DonnaC

Hi
My name is Rose. I am a 31/2 year cancer survivor of Stage 4 non small cell adenocarcinoma. I had one lobe of my lung removed in 9/11. My cancer recurred and the rest of my lung was removed in 3/13. No cancer has shown up in scans since then.
I recently signed up to be added to the LUNGevity mentor list. I am trying to learn my way around in this Tapatalk app. Hopefully I will be a quick learner .
Six months after removal of my lung and two months following my last chemo treatment I walked a 5K, was not tired, and could have walked longer! I was 63 years old at the time and had been a couch potato most of my life.
I mention all that to say how very impressed I was with the results of the oncology rehab program I participated in. My physical and occupational therapists both walked the 5K with me. For me, regular exercise has helped me tremendously!
This cancer journey has sure been a roller coaster.
Connecting with others along the way has helped me so much. I looked forward to getting to know all of you!
Sent from my iPhone using Tapatalk

Hello and welcome.  You have done one of the things you need to do , you found us.   Finding  support and information , a place to air your feelings are all very important for you.
 
They saw the spot last August? It took 5 months to diagnose?  Glad they got your treatment going. I started with daily radiation and 2 chemo drugs.  The follow up CT showed it responded.
then I had surgery to remove my right upper lobe and more chemo after. Let us know what your next step is.  Keep us posted.
 
See below to find the story of my journey, It was tough but I am so thankful I am here to tell you about it.
 
Donna G

I have an introduction, but all things considered, it's probably easier to just submit a new one.
2014 was one really crappy year. My annual testing, after eleven years cancer-free, was at the end of April. May 5, I am in with my oncologist and he is explaining to me that it's been long enough that I can just follow up with my GP. As he's talking, he's doing the neck lymph node touchy-feely exam...and hits a tender spot at my collar bone.
He says he doesn't like that, wants tests. He looks concerned, I tell him he sees cancer everywhere, that's his job, but I'm not going to worry until there's something to worry about. I am in for a CT on Thursday and then consult with him on Friday.
Need a better look at this swollen lymphynode, PET on Tuesday, poke biopsy on Wednesday. Surgical biopsy on Monday and the unmistakable sound of manure hitting the oscillator.
It's a tumor with an extremely slow growth rate - in fact, he thinks it came from the original tumor. The entire tumor cannot be removed by the ENT that performed the procedure, it's touching the carotid and the jugular vein.
Gee, maybe we should check out my head...
June 3, meeting with radiation oncologist to see if I am a candidate for radiation of the unclear margins. During this meeting, he's not as concerned with that as the lesion in my brain. June 6 Gamma Knife, radiation and chemo start June 10.
Many trials and tribulations, but still kicking. Now stage IV, but like age and weight, it's just a number.
My oncologist tells me I'm not normal - I've never tried to be. He says a recurrence after eleven years is unheard of. Yep. Blowing up stats left and right!
On the bright side, I no longer have to go to work any more and am enjoying the fur kids!
The plan is to beat this monster back under the bed with my Louisville Slugger.
Snowflake

On August 20, 2014, I called my PCP with chest pain. They could not see me and sent me to ER. EKG and pulmonary embolism tests were fine. Chest X-ray showed "spot that needed to be looked at home closely"...looked like "infection"…treated with antibiotics... Had CT scan... Back to PCP... Referral to pulmonologist... Consultation... Pulmonary function tests...CT scan... Still looked like "infection" to pulmonologist also... Pre-op testing and clearance for bronchoscopy.. wait for results... Washings for any malignancies all negative... Getting all films in same place for comparison and 2 month follow-up scan... Condition had gotten worse...referral to thoracic surgeon.. PET scan. . Left lung biopsy... Pneumothorax... Chest tube... Hospital admission... Biopsy positive for cancer... Left lobe lobectomy? …no, right lung nodules also... Right lung biopsy... Also positive for cancer... Surgery "off the table"...automatic Stage IV in both lungs... Referral to oncologist... Frightening "bedside manner"…requested change of care center and oncologist... (relative) relief... Had my first infusion last Thursday, March 19. I was OK until "the worst day, Day 3" hit me hard... Physically and emotionally... Felt fine for 7 months and suddenly feel sick, driving this "home" as real... major meltdown... Checked in with nurse... Apparently my side effects, although devastating to me, are relatively mild... Going in Friday to speak with social worker re: suddenness of facing the diagnosis and dealing with family and needing some support... Found LUNGevity and What Next and researching clinical trials, Opdivo/nivolumab, immunotherapy, Tarceva, but I do not have the EGFR mutation... Thanks for any and all support, feedback, sharing. Next Chemo April 9.