LaurenH

Hi all-
Sorry it's been so long since I posted. Since my original posting I had two biopsies, one of the armpit/breast area and another of my lung. Luckily they both came back normal! I was so relieved to find this out. My oncologist says I am now in maintenance/monitoring scanning. Since I found this out I have been very busy spending time with family and friends, going back to a "normal" lifestyle. Now I just need to focus on building up my lung function so I can get back to an active lifestyle again. Thanks all for your thoughts and posts, it means a lot to know there's a community out there to turn to. I hope others are having luck and getting some good news as well!

I'm here - so glad I found this group and site.  I'm one of the fortunate survivors - upper left lobe - just three radiations over 12 days - but ... next time may not be so lucky.  I thank God for every day and also wonder if next time - well if it will be worse. 
I don't take pills, don't get treatments - so yes, I'm one of the lucky ones.
 

Hello ViviAnn, after my diagnosis last November, I received a call from the palliative care office at the cancer center where my oncologist is. She said my oncologist always has them give his new patients a call, to briefly explain the services they offer. Since she called me during the day while I was at work, I couldn't speak to her for very long, and promised I'd be in touch. I finally ended up making an appointment a couple of months ago and had a great discussion with the nurse practitioner there. She explained that if I am having pain issues (I'm not, currently), she is able to give me options, both medical and just practical information, for dealing with it. For example, Tylenol doesn't usually work very well for me, but Advil does. However, Advil isn't advised for pain relief with the oral chemo I'm on (Tagrisso), so they could prescribe something else that would work. My biggest issue is that I experience a lot of "scanxiety". Although I'm not completely against treating it with drugs, I'd rather not take something every day. She gave me a couple of ideas for relaxation and being able to acknowledge and work through those feelings, and also said I could just take an anti-anxiety med for a few days just to get me through it. That's something I would feel comfortable doing, and in fact I plan to give her a call before my next round of scans.
When I mentioned to a couple of my friends that I'd seen the palliative care nurse, their eyebrows went up a bit. I explained the difference between palliative and hospice care. Even I had been reluctant initially, but it's so good to know that there are options like this to deal with symptom management. Thankfully, my symptoms right now are fairly minor but I think it will be a plus that I'm already "on their radar" when symptoms become harder to deal with. 
Hope that helps you a little.
JulieG.

Tom, I am so happy to read your great news!! Enjoy the next scanziety-free 11 months! Thank you for everything that you do for this community.
With INFINITE gratitude,
Lauren
--
Digital Community Manager
LUNGevity Foundation
 

Hi, Ray. It's all overwhelming right now; all of us understand it. But I think you'll find hope I the fact we have so many long term survivors here. We've seen so many advances in treatment the last few years and that gives me hope.
Keep us posted on your progress. We've walked the same path and are here for you.

Rbarlow,
In DFW area, go to Parkland Hospital.  Here is the link.  Notice their mandate.  
As for the articles you are reading, I suggest you read this information about lung cancer. I've read a lot of information about lung cancer and I've never encountered anything that statically correlates tumor size with malignancy.  An 11 mm tumor is something that needs to be checked out but mine was 77 mm long and I'm still here.  I gave you a more detailed response in the General area of the discussion forum. 
Stay the course.
Tom

Hi, Roger!  Nice smile.
Welcome, jump right in, the water's fine.
Teri

Oh, cool, I'll have to check it out--now that Game of Thrones is on hiatus again.

Teri,
Agree, The Emperor of All Maladies is a superb read and it provides real insight into how many curative therapies evolved and a unique, and understandable explanation of the genetic nature of all cancer.  Moreover, there is a PBS television series that one can stream that features the author and covers the book's subject matter.
Stay the course.
Tom

I had my annual CT scan with contrast on August 22nd and my consultation with my medical oncologist today (Aug 28th), and the result: clean scans and continued NED.
Yes I am a long tenured survivor but during today's consultation we spoke of how persistent lung cancer is.  Moreover, I learned that one cancer diagnosis often begets another.  So there is good reason for me to keep the twice yearly oncology consultations and the annual CT.
We also spend a lot of time reminiscing my time in active treatment.  Doc has a superb memory and he filled in my gaps and provided additional insight into how and why he suggested stereotactic radiation after my third line chemotherapy failure.  We also discussed the radio oncologist's aggressive treatment of Stage IV tumors in multiple locations of the body using SBRT and IMRT techniques.  This new approach is moving the survival needle for late stage diagnosed survivors to the right! 
So I'm celebrating clean scans and declare an end to scanziety for 11 months!
Stay the course.
Tom

Keith,
How about that!  Good for you! Teri's advice is good.  Please do ensure you have regular follow-up scans.  If something changes, the scan will find it early and early finds yield successful treatment. 
Stay the course.
Tom

They called today with the results of my PET Scan and said they believe the nodule is benign. 

Ernest, Ray and Rbarlow, welcome here.
I try and promptly welcome all the new folks but see you've met one another and are properly introduced.  I'm Tom and we all have but one thing in common.  We all are experiencing or have experienced life on the staging and typing trail.  My trail started on February 4, 2004 by coughing up blood and after a CT resulted in a diagnosis with a 7 cm long tumor filling the main stem bronchus of my right lung. One day I was fine, not even short of breath, and the next I was not.  A biopsy confirmed non small cell, Squamous cell, lung cancer.  
You have nodules now and hopefully they will remain just nodules.  There are lots of causes and here is my go to source for the causes.  Staging by the way is a way of describing the extent of cancer.  Typing results from a pathologist examination of tissue from a biopsy.  Biopsies can be obtained by a needle, a surgical procedure, or as part of a surgical resection of your nodule.  The results of staging and typing allow a treatment plan to be formulated. 
One of our members jokingly referred to me as a Jurassic Era survivor and indeed I've been around a long time.  I sum up all my experience with but two suggestions.  First, know the enemy -- learn about lung cancer.  I hyperlinked material from our Lung Cancer 101 resource.  I suggest reading every section from beginning to end, perhaps three times.  Second, read my profile, the About Me section.  After reading, I suggest that if you have lung cancer and I can survive, so can you.
I sincerely hope your journey on the trail is a short one.  If not, then this place is where you'll find an unusual amalgamation of knowledge and experience that may advantage your treatment. So, welcome here.
Stay the course.
Tom

Hi, Ernest,
Lung nodules are not always cancer--they can be scar tissue from an infection or other causes.  The PET scan will help determine whether there is suspicious metabolic activity--cancer cells are hyperactive when it comes to using glucose, so the PET scan will show the nodule as "lit up" if there is cancer, and it may also show whether any cancer has spread.  The PET scan isn't foolproof, and you might need further tests, like a biopsy, to determine whether it's cancer.
I know it's scary, but try not to get ahead of yourself.  If it IS cancer, and it's a very small tumor, it may be quite treatable.  I just had the upper left lobe of my lung removed for a small nodule that turned out to be cancer.  I had the surgery on July 10, and I'm feeling great.  I don't even have to have chemo--just periodic scans to make sure everything stays happy.
Hopefully you will get the results soon and you will get good news.
Welcome, glad you found us.
Teri

Julie,
I took the time to read Tomm's posted sources suggesting cannabis is a reliable and reputable cancer treatment agent.  I note three points from Tomm's Current Oncology Journal citation:
(i) cannabis may relieve pain and discomfort of side-effects; [emphasis added]
(ii) the Author's conclusion paragraph  - "Preclinical data suggest that cannabinoids could have direct antitumour activity, possibly most impressive in central nervous system malignancies. Clinical data about the effects of cannabis concentrates on cancer are as yet unavailable. Oncologists could find cannabis and cannabinoids to be effective tools in their care of patients living with and beyond cancer."; and [emphasis added]
(iii) the author's conflict of interest disclosures are all commercial companies growing or marketing cannabis.  Therefore, the author was likely paid to produce the journal article.
The National Cancer Institute citation clearly states: "At this time, there is not enough evidence to recommend that patients inhale or ingest Cannabis as a treatment for cancer-related symptoms or side effects of cancer therapy."
While Tomm may have benefited from taking cannabis in his treatment, the National Cancer Institute does not have sufficient evidence to recommend cannabis for direct cancer treatment or side-effects caused by cancer treatment. 
No doubt, cannabis produces a euphoric feeling that is desirable, but no medical authority I know of has deemed it ready for prime time therapy.  And yes, lung cancer survivors deserve a little euphoria in their lives!
Stay the course.
Tom
 

Thank you Tom. I did just see my primary today and he has lowered one of my bp meds.  It helps to have you validate my experience. I am just reading your reply today.

Crap--sorry to hear that news.  I was fortunate enough to be early stage so I'm not much help in terms of treatment or what to expect.  Thankfully there are some very knowledgeable people around here who can give you more guidance as far as that goes.
I know that for myself, personally, I can't stand the thought of anyone worrying about me.  I think it's nice that you made him laugh, and that you are having this opportunity to connect after so many years of estrangement.  My guess is that he's feeling some regrets about not being closer to you--before I had my surgery, I was doing some of that soul-searching.  I'd suggest just kind of following his lead.  Maybe your half-brother can keep you informed about the details and you can just provide whatever emotional support he seems to want.  
Just sending you a hug, if that's OK.
Teri

Daughter,
I am so very sorry to hear of your dad's recurrence.  That is what it is called when cancer returns -- a recurrence.  And unfortunately, recurrence with lung cancer is common.  I have non small cell squamous cell lung cancer and experienced four recurrences after treatment that showed me to exhibit no evidence of disease or NED.  Because lung cancer and in fact all cancer for that matter recurs so frequently, the treatment community has moved away from the word cure.  Remission is still used but the definition has narrowed to cancer that stops growing either as a result of treatment or not.  Here is a good summary of lung cancer that will acquaint you with basic terms.
What is the recurrence timeframe?  Mine were 6 to 8 months after last treatment.  It is not unusual that the duration is shorter or longer.  Everyone's cancer is somewhat different.  How effective will his second line treatment be?  The Lord only knows.  Cancer is a disease of one's genes.  Everyone's genetic structure is different thus on reason for the variability in treatment outcomes.  But, chemotherapy kept me alive for 2 years till a new treatment emerged from research to cause me to achieve NED.  In fact, I've lived nearly 14 years after diagnosis and many in fact on this site are long term survivors of lung cancer.  Those with small cell lung cancer are following emerging research in targeted therapy and immunotherapy.  These new methods are promising advances for small cell treatment.  Read about these here at the Clinical Research Study down arrow.
You may point your dad to this site as a place where he can understand and ask questions about his treatment and interact with survivors. Questions?  This would be the place for those.
Stay the course.
Tom

The Lung Cancer Support Community (LCSC) is the largest online lung cancer support network with over 11,000 members. LCSC members are people living with lung cancer, caregivers, medical and health professionals, and advocates, who are unified in our common goal to improve survivorship.
Users can safely share information on LCSC. Member-generated usernames help keep information private and for those who wish, remain anonymous.
Forum moderators help to maintain the integrity of the site, assisting new members, and participating in discussions to offer peer to peer support.
Anyone may read the forums, but you must register and be logged in to post.
Overview of Features
Forums and Discussion Boards
There are 27 forums with topics ranging from Survivor Stories to News and Advocacy to Living Well with lung cancer. Each forum has multiple discussion boards where you can post questions and thoughts that you’d like to share with the community. Or you can weigh in on discussions that other members have posted about topics that are relevant and interesting to you.
If you’ve just joined LCSC, introduce yourself in the Welcome New Members forum. Tell us a bit about yourself and your motivation for joining the community. If you are someone living with cancer, tell us as much as you’re comfortable sharing about your diagnosis and prognosis. Many of the other survivors who are members have been in similar situations. While no two journeys are the same, it can be very helpful to connect with someone who has been on a similar path. And you’ll find that an online support system can be very empowering and uplifting!
Blogs
In this section, users can create personal blogs to tell personal stories, share news, and give commentary on current lung cancer topics. If you enjoy a particular blog, you can follow it by clicking the Follow button in the top right corner of the page.
Photo Galleries
In this section, users can create personal or shared photo galleries. Let people know a bit more about your life by sharing photos of the people, places, and things that are important to you.
Chat
If you need someone to talk to or want to make a new connection, click on the Chat tab on the top menu bar. On the right hand side of the page, you’ll see a list of users who are currently logged in and ready to chat!
Calendar
The Calendar section shows which members are celebrating birthdays as well as upcoming lung cancer events. Whether you’re looking for a support, advocacy, or fundraising event, you’ll find all of the important information here.
We are glad that you’ve joined LCSC and look forward to getting to know you!

Susan,
I am so glad to hear your good news!! Congratulations! We are eternally grateful for YOU and all you do for this community!
With gratitude,
Lauren
--
Digital Community Manager
LUNGevity Foundation

Good morning, Mary Lou.  We're glad that you found us.  This site is an excellent resource for patients, caregivers, and family and friends.  Can we point you in any direction?
You might check out this link to help you get started: 
 
 

Hi Brandon,
I am doing great! It's been 13 months since my diagnosis and surgery and last month I was cleared to resume my normal physical activities! So I have been hiking a lot lately!  And I am now promoting the Breathe Deep Walk in Arizona for October! I am also participating in the Arizona Lung Force walks coming up in September and November. Good luck with your follow-up! I will keep you in my prayers! ✨
~Yovana 
 

Hello again, its been a while since I have been here. Just wanted to let the great folks here on Lungevity know I am recovering about as normal as possible after the removal of my upper right lobe surgery on May 18th. Hey! exactly 3 months to the day. The pain in the chest and back are pretty much healed, still have the daily zingers, which I understand are normal, but other than that life is good.  For those who might be having some  of the normal worries and concerns facing a lung surgery, I will be honest its not a walk in the park, but it is very much doable. Mine was open surgery and I was blessed with clear margins and no other sign of Mets at all, and with the Lords grace no chemo or radiation needed at this time. My first 3 month doctors visit is coming up the first of September and I CAN NOT tell  a lie I am pretty nervous. But praying that all will go well, and NED will be my new motto. I will keep everyone here in my thoughts and prayers as well, and those who feel as though this might be to much to bare, don't try to take on this trial on your own, ask the Lord for his help. Understanding Grace is the key. We do all we can with adversity, we do our part, and he will make up the difference. Wish you all well, I will let you know the out come of my up coming procedure.
 JWH... 
 
 
 
 
 
 
 
 
 
 
 
 
 

Hi there,
I am happy that your mom is allowing you to go with her to the doctor.  One important question to ask is if more than 50% of her cancer cells test positive for PD-L1.  If so, Keytruda has become the recommended 1st line treatment for NSCLC with PD-L1 mutation, at least for early stages.  Perhaps the doc is waiting to see how she responds to Keytruda before making a suggestion for lobectomy.  Another question would be why only Keytruda and not Keytruda and Chemo together for the first 8 sessions - the latter increases the effectiveness of the overall treatment.  And as Pegi said, there are no dumb questions and be sure to take a notebook to write everything down. 
I used these lists of questions to give me ideas of other questions to ask (there is a tab specifically for immunotherapy) https://www.lungevity.org/for-patients-caregivers/asking-right-questions/questions
When my mom was initially told her cancer recurrence was inoperable and that she would be treated with Keytruda/Chemo, she felt she was just buying time. Her ocologist (which doesn't have the most compassion) said that she was indeed buying time. But she would be buying months and maybe even years.  I personally do not feel you are giving your mom false hope.  The more I study Keytruda and see the amazing help it is giving people (including a relative that has used it for the past 2 years for advanced stage melanoma), it is easier to feel optimistic.  The fact that your mom is already healthy is good for her.  I also feel that when we believe something, it can either help us or hinder us.  Helping her to get over the idea that she has a 2 year expiration date may help her health-wise in the long-term.
I'm so very sorry you are having to travel on this journey with your mom.  No matter how old we are, it's still our momma who is sick and fighting for her life - it's not easy.  Take Care
 

Can anyone discuss your report of your dad's condition? Sure, but with lots of hesitation. Small cell is a beast! Therein, my reluctance to discuss the implication of his recurrence and mets to the liver, bone and brain.  From my reading (and likely yours) your dad's pattern of metastasis fits the typical profile for small cell.  And as far as brain mets go, I see very little difference between "much worse" or "just worse."  Small cell metastasizes quickly and now chemotherapy is the only curative weapon available.  There are trials and recent advances in immunotherapy in certain instances but there is that dearth of research ever present that hamstrings doctors treating any form of lung cancer.  Unfortunately, small cell gets a double dearth.
Does that mean give up? I don't believe so because we hope his second line treatment arrests his disease.  But, it may only slow the disease but in so doing it extends life. I was at the same point your dad is at now.  I have Squamous cell NSCLC and experienced four recurrences after NED treatments.  I was mid-point into my fourth line treatment of Taxol and Carboplatin and my oncologist was running our of bullets.  My wife found the magic bullet -- stereotactic radiation -- in her reading.  We had booked a Hawaiian cruise and thought of cancelling.  But all my doctors strongly encouraged us to go cruising and we did.  We took some time to live and while that trip was 10 years ago, we still share pleasant memories.  So there is time.  There is time to rediscover your father and make pleasant memories.
Stay the course.
Tom