Jump to content
Sign in to follow this  
Eileen4

Newly Diagnosed

Recommended Posts

Hi! This is my first post...

About 6 weeks ago, a CT scan showed a mass in my upper left lobe. A bronchoscopy 2 weeks later was negative for malignancy but the pulminologist thought it might be a sampling error as the tumor was "very deep" and arranged a PET scan. The mass glowed! I am having surgery on July 10th to remove the upper left lobe. What's confusing to me is that the surgery was arranged 3 weeks before the PET scan was done as the surgeon who looked at my CT scan diagnosed it as cancer without any biopsy. Has anyone else been diagnosed this way? I'm coming out of the shock of it all but I'm sure that this time next week I'll be sick with fear as the surgery sounds gruesome. Any advice/information you can give would be greatly appreciated. Thanks.

Share this post


Link to post
Share on other sites

hello Eileen,

Welcome.

And, sorry you have to be here, but glad you found us.

I think you have a lot of good common sense. That's what I think. I don't know how a surgeon can diagnose lc from an xray/pet/ct.

Seek a second opinion please. Third opinion if necessary. You need to be perfectly clear and every cell in agreement before accepting a treatment plan.

Good luck to You!

(what part of the world do you live?)

Cindi o'h

Share this post


Link to post
Share on other sites

Welcome Elieen4 and I'm sorry you had the need to find us, but I am glad you did.

I totally understand your concerns and your fears. Been there, done that! :roll: It sucks! Some doc's really can tell by a CT scan if it's cancer or not, but having a PET scan is a good thing. There are a lot of times they can't tell without a biopsy. Everyone is different.

The surgery is no picnic, but the alternative isn't to great either! :roll::wink: The surgery is very doable. Lots and Lots of people have had that surgery and they are doing very well after the fact.

I had my left lung removed 11 years ago, and I'm doing just fine today.

No surgery is fun, but you'll get through it and we'll help you if you let us.

You'll need a small pillow. This is good to have when you need to cough. And yes, they will have you cough after surgery! You'll want to put that pillow on your incinsion area. It works like a charm.

Put your party hat on, and walk into that hospital with a positive attitude and say to yourself, over and over, " I CAN DO THIS " I find that if you make light of a serious moment, you'll find it's really not that bad! Let's get his cancer out of here.

Keep us posted. Holler if you need an ear or a friend.

Share this post


Link to post
Share on other sites

Thanks Cindi and Connie for your replies.

I did have a second surgical opinion and also saw an oncologist. All are in agreement that it is most likely cancer as I am a long time smoker, and they claim the only way to determine what is in my lung for sure is by surgery to biopsy. Apparently a needle biopsy is not an option. The surgeon at Moffit not only said it was "undoubtedly cancer" but also offered the stage and the type just from looking at the CT! I just feel that this surgery is so invasive without a definitive biopsy. Yet the PET scan glowed in the very area the tumor is. I'm also concerned that six weeks have gone by and am afraid it's metastisized (sp) by now. Honest to God, this is so stressful because it just seems so inprecise. Thanks for the tip about the pillow Connie, and I'm thinking I sure will need some support through this. I'm so glad you're all here :)

Share this post


Link to post
Share on other sites

Welcome to the club. Sorry you had to find us and glad you did. We have a number of members in Florida and a few who go to Moffitt For treatment. this is a good place to be under the circumstances. Sending a prayer.

Share this post


Link to post
Share on other sites

Hi Eileen,

My situation was a lot like yours. I think that after surgeons look at thousands of scans and pet results, they are pretty confident in knowing what they are seeing.

Having said that, they also can't tell what a mass is until they have tissue to test. But, as my surgeon explained, a biopsy has dangers too, among them being a false negative, bleeding, collapsed lung, etc.

Characteristics that show up on a CT can help a surgeon determine stage. He can tell it's approximate size, which is a staging factor. That's not uncommon for a surgeon to give a preliminary stage pending results of lymph node sampling.

Also, I was told that the type of tumor I had changes in size about every 90 days, so, while it needed to be attended to soon, it was not an emergency. My surgery was about 4 weeks from my PET.

In my case, while they didn't schedule surgery before the PET, I was told to quit taking my daily baby aspirin immediately, which, now looking back, was a giveaway that surgery was in my future.

I also had an upper left lobectomy. It wasn't easy, but I was back to work in 2.5 weeks. Not moving real fast, but well on my way to feeling good again.

Good luck to you and keep us posted.

Cindy

Share this post


Link to post
Share on other sites

How encouraging to hear this, Chloesmom. I can only hope my recovery will go as well.

I'd love to hear from anyone who dealt with Moffit as I have mixed feelings about the place, so would appreciate your thoughts and insights.

Share this post


Link to post
Share on other sites

So sorry you have to be here but glad you found us.

I may be getting surgery myself,not sure until my next pet scan july11,see onc on the 17th.Im scared too but I want this monster out and am determined to do whatever it takes.

You have come to the right place for support.Alot of us have been in your shoes.

Marie

Share this post


Link to post
Share on other sites

I was told from a regular chest xray that I had lung cancer. Mine was a solid tumor larger than a golf ball. I had all the tests, Ct guided biopsy, PFT's, etc scheduled after that day to find out which type it was. I think it depends on the size, characteristics etc ( as if it looks just like a blur it may be tumor or it may be pneumonia)

Whatever , best wishes. Keep us posted.

Donna G

Share this post


Link to post
Share on other sites

Hello and welcome Eileen

I am sorry you had reason to find this board but glad that you have joined us.

As you have already seen there are many caring and knowledgeable folks here that are more than willing and happy to answer any of your questions and offer so much support.

Please keep us up to date on things with you so we can help you as much as possible.

Sending prayers and positive thoughts,

Chris

Share this post


Link to post
Share on other sites

Welcome Eileen,

I am scheduled for surgery on July 10 also. My first surgery (nsclc) was done after a needle biopsy. Upper left lobectomy. But, the second tumor was too deep in my lung and too close to my heart for a needle biopsy, so I had to have surgery (lower left wedge resection) for them to biopsy it. Turned out to be sclc.

This time a tumor lit up on a PET scan but, again, it is at a place they can't get to, so off I go to surgery again. Please let me know if I can help. I will be glad to try to answer any questions you might have about the surgery and recovery. The surgery is not easy but, as Connie said, it is certainly doable.

I will be thinking about you on the 10th.

Take care,

Nancy B

Share this post


Link to post
Share on other sites

Hi Eileen,

Welcome here, sorry you had to find us. You mentioned that the doctor said it was very deep. So most times they can only get a biopsy through an operation.

They pretty much know by looking at it if it is cancerous or benign. Even if it is benign you would still want to get it out. A close friend of mine was diagnosed with a mass being benign but still had a lung removed to get it out.

The operation is doable and not as bad as you my anticipate. Just make sure they give you good meds and you will be fine. And yes make sure you have a good soft pillow for when you cough. Someone gave Joel one of those small squishy pillows that work really good.

BTW you are very lucky they are operating as only 1 in 4 can have an operation. When they are operating they will take biopsies of the lymph nodes and different areas to find out if it is clear there. That is where you actually get the correct staging.

We all know what you are going through and how scared you are. But please know that this is best for you and you will be fine. Just keep a positive attitude and faith.

We are always here for you, for support, questions and prayers if you want them.

Good luck, know that you are in good hands. That is an excellent facility.

Maryanne

Share this post


Link to post
Share on other sites

Thank you, Maryanne. You all have no idea how encouraging it is to hear from you and especially to read how so many people are still here despite setbacks and recurrences. I truly felt I had been handed a death sentence 6 weeks ago and believed I would be gone within the month. (My sister was diagnosed in 2001 and died very quickly--gone within 3 weeks, so my panic button really went off and the first thing I did was to scramble to a lawyer to get all my affairs in order and find good homes for my furbabies.) Talk about panic out of control :oops: ! Then I started googling for Survivor stories and tried to educate myself a little. Message boards, and particularly this one, are truly invaluable for they give you the one thing you need to get through this--hope! From the bottom of my heart, thank you all for sharing your stories and for your support. I'm sure I'll be needing it in the months to come.

Eileen

Share this post


Link to post
Share on other sites

Hi Eileen,

Sorry you needed to find us, but welcome. I go to Moffitt and have in general been happy with the care. While I agree that operating before a difinitive diagnoses is reached seems hurried, I suspect they do have sufficient information for certain situations. The good news for you is that they don't operate if the cancer is advanced enough. When my tumor ws discovered, it was stage IV, so too late for surgery.

From what I understand, you will have some problems with the recuperation - it is major surgery. And you have all the "head" parts of your being to combine with the physical. But you'll pull through fine!

Good luck. I will remember in my prayers.

Mary

Share this post


Link to post
Share on other sites

Welcome Eileen,

I know the anxiety that you are feeling and the fear. Like Connie B said, "this surgery is doable". It ain't no picnic, but it is doable. I had surgery one year ago today. I was stage 3A. Today I am cancer free. The people on this board gave me such wonderful support and encouragement. It truly helped me and it will also help you.

Carol

Share this post


Link to post
Share on other sites

Welcome Eileen,

Yes you are lucky you are eligible for surgery and yes the surgery is doable. Just before surgery, they may offer you an epidural, the answer is yes. If they don’t offer it, ask about it. I think mine stayed in for about 36 hours after the surgery and it made it a lot less painful to cough. Don’t be afraid to ask for the pain meds when you need them. Within 2 weeks I was down to the occasional Tylenol.

I don’t know how big your tumor is, but if it is larger than 3CM, your Oncologist will likely recommend adjuvant chemo therapy. My Oncologist recommended it for me and my PCP discouraged it. I didn't know what to do, so I asked this group and everybody that responded encouraged me to do it. Long story short, it probably saved my life because after I agreed to do it the Onc ordered another PET that showed I still had 2 lymph nodes that were cancerous.

Share this post


Link to post
Share on other sites

Hi and welcome; You've found the right place for support and info, as u already see. Like you, I was in a panic and it sure was good to hear that cancer is not necessarily a death sentence...many survive long or are even cured now, depending on the circumstances.

Good tips above...cough pillow, epidural for pain, ask for more pain meds if needed,...also, I found it more comfortable to sit up, even slept in my recliner for 9 mos. Jus had an aversion to lying down, risking rolling over on tender incision, etc. Everyone's different, so select the ones that help you. Dont hesitate to call Doc. for any issues you have problems with.

Good luck and keep us posted...Rich B.

Share this post


Link to post
Share on other sites

Eileen,welcome to our support family.There are many knowing and caring people here that can answer questions and support you during this rollar coaster ride.

They are not always able to do a biopsy due to location or other reasons.The surgery is the best way to get rid of the cancer.It is painful afterward and takes a while to recoup but it is doable and there are many of us here beating the odds due to surgery and treatments.

Share this post


Link to post
Share on other sites

Welcome Eileen,

You've gotten some great advice so far from folks who have been there. I just wanted to extend a welcome and wish you a complete successful surgery and speedy recovery.

Keep us posted as you can,

Share this post


Link to post
Share on other sites

I'm sorry you had to come here, too. Definitely a cough pillow. If you forget it, though, ask the nurses for one. They often give the heart patients a heart shaped pillow after heart surgery, and that's what they gave my dad. I've still got it as a matter of fact. It worked wonders for him. I hope the surgery and recovery goes well for you.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Sign in to follow this  

×
×
  • Create New...