NSCLC for the 3rd Time? - 1270959

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charliebutler
NSCLC for the 3rd Time? - 1270959

Hello Everyone Charlie here,

I have been a member here since 2011 but, have not posted in a long while. A brief history for those that do not remember me. I had a Right Upper lobectomy for NSCLC, Stage 1, in Dec 2010. No adjuvant chemo.
In August 2013 I had a Right Lower wedge resection for Recurrent NSCLC, Stage 3 followed by 4 rounds of Cistplatin and Alimta.

In April of 2014 I was retired from job of 12 years. My company gave me $25,000. and told me to have a good life, I applied for Disability under the Compassionate Allowance statutes, it was denied and I am still awaiting appeal nearly 18 months later. I had to give up my BCBS but was fortunate to get accepted for medical care through the VA,

I had a CT scan last week and saw the Oncologist yesterday, Results: I had an 8mm nodule at the site of my first lobectomy, near the clip, There was Pleural thickening adjacent to the site. There was a 2mm nodule found in the left lung and there was on enlarged lympth node. They have ordered a PET scan.

Based on my previous history I am more than a little concerned. I am afraid that one or all of these things may be Cancer and I am not sure that anymore surgery can be done. Dead Man Walking??????

JimC
Hi Charlie,

Hi Charlie,

Welcome back to GRACE, although I wish you didn't need to be here. Although your scan findings are suspicious for recurrence, even if it is cancer I would not agree with your conclusion. If further surgery is not an option, radiation and chemo certainly are available choices. There have been a number of advances since your treatment ended, including the new immunotherapy drugs which show great results for some patients. In addition, it seems that you responded well to previous chemo, and the mantra often repeated in the lung cancer world is "responders respond", so you have a very good chance that further treatment will be effective. Also, if this is recurrence, it took a couple of years to appear, and that slow process is another favorable factor.

Good luck with your follow-up PET, and please let us know how you are doing and whether you have any questions.

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>

cards7up
Totally agree with Jim. Mine

Totally agree with Jim. Mine also started in 2010 with stage IIIA. But now they believe I had two stage I primaries of adeno. First time around I had SBRT and chemo. I had my recurrence 2.5 years later in the same area of the lower right lobe. This time I had surgery and chemo. Today is the 2 year anniversary of my surgery! YEAH! If I have another recurrence, I'll deal with it then and sure won't feel it's the end of the world. I'll be done when I'm on my dying bed! Fight to the finish! Good luck to you.
Take care, Judy

charliebutler
Thanks for your Response.

Thanks for your Response. Over the years I posted many encouraging posts under the name Bcharlie. I am not giving up and I know about all the available treatments. I also know they have wonderful treatments for broken legs but I still do not want one every 18 months. Apprehension and a little depression is not unusual for someone facing the possibility of having Cancer again for the third time. I will do everything I have to do but, sometimes a sympathetic ear from people who really know what you are facing is all that is called for.

Charlie

catdander
Congrats Judy on the 2 year

Congrats Judy on the 2 year post surgery and doing well. Don just had his 6 year ani for his surgery (not resected) the 25th. I'm so honored to be here with you and Charlie and wish you both well.

Hi Charlie! I looked up your new profile but didn't find any hints of who you were. I'm so glad you clarified. I can't say how good it is to see you here. I hope you've got nothing to worry about but as an onlooker I do accept that I've got no idea of how difficult it is for you, Judy and D to go through life waiting for the other shoe to drop. It certainly isn't easy being the lucky ones.

To the Three Musketeers! All the very best of Luck.

Janine

charliebutler
Janine,

Janine,

Thanks for your hello. My name was Bcharlie but it had been so long since I had signed on, that I had forgotten my password and my email address had changed too. Over the years I have seen many of my friends lose their battles with cancer and many that are survivors. When my cancer came back the second time, for some reason I was not surprised. It started the same way, found a 5 mm nodule and three months later it had doubled in size and yet it did not light up on the PET scan.

This time 8mm and near the location of the clip from my first surgery. I will be very surprised if it is not cancer. I pray that it is not but am getting mentally prepared to fight once again. For sure hope the 2mm nodule in my left lung does not grow.

Glad to hear that all is well.

cards7up
Charlie, I had an MRI on my

Charlie, I had an MRI on my spine yesterday and was just waiting to hear what was going on. This was ordered by my PCP as I'd been having a problem with my right back side and not the spine itself for months now. I actually told my onc about it back in May and she looked at it and said it was probably just a pulled muscle. Well now we can commiserate together.
I have a compression fracture of the T11 caused by metastases. So I'm now in my third round with this as well. I will have a PET scan then get set up for a kyhoplasty and they want to biopsy the bone-ouch! Then radiation. Will have to see if the PET shows anything else to see if chemo will also be included.
So here I go again! I used to like that song, but not anymore!
Take care, Judy

charliebutler
Judy,

Judy,

I am so sorry to heart about the mets to your spine, I had my PET scan this morning but will not see my Oncologist until the 10th. I am afraid I am in a catch 22 situation regardless of what I find out. If the nodule lights up then at least I can get busy dealing with it. If it didn't light up, I will never trust that reading. My second bout with NSCLC, the nodule did not light up on the PET. My Onc. ordered the surgery anyway and it was in fact cancer. Oh Well!

Please keep me posted and I will be praying for you.

Charlie

catdander
Oh Judy No

Oh Judy No

JimC
Judy,

Judy,

I'm so sorry.

We will keep you and Charlie in our thoughts as you continue the good fight.

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>

cards7up
Charlie, I had a copy of my

Charlie, I had a copy of my MRI on CD and got it the next day. I put this in my computer and go to the report. This is how I found out, not from my doctor. I haven't even talked to my onc yet but did talk to my rad onc from 5 years ago. I don't care much for my med onc but can't change as there isn't much too choose from here. If I didn't have to travel 2-3 hours away, I'd have treatment somewhere else. I consider this basic as far as the kyhoplasty and radiation, but will discussing it to find out how many kyshoplasty's this doctor has done. I'll travel if I have to. Still have to have my PET first. Will keep you updated!
Take care, Judy
P.S. Thank you Jim & Janine for your thoughts!

charliebutler
Judy,

Judy,

Keep us posted. I got a call from the VA and was told there was no uptake. This good news but I am still on guard until the next CT scan in December. I have a moderately differentiated Adenocarcinoma and last go around it never showed on the scan. I guess I am still waiting for the hammer to drop.

I have been out of work for the last 18 months and had to give up my insurance. I ahd to give up all the doctors I have been working with from the beginning. I am now being taken care of by the VA in Biloxi MS.

Lucky that I was a Veteran, otherwise I don't know what I would have done.

Charlie

JimC
Hi Charlie,

Hi Charlie,

Although I know that the uncertainty and worry persist, that's good news that there's no uptake. If anything, that should mean that even if it's cancer it's not particularly fast-moving. Of course we're hoping that your follow-up scans show this to be a benign process.

I'm sorry to hear that you've lost your insurance, but I'm glad that you have the VA to fall back on. I hope they take good care of you; it's the least we can do for our veterans. We appreciate your service to our country.

Best,

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>

cards7up
Charlie, these may be too

Charlie, these may be too small too light up on a PET so follow-up will be necessary. A CT scan at 3 months to see if anything grows. Great that you have the VA that's the only insurance my brother has and he loves them. Take care, Judy

hopey5000
First, let me thank you for

First, let me thank you for your service. My hopes and prayers are with you. The nature of targeted treatment has increased with promising results for immunotherapy. I would be interested in what mutaton testing showed.

charliebutler
Thanks for all of the support

Thanks for all of the support. I am afraid the nature of a ,Cancer diagnosis and then a recurrent tumor along with two Thoracotomies, makes you a worrier. The problem in my mind is that the nodule in my right lung that is at the sight of my original surgery has me worried. It was not there three months ago and I have had no colds, bronchitis, or pneumonia. Is there some other explanation for how it got there?

As for the VA, the facilities are new and very modern and the people and staff are great. I have no Copays, and all of my medications are free. My Oncologist told me that they can medications that others can't,
Praying for you Judy and everyone fighting Cancer. I have no Mutations.

Charlie

charliebutler
Hello Everyone,

Hello Everyone,

To continue from my last post. I had another CT with contrast at approximately 3 months. The results of the scan were as follows; The 8mm, non calcified nodule, right upper lung, had increased to 11mm. Radiologist analysis, Highly suspicious for recurrent Neoplasm.

After followup with Oncology PA, (I have yet to actually see an Oncologist) She is ordering another PET scan and submitting for a Thoracic consult. I am working through the VA because I no longer have insurance. The PA seems to think that it is Cancer but says that it is too small at this point to biopsy. Can not start any treatment until the type of Cancer is verified. The Thoracic consult is to investigate the possibility of removing the remainder of the right lung. Does this all sound about right.

Charlie

JimC
Hi Charlie,

Hi Charlie,

I'm sorry to hear of this latest scan finding. Nodules measuring a centimeter or more often can be biopsied, although it may depend upon the location or other characteristics of the nodule.

The PET scan may help clarify the situation. You didn't mention anything about the other nodule and lymph node seen on the previous CT, so if those are no longer visible that is a positive sign. In that event, if the 11 mm nodule proves to be cancer, syrgery may be an option.

Best wishes for a good scan result.

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>

charliebutler
Jim,

Jim,

Thanks for your response. The radiology report did not mention the small nodule in the left lung but did mention that there were no changes in the nodes. I have had two thoracotomies and I sure do not look forward to another.

Charlie

cards7up
I have to say Charlie that I

I have to say Charlie that I don't understand why you had two thoracotomies with VATS the least invasive surgery for LC. I would look into SBRT first before doing anymore surgery especially if that's the only area.
Have they said when they'll do a PET scan? Take care, Judy

charliebutler
Hey Judy,

Hey Judy,

I really do not know what to tell you other than just following my doctors recommendations. I am now under the care of the VA. I am awaiting the scheduling of my PET which will take place in the next 2 or 3 weeks. I have an appointment on the 30th with a Thoracic Surgeon to find out about doing a biopsy. The VA is a whole different animal. There are no charges for anything but, then again nothing happens fast.

Keep you posted.

charliebutler
Sorry for the long delay but,

Sorry for the long delay but, finally have some information. Last week at a CT guided needle biopsy. The Thoracic Surgeon called me last night to tell me that the test was positive for cancer. I have had adenocarcinoma the last two times but this time they found adeno and small cell. I have an appoinment with my Oncologist on the 10thand the Surgeon said that my case would presented at a tumor board.

Judy, the Thoracic Surgeon said that after having had thoracotomies twice, that he could not do VATs because of the scar tissue, assuming that surgery is even possible. I won't know about treatment until the tumor board meets. He said the small cell findings definitely complicated the issue.

Charle

cards7up
I didn't think they'd do VATS

I didn't think they'd do VATS since you already had 2 thoracotomies. My thoughts were, why didn't they do VATS the first 2 times. I don't think you'll do surgery this time, but targeted radiation SBRT and chemo sounds like a possibility.
Sorry I forgot to update also. I had the biopsy on the spine fracture and it was negative. I was dx with scoliosis and osteoporosis, this is why all the back pain. But still NED!
Wishing you the best Charlie. Keep us updated.
Take care, Judy

catdander
Thanks for the update Charlie

Thanks for the update Charlie but dam the news. I'm so sorry about the new nodules. There's not a lot known about how and why nsclc changes to sclc. It could be something new altogether or a change stemming from treatment, but certainly a good example of how much that isn't known. I hope you find a way to stop it in its tracks. There are promising new trials and new approved treatments since you started all this like immunotherapies.

I hope you can hold you nerve and kick up some life. :)

Best of luck and hope,
(((hugs)))Janine

JimC
Hi Charlie,

Hi Charlie,

I'm sorry to hear the results of your biopsy. I hope that your medical team will make some good recommendations for a treatment plan. One possibility to consider is immunotherapy, which has been effective in both NSCLC and SCLC. Please let us know if you have questions after discussing your options with your doctors.

Judy,

Although a diagnosis of scoliosis and osteoporosis is generally not a good thing, it's terrific to hear that your back pain is not cancer-related! I hope that your doctors will find ways to make you more comfortable.

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>