Scared

[bluebayou]

Hi Everyone... Time to jump in and vent. I was diagnosed with NSCLC State IIA in February and underwent a lobectomy one week later. It was deemed successful and no adjuvant chemo or radiation was advised. (It seems that conventional wisdom now suggests otherwise but too late for me).

Had a four month checkup and sailed thru that. However, past few months have been experiencing lots of back pain and my new oncologist (was previously treated abroad and have since returned home) suspects possible mets to bones. I`ve undergone bone scan and should know results this Thursday. Been the type whose glass if half empty..need I say more.

But you know what guys..while the above has me scared out of my wits, whats worse is that both onclogists so far has confirmed to me that if it does recur..it will be in terminal phase and palliative care not curative is what is out there.

Does anyone out there have an oncologist saying different????

[Tiny]

Hi Blue Bayou-

I like your ID! I'm also a IIa with no follow-up chemo...too late for me also. I haven't asked the BIG ugly question about what is next down the road, so can't help you there. However, I relate to your concerns about the cancer returning and/or metastasizing...every little ache strikes fear into my heart. But you know what? It's 18 months post-op, and so far all the CT, bone, and brain scans have been good, so all the worrying hasn't helped and may be hurting me in the long run. Having said that, in the deep, dark of night I still worry !

Glad you've jumped into the fray on this site. Great people and support here.

[bobmc]

Hello Blue bayou!

Also, really like your ID; Welcome and my best to ya. I'm a 28 month survivor NSCLC stage IIB. I had my left lung removed on May 2, 2001 and was 50 years young at the time. Also, have experienced a lot of back pain, in fact had a bone scan done back in May. All was fine but like many others made a big deal of it in my head. I think it just goes with the dx. of lung cancer but does get better with time. Also wanted to say that the healing for the surgery takes time. Doc's have told me more than once that I have a whole lot of scar tissue and that things kind of shift a bit. So what I'm trying to say is that the pain you are experiencing could be just part of the healing process.

Now, about those two docs who talked about a terminal phase and palletive care. FIRE THEM and get a new doc. You want some one thats gonna give ya hope and there's always hope! That's what this board is all about. I'm sorry but I get angry when I hear doctors talking like that. Cancer is SURVIVABLE.

God bless and be well

Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01

" absolutely insist on enjoying life today!"

[bluebayou]

Thx Tiny and Bob. Going to bed tonight a little less frightened. Will keep you all posted.

[Marie]

I agree with the others. Dump those Doctors. If LC was that cut and dry, we'd all be wondering and worrying less. I still have a lot of pain in my ribs and worry with every ache or pain if it's Mets. My scan and check up are coming up in mid september and I'm already scared to death. It just goes with the territory. Hang in there.

[Gina D.]

Hello!

Dump the pessemistic docs, and remember..you have just had a HORRIBLEY invasive surgery. You bones were twisted and torqued in ways they were never intended to be, EVER, and you survived it! It is going to take quite awhile to recover from this, as far as those aches and pains there go.

I had a long term nerve block with mine, and I just now, 6 mos later, am starting to get the feeling back. My goodness! It is very uncomfortable, and I realise how lucky I was to have been sheltered throught the worst part of the bone settling and recovery process.

I share your concerns with this. Is it mets, or bruises from the invasion? Hard line to draw. My onc is good, and investigates every little compliant I have tho. He always makes me feel better with a suggestion of how the surgery mimics some things we need to watch for. So far, he has been right

This is NEW to you, and me..the balance will come, but I know the nerves will never settle. We just need to find a way to live wih this.. when I come up with a perfect answer..I'll let you know! Uhm, don't hold your breath tho

[Nancy B]

Hi, I too had one oncologist tell me that I didn't need chemo and if the cancer can back it would be fatel anyway. Needless to say I didn't go back to him. I had another lung cancer specialist oncologist tell me that I didn't need chemo and to get on with my life. That was 3 1/2 years ago and I am doing great. I even completed a half marathon last May to raise money for a cancer support group. I also experienced back pain and finally realized I was standing in such a way to compensate for the pain from my incision and everything was crooked. Once I tried to stand right it seemed to lessen - just a thought.

Take care,

Nancy

[bluebayou]

MANY THX MARIE, GINA & NANCY... God bless you all.. I feel like I have a new family. Unfortunately, I don`t really have many options as to other oncologists. He is one of three who specIalize in lung cancer only and other two agree. For insurance purposes, going to another province or country is out of the question financially (live in Canada).

Will keep you posted and again, God Bless

[s_meksvanh]

Dear Blue - it may very well be mets - but as with others who have posted I tend to believe (I pray) that it isn't. Having had 2 lobectomies - right lower lobe and left upper lobe - multiple rib fractures and months of recovery - I would be more inclined to think that it is your body adjusting to the trauma of surgery. The intracoastal nerve block that is administered during the surgery wears off over a period of 6 to 9 months - but it has been known to take even longer. The pain you are feeling now may be as a result of the nerve block wearing out, your posture, stress or (God forbid) mets to the bones.

As for your doctors - you've gotta love them - they deal with this disease and all of its misery - day in - day out - they try to be optimistic but they too are human - with odds like ours, over time, they tend to become pessimistic.

Survivors like you and I were a rarity not too long ago but our numbers are growing. Make believers out of them by sticking around a few more years - better yet - stick around until you have outlived your third, fourth, and fifth husband and have had enough spending their life savings on trips to Monte Carlo, the moon or wherever your little heart desires.

P.S. Did I mention that as a result of my last 2 lobectomies, I now have a perfectly straight line going down the middle of my body - what can I say? Symmetry is in.