Stage 2 NSCLC Adenocarcinoma primary lung tumour

[christieuk]

Hello everyone

I am new to this site and have just been diagnosed with NSCLC Stage 2 adenocarcinoma primary lung tumour. I have some lymph node involvement.

Would anyone here please share their own experiences of battling this beast with me?

thank you and seasons greetings

christie

[Donna G]

Hi Christie and welcome. Have you seen any of your specialists, as Pulmonary, Surgeon, Onocologist, Radialogist? If you have been just diagnosed I know you must be in a whirlwind of an emotional time. So glad you found us. This can be beat. I just celebrated 12 yrs on survival. Just click below and you can read my story.

Keep us posted.

Donna G

[christieuk]

Hello Donna. I am mightily heartened by your story.

My story started with what was thought to be laryngitis commencing in early Sept this year except it never went.

Chest xray - clear. antibiotics did zilch so an appt with an ENT doctor. A view down my throat showed my left vocal chord was paralysed. CT scan was the next order of the day and this showed a nodule in the top of my left lung and lymph node involvement in my chest - this was pressing on the largyngeal nerve and causing "the voice". T2N2 was the CT scan result. A PET scan followed and fortunately there were no more surprises. However, they decided to do a CT of the head as apparently PETs dont always pick up the head very well. Again result nothing in there (least of all a brain lol). Set of lung function tests were fine.

Due to location, a needle biopsy was not possible and nor was VATS unfortunately due to previous chest surgery this in turn impacted that they were not able to resect the nodule last week so had to settle for a surgical biopsy (mediastinectomy). The result came through today.

I have an oncologist appointment this afternoon and the plan of treatment to be sorted. Initially it was thought to be concurrent chemo/radiation but having got myself a rather serious lung infection post surgery this may change. Im currently taking prednisolone, spiriva inhaler and a rather strong antibiotic - levofloxacin to get shot of this setback. So the treatment may become sequential.

As I said at the top of this message, it is good to meet someone so far past their original diagnosis. Im not a quitter and as my husband said, i owe him another 22 years of marriage at least, so there is a date to aim for.

thank you for taking the time to reply

christie x

[fillise]

Christie,

I'm sorry you have to be here, but glad you found us. I cannot imagine having to walk this path without the caring folks on this board.

Keep up updated on your treatments and be sure to ask any questions you have. Someone here will likely have experience they can share.

The good news is that stage 2 is considered curable so you will have a great chance at giving your hubby those 22 years!

Susan

[Kasey]

Hi Christie,

Donna (from above) is my hero. When I joined here she gave me info to get me to where my life was saved. You see, the docs here had written me off. My last Christmas (according to all the docs here) was to be the Christmas of 2004. Well..............here I am on my 5th bonus one! This can be overcome. Read our stories and ask questions. Be your own best advocate. And most of all ~ keep the hope that this is a beatable diagnosis. I'll look forward to your updates.

KAsey

[Bud Baker]

Hi Christie, and welcome!

I was also stage II. I had an upper left lobectomy and chemo, and have been cancer free for almost two years.

Good luck and keep us updated!

[recce101]

Hi, Christie in the UK! Yes, stage II is curable, generally defined as 5 consecutive years with no further evidence of disease. Actually, after just 3 or 4 years, anything else that shows up is more likely to be something new than a return of the old cancer, and that expands treatment options considerably. But for now, let's plan on your getting that cure!! Aloha,

Ned

[jaminkw]

Welcome Christie. As you have already read, this is a great group of people ready with support and encouragement. Let us know as soon as you have a treatment plan. If you have any questions about side effects, this is the group to ask. There is bound to be someone who has taken the treatment. Good luck.

Judy in Key West

[christieuk]

Hello/Aloha or as we say in the NW UK, Hiya everyone and thank you so much for the fantastic welcome.

So many stories, so many people still here, so much insipration and so great!!

I saw the oncologist yesterday, he is the radiation specialist. They have decided to hit me with concurrent chemoradiation, figuring that I can stand it and am fit enough too. Christies Hospital (i like the irony of "my" hospital lol) in the North West of England is a cancer centre of excellence. Their treatment plan when treating concurrently is Cisplatin and Etoposide plus I assume the radiation bit. It is for 6 weeks, 5 days per week with monitoring along the way and then follow ups to see what and where I am.

I was offered the chance to go on a trial. I did decline as Ive felt all along that I was very lucky to catch this as early as I did. The "voice" is still the only symptom I have, if the swollen nodes were not pressing on the largyngeal nerve, I would not know a thing. Do you think I did the right thing turning down a trial? My reasoning was to go with the tried and tested and then if it all goes down the pan later on, then I have nothing to lose to try something experimental.

My next step now is get over the lung infection, see the chemo doctor next, another scan for planning purposes and then starting treatment somewhere around mid January.

I would love to hear from anyone who has been treated concurrently, Ive been warned it is a particularly rough ride but hey ho who said this was ever going to be easy. Ive a holiday booked, for dare I say, Cuba next June for my husband's 60th birthday and if I can, thats where I want to be.

christie xx

[RandyW]

Christie Welcome to the site!!! Sorry you have to be with us but glad you are. I can give you a link to a site that a good friend of ours started a while back. She and her husband were fighting the system for Tarceva approval and they did get it as I understand. sadly after husband passed away so did her site. There is some valuable info on there, Re; dealing with the UK Health care system though. Ya can probably read the postings but I doubt that you would get any response though. The last post was sept 2009!

We are always around here though and can help with side effects and support! Glad they caught it early though. and that you do have good treatment center involved. I know that is important also especially over there. You also have the most common type of Lung Cancer so that is good to know because that is where the research and treatments come into play!!!

Here is that Link and sorry it is dead but might find some useful info on dealing with your healthcare system Looking forward to seeing ya around here though..

http://deannejenkyns.proboards.com/inde ... ion=recent

[Alisa]

Here's my history, and now I'm No Evidence of Disease!

I was diagnosed July 2000, Stage 3a, non-small cell adenocarcinoma, with a 7cm tumor in my right middle lobe and 2 nodes involved, but within the same middle lobe. I was 43 yrs. old when diagnosed. I had the middle lobe removed. At that point, my thoracic surgeon felt he got it all, but both he and the oncologist at the hospital (Columbia Presbyterian in NYC) felt I should have follow-up chemo to help prevent a recurrence. I had six treatments of carboplatin and taxol, which I tolerated well. I was getting scanned every 4 months for the first 2 years and now every 6 months, alternating between ct scan of chest and PET/CT scan.

As for complementary therapy: custom blend chinese herbal tea containing many medicinal mushrooms including huanglian and ganoderma; astragalus, polyphenols, licorace root, ginseng, co-enzymeQ10, and other traditional chinese herbs which I don't have the translations for; upper dose Vitamin D-3; zinc; green tea capsules; modified citris pectin; upper dose melatonin; IP6 with inositol; tumeric (curcumin); thymus spray, celebrex (200 mg/2xday); Omega 3; Thisilyn; CoQ10; PSP/Coriolus Mushroom Extract; Resveratrol, OPC (pycnogenol) and ORAC (berry extracts) - 3 super antioxidants/free radical purgers; Aloe Juice.

Feel free to reach out at any time.

[beatlemike]

Hi Christie and welcome,I also was diagnosed stage 2b in 2005. I had surgery to remove my right lung followed by chemo. Yesterday I seen my oncologist for my scan results and was told a clean report. I hope and pray the best for you also.

[blaze100]

Welcome Christie, I imagine you are about ready to start radiation and chemo.

Just wanted to add that iced green tea everyday before radiation helped keep my throat in good shape.

Good luck. Keep us posted on the treatments. Barb

[christieuk]

Hi Everyone

Thank you so much for responding and telling me your stories. I hope you all had a good Christmas and are looking forward to the New Year.

I am sorry I havent been on here, but Ive been on a bit of a down turn since I first posted.

3 weeks ago I had a Chamberlain Procedure just to obtain a sample for diagnostic purposes (nsclc stage 2) which I originally posted about.

I was discharged less than 24 hours after the procedure: tachycardiac with bad SOB and SATS of 90. I am, to say the least, unhappy with this especially since a week later when I went to see my thoracic physician a chest xray showed a rather nasty lung infection had developed. Whether this was due to the aborted VATs procedure I dont know. Ive been on 10 days of a quinolone antibiotic as well as adding Spiriva into the equation along with the Symbicort which I take for asthma/mild COPD. Then I got the flu........

Fortunately I had had a flu injection, so effectively only had a "mild" dose but this is still hanging around and pulling me down physically. Breathing wise I am a lot better, but physically Im just about toast

I am due to have my radiation planning appt this Wednesday but have still to meet with the chemo doctor. If I havent heard by Weds, then I will mention it whilst Im at the hospital.

So far as I am aware, my timetable is going to be concurrent chemo/rad presumably providing I get somewhere back to how I was pre surgery. This is 5 days per week for 6 weeks. The chemo part is everyday for the first and fifth weeks and a couple of odd days in weeks 2 & 6. My question is that as I have pretty poor veins am wondering whether I should ask for a Hickman Line or just stick with a cannula as and when required?

One thing I always find is that with cannulas my hand always swells. Whether that is a reaction to the plaster that holds it in place I dont know. Once the cannula comes out, the swelling goes away.

I am in awe of those of you who have had surgery. Ive been told that mine is not surgically operable, which I cant understand why. The 1cm nodule was due to be resected, but couldnt be due to previous surgery I have had. I was also told that the lymph nodes couldnt be removed as the swelling is wrapped around one of the main arteries/veins to the heart - hence the chemo/rad treatment. Does this sound right?

Any information/questions I should ask, please let me know.

Kind regards and Happy New Year

Christie x

[Donna G]

I, like your plan had radiation daily with Cisplatin and Etopiside for 6 weeks before I had surgery ( and also after I had more chemo)

I advise you to get a port. I later found out that it is recommended for this chemo because if it infiltrates it realy causes a lot of damage to the tissues. I had good veins but even still I have a little scar just from them pulling the catheter out.

Hope your all over the infections.

Donna G

[recce101]

Hi, Christie. I second Donna's suggestion to get a port. Repeated chemo has an adverse effect on veins, and if they're bad now, they'll most likely be worse after a few infusions. I did a Google on "Hickman line" and see that it has connectors which extend outside of the body, similar to a PICC line in the arm. An alternative (if it's available to you) is the type of port that's completely under the skin and accessed with a special needle as needed. This is much more convenient for the patient and removes the concern for keeping the area dry and bandaged. Mine is a Bard PowerPort, which can be used for blood draws and CT scan dye injections in addition to chemo.

Ive been told that mine is not surgically operable, which I cant understand why. The 1cm nodule was due to be resected, but couldnt be due to previous surgery I have had.

I've heard that scar tissue from a previous surgery can make it difficult or inadvisable to have future surgery in the same area.

Best wishes and Aloha,

Ned

[blaze100]

Hi Christie, The good news is your brain CT was clear and it seems to be confined to just left side. They just want to clean up the mediastinals before they take out the spot on your lung.

I read about the Chamberlain Procedure at Wikipedia. It sounds like it is a mediastinoscopy. Infections after mediastinoscopy are unlikely but serious. It is strange that you had SOB and heart problems the day after the mediastinoscopy.

My doctor skipped the mediastinoscopy since it creates extra scar tissue, the risk of infection, and my mediastinals looked OK on CT. But I know it is standard procedure most places.

I wonder if anyone here has experience with mediastinoscopy infection- you might want to start a new thread to find out.

I hope you feel better soon.

Barb

[christieuk]

Hi - thanks for the info about the port. I know about the Hickman line because my father had one 22 years ago when he was treated for leukaemia so I had hoped that things had moved along a bit since then. A port that is totally under the skin sounds ideal, no worries about keeping things dry and sterile and gives my poor veins a rest. I woke up with 4 holes in my hands and arms after the op (not including the drains), yet there was only one when I went to sleep lol.

You are right Barb, the chamberlain procedure is a type of mediastinoscopy. I had this due to the location of the nodes involved (hilum and station 5). However, before they did this, they did try to do a VATS procedure, but it was understood that if the lung had stuck to the chest wall due to the previous surgery, then I would have the chamberlain. This turned out to be the case. I woke up with two chest drains, one for the aborted VATS and the other for the chamberlain - whether this was an extended chamberlain, I am not sure. I dont think it was the chamberlain that caused the infection, more likely it was the aborted VATS but I dont suppose I will ever find out. Funnily enough where they made the incision for the chamberlain, they cant have been more than a few centimeters from the nodule at the top of my lung. you would have thought it a golden opportunity to slice and dice that piece whilst they were in there lol. If my memory serves me correctly however, I think they havent attempted any surgery at the moment, as they dont want me taking too long to recover and having to postpone the chemo/rad. I suppose from that they are more concerned about the lymph nodes than the nodule.

Similarly still not sure why I was tachycardic, maybe as a result of the lung infection. More importantly, why I was let out whilst only having 90% oxygen saturation is incomprehensible. Not sure around the world, but it is usually a minimum of 95%. Prior to surgery and whilst on oxygen mine was around 97% but without it was 90%. I just dont get why they didnt do a chest xray to see what may have happened.

Still what is done, is done and its now onwards and upwards.

Thanks everyone xx