Jump to content
Kathleen E

Just diagnosed and very sad

Recommended Posts

Hi everyone,
My good friend suggested I find a lung cancer forum to brighten my spirits after the NSCLC diagnosis just this month. I’m meeting with my oncologist tomorrow to find out what stage I have and discuss treatment options. Having done a lot of research and dissection of the pathology reports I’m fairly certain it is IIIc. 

Needless to say I’m in disbelief. I’ve always been healthy and rarely ill. I have no symptoms, my PFT was normal and labs perfect except for the elevated monocytes. I have a primary lesion in my lower anterior right lung. Another lesion is in my upper mediastinum on my left side. Both are Adenocarcinoma. The bronchoscopy found no cancer in lymph nodes. I asked the PA who gave me the diagnosis if these could possibly be two primaries and she said no since they were the same cancer type. 

I’m very saddened by all this as I just retired at 65 having worked all my life. I’ve been so looking forward to doing all the things I never had time to do, spending time with friends and family and taking adventurous excursions, exploring our beautiful planet. Having read this paragraph I realize how very selfish it sounds. But I feel I have been given a death sentence after reading the statistics of survival rates. 
 

Thanks so very much for listening. 
 

Kathleen

 

Share this post


Link to post
Share on other sites

Kathleen,

You are at the lowest point in your battle with cancer right now. As you get more information and a plan to attack the cancer you WILL feel better. There have been many improvements in both treatment, treatment effectiveness and side effect control that you should not give up on your retirement dreams. Odds are you will be able to do many of them.

Please keep us posted and give as many details as you can. This board is a wonderful source of information. Drs can tell you what they have seen throughout there career.....here we can tell you what we experienced, two totally different things.

Wishing you the best. You will be hearing from others on this board soon. Please ask any and all questions you have, vent, shout, cry or whatever you need to do. This is the place for all of that.

Peace

Tom

Share this post


Link to post
Share on other sites

Hi Kathleen,

I'm so sorry to hear about your diagnosis but so glad you found us.  Everyone here is very supportive and can answer the million questions you may have now or in the future. 

I wanted to share "Lung Cancer 101" with you that is a great resource for what different things mean, treatments, etc: https://lungevity.org/for-patients-caregivers/lung-cancer-101

Also, LUNGevity offers a variety of support services from one-on-one mentoring to a help line.  All of that information is here if you ever need it: https://lungevity.org/for-patients-caregivers/support-services

Thinking of you and please keep us updated on how you are doing!

Share this post


Link to post
Share on other sites

Hi Kathleen,

I am sorry to hear you are feeling down, but I completely understand.  My mom was diagnosed with NSCLC Adenocarcinoma, stage 3a when she was 61.  Although my parent's retirement plan was already not going in the direction they planned, the lung cancer diagnosis really threw lots of uncertainty into the picture.  You are going to hear from many of us that the lung cancer survival rates we all "google" do not reflect the current survival rate, an easy way to say this is that the information is old.  There have been many great advances in treatment in the past 2-3 years.  My mom was a recipient of those advances when she was diagnosed with her first lung cancer recurrence 3 years ago.  Rather than a death sentence, lung cancer is being treated more as a chronic condition these days.  There are many different treatment options and lots of options to assist with possible side effects.  Lung cancer diagnosis and treatment is never an easy road, but there is HOPE.

I reached out to LUNGevity's forums when I was feeling hopeless.  Here I found HOPE and now I share in the HOPE.  My mom does all of the things she loves to do - crafting, swimming, going to concerts, and camping, she is 65 years old.  Life has changed, some for the better, some not related to lung cancer.  But she is LIVING her life.

A lung cancer diagnosis is a dark, scary time.  We are here for you.  You will not find doom and gloom here.  You will find people reaching out for help and people giving help and HOPE.  We have newly diagnosed folks actively involved and longterm survivors that survived all of those scary statistics you have seen.  We are all here in spite of lung cancer.  This dark time in your life is temporary.  You will receive your official diagnosis and treatment plan and then it is off to battle.  All survivors here have lived through this battle or are living through it now and you can too! 

Take care,

steff

Share this post


Link to post
Share on other sites

Please do not feel sad and discouraged. I am a 4 times cancer survivor! Most recently (2018) I was diagnosed with NSCLC, a nodule in the right lower lung. I had a biopsy, PET scan, and surgery to remove the right lower lobe. Then I recovered in the hospital for 5 days with a tube coming out of my side. I finished recovery at home with the help of my daughter, who came for 3 weeks, and a friend who came for 2 weeks. By then I was driving and returning to normal very fast. However, pathology found not one, but two nodules in that lobe. The first one was adenocarcinoma, but the second one was thought to be SCLC, a more virulent and dangerous cancer. I was scheduled for concurrent chemo and radiation. However, my oncologist had a gut feeling about that second nodule and sent my case to the weekly Tumor Board. With oncologists, radiation doctors, pathologists, researchers, and others working on it, they decided the nodule was actually a rare neuroendocrine carcinoid. As with the adenocarcinoma, the only treatment required was removal of the lobe. I am 76, have COPD and asthma, rheumatoid arthritis that affects by immune system, and I have recovered wonderfully. I now have a small dog and we walk 1 to 2 miles a day. Do not get discouraged. Do not worry ahead of time. You need your strength, obvious intelligence, and trust to go through this journey. Trust your doctors, enroll in a support group if you do not have support, and you will be OK and will go on to enjoy a full and busy retirement.

Share this post


Link to post
Share on other sites

All of these posts are so true. When I was diagnosed with Stage IV NSCLC I thought my life was over. It has been over a year with treatments every 3 weeks and scans every 3 months. I keep a journal about how I feel daily so I know when to schedule the things I love to do. Stay positive because it does get better. 

Share this post


Link to post
Share on other sites

Kathleen ~ As you can see, we all understand your grief right now... But as you can also see, there is a lot of hope!

I learned I had suspicious nodules in December 2016, just a few days before Christmas. I was devastated. I was told it would be a "watch 'n wait" scenario as the nodules were too small to do anything with. I was not comfortable with that but I was grateful for the time to prepare myself.  I spent a lot of time trying to educate myself and research as much as I could about lung cancer. In hindsight, I paid far too much attention to the numerous studies on prognosis and survival statistics. I was certain my life was over...

I ended up having surgery in Oct 2018 and was diagnosed with NSCLC.  This site helped so much in helping me prepare for the vats surgery/lobectomy. I felt I received a lot of encouragement every step of the way and this gave me a sense of community... not a "club" any of us would ever willingly join; but we are here for one another.

I hope your oncology appointment tomorrow will give you the definitive answers you need right now to move forward. Do not give up or think you won't be able to engage in those retirement dreams of yours.

Colleen

Share this post


Link to post
Share on other sites
23 hours ago, LUNGevityKristin said:

Hi Kathleen,

I'm so sorry to hear about your diagnosis but so glad you found us.  Everyone here is very supportive and can answer the million questions you may have now or in the future. 

I wanted to share "Lung Cancer 101" with you that is a great resource for what different things mean, treatments, etc: https://lungevity.org/for-patients-caregivers/lung-cancer-101

Also, LUNGevity offers a variety of support services from one-on-one mentoring to a help line.  All of that information is here if you ever need it: https://lungevity.org/for-patients-caregivers/support-services

Thinking of you and please keep us updated on how you are doing!

Thank you 😊 for these great resources. My toolbox 🧰 is filling up. Kathleen 

Share this post


Link to post
Share on other sites

Thanks to all for your stories and hope. I’ve been telling everyone about this forum. I’m thankful for the quality and professionalism of the format and its members. my attitude and hope for the future has changed dramatically, this forum being one of the reasons. 
 

I do have some questions I didn’t think to ask about my treatment plan. My stage 3b was confirmed yesterday by the MD Anderson oncologist. He is very confident I can beat this for numerous reasons which he explained in detail. 
 

I am so very fortunate to live in a city with such a fine cancer center. Which brings me to my questions.  Three clinical trials were offered to me as alternatives to the “gold standard” radiation, chemo and possibility of immunotherapy treatment plan. Proton or photon radiation in lieu of standard radiation and a new type of immunotherapy first. If the oncologist is so certain that the standard will do the trick why would I be offered clinical trials which might not?  What patient would want to risk their life to participate in a trial?  

Another question. Surgery to remove the tumors was not given as an option. It was explained to me that surgery for the location of the tumors would not increase my chances of survival. And was risky due to the location of the mediastinum one. I understand this. But the lower lobe could easily be removed to eliminate further spread in my opinion. How could it not increase my survival chances?
 

Sincerely, Kathleen 

Share this post


Link to post
Share on other sites

Hi Kathleen,

Here is some detailed information about clinical trials: https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/clinical-trials

"In lung cancer clinical trials, patients are never given a placebo instead of an effective standard treatment.

Placebos are sometimes used in cancer treatment clinical trials. They are used when a clinical trial is comparing standard treatment plus a new treatment with standard treatment plus a placebo, as in the graphic below, which uses lung adenocarcinoma patients with an EGFR mutation as an example. The placebo is designed to look like the medicine being tested, but it is not an active drug. Using a placebo in this way prevents patients and their doctors from figuring out to which treatment group the patients were assigned."

Hope that helps!

Share this post


Link to post
Share on other sites

Hi Kathleen,

Hello and welcome to the family. Each of us has walked in your shoes to the utter shock and disbelief. Someone here once said having lung cancer is like being abandoned in a foreign country.  
All of the questions you ask are appropriate.  Stage IIIb is a fairly rare diagnosis therefore the roadmap is a little less clear cut.  Surgery is typically for earlier stages but that doesn’t rule out a potential surgery in the future.  I know the instinct is along of the lines of get this monster out of my body however with the rapid advances in treatment options, there are better alternatives than going under the knife.  There have been more advances in lung cancer treatment in the last five years than the last fifty.    
 

As for the clinical trial, you are so fortunate to be in a world class cancer center. Clinical trials offer groundbreaking advances and unlike the old days can actually improve the odds of beating the disease.  One of my peers is now in her fourth Phase I clinical trial with 15 years of survivorship at Stage IV.  The trials aren’t as risky as they sound.  

It’s a personal decision but the doctor understands the complexity of the science to drive the best result.  The standard of care is always there as a back up.  If the doctor didn’t feel the trial was not successful, you’d withdraw and transition to the standards of care.  
Another benefit of clinical trials is you get lots of eyes on your treatment plan.  Some people might feel lost in a large cancer center, this helps to mitigate that feeling.  

It’s important to understand what the out of pocket costs are when enrolling in a trial as well since not all of it is paid for. 
 

Onto proton radiation, the latest and greatest shiny object for cancer treatment.  Big questions there as commercial insurance doesn’t reimburse for lung cancer.  Some radiation oncologists feel this type of radiation is far superior due to reduced side effects.  
 

I wouldn’t hesitate to enroll in a trial if my doctor recommended it. 

Throughout the next few weeks as your treatment plan gets established, remember and recite this treatment will go forward with curative intent.  People are beating lung cancer every year. You will too.  
Nice to meet you!

Michelle
 

 

Share this post


Link to post
Share on other sites

Kathleen,

Welcome. Why not surgery?  Because a tumor is in both lungs, but do see a radiation oncologist to evaluate you for stereotactic body radiation therapy or SBRT or proton radiation.  They both do the same thing to a tumor (fry it) but proton beam is more precise. This type of treatment often substitutes for surgery.  A form of SBRT called CyberKnife likely saved my life so. So you might have SBRT with adjuvant chemotherapy. 

Stay the course.

Tom

Share this post


Link to post
Share on other sites

Kathleen,

Welcome to our family forum.  you're already hearing some great counsel from others here so I'm going to focus on how you are feeling.  

As you now have heard, we all go through a version of shock as you did.  For me it was a total crash; I knew my life was over and there was no alternative to dying quickly.  And I had retired only 1 1/2 years before so, like you, my wife and I could enjoy some of the fruits we had worked so hard for during our life together.  Well, in my case the diagnosis was Level 1a so surgery was the recommended treatment and i had my lower-right lobe removed.  Even though the doctors were very pleased with the outcome (tumor was small, no lymph node involvement and excellent margins) I carried doubt about what the future would hold, how I would recover from this and would it come back.  Now, let me be clear, the super group on this forum helped me get through the surgery and kept my head on straight when I was "catastrophizing" like crazy before and after the surgery.  As you get to know us here you will find folks who have fought this battle and won over 16 years ago and others, like me who are recent entries into the Lung Cancer arena.  But the sum of this group is greater than the total of its parts and that is where the depth and breadth of experiences here will help you now and as you go through your treatment plan.  So please feel free to ask any questions you have, no matter how silly they may seem to you and you'll find a harvest of information here that can help you as you go through this journey.

 Oh, by the way, I didn't mention that after a few months I was back to doing 5-6 miles/day and a weight routine daily with little impact on my performance from the surgery and presently I am NED (No Evidence of Disease), so you see that there is plenty of reason for you to believe that you can still enjoy the retirement you dreamed of before the diagnosis.

Lou

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...