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Coming to terms with diagnosis

Sistersue2
Posts: 3
Joined: Apr 2009

I'm so glad I found this site. I have been looking for stories of survivors of Stage IV non small cell adenocarcinoma and haven't found many. I have had 2 rounds of carboplatin/alimta/avistin. It is going really well but I would like to hear some success stories. How do you all cope with this diagnosis of lung cancer? I have never smoked, don't drink, have a very healthy lifestyle and I am still stunned by this. Thanks for reading this.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Glad that you found this place, sistersue. Among the boards, the chatroom, the mail, and the various services provided by ACS, this site can do a lot for you in more ways than one. Some of us consider it a very cheap form of therapy :).

I am not a stage 4 survivor of lung cancer, but a survivor of stage 3 head/neck cancer and, later, a lobectomy of my lower right lung lobe. They are still not sure if that was metastasis from the head/neck cancer or a new cancer, but, oddly, we are hoping it was a new cancer.

Regardless, I am now NED (No Evidence of Disease). What I learned during my bout with the lung stuff, and some have disputed this, but my docs were pretty darned good, is that NSCLC is less aggressive than small cell. That is a plus for you, I think, although your brand is more aggressive than the squamous cell that I had, from what I read here.

Coping with the diagnosis is a very difficult thing, sistersue. To my mind, it is like being told you are going to die, even when that is not necessarily true, simply because we do not spend our lives studying cancer and, thus, it sounds like a death sentence when we hear it.

I am fairly confident that most of the people in this board and on this site and most others who have received the diagnosis would agree: it sounds like a death sentence.

Since you have come here, it is apparent to me that you are about to become well-educated about cancer, and that you are about to learn about where there is hope, how there is hope, and why there is hope.

Yours, Stage 4, is a tough one, without doubt.

You already know, based on your last sentence, that cancer is not 'fair'. It doesn't care.

It takes young and old alike, a drunk old smoker here, a health nut there, while some 90-year old lady swears by her cigars and a shot of whiskey every day. Cancer is a virus, and has no rhyme; it has no reason.

Or so it seems.

There is hope. To read about what doctors and scientists are discovering on virtually a daily basis now about genetics and epigenetics, for example, is to have hope that the riddles will be solved, even within the next 10 years.

In the meantime, I suggest Hope and Humor. Exercise is good, if an option, and you want to maintain your healthy nutrition. But I have always felt that, no matter what, cancer will not take more than it is biologically predisposed to take. I will maintain my sense of humor, and if I am able to contribute nothing more to the world than this from here on, I will laugh every day, and I will make somebody else laugh every day.

You may be pleasantly surprised at how this changes your view on the challenges ahead.

I wish you and your family the best.

Take care,

Joe

8MARIANNE8
Posts: 8
Joined: Mar 2009

Reading the topics, trying to find an answer for my own question, I ran across your uplifting response to "sistersue". I think you sound like a marvelous person, and I hope you are blessed with many years of life filled with laughter.

ARobben's picture
ARobben
Posts: 46
Joined: Apr 2009

Sistersue, I can relate!

I was diagnosed with Stage IV Non-small-cell Adenocarcinoma in Dec 08. I just finished my first wave (six rounds) of chemo yesterday. I'm doing very similar treatment: cisplatin/alimta/avastin. Cisplatin is just a little more heavy duty than carbo, but the doctors said that since I'm young, I could probably handle it. So far, it's given me a little fatigue and such, but nothing that bad, and I feel very lucky for that.

My diagnosis came as quite a surprise to me as well. The short version is that I began developing shortness of breath. At first, just being a little more winded than usual after a basketball game or a run, but it got to the point where I couldn't walk up a flight of stairs without being completely winded. I thought it may have just been a bad bought of bronchitis or something, but decided it was high time I headed to the doctor. And they kinda looked at me and said "Are you sure you don't have ashtma?" and I was like "yeah, I'm pretty sure." So they recommended I go to the ER. After taking the train and walking a few blocks to the ER, I was quite out of breath, so this got me through the ER waiting room pretty quick (they take shortness of breath pretty seriously). They immediately did an EKG and a CT scan and then put me in a room to wait for the results. Due to a recent mission trip I had taken to Africa, they were set on a diagnosis of tuberculosis. They said "you have a mass in your lung that we think is TB. It could possibly be cancer, but because of you age (26) and history (non-smoker, active, healthy, etc) we doubt it." However, in the back of my mind, I knew it wasn't TB.

Over the next several days, I had a few TB tests and things which all, none to my surprise, came back negative. They did a biopsy and sure enough...cancer. When they told me, I think they were a little shocked at my response. I was more or less "Okay...so what do we do now?" I wasn't really bummed, shocked, or whatever. I was just...what do we do from here?

I think the best thing to do is to take it one step at a time. Don't jump to conclusions, etc. I was told my cancer was "incurable and inoperable." This could sound like a death sentence, but I just took it in stride...one step at a time. Now after my first wave of chemo, I'll be having another consultation with the surgeons in a few weeks to see if surgery may be an option at this point.

The point is, you can never give up hope!

Anyway, as far as handling the diagnosis, Soccerfreaks gave a lot of good advice. Keep up as much of your normal activity as you can. Exercise and eat healthy...you'll feel better. The best thing I can add is to get an advocate...a close friend, a significant other, whoever. Someone else to be in the fight with you, who will go to appointments with you whenever possible, who will educate themselves as well and can sometimes help make phone calls and ask questions you may not always feel like doing.

And finally, welcome to the boards! We're all here to help!

nanaof7
Posts: 127
Joined: Feb 2009

I started chemo and radiation but drs. decided to do surgery before radiation damaged lungs then resume with chemo does this sound normal ,,, I took the same reaction you did ok now that we know what it is lets get to the treatment.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

nana...

you really need to decide whether you trust your doctors or people on this site more. This is of course a place for questions, but the nature of yours lead me to think you suspect your doctors are, well, suspect.

I can only speak for myself, but when I had my original tongue/neck cancer, my docs told me that I could avoid the surgery or have it first. Those were my options. To have chemo and rads first, and to see how that went, and then to discover that it failed, would preclude the opportunity for surgery because of damage to the tissue.

I went with the surg, in that case, followed by rads and chemo. I trusted my docs.

When cancer later showed up in my lung, the new doctor, also a top guy in his field, said we will only take it out if it is a new cancer.

This pretty much meant that I was a dead man walking if they discovered it was mets.

It may be mets, but he decided, with no mitigating circumstances, to treat it as new, they romoved it, and I am now NED (No Evidence of Disease).

I trusted him, I trusted the first docs, and I trust my OncoMan.

I advise, just a personal preference, but glad your docs agree with it, that if I can have them take it out, then I want them to take it out...THEN we will deal with any strays.

Take care,

Joe

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

Hi ARobben,

I can really relate to your message as I was told 3 days ago that I have "incurable and inoperable" non small cell adenocarcinoma. It definitely sounded like a death sentence to me especially since his next words were "I can't tell you much time you have". I think my mind went numb at that point and all I could think about on my drive home were the two words - inoperable and incurable.

I am having a PET scan on the 26th and meet with an oncologist on June 4th to get the results of the PET scan and find out what stage the cancer is at. The surgeon who told me it was inoperable said it was in my lymph nodes but he couldn't tell me where it had spread to.

I thought I had a bad cold, ear pain and throat pain on the right side and hoarseness. Then 2 weeks ago I started coughing up blood so I decided this is definitely not just a cold and went to the doctors. I think in my heart I knew what it was as I just lost my brother last year to lung cancer.

I think the hardest part is waiting for all the test results, it gives my mind too much time to think of all the bad things that could happen. I'm doing much better emotionally than I ever thought I could, trying very hard to stay optimistic and upbeat. I just keep telling myself that I can beat this and have several good years to enjoy life and my family.

I'm very happy to have found this website as reading some of the posts have given me hope and encouragement as I know I have a long road ahead of me. But I fully intend to walk that road very slowly and enjoy the scenery along the way.

Good luck everyone and may we all be posting comments for many years to come.

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