Tom Galli

Look at you standing up for yourself and getting things done. SBRT treatment works well i  here .
Chuck

I am working more closely with my radiation oncologist who is wonderful. The doctor at U of Michigan will consult as needed. I actually did talk with the medical oncologist about my “feelings”. .  Difficult but by gosh he got it. He would recommend exactly what the Michigan guys thought. Going ahead with radiation to spleen and liver Mets. The only two I have. Will keep updating. Thanks for the support. 

Hi TJM,
If your question is having a lump post-surgery then I did not experience that after my RLL.  But if it is something that has newly formed then of course my advice would be to get to the doctor and determine what it is.  If perchance it is a recurrence then "yes" I've heard about it, but at this point that seems to be jumping way ahead of the game.  Please get checked out and let us know what they determine.  My prayer is for good news and that you NED continues.
Lou

Hey Blossom. You probably do not remember me but I remember you.
So sorry you have to go thru this. Your posts bring back so many memories of how I felt at the beginning.
Hope for the best. If I remember correctly you advocated for your mother. Remember that in the end you are your own best advocate. Having done caretaking for my brother and then going thru it myself, I can attest that the patient side is a totally different experience.
Good luck. I shall be watching and thinking of you.
Tom

Hi everyone. Hopefully some remember me. Sorry I dropped off the forum. Many excuses. None good enough.
Quick update. I have been NED for almost 4 years now. Have had some complications but overall ok. As a reminder. Stage 3A Large cell. Had the RLL removed, Chemo and radiation. Also had a PE in left lung long after treatment.
Just noticed a good size lump jus below my Sternum. Middle. Have done some research and I think it may be related to the LC. Curious if any of y'all have ever experienced or heard of something like this?
Missed you guys. I hope all are doing well.
Tom

Keep your hand off that button.  And if/when you are ready for surgery then we have some good information to share with you, but for now enjoy.  Early stage is very important to a good prognosis.
Lou

Whew. So glad you have a respite. And, I'm really glad that your doc is so on top of getting a lot of eyes on the situation. I always feel better knowing my case usually heads to the cancer center's tumor board before any new phase of treatment.  
Hang in,
K

Keep moving forward I'm rooting for you
Chuck

Wonderful news! Hope your heart is lighter and the days full of light.
K

Saw my PCP yesterday to discuss the results of my Pet Scan. She said she had just gotten off the phone with the radiologist who confirmed what she thought, the results are “inconclusive”. Two areas had low SUV’s, lung nodule 1.7 and hilar lymph nodes 3.3 and 3.6 respectively. Could be an adenocarcinoma or inflammation. Recommendation is to do another CT scan in January to see if there are any changes. She feels that if this is adenocarcinoma that it is in the very early stage which is a huge relief. She is referring me to a thoracic surgeon and a pulmonologist. As she said, the more eyes on this the better. So today I’ll call and make those appointments and we’ll go from there. I’m under no illusion that this is anything but an adenocarcinoma but for the time being my hand is off the panic button.

Phyllis,
Welcome here!
I was born and raised in the Commonwealth of Pennsylvania and in my day, the Northeast was indeed very rural. I don't think much has changed given the condition of treatment availability you mention in your post.
In fact, I've been to Plymouth, PA. It was once a hopping place during the hard coal or anthracite coal mining days. 
Ending the lung cancer stigma and opening the availability of screening are very worthy causes to advocate for.
Thanks for joining us and helping spread the word.
Stay the course.
Tom

jtrausch
Thanks for the update and glad to hear that you are doing better.  Even without the spot they would do the scan after three months.  You'll likely be getting scans on a 3 or 6 month schedule for the first two years, then annually after that.  You can discuss the schedule with your oncologist or lead doctor.  In the meantime enjoy your results and know that we celebrate with you.
Lou

I am doing much better and the intense pain has subsided.  My tumor was 3 centimeters, stage 1 mucinous adenocarcinoma in left lung.  No lymph node involvement. My onocolgist said no chemo or radiation so I feel very fortunate. I will have ct scan in 3 months because chest xray at surgery appointment follow up showed spot on right lung. Thanks for all the information it sure helps guide me in this journey. Julie

Dang that durvalumab (Imfinzi). My ground glass (courtesy of the durva and radiation) has slowly disappeared. With the watching they do, it hasn't been a worry for anyone, me included.
Enjoy your precious family time!

Sue
Enjoy the time with your family i am looking forward to that myself. Have a great Thanksgiving 
Chuck

Well, this week is finally over. Five medical appointments. Bread and popcorn ball orders. Thanksgiving buns and mashed potatoes…. Market on Saturday. Whew. I am leaving for my daughter’s house on Sunday with my granddaughter. I can’t wait to spend some days with their new baby. As far as my scan. “No new or worrisome pulmonary nodules/masses.” is the long story short. There is some cloudiness and ground glass in the right lung. The doc is thinking its scar tissue or side effects of Imfenzi. We are monitoring my oxygen levels and of course I have some eczema on my hands. So I’m trying to keep them lotioned up. It’s not easy when you are baking all day. But thank you all for being here. HAPPY THANKSGIVING, I got more living to do.

Thank you Karen. I know my PCP will just be the starting point. Im very comfortable with her and I know she will help me gently ease my husband into the idea that I may have cancer. I will make the call to the oncologist when we get home from our appointment with her as I agree that I need a cancer specialist to review my CT scan and Pet Scan and tell me what’s next.
Thank you again for your response and I hope you have a wonderful Thanksgiving.
 

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.