Newly Dx Stage 1

[CynthiaO]

I saw my pulmonologist today for the results of a PET scan and MRI brain scan that I had on Wednesday. He said I have what appears to be stage 1 lung cancer. The single mass on the upper lobe of the right lung is the only sign of cancer any of the scans showed. I had a chest x-ray on 6/23 as part of my annual physical. The abnormal mass seen on it led to a CT scan 2 weeks ago. That led to the scans this week.

I see an oncologist on 7/27. He called me yesterday to tell me the results of the scans and to say he thinks surgery is my only option for a cure. I told him I thought perhaps radiation might be less invasive and an option. He disagreed and said the chances were only 40% to 50% with that. My pulmonologist said essentially the same thing. I am waiting till I hear from the surgeon now for an appointment.

I was told I would need a lobectomy on the upper lobe of the right lung. That I would lose approximately 20% of the lung capacity from this operation. He also said I'd be in the hospital about 7 days. I believe he said the surgeon collapses the lung in order to cut out the tumor and the portion of the lung he's removing as well as some lymph nodes. Then they do a biopsy after the operation.

This operation terrifies me. It sounds horrific and unbelieveably painful with a tube sticking in the collapsed lung? I would love to speak with others who have survived this surgery and what their experiences were. Is it as barbaric as it sounds??

I live on the west coast of FL in the north central section near Gainesville. That's where all the doctors are. They just opened a new cancer center at North Florida Regional medical Center. They have a Cyberknife there but 3 doctors have told me that's only for people who aren't candidates for surgery.

Thanks for any input and help ~

[Kasey]

Hi Cynthia!

I had an upper right lobectomy in January '05. PLEASE do not be put off by what you believe to be a painful ordeal. For stage 1 you are SO lucky to be offered surgery. Any surgery is no walk in the park, BUT if offered it, TAKE it and run!

You can read my own story in the My Story forum - story by Kasey. Please contact me if you have any reservations. I always say to keep your eyes on the prize and do whatever you can to get there.....the there being NED ~ No Evidence of Disease!

I had a very NASTY tumor. I am so blessed to be ALMOST 5 years out from it. Lung cancer is no walk in the park, BUT does NOT have to be death sentence either. Be proactive and vigilant. Let me know if you need any info.

Kasey

[RandyW]

I just posted a Link to a live or that does demos of some operations !! How Ironic Huh?? Go for surgery. Its the best way to go if your a candidate. I have a friend who had a problem and had the surgery with a follow up of a low level chemo and she is fine these days.. Can run circles around ME!!!!! She is out of hospital 3 years out and not a problem in the world.... well not cancer anyways!! Welcome, Don't be scared, we are all Familia here!! Its beginning of weekend so not sure how much response you will get before Monday.. I could be wrong though!!

[CynthiaO]

Thank you Kasey and Randy!

Kasey I will go read your story in a bit. I'm used to dealing with cancer, just not my own! My husband is a 13 year survivor. He was dx with prostate cancer in July 1996. How ironic huh? Same month 13 years ago. His prognosis was grim with only a 2 to 5 year survival chance. He has a very aggressive form of PC and we have fought that beast every day since. He's doing great now {2 years out from a 3 month radiation to the bladder}.

We celebrated our 40th anniversary in December and I celebrated my 60th birthday last weekend in the hospital. I have a heart condition known as SVT. Supra Ventricular Tachycardia. My heart has episodes where it just starts racing and can last for 2 hours up to 12 hours. A week ago today I was at my cardiologist's for my 3 month checkup to discuss a new type of surgery to cure my problem. He had always said he wished I'd have an episode at his office so he could record it. Well, I was so stressed out after seeing the CT scan report I had a doozy. He admitted me right then and changed my medication. He also asked for a consult from a pulmonary doctor and an oncologist. My doctor was on vacation at the time. That's how I got to this point.

Sorry, I'm rambling. Nerves! Forgot to say I smoked for 40+ years and stopped last Friday when I was admitted to the hospital. 7 days smoke free!!!!!!!!!!!!

[Patti B]

Cynthia-

Welcome to this site. You will find it a site with lots of supportive people and information.

I cannot offer you any information about the surgery as I was dx'd as Stage IV and not a candidate for surgery but many of the folks here have undergone surgery.

Will keep you in my thoughts and prayers - please keep us updated on your progress.

Hugs - Patti B.

[RandyW]

If ya get past the first three days with out one Your good to go !! 6 years out now!!!

[Donna G]

Hi Cynthia. Welcome. I had my Right upper lobe removed. I am glad to be rid of it ( because it had my tumor in it!) It was tough surgery for me but look it is history, over 11 years ago!

Best wishes . Let us know how things are going. keep us posted.

Donna G

[barbvh]

Cynthia,

Welcome. I had my right lower lobe removed by thoracotomy in 5/07. Dx stage 1a. We are both lucky and blessed to have had our cancer caught so early. You indicated a 7 day hospital stay, so I assume that they doing a thoracotomy not VATS procedure. At stage 1 the chance at a cure with the surgery is very high. Try to make that foremost in your mind. You can send me a PM (private message) if you would like more details about my experience. We will be here to support you.

[LovesLife]

Hi Cynthia and welcome. I had surgery done 3 years ago for Stage 1A and I was ecstatic that I was able to be offered surgery. Mine was done by a qualified thoracic surgeon (very important to get someone who does a great deal of lung cancer surgeries) and due to my small size and location was able to have a VATS (which is a less invasive procedure than the thoracotomy). I was told prior to surgery though that if he needed to move to a thoracotomy for any reason he would do so.

Mine was a left lower lobectomy and honestly I can't tell the difference in lung capacity and most probably don't with one lobe removed unless you are a competitive athlete or have compromised lungs to begin with. I know that surgery sounds scary, but oh my goodness, what a wonderful opportunity when it is offered. I had someone on hand to help with things that needed doing at home, friends and family brought meals (I also froze meals in advance just in case) and the pain pills helped. It wasn't a walk in the park, but it was so worth the good outcome - 3 years and NED - and I wish the same and many more for you. Please don't let your fear stop you. Meet with the surgeon and let him know your concerns - hopefully he can set your mind at ease.

Congrats to your husband on 13 years! Sorry your birthday was spent in the hospital - next year you will have to celebrate in style - at least not in a hospital!

I'm sorry you have to be here, but sure glad you found us. BTW, congratulations on quitting smoking - it's hard to to and you should be so proud of yourself.

Keep us posted,

Linda

[ts]

Had my surgery last November - went in thinking I would get VATS, came out tumor free, but with recommendations for chemo and radiation. Surgery was the easy part, despite how barbaric it is. A good surgeon with lots of experience in lung surgery is the way to go.

Stopping smoking will serve you well in recovery. Way to go.

We will be here to talk you through the joys of pain meds, hydration, and constipation. We get close real quick around here. Humor helps.

Oh, and don't be afraid to ask for some anti-anxiety meds to get you through to the surgery. Just takes the edge off.

[gail]

I understand your concerns and questions. I had a lower left lobectomy 8 years ago and never regretted that decision. This was my third cancer surgery, and it was NOT my most painful (the mastectomy with tram flap reconctruction was). Was it easy? No. Was it scarey? hell yes! Am I glad I had the surgery? Absolutley.

gail

[beatlemike]

Welcome Cynthia,Sounds like you have a good chance of being cured with the surgery. I had my entire right lung removed and have no regrets.Please keep us updated.

[Muriel]

Hi Cynthia,

This is a very scary time for you. Things will get better, tho. I remember thinking, after getting my CT and PET results, that anything would be better than surgery! That was in June 2003

I've had two lobectomies - URL in June 2003 and ULL in Nov 2004. Both tumors were considered primaries and were staged at IB. I had followup chemo both times and now, six years later I'm still here to talk about it.

This surgery isn't a whole bunch of fun, but not as unpleasant as my total knee replacement. They can do a wonderful job of managing the pain. After you go home, prescription pain pills and then something like Aleve should work just fine. It takes a long time to recover and when you get to that point, lots of us here will tell you what to watch out for, what to do, etc.

I was in the hospital 6 days the first time and four, the second. I think the Dr. was ready to send me home on day 5 the first time, but I told him I thought I needed to stay another day.

It does look sort of barbaric, if you've seen pictures or video of the surgery, but it's really not. It definitely is NOT unbelievably painful (the pain can be managed). The drainage tube can be annoying and a little uncomfortable after a couple days, but not something to fear. Yes, it does come out eventually - generally before you go home. It comes out very, very quickly - esp. if the doctor is really good at removing it.

I was truly terrified at this stage of my journey. My doctor gave me welbutrin to help me quit smoking and to calm me down. She also gave me a Rx for ativan and that helped a lot, too. My surgeon and pulmonologist didn't think I needed chemo. I talked to an Onc. and decided that it would be safer (as a 1b) to have chemo. He also changed my "panic" meds. from Welbutrin to Zoloft.

All of this happened to me when we were living in northern Virginia. 2+ weeks after the second surgery, we moved to the Orlando area and I had chemo here. I'm on my 3rd Onc. in Orlando. The first was sorta strange and the second was very evasive and not very caring about the little things that go with followup - CTs and followup appts., for ex. My 3rd Onc is at MD Anderson Cancer Center and she and MDACC are marvelous.

If you'd like to talk to me on the phone, send me a pm with your phone number and I'll call you. (We pay a fixed rate for long distance.)

BTW, I was 64 when this started and wondered if I'd see 65.

Muriel

[recce101]

Hi, Cynthia, welcome to the group. I know at this point it's hard to think of yourself as lucky or fortunate, but as some of the others have implied, you'll probably come around to that view in time. In a few months, I can even see you writing to other "newly diagnosed" members offering your own positive story and words of encouragement. Best wishes and Aloha,

Ned

[CynthiaO]

Thank you all so much for your replies. I need to hear positive things and you all have certainly done that! I am trying to change my mindset since the dx yesterday. I guess I need to stop obsessing about how terrible I will feel going through the surgery and all the pain. I need to rethink this and perhaps look at it as though the surgery is something I have to go through in order to save my life?

Can someone explain what VATS means? I am guessing it's a type of surgery that is preferable. I can't seem to find any info here on it, or what factors need to be present in order to have it over the other {Thorassic I think?}

[SandraL]

Hi Cynthia and welcome to this site. I see you have received lots of good information already. So hopefully surgery continues to be an option for you. You will get through it and you have members here to help you. Please keep us posted on how you are doing.

Sandra

[recce101]

Can someone explain what VATS means?

Video-Assisted Thoracoscopic Surgery. Uses one or more very small incisions instead of the long incision, rib spreading, etc. required for a full/traditional thoracotomy. Yes, this is much preferred provided the surgical objective can be reached in this manner. Many surgeons begin with VATS (aka thoracoscopy) with the option of transitioning to a full thoracotomy if necessary. Here's a good link:

http://www.mayoclinic.org/video-assiste ... c-surgery/

Ned

[CynthiaO]

Thank you so very much Ned! That's the first thing I'll be asking the surgeon when I see him. I'll be praying the answer is yes.

[Bud Baker]

Hi Cynthia. I had an upper left lobectomy in December, 2007. It is, indeed, a tough and painful surgery. But doctors pretty much agree that it gives you the best shot at a cure, and it is possible to do very well for many years after this surgery. Good luck, and keep us updated.

[jaminkw]

Cynthia, welcome to the site. Sorry you had to find us but it sounds like lots of members can relate and offer positive support for your surgery. Let us know how the visit goes and if and when your surgery is scheduled. Take deep breaths now and just dive in. We are all here to support you.

Judy in Key West

[fillise]

Cynthia,

I'm so sorry about your Dx, but Stage 1 with the option for surgery offers the best hope for a permanent cure. Think if it this way. Cutting the tumor completely out is the best way to make sure it can't grow or send out cancer cells to other parts of your body.

Let us know what you decide,

Susan

[Andrea]

Just echoing what the others said, it is great news to be a candidate for surgery! Both of my parents had it and they both said it was nowhere near as bad as they thought it would be. Good luck!

[dahknee]

Hi Cynthia, I too was diagnosed 1b and a candidate for surgery. I had my upper right lobe removed 3/08 and there were a couple of problems while in the hospital so I stayed for 2 weeks but was released with no evidence of disease so chemo was not recommended. I did have another occurance in October 08 and began chemo and radiation then and am now going through another round of chemo, but last week I was given the no evidence of disease determination again and may be a fortunate one who never has it return. I didn't have the VATS procedure and was in pain for a while but all well worth it in my opinion. Congratulations on stopping smoking, that is the hardest thing I ever had to do but have been smoke free for ten years now so I know it can be done. The amazing thing to me was to see in the exrays after the surgery how quickly the middle lobe begins to fill the void left in our chests to give us back a large amount of the breating capacity we had before the lobectomy. Keep your spirits up and stay in touch here. There are alot of wonderful and knowledgeable and experienced folks here that are alll willing to help or just to lend an ear... Good luck and see you around the boards.

[chloesmom]

Hi Cynthia,

I was diagnosed in June of 2003 and had an upper left lobectomy. I was terrified of the surgery, and, while there was pain and some recovery time, what I wanted was to give myself the best shot at a cure. You need to jump at that opportunity too.

I was also told that I'd be in the hospital 4-7 nights, but I fortunately only had to stay 3 nights. My surgeon also said that there would be no extra credit for pain, so I should speak up if I had pain. And I did. People who have pain controlled recover more quickly.

It wasn't easy, but I did follow the instructions--using the spirometer to get lung function back, start exercising as soon as possible, and take time to heal, and I was back to 'normal' sooner than I thought.

I also took adjuvant chemo after I recovered from surgery. At the time, there was evidence of increased cure rates, and I wanted to do everything I could to see that it didn't come back.

Good luck to you,

Cindy

[jstdzy]

Hi Cynthia,

I had an upper left lobectomey, you have 2 lobes on the left and 3 lobes on the right, so you will be losing less lung then I did. I would do my surgery again in a heart beat. I was in the hospital a week they had me on a spinal block so I felt no pain at all. The pain killer Tramedol the doc sent me home with worked great. It is a major surgery no doubt about it, but I know my Mom went through a heck of a lot worse with her heart surgeries. What's funny is my oxygen level pre surgery was 90-92 percent, after they removed my ULL (which is about 60%-70% of the left lung) my oxygen level went up to 97%! Like Cindy I followed up with adjuvant chemo Let us know if what you decide, definetly ask about VATS. We can help you through this!

Dana