Hi Everyone,
I have taken a break from posting after all of my problems (fistula that has since resolved) resulting from having a ggo removed by ablation in 2013.
I have gotten stronger and am feeling just great I am happy to report......but...I just went for my scan and
was told I have a ggo that has grown from 9 x 17mm to 13 x 22 mm from image in November 2014 to now
July 2016. It's a roller coaster ride that never ends.
My oncologist has mentioned a Pet scan, an EBUS, a needle biopsy, possible surgery or radiation or chemo although she did not recommend anything yet because she is not sure where to go with this just yet.
She has requested that the thoracic team review my case and make suggestions/recommendations.....and hopefully, I will hear back this coming week to see what they recommend and I understand that the ultimate decision is mine.
Since I have such respect for opinion on this site, I would be so grateful for general opinion about the size of this growth and how worried I should be.
This ggo is very close to the ablation site and there is a lot of scar tissue close by so I am nervous about a wedge resection yet I like the idea of that better than chemo. What about immunotherapy for this type of cancer?
Is it reasonable to just watch a ggo of this size? Is it possible that a position or cut of the picture would be off by this much? Incidently, there are no new ggos or anything new since my first ever scan in 2009 only increasing size in this and possibly another "spot" that is no larger but perhaps a little brighter.
I just feel so well and don't want to look for trouble but also don't want to miss an opportunity to have a few more good years.
Thank you so much for any wisdom you can share.
Lembird
Reply # - July 10, 2016, 09:53 AM
Hi Lembird,
Hi Lembird,
Welcome back. It's good to hear that you've had such long periods of stability, and that you're feeling so well, but sorry that you need to deal with this new scan result. Although neither of the GGO dimensions is that much increased over the previous scan, the fact that they both are tends to indicate this isn't just a difference in the cut of the scan images. On the other hand, you're talking about a year and a half from the November 2014 scan, so I don't know that you'd call this rapid progression at all.
If you've seen Dr. West's post on managing multifocal BAC, the key question in your situation is whether you have scan data to indicate the pace of the disease. If the disease appears to be indolent, then watching and waiting is the suggested option. In your case, you have GGO growth over a long period, but no increase in symptoms, so if you're doctors feel that is indolent, then perhaps a re-scan after a relatively short period would establish the pace of the disease and help determine the proper treatment strategy. A PET scan, either now or later, might also help show how active that GGO is.
Good luck with further workup on these findings, and please let us know what is decided.
JimC
Forum moderator
Reply # - July 11, 2016, 12:02 PM
Hi Jim,
Hi Jim,
Thanks so much for your input and I think I agree with you about a Pet scan.
I heard from my medical center oncologist and she said the tumor board did not have anything definitive to say. The surgeon said he will not agree to do a wedge resection because of the possibility that the tumor (ggo) could be in the bronchus (which she doubts) and that there is a lot of scar tissue in the area due to the ablation in 2013. The radiation onc said he is not willing to radiate since it is a GGO and he can't get good margins.
So, that leaves the waiting game or chemo and since I am not amenable to chemo right now when I am well and walking and riding bike daily (no breathlessness no coughing no mucus production)....we have decided to wait and scan again in 6 months and if ggo is larger and more consolidated, perhaps we can get another surgeon to look at it or another radiation onc.
I asked if the growth(in 6 months) is limited to a couple of mm could we just wait another 6 months and she thought that would probably be unwise and probably be time to act.
In the meantime, I will see my local oncologist and give him the information and see if he would be willing to order a Pet scan which I think could give me information that, if good (low SUV), would give me a lot calmer next 6 months or at the very least, let me know what I am dealing with.
I will keep you posted.....
Kindly let me know if you know of any trials for BAC ....immunotherapy or otherwise. Is it feasible to do a round or two of alimta to slow down growth of GGOs? I know Dr West is the expert on this and wondering what he would do. Wait and watch....how long before taking out the lead runner? I know this is not a question with an easy answer but how large would a ggo have to get for it to be time to take it out?
Thank you,
Lembird
Reply # - July 12, 2016, 04:05 AM
From everything I've learned
From everything I've learned from Dr. West re: BAC, I'd say you're doing very well considering you're only showing one GGO and not several scattered over both lungs. Trying to remove all BAC is likened to "whack a mole," as more can grow and you don't want to continue with more surgery. Since this is so indolent and if you've read Dr. West's articles on BAC, many people live long symptom free lives without any treatment at all and die from other causes. I would ask your onc how familiar he/she is with adeno in situ/BAC.
Take care, Judy
Not a medical professional but a LC survivor and advocate.
Reply # - July 12, 2016, 01:04 PM
Thank you Judy.
Thank you Judy.
I have read all of Dr West's writings on BAC (many times over)but, of course, when faced with a faster growing "lead runner" it gets confusing.
I plan on getting a Pet scan and hoping it is still low SUV like when I first got this curse in 2009. If it is, I will relax a little more.
I was hoping there was a new immunotherapy for this but I guess not....just watchful waiting.
I am pretty sure my doctors don't see my process as different from any adenocarcinoma....and we know it is absolutely different. I don't want to be frightened into surgery or other treatment.
I am happy to see you are staying ahead of your process also and thank you for taking the time to answer me. I guess I just needed someone to agree with me that this growth in almost 2 years is still indolent.
I will post again after I get my Pet scan.
You take care also,
Lembird