Well that was myself I was asking about in my last post about doing a biopsy and going through scar tissue. My original IIIA adeno diagnosis consisted of one tumor each in the upper and lower right lobes. No lymph node involvment. On my last PET something lit up in the bottom right lobe, so on to the biopsy. It has come back with a small approximately 1 cm adeno again. Now my rad onc feels that I did not have stage IIIA. She felt it was two stage I primaries even though they were the same. It's been almost 2.5 years since I completed treatment. Now the only place again is the one tumor in the LRL. Options being suggested are RFA or surgery. I've read the info on RFA for LC and not sure that is the way I'd want to go.
I did have a partial lung collapse from the biopsy and it was a rough time, but I've gotten over it. My rad onc doesn't feel a surgeon where I live will do the surgery due to the radiation. Previous tumor on the LRL was close to the inside (spine) and this was one is too. Would VATS be an option here or would it have to be a full thoractomy? She also suggested seeing Dr. Sugarbaker in Boston. Nothing has been decided yet as I'll be meeting with a surgeron and interventional radiologist here first to talk about treatment. Thanks as always. Take care, Judy
Tue, 06/11/2013 - 08:27
Hi Judy, I was really hoping that this wasn't a conversation about you and you remained NED. I'm so sorry about the recurrence and that you had a tough time with the biopsy. D had a traumatic lung collapse with one of his biopsy tries.
I'm sure you know that radiation scarring is the issue here. It has been described as trying to cut through cement if the surgery is much more than a couple of months post radiation. So I'm glad you are traveling to have a major 2nd opinion on this. Since it all depends.
I'm sorry it has taken so long to answer your post I found myself in the country without access to the internet and a low battery on the phone. No problems on my end just helping out bil with egg business while sis is out of town on consulting business and with the computer. Bad planning on my end.
I'll ask a doctor to reply.
All the very best and of course, take care,
Tue, 06/11/2013 - 08:38
Judy, I'm also sorry to hear about these developments. I hope after you have heard from several experts that the right path will become clear. I know how hard it is to be faced with several options. Hard to know you're choosing the best one, but like you said, you've had 2 1/2 years experience, dealing not only with your own situation, but following and giving support to others. You're probably armed with more knowledge than you realize.
Please keep us updated, and know there are many here sending love.
Tue, 06/11/2013 - 10:31
I'm so sorry to read about this new cancer. . .but am quite hopeful that some really good options remain on the table for you. . .and that you will be back to your NED status before we know it.
I'm keeping you close. . .
Tue, 06/11/2013 - 15:04
I'm sorry that you're no longer NED. In general, it often makes sense to locally ablate recurrent disease if on best imaging, there's really only one spot seen. The best modality is hard to address without all the details, including imaging. If the surgeon doesn't think that surgery is a good choice, other alternatives include RFA and cyberknife. For cyberknife, fiducials can be helpful. These are tiny flecks of metal (often gold) that are put in or very close to the tumor during biopsy that can help guide the radiation machine in its targetting.
Tue, 06/11/2013 - 15:08
Thank you all for your support and responses. I actually feel lucky to only have this small recurrence.
Dr. Weiss, is one of the radiation options favored over the other, since this is surrounded by scar tissue?
Take care, Judy
Tue, 06/11/2013 - 16:00
I'm sorry to hear about the recurrence, but happy that you're past the difficulties of the collapsed lung, and I'm hoping that you'll have good discussions with your doctors and formulate a good, effective, well-tolerated plan going forward.
As always, you will be in our thoughts.
Tue, 06/11/2013 - 22:04
I don't have the radiation oncology knowledge to offer a good comment here, but I'll ask Dr. Loiselle if he can offer any insights here.
Wed, 06/12/2013 - 03:56
Judy, I am sorry to hear of this development, especially since you have been NED for an extended period of time.
Perhaps the long NED is suggestive that this is a 'slow' cancer since it has taken so long to come back (well, at least I would like to think that way).
Please stay strong.
Wed, 06/12/2013 - 05:35
Thanks, Jim & Luke. Luke, I like to think that way too and hope if if keeps recurring, it's in dribbles like this one. Dr. West that would be great if Dr. Loiselle could chime in. Thank you.
Take care, Judy
Wed, 06/12/2013 - 09:30
Hi Judy -
Sorry to hear about this, but I would be optimistic regarding an excellent outcome with appropriate surgery or radiation to this area of recurrence.
First, surgery such as a VATS lobectomy is often feasible following prior radiation therapy. It does depend on surgical experience, but the thoracic oncology surgeons in our program will do this routinely.
In terms of re-irradiation, all approaches can have certain benefits or disadvantages, including linear accelerator based radiation, protons, or cyberknife. For recurrent lesions in close proximity to the vertebral column/spine, cyberknife is typically ideal.
I hope that helps.
Wed, 06/12/2013 - 11:19
I am sorry to hear that you've had a recurrence and had a lung collapse(Mark had that w/his biopsy). I wish you all the best as you scout other opinions and come up with a tx plan. I'm very hopeful that you will be back to your NED status very soon!!!!
I will be keeping you close in my thoughts,
Wed, 06/12/2013 - 14:20
Dr. Loiselle, would you consider RFA? Thank you for your quick response.
Take care, Judy
Thu, 06/13/2013 - 12:08
Hey Judy, I too am sorry about the recurrance I hadn't checked in on Grace in awhile but have been on Inspire a bit more. I'm sure you have a lot of the answers already and just wanting confirmation! I will pray for you to have a speedy return to your NED status with much more sucess this time! You have been such an inspiration to not just me but a lot of people not just here but on Inspire too! Actually you were the one who recomended me to join Grace! It has been quit the source of information and support! I hope you will keep us posted as to what is going on on your new Journey! Lorrie! :)
Thu, 06/13/2013 - 12:26
Judy, I've found this blog post on rfa for lung tumors linked to below. I'll also ask Dr. Loiselle to comment on your follow up question.
All the very best,
Thu, 06/13/2013 - 12:47
For both effectiveness potential and toxicity concerns, I would favor radiation over RFA, unless for some reason radiation is not an option.
Thu, 06/13/2013 - 18:56
Very sorry to hear of your recurrence, small as it is. I hope you can sort out the best solution soon and be on your way back to NED and playing with the grand babies ;)
Hang in there and best wishes for getting through this quickly.
Fri, 06/14/2013 - 13:44
Hi all, well not a candidate for RFA, cryoablation or radiation. Since this lobe was radiated before and this new tumor is in the radiated area, they said no to re-irradiation. My only option that I can see is surgery, if they'll even consider it. Since this is a recurrence, if I did do surgery would chemo then be recommended?
Onward we go! Take care, Judy
Fri, 06/14/2013 - 14:05
Hello, Judy. I of course cannot answere your medical question but just want to let you know that my family will be thinking and praying for you and that you beat this sucker back into nothing again & get back to one of the greatest acronyms there is...NED..NED..NED..NED..NED...NED..NED!! Please take care and thanks again for all of your help over the past months for my Mom.
Fri, 06/14/2013 - 16:27
I don't mean to hedge, but this is a situation so far outside of the boundaries of evidence-based medicine that it falls entirely in the range of individualized recommendations based on judgment and specific circumstances. If there is a realistic probability of killing the last cancer cell for good with chemo, then it would be a reasonable consideration. If the strategy is to manage the cancer with as little intervention as possible over time, and there isn't a realistic probability of killing the last cancer cell for ever and ever, I think it wouldn't make much sense to do chemo when there's nothing even to treat, but rather to save it for another day, when it might be useful to fight cancer actually causing a problem.
Fri, 06/14/2013 - 16:30
The waiting while figuring it out is probably pure torture! Believe me I know! Your in my thoughts and prayers! Lorrie
Sun, 06/16/2013 - 07:41
Thanks Dr. West. You know me, I would never ask if you'd recommend this for an individual, just asking for your thoughts. I like the idea of saving chemo for another day, if needed. Take care, Judy
Sun, 06/16/2013 - 16:47
As a Stage IV afforded only systemic treatment, I try to follow radiation, ablation and surgical options just in case, but my knowledge is thin.
I do have a friend/mentor who is 9yr Stage IV NSCLC survivor. He has been NED for the last 5 years. He had ablation, radiation and surgery - long story. 5 years ago, he had a recurrence in the lung that was not radiated, and therefore don't know if his experience has any relevance to your case. But I wrote him to make sure I remembered correctly what he told me, and this is his response:
"The little tumor (1.5 cm as I recall) that popped up on my left lung was removed with laproscopic surgery. If it had a more official name, I don't recall it. It was a simple procedure involving just one day in the hospital. Went in, in the morning, woke up later that day with a 1 1/2" incision on my left side and a 1/2" incision for a drain. Went home later that afternoon. They got it all and I've never had any more problems since. Hope this helps."
There may be reasons it can't be as simple as my friend's experience for you, but I thought I would pass it on. If any patient is capable to weigh all the possibilities calmly and rationally once presented and choose wisely, it is you. I hope you will explain the option you choose and why so we can keep on learning from you. All the best.
Mon, 06/17/2013 - 15:45
Slimer, thanks for the response. My case is a little more complicated since the RLL has already been radiated. Dr. Loiselle recommended GK which they don't have where I live. I'm looking into second opinions in Boston on surgery and gamma knife. All they're offering me here is chemo.
Take care, Judy
Mon, 06/17/2013 - 16:48
Well. . .they have GK in Southern California near where I live - - which is a lot further from you than Boston. But, you are more than welcome to come out and stay with me :O)
Tue, 06/18/2013 - 17:18
Laya, you're a sweetheart and if I get out that way-I'll be sure to look you up. I lived in San Diego county many years ago and loved it. But my grandbabies are here, so this is where I'll stay. I'll be doing a separate post on my update since I seem to be having a hard time finding my original post. Hope you're doing well. Take care, Judy