scheduled for a bronchoscopy and mediastinoscopy and am scared to death

first some background, I am a 64 yr old woman with severe psoriatic arthritis.  I have been off and on the new biological TNF meds for several years (most recently Cimzia).  about a month ago I was having a lot of shortness of breath and swelling of my ankle.  My primary doctor sent me for an ultrasound on my leg (good news was no blood clot). next was blood work and a chest CT.  all my blood work was good but they said I have nodules in my lung and lymph nodes. My primary sent me to a thoracic surgeon and I am scheduled for a biopsy on Nov 7th.  I've already re-scheduled once as I am petrified of anesthesia and any kind of surgery.  My biggest fear is that the surgeon will hit something he shouldn't and I'll have even more problems.  Evidently I had some small nodules in 2006 that I was never told about as the radiologist classified them insignificant.  I had the arthritis then but hadn't started on the TNF blockers till 2009.  I'm on 15 mg of prednisone daily right now but it's not taking care of my arthritis pain or swelling and by bedtime I ache all over and can hardly move.  All 3 of my doctors including the surgeon feel strongly that it is not cancer and are all leaning towards sarcoid disease.   My question is, is it worth the risk of these tests at this time or would it make more sense to do a followup cat scan in a few months?   Right now I just want some relief from the crippling arthritis and some quality of life back.  Sorry to ramble.  thanks for any guidance

Donna

Hi Donna,

     Well, I first of all, am very sorry you are in so much pain from your arthritis. I'm wondering if the prednisone is not working why the doctors still want you to continue with them.  But what I want to address is the thoracic surgeon and other doctors opinion that you have sarcod disease.  Before my lung cancer was found, all my doctors, pathologists, radiologists, and pulmonologist, always kept telling me, "no signs of cancer".  Well, I was tested for TB, phnuemonia, and finally sarcoidosis.

I went through 3 rounds of anti-biotics.  Still my ct scan showed "ground glass" or "sand" in my lungs.  So that ruled out phnuemonia.  I then had a biopsy where they went through my nose (I was asleep) and took a blind biopsy of my lung.  Nothing showed up there.  So, on to a thoracic surgeon.  He thought sarcoidosis, so had a biopsy where he went through a slit in my throat and got a lymph node, nothing showed up in the node, so he rolled me over and did a VATS surgery and took a wedge from my lung that held one of the "ground glass" areas.  Sad to say, this came back possitive for non small cell lung cancer.  Adenocarcinoma with BAC features.  If you click on my name, you will be able to read the rest of my story.  I had more obsticles to over-come, including finding a correct diagnosis as the the extent of the cancer.  I'm a big fan of teaching hospitals, speciallists in just your type of cancer, and who knows, they may also have some kind of better treatment for your artritis.  But anyway, Donna, I sure hope you try to get down to the bottom of your lung problems, because if it is cancer, time may be of the essence.  I'll keep you in my prayers and ask God to give you the guidence you need to make these important decisions.  Please though, please check out your lungs.  Just as an aside, how are your fingernails?  Do they grow straight out like they are supposed to, or do the curve down when they are long?  That is one sign of lung cancer that is not very well publicized.  Please keep in touch, and God Speed.

thanks so much for sharing your story with me.  before I forget, my fingernails are fine. really strange as my fingers are all deformed for the arthritis but I have beautiful nails, which I never had before.  I opted to  have the biopsy done at our local hospital but if they find anything at all I'm heading to Boston Medical (which is a teaching hospital) and where they saved my Dad when he had his heart attack.  I have an apt. with my primry doctor next week to ask some more questions and then will decide whether to go ahead with the biopsy. The thoracic surgeon said he's going to biopsy one of my lymph nodes and take a look around my lungs.  To make matters worse my cousin's wife just got sent home from Boston hospital to die. About six weeks ago she had a heart attack and was med-flighted tom Boston where she had a quadruple bypass.  when they had her openen up they found lung cancer.  She was sent to a rehab to try to build her up before they started cancer treatment but then developed pneumonia so back to Boston.  The doctors said there is nothing they can do cause when they opened her up for the heart surgery the cancer spread like wild fire so now she's back home with hospice.  Scary how life can change in a heart beat.   I  just don't want to spend whatever time I left on this earth having treatments, surgeries, etc,   It's been bad enough the last 10 years fighting the arthritis flare ups.   Guess I just have to have faith that God won't give me more than I can handle.  So glad I found this website and even if things work out well for me I will check back here occassionally too.  Also go to a great chat room called Healing Well. that covers all kinds of diseases and have had a lot of support on the RA chat room.  Can I ask what symptoms first brought you to the doctor?  

thanks so much

Donna

I'm glad you wrote back Donna.  Well, you know all those e-mails you get about women and heart disease?  I thought I was having those symptoms.  I was just a little winded when I would go up stairs.  So, my doctor gave me a stress test and EKG or something like that, and all came out that my heart was fine.  So then, she sent me for an x-ray.  On the X-ray they saw what looked like ground glass.  So, she thought it was pnuemonia and I was on a round of $200 anti-biotics.  After another x-ray nothing had changed, so she sent me to a pulmonologist.  The rest is history.  But at least I was finally able to be diagnosed after having a Vats surgery for a biopsy.  The thoracic surgeon who did all this sure scared me up, so when I finally was diagnosed, got another opinion, and had my lobectomy, I had to have a pretty drastic operation with a scar about a foot long.  But, I thank God every day for my life.

Such a sad story for your cousins wife.  The problem with lung cancer is that usually it's not found at an early stage.  If it is found early it is because of something else and they just happen onto finding it.  So, there are lots and lots that are at late stage.  There are 4 stages to lung cancer.  I was diagnosed stage 3a.  I had 3 tumors in my upper right lobe.  But, I was very fortunate that all margins were clear, and there was no lymph node involvement.  I had 4 sessions of chemo over 12 weeks.  Now I have been NED since July 12th of last year.  I get CT scans every 4 months, my next being the end of November.  But, enough about me.

I know what you mean about spending what time you have left in this world just having treatments, surgeries and what not.  But I also want to tell you that there is so much going on in lung cancer treatments, that people are living with cancer for years and years.  Keep your faith close to you, and whenever you find something gets to much to handle, well, heck . . . . . . Give it to God at night in your prayers, he's up all night anyway.  lol  I have a picture with that saying on it.  But, it does work, when you give it to God, he will take care of it for you.  Peace to you Donna,  Helen

Dear Helen,  thanks for sharing with me.  I can't imagine going through all that you've been through.  I like to believe that God doesn't will any of this stuff on us but that he will either keep us strong enough to get through it, heal us or bring us home (which he did with my brother, who passed at age 63).   I visited my cousin's wife yesterday.  She is only 63 too and the end of August she had a heart attack at work.  She mhad a quadruple bypass and when they opened her up found lung cancer.  She was sent home for rehab but suffered some minor strokes so back to the hospital.  Then they sent her to an inpatient rehab to try to build her up so they could start treating the cancer.  Next she developed pneumonia and back to the hospital again.  She was sent home to die because the cancer had spread to the point where there was nothing they could do.  She has  hospice and I doubt she will last another week.  Less than two months ago she was working as an aide in a nursing home caring for others.  Life can really change in a heartbeat.   I have no fear of where I'm going when I die but I really am not ready and I'd be a liar if I said I wasn't afraid of "how" I'm going to die.   I wish I had appreciated life more when I was younger.  I always think of when my best friend's brother died of stomach cancer.  He wanted to be cremated and when we went to the wake, the box with his remains said "It is, what it is".   That has become one of my favorite sayings.  I hope I haven't sounded too morbid.  trying to keep a sense of humor.  Just for today, I'm going to be grateful for another day, the sun is out and my arthritis is tolerable and I don't have any doctor apts till next Friday.

God Bless

Donna

Donna, Your letter made me smile.  Because actually life really "is what it is".  lol  You see what I mean about lung cancer being silent.  Your cousins wife had a normal working life 2 months ago.  A dear friend of mine found out she had lung cancer on Valentines day of this year.  7 weeks later she died.  I do count my blessings that I found this cancer when I did, and also that it was able to be removed with surgery.  That is the hope with all of us lung cancer patients. 

I also have no fear where I will go when I die.  I have always had a strong faith in God, and I also don't believe he gives us any diesease.  I believe he is there to help us pick up the pieces.  I also believe we are never given more than we can endure.  I do know when I found out I had cancer, I never asked "why me", never.  I beleive I asked, "why now", because I've been so happy and content in my life at this point.  But, whatever, I got over that pretty quick.  I do know that I told my husband that I am one of those who never wanted to know how they were going to die.  I didn't want to face that knowledge. I'm better about that now, but I must admit that for a while all I could think about was the cancer.  So, one of the best things I did was get a prescription of xanax (smallest dose) to take care of the anxiety.  I didn't take it every day, didn't need an anti-depresent, just something to take care of the anxiety when I couldn't get my brain to stop fretting.  I am one of those who has always appreciated life, even when younger.  I'm 57 now, and feel as if I have lived one fine life.  I've hitched hiked cross country twice (way back in the early 70's when it was safer)  I've traveled and worked and played.  I was never rich, but I was rich in friendships and family.  I still am.  I like how you say you are grateful for another day with the sun out and the arthritis is tolerable, and no dr. appointments.  You sound like me!!  lol  Those are the kind of things I count in my blessings.  I sure wish I could take away that danged arthritis pain for you.  I sure do!  You say you can't imagine going through what I've gone through, but you know, when I look back on it, it wasn't that bad.  I don't know why, maybe because I had really good pain control.  I do think that is key which is why I am so sorry you have your arhritis.  You sure have not sounded morbid to me, and I hope you keep in touch.  Let me know how everything goes, and I will certainly keep you in my prayers.

Take care and God Bless, Helen