Early Stage Lung Cancer

[Jamie Gonzalez]

I was diagnosed with Stage 1B Non-Small Cell Lung Cancer 10-years ago.  Lung cancer was not my first diagnoses.  I was missed diagnosed with Pneumonia and then Tuberculosis. I was told I didn’t have lung cancer because of my age.  It wasn’t until 5 months later after a lung biopsy I received the diagnosis of Stage 1B Non-Small Cell Lung Cancer. 

It was a shock to me and my family as we do not have cancer in our family, and I do not smoke.  I was 35 years old at the time and had my stepdaughter in her senior year in high school and two younger children in elementary school.  My life changed the moment I received my diagnoses.  Having to tell my husband and parents the diagnoses was the hardest thing to do.  My kids were young and didn’t understand.  Was I going to be around for my kids and grow old with my husband?

Next was to just do what I needed to do to move on with life and live everyday to the fullest.  I met with my surgeon and oncologist at UCSF a couple weeks after my diagnoses.  Surgery was scheduled a week later.  Going into surgery was the scariest and most unknown  experience in my life.  I was not sure I was going to wake up after the surgery to see my kids and not knowing if they would understand what happen to me?  As you know I made it through the surgery and recovery.  Recovery after having my lower right lung removed was painful.  All I wanted to do was get home to my husband and children. 

I was told I was cancer free but it was still very scary to think I could get cancer again.  And was told people that have had lung cancer and get the reoccurrence of cancer don’t have much success of survival.  The most important thing and the reason I feel I just celebrated my 10 years of cancer free is because of Determa RX.  I truly believe if I was not offered this test I would not be here today seeing and living all the milestones in my life and my children’s life.  Determa RX has given me and my family a piece of mind that I have done everything possible to live a long life.  To be offered this test was amazing and a no brainer to have it done.  You have to do nothing.  They use the cells they already have from your surgery.  What this test does is determines if you need to have chemotherapy or not.  If it comes by high, you need to have chemotherapy to kill all those cancer cells in your body.  If it is low, the chances of you having the reoccurrence of cancer are slim.  Of course, mine came back high.  I had four rounds of chemotherapy after I recovered from surgery. It was not easy but I did it so I would not have to live and go through cancer again.  Not just for me but for my family too.  It was not just me that went through cancer my whole family lived through this traumatic time.  There are things I don’t remember about it but if you ask my husband and mom they remember every moment.  Determa RX is the reason I’m here today and why I can share my story.   

[Bob P]

Scary for sure but I'm glad you had a wonderful outcome and you are CA free after 10 years. I'm sure it will never come back.

My story is similar but thanks to a wonderful doctor, they caught it very early and I didn't need and chemo or radiation.  

I'm CA free for 2+ months now and I don't expect to come back (thinking positively)!

Bob P

[Jamie Gonzalez]

Congratulations on being cancer free. Positive is the only way to be. You should really look into the Determa RX for yourself as well. It's for us patients that have had early stage lung cancer.  It just gave me a little more peace of mind. 

[Christinee]

I’m in the same situation, stage 1A nsc. I just had my middle lobe removed.

 I have a follow up tomorrow and will ask about Determa, thanks!

[Jamie Gonzalez]

Recovery is not easy but the worst part is now over.  Wishing you the best. 

[Sophia]

Diagnosed in July 2022 with Stage 1B NSCLC nodule on RLL. Lobectomy Nov. 2002. All clear, surgeon said. Cancer free. No need for chemo or radiation. Do nothing but wait and watch. I want do do what II can to prevent recurrence. Never had a serious life-threatening illness before. I've been looking for complementary/alternative care at integrative cancer centers, i.e. infusions, lots of supplements, diet (not KETO as I am not keeping weight on) and exercise. The center I thought sounded best is out of my league financially. Infusions there would cost me at least $60,000/year...and that does not included supplements. I can do the supps they provide and their diet and exercise on my own. But no infusions I can afford.

 Does anyone know of a good integrative cancer center with infusions etc.? Until recently I was reading and listening to talks by Thomas Siegfried and I feel his approach to managing cancer--molecular, not simply genetic--is the future, but not much has happened to implement his approach.

More important question is whether I even need to chase after all sorts of alternative treatments if I am 1B with a successful surgery, a clear CT in March, and otherwise healthy. Is this overkill resulting from fear of recurrence? If I focus on diet, exercise, supps, and lowering intense anxiety about all of this, should that be enough? If recurrence happens, and I didn't do any alternative treatments I could afford, I'll kick myself for missing the chance.

Is it typical to get biomarkers and mutation info for a 1B patient? The oncologists say it is too early at my early stage. I don't understand why. If I have EGFR or any of those other markers I don't really understand yet , why not find out now? 

Other things I'm looking at: Anvirzel from Oleander plant in Honduras; hyperbaric oxygen.

All of my frenetic anxiety and worries aside, I can acknowledge that I am extremely lucky and grateful to have caught the cancer early on. 

Any advice for a confused 1B reading about NSCLC cancer and looking for ways to ward off recurrence? 

[Tom Galli]

Sophia,

You should contact your surgeon's practice to have biomarker testing performed. Here is information on biomarker testing. The pathologist that performed the diagnosing histology is required to keep your tumor material sample for an extended period of time. Because your stage was IB, you may need to pay out of pocket for this additional testing but the cost is well worth the knowledge gained.

I'm not a fan of alternative treatments or therapy. Many claims are advertised, but no valid statistics justify the claims. I've been associated with this Forum since 2015. Before that, I had 6 years of involvement with an online lung cancer support group. In all that time, everyone who "invested" in alternate therapies paid a small fortune to die at an accelerated pace. You mention hyperbaric oxygen. I was offered an "opportunity" to participate in a clinical trial involving chemotherapy in a hyperbaric pressurized oxygen chamber. I didn't choose this trial and found out later the trial was halted early because every participant progressed during treatment.

When I was diagnosed in 2005, cancer sure-cure remedies were widely advertised on the Internet. Here , here, and here are examples.

The best way to ward off a recurrence of lung cancer is to abide by your screening scan schedule. If you get biomarker testing complete, you'll have another advantage. You'll know ahead of time what targeted therapy or immunotherapy agent will work best against your type of lung cancer. Moreover, radiation oncologists have precision radiation techniques to "sure kill" any type of lung cancer tumor when found early. That is why screening is so important. Finding a recurrence early gives you valid and effective options to deal with it.

Stay the course.

Tom

[BridgetO]

Hi Sophia, I agree with Tom that the best way to ward off recurrence is to follow your screening scan schedule and also to get biomarker testing. My HMO did biomarker testing automatically even though my NSCLC was 1a.  I do differ with him somewhat about complementary therapies though. I'm copying here something I wrote a couple of weeks ago on another thread here, where I elaborated on my experience and views on complementary therapies, for what it's worth. I was fortunate that the local clinic I refer to offered the therapies I listed for $150 per month,   I wish you all the best.  I Keep us posted!

"Hello! You've gotten some good advice from folks on here about caution. I've had 3 primary cancers. My most recent was a stage 1 NSCLC, which needed only surgery (lobectomy) and ongoing surveillance. My second one was a rare and aggressive gynecologic cancer, stage 3, for which I had a huge surgery, concurrent radiation and chemo and additional chemo. My first was a stage 1 breast cancer, with lumpectomy and radiation.  Beginning with my first cancer diagnosis and then again with the other two, I went to a local clinic that offered complementary therapies. I had acupuncture two or three times a week, supplements and Chinese herbs, and shiatsu massage twice a month. The treatment was directed by a naturopath, who knew a lot about cancer and conventional treatment and who was very supportive ov conventional treatment. I ran all my supplements and herbs past either my doctor, or when I was having chemo, through the oncology pharmacist.  The onc pharmacist advised against one supplement because it contained a raw animal ingredient, not a good idea when immunity would be impaired by chemo, and my thoracic surgeon advised against one Chinese pill because he didn't know what was in it. In both cases I followed advice.

I found acupuncture helpful with side effects of chemo, especially nausea, and also great at combating anxiety.  The herbs and supplements? I'm not sure whether they helped or not, but today, 15 years after my first cancer, I've had no recurrences and I'm NED on all 3 cancers.  With my gyn cancer especially, which had a "dismal prognosis"  this is remarkable.  I really didn't expect to live so long, (12 years after that Dx)  much less be NED all this time.   So I'd use these complementary therapies again.

Everybody's different in their comfort level with things that are "unproven" in a Western scientific sense and I think each of us needs to make our own decisions about this stuff. I do have some things to suggest for people who want to try complementary therapies of any kind

1.  Think of them as "complementary" to your conventional medical treatment, not  as "alternative". For example don't abandon your chemo in favor of "green drinks".

2.  Avoid anything advertised as a sure cure. There really isn't any. I  like to think in terms of what might make me feel better or might be helpful.

3. Beware of anything that seems too far outor is illegal. I know that "too far out"  is  not an objective criteria, but do use your common sense.

4. Be careful of spending TOO much money on these therapies, Again this is an individual thing. But don't use the rent money.

5. About diet-- Healthy food is great, but some treatment regimens, like chemo or radiation, can make eating a problem (some foodsmay taste/smell awful, problems swallowing, nausea, diarrhea, etc, etc). In that case getting enough calories and fluid needs to be the priority, even if it means not following what might otherwise be your " ideal "diet. If all you can eat is ice cream, do it.  If it's long term, see a dietician.

So, there's more of my history and opinion than you probably want!"

[Karen_L]

Sophia,

You don't mention whether your oncologist was a lung cancer specialist or not. I'm a little surprised that you'd be told it's "too early;" it makes me think you might set your mind at ease if you set up a second opinion with a lung cancer specialist. 

I believe what I can do to lower the risk of recurrence is eat healthily, maintain a healthy weight-- working on that--, exercise, and work closely with doctors. FWIW, my brilliant oncology radiologist will not recommend supplements because there's not enough data; in fact, she cautions against some because of their negative effects on cancer and/or cancer treatment. 

The hardest aspect of lung cancer for me has been accepting there is no way to predict what will happen with the cancer. I may progress, I may not. It has helped enormously to speak regularly with a counselor. I recommend it!

I wish you peace on your search for information. 

Karen