Introduction - Isabelle49

[Isabelle49]

I’m Isabelle 49. New here. Had a screening CT a week ago and found large mass in right middle lobe and one nodule in left lower lobe. Been a smoker for over 50 years. Traveling overseas at the end of the week and will wait to have biopsies done until we return. 

[BridgetO]

Hi Isabelle 49 and welcome. Keep us posted and let us know how we can support you.

BridgetO

[LouT]

Hi Isabelle. Welcome to the group. Like you, I I'm just beginning my journey with LC and I can tell you that you'll find super support, knowledge and experience here from a great group of folks.

I'll keep an eye out for your results and my prayers are with you. 

Lou

[Isabelle49]

Thanks all, Lou T prayers most welcome. Wondering if anyone here chose to keep this information very private, not shared with children. One of my daughters has been through so much in her life, Katrina took her home, multiple near death accidents. This has been a time of joy, as her daughter is getting married in November. I don’t want this health information out there, because I know she will be devastated. I know my older daughter will be hurt by this also. This is the hard part, not having anyone to talk to, except God. Thanks

[LouT]

I have two daughters as well and I wondered about telling them about my situation, but my wife told me that they'd be pretty angry to have to hear about it later so I did share with them. In my case, while it was a shock to them, they're very supportive and I find that very comforting. Each family is different, so you need to decide for yours, but their strength may surprised you. 

Lou

[Rower Michelle]

Hi Isabelle-

When I was diagnosed, a  nurse strongly recommended sharing my diagnosis with people as soon as possible as there will never be a “good time”to share this news.  

Yes my friends and family were totally devastated by the surprise diagnosis however we’re adapting to the new normal.  We received support from the least expected places.    

This is a marathon you will need a strong support system in place to carry you through the rough patches, uncertainty, & celebrations.  

Keep us posted,

Michelle

 

[LexieCat]

Hi, Isabelle,

I've got a slightly different take on it.  At this point, you haven't been officially diagnosed.  Maybe, rather than getting everyone alarmed, you could wait until you've been diagnosed and know for sure what you are dealing with.  When you say, "large mass," how large is it?  The one nodule in the left lobe might be nothing.  The majority of nodules are not cancer.    A PET scan should be able to indicate the likelihood of any metastasis.  

What I'm trying to say is that assuming the "large mass" is cancerous, it might be possible to have a surgical removal that will have little impact on your life--that was the case for me and several others here.  Granted, my tumor was not very large, but if yours is confined to the one lobe, surgical removal is not very complicated.  I had my upper left lobe removed almost two years ago and I'm fine--I do go for regular scans to be sure it stays that way, but right now it's looking good.  

When I was told that I had probable lung cancer, I shared the information on sort of a "need-to-know" basis.  My close family knew but I didn't tell my elderly dad because he would have worried literally for the rest of his life.  He wasn't nearby and I didn't see any point in upsetting him.  My kids and a few other close family knew, as well as the people I worked with and a few other colleagues/friends.  If I'd had a more serious diagnosis and would be undergoing chemo or radiation treatments, then probably a few other people would have to be told.  I think it's a very individual thing.

My point is that if you wait till your diagnosis is more certain, you might be able to give your family the news within the context of having some idea about what the game plan will be. If there's no metastasis and you're a candidate for surgery, that is very reassuring news.  Even if it has spread, though, or surgery is not an option, there are a lot of people here with positive treatment results, so you can present the news in the context of, "Yes, I have cancer and it's not great news, but there are effective treatments, so there's hope."

Bottom line, do whatever feels right to you.  Every person, family, and cancer is different.  

Glad you found us--hope you are able to enjoy your trip!

[Curt]

I can speak from both sides of the equation.  My father was diagnosed with a soft tissue sarcoma when I was around 12.  He didn’t tell me until after he had his leg amputated, he knew for about a year.  I was pretty upset he didn’t.  I told him never to do that again. Fast forward 30 years and he was diagnosed with a stage IV LC. He called me on the way home from the doctor to let me know.  He said he remembered how upset I was when he didn’t tell me when I was 12.  I was glad he did tell me.  It was important to me to be able to help him in any way I could.  

Now I was just diagnosed with Stage 1 LC 8 weeks ago.  I have a 10, 8 and 6 year old.  We chose to tell them that I had something in my lung that needed to be removed but not use the word cancer.  They haven’t asked for specifics.   I struggled a lot with telling friends, extended family, employees, customers and people I interact with through work.  I’ve found that it does help to share what you are going through in the appropriate moment.  If you choose to share it I’d practice the first few times on close family or friends.  I had to get through a few before I was able to do it without getting upset.  There is definitely  something therapeutic with saying it out loud for me. 

[LexieCat]

Oh, and one other thing--you do have US to talk to.  No matter what comes your way, chances are that one or more of us have Been There, Done That.  We know how anxious it can feel waiting for tests, results, treatment.  Family is great, but it's also great to be able to share with people who (a) get it and (b) you don't have to worry about upsetting.

[Tom Galli]

Isabelle,

I'm not sure I have anything to share on telling family and friends about your diagnosis. Lexie makes a good point: you don't have one yet! I'd at least wait till you did because so many other questions become answerable once a diagnosis is determined.  A reveal now might needlessly heighten uncertainty and lung cancer is already uncertain enough.

I do like your priorities: travel first then complete diagnosis.  I wish I held that attitude when I was in the diagnosis and treatment zones.  I put my life on hold and ended up wasting 3 years fretting about lung cancer.  I'd forgotten the purpose for treatment is extended life and I was wasting my extension! You are not and I say well done!

Stay the course.

Tom

[Isabelle49]

Update, back from our trip x 1 week. Still waiting to be referred to another pulmonologist. I have still not told any relatives or friends about  this and still not sure when and if I will. Hang in there.

[Rower Michelle]

Welcome Back!

I hope you had a great trip. I suppose at this time there’s not anything to share with your friends and family. 

Generally the “wait” is not part of my vocabulary.  Is there anything you can do to expedite the appointment?  Squeaky wheels get the grease....

[Susanrae]

Hope you had a great trip.  Keep us posted on the referral.  Good luck to you!

[Isabelle49]

Update. Still have not been scheduled with another pulmo doc and found out today the reason is there aren’t really any others at this huge facility. Most are fellows and some are part time only. Sounds like they might have only one full time pulmo on staff!!! The facility is Ochsner in New Orleans. Considering how wide spread they are its pretty hard to believe they are strapped for pulmo docs. So still waiting for a call tho see who they might be able to set me up with. That’s a far cry from the first pulmo who was in such a rush to biopsy that she scheduled without seeing or talking to me. Of course that had to be delayed for travel to Europe. So we just wait. The alternative will be to get set up with one of the pulmo docs connected to a teaching institution such as Tulane or LSU Medical center.

[Rower Michelle]

Hi Isabelle-

It sounds reasonable to me to explore an evaluation at a major academic center. I believe they would have more experience in initial diagnostics that could provide clarity for the proposed treatment plan. 

I was diagnosed by a wonderful pulmonologist at a top local hospital (not a teaching facility).  I almost stayed there however once I learned about the importance of a  NCI, I was transferred.  I’m so grateful we did as my onc got my diagnosis right from day one.  

Keep advocating for yourself....

Michelle

 

[Curt]

Isabelle your pulmonologist does not have to be in the same network.  It does make transferring reports a bit easier, but if you don’t have or like the options it’s perfectly reasonable to find a pulmonologist outside of their hospital network.  I was originally diagnosed at a teaching hospital and found them good.  The pulmonologist in my primary care physicians network wanted me to wait six weeks for an appointment.  I went to a cancer screening center at a teaching hospital instead.  I’d find another option to have in your pocket if you need it. Now that your done with vacation the sooner you can get to this the better the outcomes can be.  Don’t let the inherent inefficiencies in the medical field slow you down.  

[Isabelle49]

Update: have an appointment with a new Pulmonologist on the 29th, so will go from there.

[LouT]

Isabelle,

I've been following this thread and am glad to hear that you have the appointment setup.  KatieB is absolutely correct that you never want the system to control your care or treatment.  I hope this Pulmonologist will be the right one for you.  For my part it was a pulmonologist that noticed my nodule on a CT Scan taken months before I saw him for something unrelated to cancer.  He was sharp and pushed everyone else in the "system" to get me treated and I'm so glad that I came across him.  I wish the same for you.

Please keep us updated.  You'll be in our thoughts.

Lou

[Rower Michelle]

Good, let’s get the ball rolling...  prayers for you!

[Isabelle49]

Looking forward to meeting with the new doc and get everything straightened out. Thanks.

[Isabelle49]

Met the new pulmonary doc. Like him. Genuine, great chairside manner. Plan for EBUS this Monday 6/3, they 7 - 10 day wait for results. EEK!!!

[Curt]

I’m glad it’s moving along for you.  EBUS is an affective diagnostic tool.  Be sure to ask them about genetic testing just in case it is something.  Let’s hope it’s not. They’ll want to remove enough of a sample for various tests.

The waiting is rough.  Try to fill those days with fun distractions and things to look forward to each day.  @Rower Michelle is a master at that.

  

[Rower Michelle]

Hi Guys-

Rocky Mountain greetings.... Yeah the waiting to the worst part of this.  Tom Petty knew what he was talking about.  

To date I’ve had multiple scans and MRIs to wait through.  The first time I listened to my favorite music for at least an hour every day- the second scan, I booked a weekend trip.  

After I had a few of these under my belt, I started scheduling at least one fun, self care activity a day. Pedicures, massage, trike rides, my favorite movies, cooking new recipes ( a few disasters along the way-poor hubby).  The new recipes are a good way to kill time between trips to the market and prep time.  

I have a 48 hour theory, if no one calls with their hair on fire, then I assume it’s status quo.  

Keep living life.. 

Michelle

 

 

[LouT]

Isabelle,

Glad to hear that you like the new pulmonologist.  I can't tell you how good it is to have a solid doctor and especially one you like to get through this with.  I never knew what EBUS was until I looked it up and now I remember that since my nodule was lower lobe that it wasn't a potential test for me.  But, I agree with Curt, it is a great diagnostic tool, so good luck with the test on Monday, I'll keep you in my thoughts.  Waiting is always the tough part of what we go through here, but I just kept as busy as I could while waiting for test results and (for the most part) it works for me.  Plan a few nice things during the week long wait...Michelle had some good ideas.  Essentially, whatever makes you happy and distracted is a good start.  Please let us know how the test goes and results when you can share.

Lou

[Isabelle49]

EBUS is a done deal. All went well. Slight sore throat, coughing that is minimizing a few hours after procedure. Pulmo doc patho present for ROSE of nodes sampled . 4 sampled. One located at 7R tentatively + for NSCLC. So will see when final comes in. Staff at hospital was beyond outstanding and I am an RN of 33 years and not to generous with my praise, i.e., staff needs to meet what I consider Gold Standard  before meriting praise. Will keep you posted.