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Dad with NSCLC and met to pleura

djchaves
Posts: 20
Joined: May 2012

Hi everyone. I just signed up to this thread today in hopes of getting some answers. My dad was diagnosed with adenocarcinoma lung cancer in his left upper lobe, close to the aorta, on April 17th. After the biopsy he did an MRI and PET scan. The MRI was fine however the PET showed some activity in his left pleura. The doctor said the cancer is contained to the left lung. If it did not spread he is at sage I with surgery a possibility, but if it did spread to the pleura he is at sage VI and surgery is not a possiblity. I researched online and read that if cancer spreads to the pleura he would only have 6 months. I freaked out and called the doctor, he basically said that within a couple years he would die. I went back to the drawing board (internet) and read that PET scans can show false positives. Has anyone had experience with false positive PET scan? I also read that pleurisy can show up in a PET scan, could the tumor be causing pleurisy and therefore showing up in the PET scan and not acutally be cancer but just infammation due to the lung tumor? I'm hoping and praying that it is a flase positive. We are going to Dana Farber in Boston tomorrow and he will have a pleural biopsy on May 17th. I can't take this waiting game, my emotions are going crazy. Any toughts, information, experience would be greatly appreciated..thank you!

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 273
Joined: Mar 2011

You have read correct information re. the possibility of getting a false positive on a PET scan. It's not so much an on-off/right-wrong thing like some other tests, though. As I understand it, the PET shows anywhere that has a higher metabolism rate (i.e. uses more glucose) than usual, and there are other conditions than cancer that show a high metabolism. Inflammation may be one. The normal brain also does, so a PET alone in that area isn't good for much.

You really won't know the answer without the biopsy, which is why they are doing it. Until then, try not to jump right to the worst outcome, hard though that may be.

All the best to you and your dad.

djchaves
Posts: 20
Joined: May 2012

Thank you. And I literally just read your story. Your story give me hope that he will be OK. It is hard not the think the worse but I try to stay positive and have St. Peregrine with me and pray every second that I can for God to keep my father here with us.

dennycee
Posts: 673
Joined: Mar 2011

I'm glad that you found us but so sorry for the circumstances that bring you here. X-R-R has given you some terrific advice. I would like to add that you should ignore those statistics regarding life expectancies. They are based on info that has been outdated by new treatment options and targeted therapies. At the time of my diagnosis 17 months ago, I was given 10-15 months to live. If you passed me on the street you would never guess that I have stage 4 adenocarcinoma with mets to rt lung and liver.

You are experiencing a phenomenon called scanxiety. If you allow it to, it will paralyze you, do not let it define you or your dad. There are some amazing people here that are willing to help you. I will think positive thoughts your way.

Edit to add: I was treated for a pleural effusion this past fall. At that time they biopsied the pleural tissue and found suspicious cells which turned out to be necrotic (dead) cancer cells that were too few in number to light up in a ct but had been destroyed by chemo. You are going to be a great advocate for your dad, has he filled out hippa forms naming you someone medical info may be released to?

djchaves
Posts: 20
Joined: May 2012

Thanks dennycee for your comments, it's people like you that made me join this discussion board. I love to hear survial stories like yours and thank you for the encouragement. If you don't mind me asking are you currently in remission, what type of treatment did you have? If you would like to share anything else about your story feel free..i'm all ears.

Not sure if I wrote it in the primary post but one oncologist told us my dad has stage 4 and the Dana Farber oncologist said stage 3...go figure :). The doctors in Boston didn't give a life expectancy and i didn't ask. I know my dad isn't even thinking that so i didn't want to put that in his head. I did fill out paperwork naming me as his primary medical proxy and listed as being able to receive medical information.

djchaves
Posts: 20
Joined: May 2012

So we met with the oncologist and surgeon at Dana Farber last Wed. They both suggested we do not move foward with the pleura biopsy as it will rule out any possibility of surgery. They said it more than likely will just confirm what we already know. So we went with their suggestion and canceled the pleura biopsy. The oncologist suggested he start radiation with 2 rounds of chemo (every 3 weeks) at the same time. He said the PET shows the cancer spread off the tumor going up along the lung and going down so they would be able to do radiation to that area. Jump up to yesterday..we went back to Dana to meet with the radiologist and set up the radiation. He goes to look at the PET and next thing I know he comes back with the oncologist. Apparently the oncologist missed this but the PET also shows activity at the bottom of the lung in the pleura wall/cavaity (still all in left lung) seperate from the tumor. They then tell us that radiation is no longer an option because it is not in one area and that he could either biopsy those cells to confirm or begin chemo. They suggested he begin chemo, 2 treatments once every three weeks. After two treatments they will PET or CT scan to see if it is working, if it is working he will do 6 cycles of chemo and then still have the possibility of radiation and possible removal of entire lung and pleura. They said slim chance but it could be cureable.

Needless to say my emotions have been up one minute and down the next, it really is a roller coaster ride. I just pray to God that this all works out for the best and for my dad to be able to watch his grandkids grow up (fyi..my dad is 70).

So i'm wondering, is there anyone out there who has had their entire lung removed? Anyone who has had their lung and pleura removed? The dr. said that it is not that common but has been done in cases such as my fathers?

Thank you all for the support!

dennycee
Posts: 673
Joined: Mar 2011

DJ, The treatment plan as described is pretty standard. You may want to also ask your questions of the oncologists at cancergrace.org. You asked if I am NED, no I am not. I am, however stable and that is good for me at stage 4. BTW, my math sucks! I am a 19 month survivor.

djchaves
Posts: 20
Joined: May 2012

Does stable mean it's not growing or dying...just staying as is?

dennycee
Posts: 673
Joined: Mar 2011

Hi, yes stable (if I understand it right) means that there is still evidence but that it has not grown. In my case it is still shrinking but it is visible on ct or pet-so not ned. How are you holding up?

djchaves
Posts: 20
Joined: May 2012

Hi. We are all doing pretty good. My dad had his first chemo treatment (don't have the names of the drugs on me right now) 2 weeks ago. So far so good, he has a bit of fatigue and gets upset stomach after taking taking his pills but that only lasts for about 1/2 hour or so. He is continuing his normal daily life. His next treatment is next Wednesday then we go again in three weeks for a cat scan and chemo. I hope that he is doing this well after his second treatment. We are all upbeat and hopefull, thank you for asking.

djchaves
Posts: 20
Joined: May 2012

Just wanted to give an update on my dad. He has now had three chemo treatments. He takes Pemetrexed (Alimta) for 10 minutes then has Carboplatin (Paraplatin) for one hour. He had his third treatment last Wed, June 27th. Before the treatment he had a CT done to see if the first two treatments had any effect, the dr. said 'the masses shrunk a little.' He said they didn't shrink a huge amount but they did shrink so he recommended two more rounds of chemo then another CT scan. As far as side effects, usually a few days after chemo the nausea begins, at times he doesn't know how to explain how he is feeling so I think he just feels crappy. He is still in good sprits though and is making plans for the future so i'm very happy with that. I as well have faith and pray to God and St. Peregrine everyday to keep my father with us.

I did have a couple questions. Anyone have any tips, tricks, diet to help with the nausea/feeling crappy? Also, has anyone have the same chemo cocktail...any comments regarding it? Is it a standard/common cocktail?

P.S. I love reading the inspiring survival stories! That keeps my hope alive!

Thanks

dennycee
Posts: 673
Joined: Mar 2011

Hi DJ,
This is still a great report! Sorry that he is feeling so punk. Did they give him steroids to take after chemo and for the first few days after? I took Decadron 2x a day for 3 days which helped some so the doctor added ativan which finally got my nausea under control. Much can be avoided by taking emend before or during chemo. Also, keeping him hydrated will make a big difference. During chemo or radiation the body needs LOTS more fluids. Please stay in touch.

djchaves
Posts: 20
Joined: May 2012

Hi Dennycee,

yes, he is taking decadron and ativan. He is also doing very well on his drinking, he walks around with a bottle of water all day :). How are you doing?

dennycee
Posts: 673
Joined: Mar 2011

Your note made me smile. I picture your dad walking around with a bottle of water much the way I did. Make sure to give him Gatorade or other sports drink, I drank so much water I wiped out my electrolytes making myself dizzy and dropping my bp.

I finished my physical therapy (my back) and am attending exercise classes for cancer patients. I have been able to cut way back on my Norco for breakthrough pain and plan to ask to do a taper on my Fentanyl to a 12.5mcg strength. I find that I do have more energy the more I exercise. The exercise is pretty mild but I have increased my strength, flexibility and range of motion.

This heat is keeping me indoors, 100+ degrees here in Michigan and humid. It is too hard on me to get out there and walk my 1 or 2 miles.

Have you tried ginger to help your dad's nausea?

djchaves
Posts: 20
Joined: May 2012

Hi Dennycee,

yes, he is taking decadron and ativan. He is also doing very well on his drinking, he walks around with a bottle of water all day :). How are you doing?

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