Tom Galli

Hi, Sue.
What happens if it comes back so soon after treatment? You take the next step. And tell us about it!
Karen
 
 

Those dark moments of the night once made me invest in a night light. (No kidding.) 
Glad you're going to have a conversation with your PCP. Just know that s/he probably doesn't have the specialized knowledge you need at this point. 
Lung cancer is exploding in terms of new research and treatments; you really want a lung cancer specialist to see all the tests you've had and talk about the next step(s). Perhaps your PCP could connect you to one? 
Here's hoping you have a wonderful visit with your daughter this Thanksgiving.

Pet scan done this morning. Boy I never fully appreciated “scanziety” before this week! I’m relieved it’s over but anxious about the results which should be available online to me on Tuesday. Meeting in person with my PCP on Monday 11/27 to go over results and see what’s next. Could’ve done a video appointment the day before Thanksgiving but my daughter will be here & I’m not ready to share this with her yet. So now we wait and try to be optimistic. I find that easier to do in the light of day than in the dark of night which I’m guessing is pretty normal at this stage.

Thank you all for your replies, I appreciate each one. I’ve gone online and requested an appointment with an Oncologist that saw my daughter last year when they thought she had lymphoma (she didn’t thank god). I liked this Doctor and felt comfortable with her. So, we’ll see how soon I can get in to see her. 

Sue,
We call the pre-scan jitters "Scanziety".  It's perfectly normal and we all have a reason to experience it.  I've been "clean" (NED), for 4 years and in the beginning I was always worried about recurrence.  Thank God, that never happened, so instead I worry about my body making a new cancer.  You see I was diagnosed with colon cancer in 2010 and then lung cancer in 2019. I used to live my life waiting for the "other shoe to fall" but after spending time with my Lungevity Family I've come to realize that I just need to live my life and enjoy the time I have regardless of how long it is, so my days are much better than they used to be.  But...even with my healthier attitude on life and cancer I can still get anxious about my scans.  Just know that you have a whole group of folks here that are hoping, and praying for your scans to be the good news you want them to be.  Please keep us updated.
Lou

For some reason, I am anxious about my upcoming CT scan. More so that the first one three months ago which showed “marked” improvement in my SUV. I’m so praying for more shrinkage, but there’s always that doubt in the back of mind. I just had to get this off my chest so I can enjoy the weekend. I hope anyway. I’ll let you all know what happens. Cause what happens if it comes back so soon after treatment? Thanks for listening.

Hello all,
It has been two months since my brother had SBRT for the brain metastasis. He receved 5 fractions of gamma knife treatment in September.
He just made a control MRI and things are looking good.
From a lesion of about 27mm diametar it shrunk to 16x21mm. There is no noticable hemorrhage in the lesion and perhaps no blood vessels.
This was expected according to the doctor and expecting to shrunk even more in upcoming months, control scan in 2 months.
Meanwhile my brother is feeling fine, although he has some issues with certain smells and foods, this is probably due to the changes in the lesion area.
Just sent the scan to the doctor in Turkey and awaiting for feedback.
A little more for Turkey. Since in my country we do not have any type of SBRT, we contacted local outposts of Turkey hospitals to check for options, there are plenty of those in Europe for all sorts of medical treatments.
The treatment including transfers to and from airport and from hotel to hospital costs 6000Euros and it includes the followup consultations.
I am just mentioniong this because I know that  if you don't have good health insurance this kind of treatment would cost more. Istanbul has very good hospitals and experienced doctors.
This is for anybody that might come across this post. If you need more information you can contact me, I will share what I know.

Glad to hear that the lesion is shrinking and hope it will more with the next MRI. I had gamma knife last week for a 5mm lesion on my right temporal lobe, also another small one detected with MRI the morning of my procedure. I will have follow up MRI in two months.

the majority of my cancer was in my lymph nodes - throughout my chest
impacted my breathing, caused discomfort and pinched the nerve to my left vocal cord
this was my first pet scan
Extensive mediastinal and left hilar lymphadenopathy is
redemonstrated.  The adenopathy is FDG avid.  In the superior
mediastinum the nodes measure up to 5.9 SUV.  Right paratracheal nodes
measure up to 8.5 SUV.  At the aorto pulmonary window than lymph nodes
measure up to 6.3 SUV.  At the left hilum maximum SUV of 6.1 is
recorded and in the subcarinal nodes maximum 7.9 SUV is demonstrated.
Left subpectoral and left axillary lymphadenopathy is also
demonstrated and is FDG avid.  The largest node at the left axilla
measures 2.1 cm with maximum 7.4 SUV.  The tiny 1 cm spicular focus in
the left upper lobe demonstrates intermediate FDG activity with
maximum 2.2 SUV.  At the L4 body there is a focal area of intense
activity in the right pedicle measuring 7.1 SUV suspicious for
metastatic lesion.
interpreted means something like '2 spots on the lungs, a spot on my spine and a buttload in my chest lymph nodes'
my last pet scan
No focal area of abnormal FDG accumulation is identified at the neck, chest, abdomen, or pelvis. There is no evidence of recurrent or metastatic neoplasm. Lucent and sclerotic bony lesions at L4 and the right ischium demonstrate a stable CT appearance with no FDG activity currently.
sounds promising - and this was at the bottom
IMPRESSION: Negative PET-CT exam.
so yeah - they can fight it in lymph nodes - this is how they fought mine
chemo - carboplatin and alimta
immuno - keytruda
every 3 weeks - for about a year (saw results before a year though) - stopped the carboplatin a few months back
kept my hair - not one day of nausea - my voice came back
some side effects but nothing i could not live with
not everyone reacts to chemo the same - i know that - and what i take might be on the mild side
we all fear the cancer but i would not let the news of a possible lymph node involvement add to the fear
 

"Stable" is such a lovely word. "Lymph node" is not always, depending on what is happening with it. No matter what happens, the hardest thing for me is to live in the moment, aware of exactly what is around me that second, and to NOT let myself get outside of those parameters. 
Researchers learn more and more about lung cancer each day. Unfortunately, they have not (yet) learned to predict the future of anyone's lung cancer. I would love to say, "Don't worry, it will be fine," because neither I nor anyone else can say that with certainty. What I can say with complete confidence is that you can learn to manage the scanxiety and fear. You can live a rich and beautiful today, and you can string days and days and days together-- I know someone who has lived with Stage 4 for more than 14 years. 
Please hang in; please keep us posted.
K

Hi everyone, here to update on my mom's lung nodules. My mom did PET Scan two months ago and her doctor said no uptake on the scan , don't show any active lesions and recommend recan in 1 year. 

Arisa,
Thank you for the update and it is good news.  Your mom's doctor's seemed to have taken the correct and careful approach.  My hope is for good scans going forward as well.
Lou

Arisa,
Welcome to our forum.  So, your mom has a nodule that has grown, but is still very small.  At this point your doctor may decide to do some additional testing.  Perhaps a PET scan to see if any of the nodule "lights up" indicating it may be cancerous and if there are any other areas of concern throughout your mom's body. But, at the end of the day, a biopsy will need to be performed as that is really the gold standard of testing nodules.  If for any reason a needle biopsy is not possible a "liquid biopsy" via a blood test may be able to be performed.  One way or another more testing is needed so the doctors can properly determine if the nodule is cancerous or not and if there might be any spread to other areas.  With all the diagnostics done your doctor will then present your mom with options ranging from surgery alone to many other forms of treatment for the cancer.  Once you have all the test results you can sit down with your doctor and really discuss the best options.  After you do that please share here and you'll surely find people who have had the same or similar treatments and they will be able to share their experiences with you.

Meanwhile one of our members wrote a great piece called, "10 Steps to Surviving Lung Cancer; by a Survivor" and it can be found here.
Lou

Sam
I too struggle with anxiety and fear not knowing what my future is. I've been NED for 1 1/2 years now. I live my life and do the things I did before diagnosis. Sam keep fighting you CAN get there 
Chuck
 

Thank you Lou, I appreciate your encouragement. Lots to think about and do with the holidays quickly approaching so I’m hoping I can focus on that. 

The diagnostic phase of this disease makes so many of us crazy.  I'd like to say that this shouldn't upset you, but when I went through my diagnosis (original CT Scan, then follow up scan, then PET Scan, and finally confirmation during resection.  All I can tell you is to do what you can to keep yourself mentally occupied as possible with something not LC.  My hope is that you get this test quickly so you can know what is or is not going on.  Hang in there BlossomsMom...you can do this.
Lou

I'm sure that ageism is a factor in treating a patient's cancer-- for some doctors. The bottom line: no matter what the reason, we deserve to have doctors who will work with us, in a way each of us feels good about for ourselves. Fore me, that means a combination of care and respect.
When you said the oncologist doesn't consult with other doctors and that he said there was no point in further exploration, I was appalled. This is not somebody who is ageist, he's simply not up to date. If he is not actively engaged in the lung cancer research arena, even just to try to keep up with it, he is worthless to you as an oncologist. (Sorry to sound harsh, but I don't think we have time to be nice.) 
I, too, have a radiologist who is gold. I always have her review scans, even if she hasn't ordered them, because she is so good at it. I think this keeps both oncologist and radiologist on their toes. 
Right now, I think you are never "too far along treatment-wise" to seek another opinion or another doctor. Go for it!!!!
Karen

I love how they can find teeny unexpected stuff and obliterate it. I had gamma knife in March '22 and my scans have been clear since then. I wish the same for you. 
Karen

Hi SamGirl,
Sorry to hear about your recurrence.  LC is one of the most recurrent forms of cancer so we do live with that aspect of the disease.  I had my lobectomy (LRL) in May of 2019 and through this past August I have been NED.  Despite this I know that there is always a possibility for recurrence (even at my Stage 1 there is a recurrence rate of 30-35%).  But like you, I just try my best to live my life and not focus on the cancer.  Otherwise I'd lose all the joy of living and that would be a tragedy.
Regarding the lymph node...  I'm assuming that you have a recurrence in the lung and something is showing up in the lymph node as well.  Was that discovered with a CT or PET Scan?  Either way, in answer to your question "Yes, I have seen many of our survivors here who've had recurrence and different types of involvement and have come through treatment NED.)"
There is quite a bit of hope offered considering the large number of survivors on this site and forum, and I hope that you'll take a bit of time to read a blog titled, "10 Steps to Surviving Lung Cancer; From a Survivor".  It can offer some important information on surviving this disease.  Please keep us updated as you continue your journey.
Lou

Good day everyone,
I haven't been on in a while. After my vats in Nov. 2020, I've been trying to live my life as if this whole cancer thing never happened but I should have known it wouldn't be possible. Day by day the fear and anxiety alone was/is hard to ignore. Now I'm looking at a recurrence with a lymph node involved. I'm scheduled for a bronchoscopy on the 21st for the lymph node and the new tumor is in the same lung but the LRL. Now I'm living in fear again. What does it mean if a lymph node is involved. Is there still a chance for cure/NED. They mentioned not wanting to give me surgery again but if the lymph node is negative they will do a radiation seed for the nodule but if it's positive they will do chemo. I don't know, just so confused and tired of being afraid. 

Hi Phyllis, and thank you for your great work in raising awareness. 
I have compound mutations also, one of which is an Exon 20 point mutation (S768i). I've encountered one other person with this mutation.  Luckily my other is garden variety EGFR L858R, for which there are some targeted treatments. 
If you have an Exon 20 insertion, you've probably heard about this. 
Also, you may already be a part of Marcia Horn's Exon 20 Facebook group. She's amazing. (Because I have a point mutation, I don't qualify. 🤷‍♀️ ) But you might want to check it out if you haven't already.
Best,
Karen

Jim, 
So sorry to hear your wife and you are going through this. Here's hoping someone here has some experiences to share.  Just wanted to say Welcome. 
Karen

Yes ned is a wonderful thing

That is great news Ken….so happy for you!

When this journey started for me, the nodule they found in my RLL was incidental to a scan I had to see if my diagnosed prostate cancer had spread (it hadn't). I guess I was lucky (if one can call it lucky) that my NSCLC was discovered at such an early stage.  So, had the prostate removed at the end of January and my RLL at the beginning of April. Then, back into surgery at the end of June to fix a chyle leak. It's been an interesting year.
Anyway, the results of my latest scan is the effusion is greatly reduced and NED otherwise!