of growth usually changes.
If these nodules were never biopsied and haven't changed in over 2 years then it's probably not cancer. I hope it's not.
All best,
Janine
Reply # - March 27, 2018, 07:40 PM
We always hesitate to say
We always hesitate to say that cancer can't change its growth rate, because there are always some cases in which it does. But the reason I cited the discussion is to show that as the length of time without significant growth increases, the risk of the nodule growing decreases and the scanning interval lengthens. If you see a millimeter of growth over a one- or two-year period, you can't assume that rate will continue. If slight growth is seen, you might shorten the scanning interval but not rush to take action such as surgery. It's the trend over time that will indicate whether you have a growing cancer and whether it requires an intervention.
As Janine said, we hope that never becomes necessary for you.
JimC
Forum moderator
Reply # - March 28, 2018, 01:49 PM
Thanks Janine and Jim for
Thanks Janine and Jim for your responses and well wishes.
I've apparently had these 2 ggo's since the very first scan, prior to surgery, but they were first mentioned in the radiology reports as "subtle" ggo's after I finished adjuvant chemotherapy. That was a big surprise to me at the time.
I was having three month scans for awhile and the lesions were reported as stable. In my most recent scan there was no reference at all to the ggo's and I told my oncologists that i was unhappy about getting all that radiation (these were not low dose CT's) and getting shoddy reports. I asked to have a new report but that didn't go anywhere.
After that I decided to wait a year+ till my next scan, more out of frustration than anything. Unfortunately in Canada we can't decided which hospital we go to, or who reads our scans, or who our specialists doctors are. That's one of the downsides of socialized medicine. The upside is not having to deal with insurance companies. Anyway the ggo lesions in my right lung were noted as stable from Nov 2015 to Feb 2017, while the last scan I had 3 months later didn't mention them at all. My next scan is early July 2018.
I realize I've had it a lot easier than many other people with lung cancer. My impression is that the vast majority of persistent ggo's over 5 mm are thought to be either pre-cancerous or outright cancer, but I don't have any knowledge of data to back that up. I am hoping to have the very slow growing kind.
Reply # - March 30, 2018, 01:35 PM
Hi all,
Hi all,
When I first had a CT scan, I had a 3 cm pulmonary nodule. It was unchanged during two-year follow-up. My doctor never took a biopsy, because he thought it was a benign scar. The shape of the nodule was spiculated, it was attached to pleura and had air bronchiograms. According to the CT scan report adenocarcinoma was possible. However, my doctor said it was not necessary to have any more follow-up after two years.
Five years later I was diagnosed with stage IV BAC. The primary tumor is the one that was thought to be only a benign scar. My lung cancer has been extremely slow growing during the nine years after diagnosis. I have not had any treatment for 1,5 years, but even now the growth is one or two millimeters per year. However, cancer is always growing exponentially, so at the moment there are thousands of nodules slowly filling my lungs.
I just wanted to tell you that sometimes a nodule which seems to be unchanged for two years, can be malign. I wonder if it could have been AIS when first detected?
Paulina
Reply # - March 30, 2018, 05:05 PM
Thank you for sharing Paulina
Thank you for sharing Paulina. I am surprised to find out that a persistent spiculated mass would not have prompted a biopsy and can understand your misgivings over how that was treated.
I'm glad to read you have responded to treatment over the years with a slow growing form of BAC. I had the impression sometimes that slow growing BAC doesn't respond to chemotherapy but your story seems to indicate it does, which is also reassuring. I don't think most people would believe that someone could live with a form of lung cancer that wasn't resected for 17 years.
Reply # - March 31, 2018, 07:44 AM
Hi onthemark,
Hi onthemark,
Your last statement reflects the point Dr. West makes repeatedly, that slow growing BAC can persist for many years without ever becoming life threatening or even requiring treatment. We're hoping that's exactly what you're experiencing.
JimC
Forum moderator
Reply # - March 31, 2018, 08:41 AM
Hi Jim,
Hi Jim,
Yes that is what I have understood about Dr. West's description. I didn't know how to put a time scale on what 'slow growing' might mean though. Often these discussions are couched in how to treat or not treat an elderly person who might have 5 or 10 years of life left outside of the cancer rather than a middle aged person with potentially many decades left. So it was comforting to see Paulina's post in that sense. I am hoping I don't have any cancer at all but if those lesions are cancer I can hope for the very slow growing kind.
Reply # - April 1, 2018, 07:00 AM
I think a 3 cm spiculated
I think a 3 cm spiculated lesion would require a biopsy. Did it light up on the PET? I had two small adeno lesions, 1.2 and 2.3 cm, one each in upper and lower right lobes. And each one was biopsied. When you're concerned, always get a second opinion. Take care Judy
Reply # - April 1, 2018, 12:07 PM
Thank you all for your kind
Thank you all for your kind words!
Judy, it is great that your lesions were biopsied and they are gone now. Onthemark, I hope your next scan will be stable and you will feel safe with the nodules. It is important to have follow-up anyway. I never saw the CT scan report and I trusted the doctor who said it was only a scar. I have not had a PET scan, only CTs.
It was never admitted that I could have been diagnosed in 2001 or 2003. I think that most doctors don't know about slow growing cancer. It was not until 2014 that my cancer was biopsied with a needle. The proliferation index MIB-1 of my cancer is < 10 pct. I understand that it means that less than 10 percent of the cancer cells were dividing at the moment of biopsy.
I wonder if EGFR Exon 20 can behave in a different way than Exon 19 and 21 in view of chemo and immunotherapy. I have heard of several people with Exon 20 who have had a good response to chemo and Keytruda.
Thank you Cancergrace for all the information and support!
Paulina
Reply # - April 1, 2018, 06:07 PM
Hi Paulina,
Hi Paulina,
Lung cancer which bears any of the EGFR activating mutations tends to respond well to standard chemotherapy, but the evidence on the efficacy of chemo/immunotherapy combinations is still preliminary, although it continues to be studied.
JimC
Forum moderator
Reply # - April 2, 2018, 05:04 PM
Paulina, It’s so good to see
Paulina, It’s so good to see you! Thank you for adding to the discussion. I know how much it means to get 1st hand info from someone who’s there. I’m sorry you’re watching progression happen and hope symptoms are manageable.
On the mark I just wanted to let you know how similar your questions regarding possibilities are to mine about my husband. He was thought to be metastatic or maybe he was or I suppose even after 5 years follow up without treatment he still is but it becomes less likely as time passes. He only received chemo/radiation as a hopeful cure to his primary mass which evidently worked but looked messy with much inflammation and scarring which obscures any ability to see what’s really happening with the cancer.
Later they were unable to get diagnosable biopsy from either of the nodules thought to be mets, (one was at 3 cm that shrunk with chemo but also never came back after treatment was stopped, prob a large infection). I only know how it feels from the outside looking in to my husband’s journey and I understand I can’t imagine what it’s like pondering your status. I'm sorry there’s no answers but it does leave lots of hope it’s not cancer, in any form and that’s still a very reasonable possibility.
Sincerely,
Janine
Reply # - April 2, 2018, 08:07 PM
Paulina, thanks for your good
Paulina, thanks for your good wishes. I found your posts to be reassuring and I hope you can find a treatment protocol for exon 20, which I understand is quite different than exon 19 or 21. It seems we are close to turning a big corner on lung cancer where most people with it will see a big benefit rather than the select few who do up to now.
Janine, thank you also for thinking of me and your kind words. I am glad that your husband's cancer has gone into remission and treatment has been successful so far. I think we lose some of our innocence about life and mortality when confronted with such a deadly disease in ourselves or our loved ones. I wouldn't know which one would be easier to deal with.
I sometimes struggle with the uncertainty, but I also tell myself that in this case uncertainty is better than a fatal diagnosis. It's hard not to worry at times [those lesions in my lung plus the possibility that my original cancer had micrometastacized already). I had surgery for an invasive adenocarcinoma and then also 16 weeks of adjuvant chemo, which was really tough. Then I tried a clinical trial for medi-4736 which unfortunately knocked out my thyroid and I decided to end the trial because I was worried about what organ might be next... so I feel that I did everything in my power to get rid of it up to the limit of harming myself irreparably. The chemo left me with some hearing loss and an irritating neuropathy.
I wish more people would post on here. It seems like the site used to be more active and I hope it gets there again.
Reply # - April 3, 2018, 06:14 AM
onthemark,
onthemark,
Yes, uncertainty is one of the most worrisome and frustrating aspects of cancer, both pre- and post-diagnosis. And you're absolutely correct that dealing with cancer is difficult from the point of view of a loved one, as well.
We too would like to see the forums regain their former level of activity; the interaction between GRACE members adds so much to this online community. We are working on a major update to the site, with many new features designed to encourage such paticipation.
JimC
Forum moderator
Reply # - April 4, 2018, 06:59 AM
Hi Jim,
Hi Jim,
Thanks again for your replies. Updating the site is a great plan. I'm curious if you have a timeline for when this will happen. In the meantime I hope other patients will keep posting.
otm
Reply # - April 4, 2018, 08:10 AM
Hi otm,
Hi otm,
We're hoping to unveil it soon, but as with any nonprofit, much depends on funding. But I've seen (and commented on) the prototypes, and it looks terrific.
JimC
Forum moderator