At the beginning

[Irka]

Hello,

I'm happy to find this forum, but sad I have to join it.  Yes, I just got word that my chest CT of Feb 19, 2019, indicated lung cancer.  After having annual & semi-annual chest CTs for several years, my pulmonologist decided two years ago that we should stop getting them.  The "small" spot on right lung was unchanged & probably some scarring, radiologist & he thought. But because my husband & I are moving out of state the beginning of April, he ordered this current CT "to wrap things up," so to speak, not expecting any changes.

Changes there were, however:  the small nodule had enlarged & a NEW one appeared.  Now, I'm waiting to hear from the oncologist reviewing my paperwork, so I do not know what kind of cancer (small-cell or large, etc.).

FYI, my husband has prostate cancer since Dec 2013 & had robotic-assisted radical prostatectomy in Apr 2014, followed by recurrence Dec 2015, followed by anti-androgen deprivation therapy (ADT) & impulse modulated radiation therapy (IMRT) Jan-Mar 2016.  He's considered in remission as of Nov 2018 & will be tested in next couple of weeks, hopefully shows still in remission.]

Given that we're moving, it seems logical to get a complete diagnosis as soon as possible, with recommendations for treatment plan(s).  Could then locate oncologist(s) in Lancaster, PA area to where we're moving, and begin treatment there.  We're moving in to our new "quarters" April 9.

Would be interested in any remarks, recommendations, thoughts.

With gratitude,

Irka

 

[LexieCat]

Hi, Irka, and welcome.

Even though your scan shows enlargement and an additional nodule, I don't think that it's a foregone conclusion that you have cancer.  I had surgery based on growth plus a spiculated appearance because my nodule was too small to biopsy, but my surgeon stressed that they could not be sure it was cancer until they removed it and examined it.  Mine was, in fact, cancer.

Were you getting the scans as part of a screening protocol?  Or was the nodule originally found accidentally and they were just following it?  Or do you have some other lung condition?  If the nodule has grown only slightly in the two years since your last scan (how large is it now?), chances are it is not aggressive even if it is cancer.  Usually there will be a PET-CT before treatment to try to determine whether there has been any spread outside the lung, since that is one of the factors that determines treatment.  

Glad you found us.

 

[LexieCat]

I just read your post on Josie's thread.  Depending on test results, you might not need any chemo or radiation at all--just surgery.  That was all I needed, and I was going out with friends to concerts just a couple of weeks later.  My recovery (I had VATS surgery, which is laparoscopic) was VERY fast and a year and a half later I feel the same as I did before surgery.  I just go for twice a year scans to make sure all stays good (and come July it will drop back to annual).

So don't assume you won't be able to start enjoying your new lifestyle soon.  You might very well be able to.  Even Ruth Bader Ginsburg, in her 80s, was off the bench for only a couple of months.  I was back at work three weeks after surgery (I was 60 when diagnosed).

[Irka]

Dear LexieCat,

Well, I just saw your follow up & greatly appreciate your encouraging words.  The scans were part of treatment for COPD (again, from my heavy previous smoking) & several years ago a "spot" showed up.

It's wonderful that surgery was so successful for you.  And perhaps that's what they'll decide in my case.  I'm concerned because of my age, even though I know Justice Ginzburg has recovered from hers.  (I think in her case it was metastasis from her earlier bowel cancer but not sure.)

I am dreadfully afraid of any kind of surgery, to tell the truth.  So many folks, especially around my age (& even younger) get surgery or procedure in hospital & wind up worse off with terrible & ultimately deadly bacterial  infections.

But with my husband's consensus I'll remain open to whatever the "experts" think is the best treatment path.

I've been on a prostate cancer forum (two actually) & some of the guys there have very negative opinions of their docs, particularly the urologists whom they think are just money hungry in recommending prostatectomy as the best treatment!

I am not suspicious of medical experts, though.  And we will take time to consider all options after the necessary tests for definite diagnosis are finished.

Again, you are very kind to reply to me so swiftly.  I know we'll be staying in touch!

Irka 

[LexieCat]

Justice Ginsburg's cancer was NOT a metastasis--it was pretty much identical to the kind of cancer I had.  Granted, not everyone is a candidate for surgery--with your COPD, they will do lung function tests to be sure you could tolerate surgery--but if you can get it, surgery offers the BEST chance for a complete cure.  And really, the surgery I had was a virtual piece of cake.  My c-section hurt worse, and longer, than this surgery did.  And I actually had a minor complication that required me to go back in for a couple more days with a chest tube, and it was STILL easy to take.  We have another member here, Bridget, who will be along shortly, and she was in her 70s when she had the same kind of surgery--she, too, had a very fast and complete recovery.

If you aren't a candidate for surgery, but it's still early stage, precision radiation (e.g., CyberKnife) offers a good alternative.  

So all of this is by way of saying, it may not be as bad as you think.  Nobody WANTS to deal with any of this, but it sounds as if yours is an early "catch," so there's a lot of reason to be hopeful.

[Irka]

Thanks for clearing up my mis-reading of J. Ginzburg's lung cancer.  She's such an exemplar of strength & commitment & I sure hope she makes a complete recovery.

I am grateful for your comments about surgery for lung cancer, and I will not rule it or any other treatment out.  Yes, I do want to live a few more years at least to enjoy our new retirement independent style living with family and friends.

Your comments lift my spirits tremendously.  At this point, I'm really nervous because I still don't have the definite diagnosis.  If the oncologist's office doesn't call me first thing tomorrow, I'll call them as well as my pulmonologist & primary care doctor!  Thing is, I don't know what's on the scan and/or what it means. . . .

I do know, again from being on PCa groups, that the cancer treatments are increasing & getting better & more precise with fewer side-effects.  That is encouraging too.

 

[BridgetO]

Hi Irka and welcome,

You've been getting some great information from LexieCat! She's noted for that!. It doesn't look from your posts that you've had a biopsy yet. Doctors can tell a lot from how nodules look on  scans, but a definitivie diagnosis generally depends on a biopsy.

I had a lobectomy 2 years ago when I was 71. My recovery was at least as fast as LexieCat's. I also had a lobectomyy by VATS and I was discharged from the hospital the day after surgery, with a chest tube in place. I was glad to be out so quickly because I also am concerned about hospital-acquired infections. The chest tube was in place for 10 days at home because I had an air leak. It was a nuisance, for sure, but I was able to be up and about with the tube and drain bag in place.

Keep in touch here and let us know what questions you may have and how we can support you.

Bridget O

[Irka]

Dear Bridget,

You're right, I haven't yet had a biopsy & haven't even talked to the oncologist who is reviewing scans & paperwork.  I expect to hear from his office tomorrow & biopsy & any other scans should be scheduled soon.

Your experience with lobectomy was clearly a success & I'm buoyed to hear how well you weathered it.  I must focus on input such as yours & LexieCat's rather than what I find just searching on the internet sites about Lung Ca.  So far what I've seen is more scary than not & gives low percentages of positive outcomes, especially when it comes to 5-year survival rates -- they seem quite low.

So, until I get more facts from docs, all the encouragement I get from you & folks here will help me work through my anxieties & low spirits at this point.

Thanks so very much!

Irka

[LexieCat]

One more thing--regarding survival statistics.  First, they represent AVERAGES.  Which means there are plenty of people who survived MUCH longer (as well as those who survived for a shorter times--sometimes people with other complicated health problems).

Second, because the stats represent average five-year survival, they are taking into account only those diagnosed five years previously.  There are so many new and improved treatments now that the current outlook is much better than the stats would suggest.

When I was first told I probably had lung cancer, I too did all that research stuff.  What I found is that I had to read just enough to know what questions to ask and how to advocate for myself, without freaking myself out reading about scenarios that might have zero applicability to my situation.  It's tough at first to find that sweet spot, but if you can do it you will spare yourself a lot of worry.

[Irka]

Excellent points, excellent advice.  That's why I'm so happy to be on this group site.  You all will help me focus on what's essential to determine now, rather than spread out into areas that are not only pertinent but actually outdated.  Yes, the advances have been tremendous & continue to be developed.

Thank you, Lexie Cat!

 

[Rower Michelle]

Hi Irka, 

I wanted to say hello- I'm just returning from a short trip to FLA.  I'm sorry you're having to go through this.  I can very much relate to your situation.  My hubby has prostate issues too.  For now, it's "just" BPH.  He had one reduction surgery in 2014 and another one in December.  Having hubby hospitalized unexpectedly was scary for me.  We have a giant prayer posse and everything is fine now.  We made it through.  I've seen some of the prostate forums and think a lot of the men are generally suspicious of the medical community.  My hubby is too and it took three urologists until we found one that he actually liked.   There's all kinds of experience  around here.  Let us know how we can support you!   

Michelle 

[Irka]

Hello, again, Michelle!

Thank you for this post & your support.  It's so great your hubby's prostate problem is BPH, that's not cancer & you both must be greatly relieved.  It doesn't mean the procedures to reduce the size aren't painful with other nasty side-effects, but thank the good Lord it's benign.

Did I understand correctly that you have/had lung cancer?  I think I may have answered a post you put up to someone else (Irma?) by mistake.  I'm in a rather confused state of mine now waiting for phone call from oncologist!

Yes, I welcome all the support & encouragement I can get here!

Best to you & your hubby,

Irka