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On diagnosis, I had a single tumor in my main stem bronchus measuring about 7 cm long and about 2.5 cm in diameter. It was so large, it couldn't be biopsied with a flexible bronchoscope. My thoracic surgeon performed a cervical mediastionscopy biopsy to confirm the type of lung cancer as Squamous cell. He also removed a large number of lymph nodes but thankfully, each showed no signs of disease.
The first finding, despite no lymph node involvement, was no surgery because the tumor was too large and too close to my trachea. My medical oncologist and thoracic surgeon cooperated to administer first line conventional radiation (30 treatments) and 6 infusions of adjunct taxol and carboplatin to shrink my tumor and give the surgeon access to remove my right lung. That treatment worked but unfortunately and predictively, suture healing was affected by the pre-surgical radiation and chemotherapy and that resulted in a year's worth of additional surgery to correct a bronchopleural fistula. Because of this complication, I did not receive post surgical chemotherapy and missing this treatment was a likely cause of three tumors discovered in my remaining lung about 3 months after my last surgery, my first recurrence.
Then I had 6 more infusions of taxol and carboplatin and scans showed no evidence of disease (NED) and I remained disease free for about a year. But two tumors returned to my left lung. I had another course of 6 taxol and carboplatin infusions hardened by the oral chemotherapy drug Tarceva and again was found to be NED. However once again, one tumor returned to my left lung. Finally that was fried by stereotactic radiation (CyberKnife) and I've been NED since. So I had three recurrences, all to my left lung.
Yes, there is a stigma about lung cancer. Thankfully, it was never displayed by my doctors but some who learned about my disease blamed me for giving it to myself. I likely did, but data shows about 18% of diagnosed lung cancer occurs in people who never smoked. I can't change my past and if people want to blame me for my disease, then so be it, but I don't buy into their blame. In today's politically correct world, all I need to do to shut these small-minded people down is cite HIV/AIDS and drug abuse as self administered and ask why they don't blame these folks. It is crude but effective.
I am alive and even after nearly 13 year of living after diagnosis, I still see my medical oncologist 2 times per year. Lung cancer is persistent and I still have a high probability of recurrence. So, to the operative question: how does on live with a life threatening disease that has a high probability of recurrence. Here is how I do it.
I forget the past. I can't change it and forgetting is vastly better then mentally rehashing all my treatment nightmares. I've declared the future irrelevant. I have no control over what happens to me in the future and worrying won't change that. Therefore, I live in the day and I try and find something, often a little thing, that brings me joy to celebrate life. When I find it, like this morning's first cardinal at the bird feeder, I enjoy the experience. I also try and help people diagnosed with lung cancer because if I can live, so can you.
I believe there are two ways of thinking about lung cancer. I can be down in the mouth and believe it is a disease of death and morn my death while still living, or I can believe it is a disease of life. I choose the latter. I don't know when I will die, nor do I know what will cause it. We all die; why worry about what causes it.
You've got a lot on your plate Mary. If you want to, you can clear off some of the clutter. If I can live, so can you.
Stay the course.
hi tom im having a central line put in october 11th and back on chemo the 13th so figures crossed do you mind me asking where your cancer reoccured. ya i feel there is a stigma that comes with lung cancer as i have tryed for local support groups with lung cancer suvivors havent found any yet surely they must be some, i will keep trying. Think my husband is showing fear on display at present and also my kids but we will get passed this, so glad your wife is so supportive a true angle without wings im sure my husband and kids will step up too just like last time we all had a rough couple of years my mom passed away last year from a stoke and my husband had a heart attack at the same time he had 5 stints put in i think were all very scared and in shock at present slowly im thinking bring the beast on so i can win this battle
Pemetrexed is a new formulation that I didn't receive. I did however have more than my fair share of carboplatin, in combination with taxol and this combination therapy knocked down my tumors 3 times. I do hope your adenocarcinoma qualifies for targeted therapy. So let's see if we can help our your coping problem. Here are some strategies with coping with infused chemotherapy that I discovered.
1. Remember, chemotherapy very often produces extended life. Don't make my mistake and fail to take advantage of this extension. You are choosing treatment and therefore life. Do something enjoyable with it.
2. A port is often helpful in avoiding assault by IV device. During my second bout with chemo, my veins went into hiding. Think about having one installed to reduce the drama of infusion.
3. The only good thing about side effects is they recur at nearly the same time after each infusion. Chart the onset on a calendar to the hour. My doc told me if I took prescribed side effect medicine shortly before the onset of side effects, they'd be less disruptive. He was right.
4. If you have to take pre-infusion steroids in pill form and your are given infused steroids before chemo, there is this symptom we call 'roid rage. Steroids caused two problems with me - hunger and sleeplessness the night after infusion. So prepare. My wife took me out infusion night for a wonderful dinner, and I settled in to a good book to pass the sleepless hours.
My family didn't want to speak about cancer either. My father hardly spoke to me, but my wife stepped up to be my caregiver and guarding angel. People don't know what to say to those diagnosed with cancer, especially lung cancer. They are afraid of saying the wrong thing so they say nothing or they avoid interacting with you. This is fear on display. But you've found us and we know exactly how you feel and welcome you to this online forum. You might also look for a cancer support group in your town or city. They are often associated with treatment centers. People in support groups know exactly how you feel.
Stay the course.