A Lung Cancer Journey

by "Cards7Up"

Our Blog Post today is from WhatNexter "Cards7Up", she is a Stage IIIA lung cancer survivor and has been through quite a journey. She shares her story of fighting with determination while being her own advocate for quality care.  

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I was originally diagnosed with NSCLC (non small cell lung cancer) adenocarcinoma, stage IIIA in July 2010. At that time, two tumors were found, one in upper and lower right lobes. I knew about LC as my Mom had passed almost one year previously to the day I was diagnosed from ext SCLC. Her journey from beginning to end was only six weeks and one treatment. I had immediately found a support site called Lung Cancer Surivors. So when I had my biopsies and completed the full diagnosis, that's where I went for info and support. They did biopsy both lesions. I had no lymph node involvement. 

I got the much recommended second opinion. And the treatment plans were the same just one would've used a different chemo combo. I stayed at home for my treatment. In our area, they were just starting to use SBRT for lung cancer. Prior to that, they only used it in brain cancer. My hospital being the largest in the state didn't' offer it yet, so my radiation oncologist sent me to an affiliate 30 miles away. Again, they were still new to the SBRT use for lung cancer. Had the mold made and the tattoo's done and did 5 days of 40 minutes on each tumor. I felt no side effects except for taking the steroids. Did not like that experience. 

A few weeks after completing radiation, I started chemo of carbo/Alimta . I had done my research as they had recommended cisplatin and I asked to be switched to carboplatin as I can't hear out of one ear and have a significant loss in the other, so didn't want to chance losing my hearing completely since cisplatin has a side effect of hearing loss and neuropathy. On my fourth and final infusion when they put the needle in to start chemo, I told the nurse that it felt hot and she said that was fine. It still felt hot when she flushed it before connecting chemo. The next day I ended up back at the office as my arm was swollen, hot to the touch and very red. I had a staph infection. This took two Z-paks of antibiotics to clear up. So I learned that this nurse hadn't changed her gloves after she dealt with the patient before me. She was filling in that day and would not be on the chemo floor anymore. OMG!!!

My medical oncologist at the time is the one who researched and got approved for LC the IV Aloxi for nausea. I can honestly say, I never had any nausea and never took the prescribed pills. My chemo combo was carboplatin and pemetrexed (Alimta). What I did suffer was extreme fatigue. I couldn't have worked even if I had wanted to. Over time I've learned that not everyone has the extreme fatigue but you do still have fatigue. I lived down the hill from the hospital and we have a shuttle that goes right by my house up to the hospital. This is how I got to and from my chemo treatments. When I did the radiation 30 miles away, I had rides provided by the American Cancer Society free of charge since I don't drive anymore. 

I survived both without much help as I live alone. I did have a dog that was almost 15 years old at the time. He'd previously been diagnosed with kidney disease 5 years prior and was on a special diet. Well when I got sick, he got sick. Within two days of starting my radiation, I had to put him to sleep. That was a very hard thing to do at that time, but I did it for him. I still miss my Buddy every day. 

Around 2 1/2 years later at my CT scan follow-up, my oncologist noticed something. It was hard to decipher since it was showing where the radiation scarring was in the lower right lobe. So we waited three months and rescanned. He then ordered a PET scan and it lit up as they say and the SUV reading was in the cancer range. Though we also know it could've been from the scar tissue. So he was going to order a biopsy. I get a call within a week telling me my radiation oncologist would be taking over for now as my medical oncologist had gone on medical leave. She ordered the biopsy. Though I was put under using Versed, I woke up at the end with the Interventional Radiologist on my back pushing very hard to release air from the lung. That hurt!!! OUCH!!! 

Pet Scan Lungs

It came back positive and was a local recurrence. The same tumor from the first time around had regrown. So now its' time to see all the treatment factions again. They send you on the rounds to the medical and radiation oncologist and surgeon. Only the radiation oncologist suggested seeking surgery. Their surgeon wouldn't' touch me and I'm glad. When she told me my diagnosis that it had invaded the pleura, I researched a surgeon who specialised in lung cancer specifically mesothelioma. They deal with the pleura in every surgery. I found Dr. Sugarbaker at Brigham's and Women's Hospital in Boston. He's rated the top surgeon in the world for mesothelioma. He's been all over the world teaching other surgeons about mesothelioma surgery.

I called and got an appointment set up in Boston. All my records and path slides were forwarded. I had to hand carry my MRI CD. My son drove me down the first time that I met with him. You go through the pulmonary function test and blood test and then you meet the great surgeon. He was a very friendly and professional doctor. I have to tell you that he's been known to see up to 90 patients a day that come from all over the world. Now that's impressive!! 

My son and I met with him and I asked all the questions and he said to me, you know your cancer and treatment options. I told him I do my research and will advocate for myself. Now he was impressed. LOL! I think I even impressed my son that day. So he told me after reviewing everything, he'd do the surgery. I asked him if it could be Video-assisted thoracoscopic surgery (VATS)V and he said definitely. He wanted a mediastinoscopy done first to test the lymph nodes. I asked if I could have it done at home in Vermont and he said no, he does all his own testing. 

So I took the MegaBus to Boston by myself. I found a place to stay with one of the members from the support site. It was only 3 days. I did all kinds of testing the day before the surgery and she drove me in the next day. She was kind and also picked me up. The only side effect I had was a very sore neck, like whiplash.This is caused by the way they have to angle the neck way back. This lasted several days and started to get better. Then the day after I got home, the area of my neck where the incision was made was all swollen. I called down to Boston and talked with an associate. He said that was also normal. They had not included that info in my discharge paperwork, so someone got a talking to. No lymph node involvement.

Surgery was on 8/29. I stayed at a Hope Lodge 50 miles away from the hospital. The one close by was full. I had to again go the day before surgery and have much testing done. I had a ride that day from the volunteer at the lodge through the American Cancer Society. The next morning I was up and took a cab to the train station. Took the train in and then a bus to the hospital. My brother and his wife live in Portsmouth, NH and they had driven in and waited with me until I went in for surgery. It was later in the day and I couldn't eat anything. I don't remember much about going into surgery, so must've been some good knock out drugs!

Hope Lodge Grand Rapids Michigan

I do remember waking up, OMG! The pain was horrendous, guess they forgot to put the pain killer in the IV. For being a top notch hospital, I would've rated the recovery floor a 3, they were not very proficient. I was okay the next time I woke up and got up and around. Once I started moving, I was up as much as possible walking all around the floor. They had the high walkers that you could lean your arms on, which really helps you to stand up. My drain was removed on day 3 and that was an ordeal. My surgeon told the associate to remove it and he kept arguing with him that it wasn't' time. 

He then told him I was okay, I did not have a pneumothorax and the associate still didn't want to remove it but did. As you know, they follow you with X-rays several times a day. So this associate was upset and took it out on me. He had the nurse hold my legs, then he sits on my back and is pressing extremely hard and yanks out the drain. Well, you can imagine, I screamed. I was released the next day and my nephew drove down and brought me home. My tumor was 5.2 cm and had invaded the pleura and the VATS procedure was done. I also had them reduce the pre-med chemo steroids to 2mg twice a day the day before and after and on chemo day, the IV steroids were also reduced. Though they still bothered me, I managed. I did this after radiation the first time also.

I had to have a visiting nurse until the stitch was taken out from the drain. I had very little pain and only took the hydrocodone for a week. I slept in my recliner and was fine as far as the surgical incision. When I went to my PCP to remove the stitch, he had embedded it in so far, it took them two hours and three doctors to dig it out. I reported this to Dr Sugarbaker and he said don't worry I'll take care of this. He apologized and wished me well.

Back at home, I did mop up chemo. The same combo Carbo/Alimta. Much less fatigue this time but I did suffer some nausea. Nothing major and the prescription meds took care of it. I wasn't able this time to have the IV Aloxi and had IV Zofran. My insurance wouldn't' cover theAloxi. On my third chemo, I had an allergic reaction to the carbo. I told the chemo nurse I was having a reaction and they're right on it. IV Benadryl! Then I finished with the Alimta, which was only 10 minutes and went home. I was pretty out of it from the Benadryl and went home and slept.

I did my three-month follow-up CT scans for two years and then just went to one year this last time. My CT was done on 2/1 and then my med onc ordered the PET/CT as they couldn't distinguish what they were seeing. They followed that with an extensive CT to the right upper lobe that was of concern. As of now, they're thinking it's pulmonary fibrosis from the radiation scarring. But I'll be doing a three-month follow-up to keep an eye on things. It's hard to tell through the scarring what could be underneath. This is what happened with my first recurrence. So the possibility is still there that it could be a local recurrence. Nothing else showed up on my scans, which is a good sign.

My only long term side effect at this time is in my pectoral muscle. When they did the SBRT to the URL, they went through the pectoral muscle. So I have scar tissue there and under my armpit. I can't overdo the use of that arm, or I'm in pain for days. We have to remember that even though the radiation may be targeted, it still needs to go in and come back out.

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My attitude has been that it is what it is and I'll get through it. I've done it twice and will do it again if I have to. I don't get down and depressed and find it cathartic helping others through this journey. I'm here now and enjoying my grandchildren and hope to be around much longer!

You can drop by "Cards7up"'s home page here and tell her thanks for sharing her story. These personal stories about fighting through what seems like an insurmountable situation and coming through it are an inspiration to others just starting down that same path. 

Do you have an inspiring story to share with and inspire others? Drop us an EMAIL, and we will let you know how to submit your story for publication. 

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