Just diagnosed and very sad

[Kathleen E]

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

 

[TJM]

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

[LUNGevityKristin]

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!

[Steff]

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

[Mamma Om]

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.

[Rose Kaiser]

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. 

[ColleenRae]

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

[Kathleen E]

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 

[Kathleen E]

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 

[LUNGevityKristin]

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!

[Rower Michelle]

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
 

 

[Tom Galli]

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

[LouT]

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

[julie davis]

hi. my name is Julie.   I have non small cell adenocarcinoma.  im having a right thoracotomy/mid lobectomy next wednesda,y the 22nd.  i'm absolutely terrified.  I live alone, my kids live in Washington state and cant fly out here to be with me because of this darn virus:  my biggest fear is waking up with a tube down my throat. is it normal to initially fight it when you first wake up from surgery?

[ColleenRae]

Hi Julie. I am sorry for your diagnosis but hope that this is "good" news in the long run... I am assuming it is, as you are able to have surgery. You have come to the right place for support! I am sorry your kids can't be with you right now. Your fear and wishing they could be with you (and I am sure they wish they could be as well), is completely understandable.

I had my right upper lobe removed via VATS surgery in October 2018. I was terrified prior to surgery. I will be honest, I don't remember waking up with a tube at all. I was so doped up following the surgery I don't remember much.  What I do remember is my throat feeling a bit sore - nothing terrible, just a little sore and scratchy - but I had no trouble eating following the surgery. I had a mediastinoscopy as well (small incision near thyroid) and had no problems eating or swallowing. I DO remember having oxygen following the surgery and I became quite tired of that / those little plastic tubes in my nostrils. I was able to shower by myself, go to the bathroom, etc. I was very worried about all of the unknowns prior to the surgery. In hindsight, it was definitely not as bad as I had feared. It is still major surgery, and you will need time to heal, but you can do this.

I would guess that, yes, it would be "normal" for someone to initially fight it if they wake up from surgery. That sounds like a normal, protective measure we would take. Maybe others can offer more info re: their experience but I can assure you that I do not recall waking up being intubated or even aware of it. The drugs knocked me out quite hard! I was pretty dopey for about 24 hours. I was more aware of the chest tube being removed than anything else. Try not to think too much about things like this and worry yourself.  Try to have your home in order so that when you do come back home you can rest as much as you can. Having some food in the freeze that you can hopefully microwave will help. Also, if you are alone I know it is hard to get things for yourself when you can't drive... and this virus is not helping with that either. If you can get them, I would recommend getting some "Icey Hot" patches. I found them very helpful to help with pain (I quit pain med's quickly due to an allergic reaction and stuck with Tylenol only - it was perfectly sufficient for the pain). I used the patches before I went for walks. Walk as much as you can and use the sprirometer that the hospital will give to you... The discomfort and pain will pass quicker than you realize.

We can all understand you being terrified.  I was afraid I would need to go to a nursing home following surgery as I only had my adult disabled son to help me (Autism). My surgeon felt I would be fine at home. It helped to have my son with me, but I probably could have managed on my own. If you have someone who can check in on you safely, that would help.  COVID-19 is not making things easier, that's for sure. 

Again, very sorry you have to deal with this but glad you came here. Please ask questions - this site helped me enormously and still does.  Wishing you all the best next week...

Colleen

[Tom Galli]

Julie,

Any lung cancer diagnosis is frightening. Layer on a pandemic that prohibits family support and one starts to feel lonely and afraid. 

So, lets break this thing down. First intubation: I’ve had a total of 8 thoracic procedures that required anesthesia by intubation. Not once was I aware of the tube. Your anesthesiologists will talk to you before surgery. Tell him or her about your fear; I bet they have some good stuff on hand so you won’t care a lick about intubation.

Waking up or should I say becoming aware of being awake is weird. I was thirsty every time. Water came quickly but in small sips. Once water was denied and ice chips were available to ease my dry mouth. Pain? I didn’t have any. Three of my procedures were complicated surgeries and I had a morphine plunger wired up. My doc and nurse told me to press the button at the slightest hint of pain. I was also told to hit the button when they had to move me or remove a tube. My surgeon told me the last thing he wanted me to experience was pain. The on-call morphine didn’t stay long but I could request a battery of pain meds. Discuss these with your surgeon before you are admitted. 

Morphine is powerful stuff and I worried about addiction. I figured out there is a certain amount of “placebo” effect with the button. Yes it works and relief is instantaneous but they’ve got it on a timer such that you only get the medicine according to the interval set by the surgeon. But they told me to push the button anyway. 

Recovery from thoracic surgery is a process. My nurses were harder on me than any drill sergeant. I was “encouraged” to get out of bed, even though I was connected to a host of tubes. Then there were ward laps. “Come on, you can do one more...” Then you’ll meet your respiratory therapist and be introduced to the spirometer. Your nurse and respiratory therapist will tag team you into blowing into a tube and lifting a ball to a certain level.  This seems counterintuitive but getting your lungs exercised is extremely important!

Nevertheless, surgery is frightening and without the comfort of family it will a higher hill to climb. I bet you climb it in record time and soon we are reading about your discharge. And we are with you every step of the way!

OBTW questions? Don’t hesitate to ask. I bet we’ve got more lung cancer experts on this forum who designed the t-shirt everyone else wears. 

Stay the course Julie!

Tom

[LouT]

Julie

 I’m not sure if you are retired or on Medicare, but if you are your surgeon can apply for you to have a home health care nurse visit you during your recovery. They would change dressings, ensure there is no infection and track your vital signs. Again if you are on Medicare please have your surgeon order this for you. 

Lou

[BridgetO]

Hi Julie and welcome,

I had a lower right lobectomy in November 2016. by VATS.  Any surgery is serious, but this one was fairly easy as surgeries go.  In 2011, I had a really big surgery for an unrelated cancer. For that one I was groggy for days due to morphine. After the lobectomy, I woke up chipper and chatty! I know I was intubated for anesthesia for both surgeries, but the tube was gone by the time I woke up.  After the lobectomy, I was walking around in the hospital corridors later the same day. I was discharged the following day with a chest tube still in place because I had an air leak.  

Here's a suggestion: get a foam wedge pillow to sleep on to keep your upper body elevated. I tried to find a good position with an array of other pillows but only ended up with a sore neck. The wedge pillow (12 inches high) really helped me breathe easier and be more comfortable. 

The suggestion for a visiting nurse is a good one. One thing I needed help with was changing dressings. especially at the site of my chest tube. I

My surgery was VATS, video assisted with tiny incisions.  You say you're having thoracotomy, so I assume this is an open surgery. If so, you will likely have more pain and a longer recovery than I had.  Maybe some who have had open surgery can chime in here.

Let us know what questions you have and how we can support you.

Bridget O