Hello - I'm brand new here. Diagnosed a week ago. Biopsy report reads well-differentiated mucin secreting adenocarcinoma. Had a PET today. 46 yo male. Wouldn't know anything was wrong had I not been diagnosed. Physically I feel good. Emotionally up and down. Waiting around has been tough and my mind goes to worst case scenarios often.
Fortunately they think they caught this early. At this point docs are thinking stage 1. They say my l. nodes look stable. I have a lot of love and support. Tumor is 1.9cm. Other than my diagnosis I am healthy. I have been exercising regulary and enjoy running, hiking, and gym. Exercise has helped me immensly in dealing with this. Trying to be positive and practicing gratitude. Still... this is surreal, frightening and at times, overwhelming. Feels like a very bad dream, but it is not.
Trying to take this one step at a time.
Thanks for letting me share.
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BlueSkies42
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Glad you found this forum to help you as your learn more about your diagnosis and upcoming treatment. The GO2 Foundation for Lung Cancer is here to help you along the way. Reach out to us for support, educational materials, and for any other assistance you may have. Our number to call is 1-800-298-2436 or by email at support@go2foundation.org. Being newly diagnosed, I recommend checking out all our resources but to get started here is the newly diagnosed link: go2foundation.org/resources.... We are here for you and your family. Warmly, Kim
Very sorry for the need that drove you here. Unfortunately your experience is becoming more and more common all the time. People who have healthy life styles that include diet and exercise and no other risk factors are becoming the fastest growing population of lung cancer patients. Somewhere between 20 & 30% of new diagnoses have no known risk factors.
That your cancer is well differentiated is a good sign that it is a newly developed cancer. These tend to be less aggressive. Insist though that they do a brain MRI to be certain there are no mets there.
Where is the nodule located? Are they talking about a video assisted thoracotomy surgery (VATS)? Whatever the treatment plan someone here will have experienced it and will gladly share recovery strategies. Your continuing exercise will be a positive factor in recovery from any treatment mode. Please keep us informed.
Btw, Go2 Foundation has some amazing people on staff who answer your phone calls and if you want to add a Phone Buddy they will match you with someone who has same disease, stage, treatment and gender. You don’t have to face those dark moments alone.
Thank you Denzi. Nodule is located upper left lung 1.9cm.
Great idea in regards to the MRI. I will do that!
This is all very early. I had the PET yesterday and will pick up the imaging and report either today or tomorrow.
My next scheduled consult is 10 days away (10/18) . I am being seen at Olive View Medical in Southern / CA. I'm a bit frustrated that I need to wait that long. They may not be concerned because it is "slow growing" but it is in me and I am ready to attack this. I will call and see if I can get in there sooner.
Thanks to a respected friend I am also able to see Chief of Thoracics at Cedars (Los Angeles) on Friday. I may have the option to switch over there.
I'm also on MediCal. Learning how to navigate the insurance system.
Excellent idea getting into Cedars. Let us know what you learn. Also it is best to have the dr interpret the report because there may be things visible on the PET that are not cancer related. A bright spot on the PET just means there was increased metabolic activity. Exercise can cause a high reading.
Also, whatever recommendations you receive from Cedars can be administered at the hospital closer to home. That said though, if you have surgery I would have it done at Cedars.
Thank you Denzi! I really appreciate your insight and ideas. Very, very helpful. I am not sure I will even look at the PET report before seeing the doc. I've read CT reports before and scared myself unnecessarily.
Are you in So Cal? I ask because it sounds like you are familiar with Cedars
Also --- yes --- Go2 Foundation looks like a great resource. I am definitely going to explore. Once I learn more I would definitely like to take connect with folks who have had a similar diagnosis
Welcome BlueSkies. You've already connected with one of the most knowledgeable people on this site - Denzie is great, and her knowledge base is extensive. Waiting is the hardest part for all of us. The anxiety that comes with waiting is tough to deal with, so the more you keep your mind busy, the better. Write down your questions so that you don't forget them when there is so much going on during the visit. I take a friend with me to take notes and listen - it is amazing how much more a friend hears because we get so overwhelmed. When I can't take a friend, or when I suspect it is going to be a complicated visit, I often bring a tape recorder along, too. It helps when I want to go over things. My mother has breast ca, and when we go I take copious notes. The oncologist will often wait and let me catch up and/or clarify what she has said. Connecting with people who are in a similar situation is also good. Be careful about doing your own research - things have changed and are continuing to change so quickly that the information is often "old" by the time it is published. The scariest part is survival predictions because they do not reflect what is happening now. So many of us, especially for yours since it was caught early, are living good lives well beyond what you will read. Choose the oncologist and hospital that are best informed on newer treatments. Even if you do that, don't be afraid to get a second or even third opinion if it would make you feel more comfortable. Please keep us informed!! Praying for the very best for you and your support system
Thank you so much for reaching out with your advice and well wishes.
I have all my images and reports for a second opinion with a thoracic surgeon tomorrow. My two friends are going with me tomorrow to be extra eyes and ears. They are an older couple and both are very knowledgeable as they are both blood cancer survivors. They know all the lingo and they’ve been through this drill many times. One of them was actually in a trail for Gleevec (One of the first targeted oral medications for cancer) back in the early 2000s.
I’m very lucky to have their support
I haven’t even met yet with the current team that has been seeing me. My petscan was just two days ago.
Question- I have not looked at the PET report. I don’t think I will until I’m with the doctor. I don’t want to unnecessarily frighten myself. I’ve done that before with CT reports.
Will Petscan report tell me definitively what stage this is at?
So glad you have friends going with you who know the drill - that is awesome. As for the PET Scan, I don't believe the report will tell you what stage, and if it were me I wouldn't read it since many things "light up" that could be "suspicious" and only your radiologist and oncologist can figure that out - no sense in scaring yourself half to death when it might not be warranted. That said, I always read the first report after the first appointment and from the second appointment on, do read them ahead of time since I will then know what can be less important and what needs attention. If I have questions I use the patient portal and contact the oncologist.
I had 2 lobectomies, the first one at Cedars and the second one at St. John’s in Santa Monica (because my surgeon moved over there). Care at Cedars was excellent and better than at St. John’s, though St. John’s was also quite good. Once my cancer progressed from stage 1B to stage 3 or 4 (I am not completely sure which it is), I switched my care to City of Hope. They have outstanding medical oncologists, specializing in lung CA. I can’t speak of their surgeons, but highly recommend the medical oncologists there. They are certainly up on the latest treatments. Only problem for me is that it is far away (I live in WLA) but, so far, it is worth the drive.
You are very lucky that this is found at early stage. Go to a large cancer center and have it removed. When they do this make sure that you have a biomarker test done on your tumor. You will probably not have a recurrence if it is not in your nodes but be ready in case you do. Good luck to you!
You have my identical diagnosis except mine was lower left and my Dr skipped the biopsy. I had a lobectomy 10 weeks ago. I am a triathlete and did a sprint distance at 6 weeks post surgery. They wanted me moving as soon as the wound healed. Best of luck.
First of all I have COPD. I have a tumor in my right upper lobe of my lung which was cancer. I smoked for a lot of years also. I couldn't have surgery because of my COPD, so I chose Radiation. 5 treatments. The tumor shrank from 2.0 cm to 0.9cm. So I'm now waiting tell Feb. to find out if it started to grow again. (6 month wait) I'm optimistic.
I wish you the best in which way you go, surgery or radiation.
My first LC was in my upper left lobe. It was found accidentally, stage 2 squamous cell and emphysema. I had a history of smoking, but at that point had been smoke free for about 13 years. That was 6 years ago. A thoracic surgeon removed the upper left lobe, and tested several lymph nodes which were all negative. A year and a half ago I lost the upper right lobe to stage 1a squamous cell LC, but I am still here.
The first time I was told that I was cancer free, I was fine, I had my life back, no further treatment needed, that was not correct. I learned through experience that it is best to go to the best cancer center you have access to.
After the first LC, at the recommendation from an ER doctor, I went to Roswell for my post cancer care. However about a year later I was still NED, and a cancer center opened much closer to home (15 minutes compared to 45). So when the second LC was found, I went to the same thoracic surgeon who did the first one, but I was under the care of an oncologist in the local cancer center. I was told because it was stage 1a and was removed, no further treatment was necessary. My oncologist said the tumor was very close to the plura, so he asked another Dr. in his office for his opinion, they both decided I was fine, no further treatment necessary.
When I finally got a copy of the surgical report, I read that there was some plura involvement, which made me nervous, and no longer so sure of my cancer care so I went back to Roswell. I had my first appt yesterday and found out that if I had been going there a year and a half ago, they would have suggested some kind of chemo because the section of the plura that was tested was positive for squamous cell.
So my advice, be very grateful that it was found early, and get the best cancer care available to you.
I want to thank you all for your welcome, good wishes and advice. I wanted to provide an update. I'll try to be succinct. This is a bit long though
Friday 10/11/19
-Met with thoracic surgeon at Cedars for a second opinion. Actually it was a first opinion as I do not meet with my current health care professionals until this coming Friday.
-We went over my PET results. Unfortunately two smaller spots appeared in SAME lower left lung. Doctor recommended biopsy to determine whether these are cancerous. My current doctors have the same plan to biopsy. He said (Cedar's doctor) they looked similar in structure to the one on top. Perhaps I should be more positive, but I am kind of assuming they are.
-Lymph nodes look stable
-If they are cancerous it will be determined if they are primary or metastatic. This will help determine treatment and next steps.
-At this point the doctor is thinking surgery OR surgery AND med treatment (Immunotherapy OR/AND chemo)
-Possible MRI discussed depending on tumors.
-Also in my notes Type of immunotherapy PDL1 Checkpoint inhibitor) - I would like to read up and learn more about this
NOTES / THOUGHTS
-It was GOOD to finally get a better idea of what is going on in my body. A bit frightening as well. Well...... really anxiety producing
-Both myself and my two friends (The couple above) were impressed with the doctor we met on Friday / Cedars. At this point I plan on switching to Cedars from Olive View. Olive View is County run. At Olive View I am seen by a team of doctors that rotate. They are there for a few weeks then go back to UCLA... then they return. Of course there is one head of department always there and ultimately in charge. They are a teaching hospital affiliated with UCLA. This is my understanding at least.
At Cedars it seems there is not this kind of rotation. I'd be seen by this thoracic surgeon ,an oncologist etc. Cedars feels more efficient. We are kind of talking about private vs public.
While I think the care at Olive View has been good / competent I just feel more comfortable with Cedars at the moment
-It was so good to have my survivor friends with me at the consult with the Cedar's doctor. They are angels. At one point my head was swimming as I listened to the doctor and all these new words. My friend saw this, grabbed my notepad and started writing. They also asked important questions.
-The doctor at Cedars was very professional. Friendly but business.
-This weekend was a mixed bag of emotions. On Friday night I felt great as I was encourage by the Cedar's doctor and his optimism as well as my survivor friends.
-I feel that as the patient I have been pretty proactive. That said, the waiting around during the steps has been kind of rough. My mind can easily get carried away. Talking with friends has been helpful. On Friday evening I had dinner with some friends. It was so nice to not have this on my mind for a few hours. I go through moments feeling somewhat ok and other moments where I feel like I have the weight of the world on my shoulders. Panicky at times
-Physically I feel better than I have in months. Consistent exercise and eating better has helped. I've shed some excess weight over the past month and a half due to this as well as (unfortunately) anxiety. I tend to lose my appetite when I am stressed or anxious.
-Exercise also help me immensely. Saturday I chose to not workout as air quality in Southern California has been poor due to recent wildfires. Sunday I did a morning HIIT (High Intensity Interval Training) workout at Orangetheory. Sunday evening I went on a full moon trail run in my local foothills)
-I feel like I have been pretty proactive as a patient. I tried to schedule the next biopsy with Olive View but am being held up a bit due to some standard hospital processes. In other words, the Chief Radiologist needs to sign off / prioritize. I was told by the scheduler that If I did not hear back by tomorrow lunch to call them. I need to be patient. They say this is slow growing BUT this garbage is in ME. I want to go go go. let's do this! The waiting and "not knowing" has been kind of rough
-Health coverage. On Friday after my appointment I went to the county health office to learn more about my coverage and discuss the process for getting into Cedars. The liaisons were VERY helpful. It looks like this is a definite possibility. I would need to opt out of my current plan and go straight Medi-Cal. Doing so opens up many more options in regards to my treatment. I picked up the forms to do so. Will be reviewing today during work down time. The liaison said that this could be done relatively quickly. She also gave me a phone number to expedite the process.
_Tonight I have a meeting set with someone who was in a similar situation regarding insurance. This should be helpful
-This Tuesday the head office lady at the surgeons office returns and I will call her to get on the same page re. switching to Cedars.
-Friday I have consult with current providers (Olive View) It will be interesting to hear what they say. Perhaps I wait to initiate "change of care" until after this meeting. Thoughts?
-I continue to be humbled and touched by the love, prayers and support of my growing small army of supporters. Since 2004 I have been involved as a coach for The Leukemia and Lymphoma Society's Team in Training. I have a lot of connections to the cancer world. I am so very fortunate and grateful.
-I am also thankful that I found this group and appreciate the positive thoughts and advice.
Thank you for reading. I f you have any thoughts I would happy to read.
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