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Stage 1A to Stage IV in a heartbeat


Kneesaa

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Hi Everyone,

I am a new member here but I am not new to Cancer. I am soon to turn 63 and I live in the NW Hills of CT. My story is rather strange the way things happened. I must have had a Angel watching over me

In late August of 2006, my neighbor across the street was putting in an inground pool. They had dug up some beautiful big marble looking rocks that I just had to have for my garden. I was climbing the dirt piles and picking out rocks that I could lift but not straighten up with. They were big and I guess I was showing off a little. I don't like to be considered old. So happens three days later I had my appt. with my PCP for my regular check up. Naturally the first thing they ask you do is "pee" in the cup. A short time later the nurse came in and said I had microscopic blood in my urine. I tried to tell the doctor about the rocks but he didn't buy it and sent me off to an urologist to have my bladder check. He ordered a cat scan. The bladder was fine but it had picked up a spot in my middle right lobe. The report said it was 2.5 cm and should be watched for matastic disease. My doctor said we are not waiting for anything, we will find out what this spot is. I had the dediicated lung cat scan with constrast, a Brain MRI, a full body bone scan and finally the Pet scan. The spot lit up so I was sent for a needle biopsy. Came back as adenocarcinoma. Within three weeks I was in the hospital gettting the little skinker removed. My Thoresic surgeon thought it best to take the whole middle lobe - better chance for not having a reocurrance. I was Stage 1A, the tumor actually measured only 1.5 cm and I was told no further treatment.

I didn't need an oncologist but the cancer center where I hade gone for opinions asked if I would be willing to participate in a phase tthree selieum trial. I agreed. I went for scans every three months until December of 2007. At that time I was told I could now start coming in every six months. Life was good! In June when I went back for my Cat Scan they saw a little something on the apex of my LL Lobe. I told the doctor that I had a bad chest infecrtion during the winter and she agreed that was probably all it was but wanted me back in three months. Thia brings us to September 2008. Had the scan - all is clear and I am put back on six month cat scans. Early December I get a call form the cancer center asking me if I would mind coming in for an extra scan because I had the one in September and now the clinical trial schedule was going to be all off. I came so close to saying no but I agreed and went. This time the previous mentioned spot showed up again and had grown to 8mm. too small to biopsy. I just wanted the thing out of me. I had a Pet scan and it lite up. I than went through all the orther tests, Brain and Bones all clear. Winthin a week I was getting the surgery. The sugeon tried to do the Vats on me but couldn't find the spot. They than did the major slice open and still couldn't find it. The surgeon actually had to palpatate my lung with his fingers to find it. He removed it along with about 1/8 of my lung. Pathology came back that it was indeed adenocarcinom again. Trouble is they couldn't tell whether it was a matastized tumor or a new primary. Because it was on the left and my first was in my right I am now officially a Stage IV. The tumor is out and I have no cancer anywhere in my body and yet I am a Stage IV. Kinda hard to take after going over two years as a Stage 1A.

I have started chemo - Taxoter and Carboplatin. Avastin will be added at my second round. I go every three weeks for 4 to 6 rounds. Don't know yet. Than she will keep me on Avastin for awhile along with Tarceva for who knows how long. I am thinking it is a bit much but I'm not the oncologist. My hair is falling out, I am depressed, and yet the way everything happended, almost by accident I feel very blessed. If my neighbors hadn't put in that pool I would still be walking around with the first tumor and probably starting to get symtoms by now. Yes I have pity parties but than I read about what others are going through and I am ashamed of myself.

Hope to meet some of you members and exchange stories, until than I will send comforting HUGS to all. Kneesaa

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Welcome Kneesaa. Boy sounds like you are very fortunate to have great Doctors. Sorry you had to go through treatment again but better to know and get treatment than for it to get out of control. Keep us posted.

This is doable. See below for my story, I am an 11 yr suvivor!

Donna G

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Welcome Kneesaa. I might have good news for you. I was dx. in 2003 with Stage 1B NSCLC. I had surgery to remove my right UL. Altho. the surgeon told me I didn't need any more treatment, I sought the advice of an oncologist and decided that adjuvant chemo (carbo and taxol) would be a good idea. Following chemo, I had CTs every 3 month. 18 months later cancer was found in my left LL. I had a PET scan and was in surgery three weeks later. Again, the diagnosis was stage 1B NSCLC. My doctors in VA seemed to think this was a new primary. Shortly after surgery (3 wks) I moved to FL and the Onc. I saw there considered it to be stage IV because the specific types of cancer were the same both times, so they couldn't definitively say that it was a new primary. Nonetheless, he also didn't seem too excited about chemo again. [We never understood this] I did go ahead with chemo (cisplatin and Gemzar). I also changed drs. in the midst of chemo and the second dr. didn't want to offer an opinion on it being mets or a new primary. Since it has now been more than 4 years, it seems to me that it was a new primary. My current Onc (yes, I did change one more time) seems to think that it isn't likely that the second cancer will return. Possible, she said, but not likely since it has been such a long time.

So, your story may end like mine. It's been 5 1/2 years since the first diagnosis! Good luck.

Muriel

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Kneesaa, welcome to the site. You will find a lot of great people here. My story is not quite like yours but like you, they found my cancer by chance. I had pneumonia and the cells in the fluid told them I had adenocarcina primary left lung. Problem is they never found any tumor. They consider the malignancy in a thickening in the chest wall to be a micrometasticism. I am stage 111b, IV in the new staging system but PET and CT in April 07 should no visible evidence of disease. I had 6 Carbo/Taxol/Avastin and 11 maintenance Avastin infusions, all on 3-wk cycles. It is hard to take being a 111b when they never found a tumor and the maligancy in the chest wall they didn't even expect to shrink is gone and nothing lit up on the PET. Like you say, we're not the oncologist but this stinks. Think positive. I know I am.

Judy in Key West

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Hi, Kneesaa, welcome! I agree that there were some very fortunate events in your story. That contrasts with all too many members whose diagnosis came after months of false leads and perhaps even some denial on the part of their doctors.

Let us know how you're doing with the chemo. Many of us have had that same combination or one very similar, and we can help you with the side effects. Are you also getting a Neulasta injection the day after the infusion? Best wishes and Aloha,

Ned

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Welcome Kneesaa,

I am a 5 year survivor that was initially diagnosed at stage IIIa. For the last 3 years after progression to my bone, I was restaged at stage IV. My treatment for the last 3 years was with Avastin and Tarceva. The good news is that these drugs have worked miracles for me and many others - and your hair will grow back!

I have my fingers crossed that they work for you too,

Wendy

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