Share Your Empowerment Story for Lung Cancer Awareness

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This topic contains 14 replies, has 10 voices, and was last updated by  deswen 1 year, 4 months ago.

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November 3, 2014 at 12:18 am  #1266894    
GRACE Webmaster
GRACE Webmaster

November is Lung Cancer Awareness Month

This November, GRACE is celebrating the empowered patient through a series of videos and blog posts from doctors and patients. Each week will feature new faces and new perspectives. Watch, read, and then share your own stories of empowerment here in this thread. Your story may inspire others.

November 3, 2014 at 1:11 pm  #1266901    

z3k3

I was struck by Dr. West’s description of a second opinion as something that the cancer patient should definitely consider when working towards a decision about treatment for lung cancer–and also how important it is for the patient themselves to be as educated as possible. In my case, as soon as I had a diagnosis of Stage 1 lung adenocarcinoma/BAC, I was in something of a panic and wanted to have surgery as quickly as possible, and had even scheduled it with the head of thoracic oncology in my local hospital. However, I had also arranged for a second opinion from a leading cancer surgery in a nearby city, a couple days before my surgery. I had done extensive online research myself and concluded that I wanted a lobectomy using VATS (video assisted thoracic surgery) as opposed to conventional open-chest surgery, because of faster recovery times. My local doc said he would do VATS since I wanted it, although he performed traditional surgery 80% of the time. When I talked to my second-opinion doc he did two things: one, he reassured me that I did not have to rush into a decision because the type of cancer I had was slow growing and two, he told me he performed VATS 80% of the time! I cancelled my scheduled surgery and had VATS performed by my second-opinion doc two weeks later. I was back at work after just two weeks and am now coming up on my second year anniversary in excellent health.

November 12, 2014 at 3:13 pm  #1267093    

mamasan

In May of this year my healthy, middle-aged, never-smoker husband was exhausted, in pain and having difficulty breathing. In the emergency room he was diagnosed with stage IV lung cancer. He had a softball-sized tumor in one lung, lots of spots in the other lung, pleural effusion, extensive cancer in his femurs, a cancer-caused leg fracture and more than 25 brain tumors. It was a shock.

A couple hours after learning he had lung cancer, the intake hospital doctor came to talk to us. He didn’t greet or even look at me and the words he said to my husband are burned into my brain “Your cancer is inoperable. You have probably 6 to 8 weeks. You might want to get your affairs in order”.

We were devastated. It was a Friday evening and we were told that the oncologist would visit on Monday. Over the next couple days, no one discussed treating my husband and the nurse said they were going to send us home on Monday. I researched everything I could find about lung cancer and learned about “performance status” and how doctors use it to determine treatment options. My husband was indeed weak when he entered the hospital, and I realized with horror that maybe the doctor felt he couldn’t handle treatment. But after getting the fluid drained he felt so much better and had no symptoms other than exhaustion. We had to show them he was treatable.

On Monday he cleaned up and dressed in regular clothes. We had an army of friends in the hospital with us, flowers, photos of our 4 year old son next to the bed. When the oncologist arrived my husband greeted him standing.

Shortly after, one of our friends reported that he overheard the oncologist and the hospital doctor arguing in the hall about whether to treat my husband.

He started chemo the next day. A PET scan in September showed no evidence of cancer. It’s early days, but I am hopeful.


hubby dx May 2014, stage IV NSCLC, PIK3CA and BRCA2 mutation, never smoker. 9cm lung tumor with the works: brain mets, bones, lung spots. 6 rounds carbo/alimta. 2cm mass remaining on Oct 1st, clear everywhere else, unclear on PET if remaining tumor is scar tissue or active. Next: Avastin or maintenance Alimta…deciding.

  • This reply was modified 2 years, 11 months ago by  mamasan.
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  • This reply was modified 2 years, 11 months ago by  mamasan.
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November 13, 2014 at 4:41 pm  #1267132    
catdander forum moderator
catdander forum moderator

mamasan, How wonderful to hear your husband is doing so well. My husband went through very similar travails when first diagnosed as well. I hope he does well for a long long time. Congratulations!

z3k3, Congratulations on the 3 year mark. Here’s to another 50!

November 1, 2015 at 12:45 pm  #1271690    
GRACE Webmaster
GRACE Webmaster

November is Lung Cancer Awareness Month

This November, GRACE asks doctors, patients and caregivers ‘what are you grateful for?’ in a series of videos. Throughout the month, we will feature new faces and new perspectives.

November 2, 2015 at 4:15 am  #1271695    

cards7up

I’m grateful to still be here after original diagnosis in 2010 and local recurrence in 2013 and currently NED and doing well. I have my aches and pains, but that could also be due to age and not just from cancer treatment.
I will continue to survive for as long as I can and pray for everyone going through this to as well!
Take care, Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

November 3, 2015 at 8:18 pm  #1271719    

SoCal

I am grateful for GRACE. Grace has empowered me to be my own advocate by providing the information and stories from other people with NSCLC on coping, dealing with medication side-effects, finding informational resources, and so much more. Of course I am grateful that I remain alive more than six years since my diagnosis in 2009, despite moving slowly but steadily from Stage IIB to IV. I am grateful for the professionals who have seen to my care–oncologists, surgeons, radiologists, pharmacists, internists, dermatologists. I am especially grateful for my husband and friends, who have offered support and care whenever needed. But GRACE is the unique helper that has enabled me to deal with all the others and has informed much of my decision-making. Thank you, GRACE.
Nan


Dx June 2009 NSCLC adenocarcinoma IIIA with BAC, L upper lobe. 2 cycles cisplatin + etoposide w/25 days RT; PE + other side effects, no change in tumor. Wedge resection of L lower lobe & nodes: EGFR mutation (19). 3 mo. Tarceva in 2010, tumors grew; 3 mo. Alimta, no change. “Watch and wait.” Stable 3+ years. Thyroid cancer early 2013 (surgery and rad). Lung CT 9/2013: tumor growth. Left upper lobectomy, left lower wedge + nodes; status: T4 N2 M1a. Breast cancer dx’d 12/2013: HR+, HER-2 negative. Mastectomy 2014. 5 new small lung tumors in fall 2014: right and left lobes, pleura. Restarted Tarceva. 77-Y/O female ex-smoker (quit in 1982) with lupus. Overall, doing fine.

November 6, 2015 at 5:54 pm  #1271747    

dtkb328

My mom was diagnosed with stage 4 adeno in may 2014. After chemo and radiation, she remained disease free for six months. It was then found in her adrenal gland, and she had a spot on her hip. Again, after treatment, she had adrenal gland removed. There is another smaller spot in lung that drs are confident they can hit/ kill with radiation. There are so many things I’m thankful for- my mom is at one of the best hospitals in chicago. Her team often will communicate with other top dr from neighboring hospitals. Because of her positive treatment outcomes, she is able to continue to survive and live! My mom loves watching my 14 month old while we are teaching. Furthermore, my mom continues to maintain a healthy diet and life style. She and my dad continue to travel and the whole family gets together weekly for dinner. Even though my whole family was given this diagnosis- I am so grateful that we are going through this together. My mom is an amazing woman. She is my hero!!!

November 9, 2015 at 9:11 pm  #1271782    

kmgeiger

Dear dtkb328, would you mind sharing with me the name of your doctor in Chicago? My husband has stage IV lung cancer, and we live in a remote area in Michigan but we are just one hour from Chicago via airplane. He very much needs the kind of help you are describing. Thank you.

November 10, 2015 at 6:18 pm  #1271791    

dtkb328

I’m sorry to hear about yor husbands diagnosis. Sending thoughts and prayers your way!
My mom goes to Rush and has been receiving treatment since the spring on 2014. Her current oncologist is dr. MaryJo Fidler and her radiology oncologist is dr. marawaha. He recently took over for Dr. David Sher. My moms surgeon is Dr. Jonathan Meyer. Dr. Fidler collaborates with Dr. Bonomi, who is featured on this website. It is an amazing place, with the the
most amazing doctors.

November 30, 2015 at 10:20 am  #1271976    

Ann

I, too, am grateful for GRACE. My father was diagnosed with Stage 3B NSCLC in April of 2013 after undergoing VATS lobectomy. My background is in admin in the medical field, and with the help of this site, pushed him to read more, question more, and get a 2nd opinion. I sent him Dr. West’s very useful overview article on what he was likely facing. The terminology alone was a roadblock for him and other members of the family, and this site helped me answer his questions, breaking the answers down into plain English. He did two rounds of chemo (carboplatin + Alimta) but his tumors grew through treatment, with very little slowdown. It’s true that I would not have made the same treatment decisions my Pop did, but it was strategy to decide, and he went into it 100%. Every time we visited him over that spring and summer it was shocking how debilitated he was. 6 months later, he visited us for Thanksgiving and gave us the bad news that the cancer was even more widespread. I had read on the GRACE site about the clinical trials for immune checkpoint inhibitors, and after a round of radiation to knock out a bone met that was causing him great pain, he inquired about his eligibility for a clinical trial, and was accepted into the OAK study of 3280A at the same hospital where he had gotten his original treatment. Did it have any effect? Hard to say. He entered the trial very debilitated from the surgery and subsequent chemo. But he had very high hopes, and the side effects were quite minimal (especially compared to the chemo). He was adamant that helping the research effort made it worth it, and that buoyed him as he continued the trial. A kidney met kicked him out of the trial, and he was referred to hospice care. I continued to look for answers in the forum to things that would come up, and shared with him reports of progress on the drugs in development similar to the one he was on, which made him smile. He died on October 12, 2014. RIP my beautiful father.

January 14, 2016 at 10:30 am  #1272587    
catdander forum moderator
catdander forum moderator

Ann, Thank you so much for sharing your story.
Janine

May 21, 2016 at 10:21 am  #1274112    

deswen

I am grateful to find a web site that allows us to post and share what we are going through while we each deal with cancer in our lives. There is comfort in knowing we are not alone in our pain. I was first diagnosed with stage 1 Squamous sinus cancer in June of 2012, after 35 radiation treatments, I was cured.or so I thought. In March of 2016 I had a bronchoscopy that led to my lung cancer stage 2b Squamous cell being diagnosed. Had a complete left lung removal surgery 2 weeks ago. Will be starting chemo in three weeks. For now I am still dealing with chest pressure and pain from the surgery. Feeling as if quality of life is not where I want to be. I don’t get depressed. I always try to be glad in the day the Lord has made. Part of my problem is I also have Lupus and struggle with having allergic reactions to most pain meds. Currently taking tramadol for pain. Hoping this phase will pass. Really would like to read or hear from others about their experiences with having a Pneumonectomy.

May 21, 2016 at 12:08 pm  #1274117    

SoCal

Deswen: I’m so sorry to hear of your pneumonectomy pain. I, too, had most (but not all) of my left lung removed about 3 years ago, and also experienced a lot of pain. Fortunately, it faded away gradually and I have been pain-free from the surgery for quite a long time now. I have been taking Tarceva for 2+ years, with reasonably good results. There is occasional chest pressure but not much pain. When there is, I take Tramadol, as you do. I also have Lupus with associated fatigue and joint pain. Not a great combination, and my quality of life is also compromised, but supportive friends and family are a wonderful help. Hope you also find this kind of help and time helps you overcome the surgical consequences.
Best wishes, Nan


Dx June 2009 NSCLC adenocarcinoma IIIA with BAC, L upper lobe. 2 cycles cisplatin + etoposide w/25 days RT; PE + other side effects, no change in tumor. Wedge resection of L lower lobe & nodes: EGFR mutation (19). 3 mo. Tarceva in 2010, tumors grew; 3 mo. Alimta, no change. “Watch and wait.” Stable 3+ years. Thyroid cancer early 2013 (surgery and rad). Lung CT 9/2013: tumor growth. Left upper lobectomy, left lower wedge + nodes; status: T4 N2 M1a. Breast cancer dx’d 12/2013: HR+, HER-2 negative. Mastectomy 2014. 5 new small lung tumors in fall 2014: right and left lobes, pleura. Restarted Tarceva. 77-Y/O female ex-smoker (quit in 1982) with lupus. Overall, doing fine.

May 23, 2016 at 10:26 am  #1274142    

deswen

Yes, SoCal lupus complicates everything. I am trying to get exercise, but palpating heart is limiting. Ended up in hospital Sunday night because I couldn’t breathe. Ended up being a problem with drug interactions. Trying to get well enough to get the chemo. Then I worry if my body will let me have the chemo. Most of the time I feel like I am taking two steps forward and four steps backward. Time, I just need time to get there.

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