stupid question, maybe and update

Portal Forums Lung/Thoracic Cancer Screening / Prevention stupid question, maybe and update

This topic contains 14 replies, has 4 voices, and was last updated by Dr West Dr West 4 years, 4 months ago.

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January 20, 2014 at 11:17 pm  #1261655    

catnapt

at what size, roughly, does a lung mass ordinarily cause symptoms? I hear that lung cancer doesn’t usually cause symptoms til it’s fairly advanced- about how big would that be?
that’s my potentially stupid question.

the rest of this is an update that is likely of no importance to anyone but me, but I feel the need to write it anyway. no need to read further unless you’re bored or something…

after losing my mom, dad and step dad to cancer (they all had lung cancer PLUS one other cancer each- my mom’s second cancer was lung cancer of a different type)
now my 61yr old brother is in ICU on a ventilator- he has COPD with possible dlbe pneumonia. (he was first diagnosed w/ COPD in his late 30s & he immediately quit smoking) He’s been “critical but stable” for a week now.

I’m beyond heartbroken, praying for the best, hoping for the best, and knowing there’s no real way to prepare for the worst.
He’s the most kindhearted guy I’ve ever known.

I haven’t *yet* gone for my follow up CT for that teeny tiny nodule they found incidentally last year. Planning to do that in May.
While I know intellectually that all the lung cancers and COPD in my family were a consequence of smoking, it crosses my mind that maybe we have weak lungs or something.
(of course I’m not including my step father, not blood related)

January 21, 2014 at 9:21 am  #1261659    
JimC Forum Moderator
JimC Forum Moderator

Hi catnapt,

I have to gently disagree with you on two points:

First, there aren’t any stupid questions here. It’s possible to ask an inappropriate question (one beyond the scope of what the GRACE faculty can answer), but you haven’t done that.

On the other hand, it’s a question without a definite answer, because it’s not just a question of the size of a lung mass, but also its location. A relatively small mass in a sensitive location can cause symptoms that the same size mass wouldn’t in another spot.

Second, updates are always welcome in this forum. GRACE is not only a place where you can get definitive answers to cancer questions from oncologists and other cancer experts, but it’s also a community of people – patients, caregivers, loved ones – who are on the same journey. Many of us have followed each other’s journey for quite a while, so you should never feel that no one is interested.

I’m sorry to hear of the devastation lung cancer and other cancers have visited upon your family. It has hurt me personally in several instances in the “real” world, and many times among my friends here on GRACE, so I understand how heartbroken you must feel.

As you say it is most likely that smoking is the primary cause of your family members’ lung cancer, but it’s also possible there is a genetic predisposition to cancer in your family. You might find Dr. West’s post (and the quoted links) on this subject helpful: http://cancergrace.org/forums/index.php?topic=6158.msg42160#msg42160

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

January 21, 2014 at 2:23 pm  #1261667    

catnapt

thank you so very much Jim
just heard they think he has ARDS
I know my mom survived this after her first lung cancer surgery but she was only on a ventilator for one day
and was in overall good health other than the lung cancer (sounds strange to say but she was strong, did all her own yard work, even shoveled snow)
My brother is and has nearly always been, physically weak.

my brain is having trouble grasping what is happening, I’m exhausted but will try to respond more fully later

again thank you so very much for your kind reply
and for that informative link

January 21, 2014 at 5:13 pm  #1261673    
Dr West
Dr West

Jim provided a wonderful summary of a complex situation. There really is no threshold size of a nodule or mass to cause symptoms, because location is enormously important. Most small cancers (say, under 2-3 cm) are detected either because they happened to be found in someone who underwent imaging for a separate reason (such as belly films in the ER for abdominal pain that happened to pick up a spot in the bottom of the lung) or because the cancer was next to a blood vessel and bronchial branch that led to coughing up blood. While coughing up blood isn’t a good thing, it tends to bring people right to the doctor, sometimes leading to an early diagnosis of a small but particularly located tumor. Others can grow to baseball sized or larger before causing clear symptoms if they happen to be in the wrong location — and since many people in whom lung cancer develops also have pre-existing shortness of breath and/or cough from COPD, etc., they may take a long time to clearly sense that something is worse.

It’s always possible that you have a familial predisposition to cancer, that’s not remotely common, and there’s really no plausible basis to the “weak lungs in the family” general idea. I don’t mean to minimize that as a crazy idea, but mostly to reassure you that I can’t envision that being true.

-Dr. West

January 21, 2014 at 9:36 pm  #1261676    

catnapt

Thank you Dr West for the additional information.
I’ve had a couple of friends talk about some supposed “inherited weak organ system theory” which sounds silly when you write it out,
but when you’re coping with a lot of emotional stuff, your mind can wander into dark and strange places.

I worry my brother may be too depressed to fight the COPD and ARDS and pneumonia and whatever else may be going on.
He lost one of his sons a few years ago. This son was developmentally disabled with other birth defects, he lived at home and was found dead in his bed from heart failure.
My brother himself has cerebral palsy, depression, PTSD and a difficult life situation as well.

on the issue of CT scans, though, I was reading thru some articles here last night and saw one that mentioned a cap on the number of CT/PET scans that Medicare will cover, it was a life time cap, I believe.
I am not on Medicare yet but I am concerned now about getting any more scans on the very tiny single lung nodule they found totally incidentally.

Realistically, the chances that it’s anything to be concerned about are very very small.
I am actually more concerned about not having the option for a CT scan in the future if needed.

This was my reason for asking about symptoms of lung cancer and the size of the mass or growth- I was thinking, why not just wait and see if it ever bothers me?
I don’t relish the thought of going in to find that it looks like maybe its’ a teeny weeny bit bigger and then having to wait for yet another scan…….
It’s clear the scans are not 100% accurate since they initially “saw” a slightly larger nodule on the OTHER lung.
what if they “see” something else that is tiny and probably nothing to be concerned about-
just how long can you keep going with these scans?
just what degree of certainty do you need to feel confident that there’s nothing to worry about?

I don’t want to live my life in fear. I have bipolar disorder, living with that is hard enough, you know?

January 22, 2014 at 5:21 am  #1261678    
JimC Forum Moderator
JimC Forum Moderator

Most lung cancer is not detected until it causes symptoms. At that point it is usually advanced (stage III or IV) and cure is unlikely or impossible. So it’s not a good idea to wait for symptoms.

I understand the anxiety you feel about scanning; there is even a term for it: “scanxiety”. But a potential lung cancer should not be ignored. Please try not to imagine the scenarios you describe (finding another tiny nodule, etc.) At the very least it would be advisable to get one more scan to see what shows up and whether the existing nodule has grown. You don’t want to get scans needlessly, but in this case the scan is necessary.

Good luck.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

January 22, 2014 at 8:44 pm  #1261683    
Dr West
Dr West

There’s no limit to the amount of CT scans that would be appropriate and should be covered if there is a clear need for it. We do want to be judicious about not doing too many, especially over a long time, but we also don’t want to do too few. And we should expect that the scans will only involve less radiation over time.

-Dr. West

January 23, 2014 at 1:59 am  #1261688    

snagglepusslynn

Hi, I’m new here and have been browsing around this site for hours, came across this forum and seemed liked a good place for my first post. 2 yrs ago I had a chest scan, I thought just routine and paid no attention to it. The doctor was trying to show me something on the scan, but I could not see it, emphezema runs in my family, sadly to say my sister, mother and grandfather Al dies of it and on my fathers side lung cancer and other cancers ran rapid. Only 1 out of 1 children are alive today ok back to me. My doc wanted me to have another chest scan so I had one 3 weeks ago and have an apt. With her tomorrow. She called me this past Monday and told me the scan showed another nodule, so now I have 2, don’t know sizes yet but wild Friday. I was also looking thru some reports of tests I had and came across a scan from 2008 when I was in the hosp for another ailment and it said lung bases demonstrates mild dependent bibasilar atelectasis. No one ever mentioned this to me and the other day was the first time I was seeing it. Needless to say I have been researching lung nodules and this condition of my lung bases.
If I understand what it says about my lung bases is that the lower part of both lungs are collapsed? Do that correct itself. And the lung nodules (now) having a new one) my doc said on the phone she would like to do another scan in 6 mos; and see what it shows. She thinks it is emphezema. Personally I would like to have a pet scan. I wild be a nervous wreck waiting 6 months to see if I have Lung cancer or not.I smoke, and that is crazy with what I saw my family go thru. My doc mentioned to me she ends to make me stop smoking. We have talked about it but I have not stopped. Del not emotionally ready for it, but can be scared into it. Can anyone suggest questions I should ask my doc tomorrow, and what tests I need and should ask for so I can know what is going on with me? Any input would be greatly appreciated.
Lynn

January 23, 2014 at 6:26 pm  #1261707    
Dr West
Dr West

Atalectasis is a limited area of collapse within the lung, but it’s very common, and typically not a big deal. It’s kind of like the end of a long, thin balloon not blowing up, because there’s not quite enough air getting in to inflate the furthest reaches of the airways. So “collapse” sounds worse than it’s likely to be if it’s more likely just a small, limited area that isn’t well inflated. It’s also possible for that to look like a nodule.

As for a PET scan, that can sometimes be appropriate, but it really depends on the size and appearance of the nodules. PET scans aren’t likely to light up nodules below about 8-10 mm, even if they’re cancer, because they’re just too small, so there’s little point in doing a PET scan to better characterize nodules that small.

And because benign nodules are just very common, it’s very appropriate to follow them over time to see if they remain stable or go away before launching into a bigger workup. Yes, it’s understandable that this produces anxiety, but it’s also just an unfortunate part of CT scans that needs to be factored into the risks and benefits, because we can’t do potentially more dangerous invasive procedures just to reduce anxiety.

If it helps, please remember that small lung nodules are very common and most commonly benign.

Good luck.

-Dr. West

April 6, 2014 at 1:03 am  #1263120    

catnapt

Hi again, I didn’t realize that I hadn’t updated you all about my brother. He died. He had ARDS, not congestive heart failure. They tried everything, just everything they could think of, but nothing worked. As a last resort they were going to try to transport him to a Boston hospital, I’m not really sure why they even agreed to this, as he de saturated from something as simple as them moving his head. Of course it wasn’t possible to move him, and his organs were shutting down. So, on Feb 1st, my 58th birthday, his wife let him go.
I’ve mostly been angry- angry at the circumstances that led up to his death, angry at myself that I hadn’t kept in touch more, angry that I never got to say goodbye, or tell him how much I love him, and incredibly sad for his wife, children and grandchildren. Feel a bit ashamed that I am so angry, since he was so forgiving himself. He never ceased to find happiness in all the “little things” in spite of a very difficult life. My younger brother said at his funeral that in spite of his/our parent’s attempts to beat him til they “wiped that grin off his face”, he was always smiling.

I am coming up to one years since that SPN was found during a CT scan for an abdominal problem. I’ve lost 15lbs, gotten on a whole food, vegan diet, try to exercise (but the weather hasn’t cooperated much) Got some relaxation tapes to listen to, and they seem to help- my family comments that I seem a lot calmer.

I guess I should schedule that follow CT scan. With the odds overwhelmingly in favor of it being benign, I am thinking of waiting another 6 mos. Give it time to declare itself one way or the other, I guess!

April 6, 2014 at 4:34 pm  #1263122    
Dr West
Dr West

I hope you can find some peace about your brother’s passing. Please accept my condolences.

At least your own lung nodule sounds like it’s very likely to be benign. I hope your scans continue to be favorable.

-Dr. West

April 6, 2014 at 8:33 pm  #1263124    

catnapt

Thank you Dr West.

April 7, 2014 at 5:59 am  #1263127    
JimC Forum Moderator
JimC Forum Moderator

catnapt,

I too am very sorry to hear of your brother’s passing, and I hope that time will help bring peace and comfort to you and your family.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

April 7, 2014 at 6:17 am  #1263128    

catnapt

Thanks Jim.
His passing has made me more determined to focus on living each day to the fullest and to try not to “borrow trouble”, esp since the things we worry about the most rarely happen.
(which makes you feel like worrying “works” somehow to keep trouble away LOL)

we never saw this coming, for sure. They had been talking about a lung transplant for my brother, although I suspect that they were trying to urge him to take better care of himself so that he’d qualify for it.
His grandchildren live with him and his wife and they are heartbroken without their “Poppa” (grandfather) as well as having lost their dad, my brother’s son, who died about 3yrs ago.
it’s so sad.

I want to be sure that I”m here as long as possible for my own daughter. Not that she needs me for anything, she’s very independent. But you know, just in case she ever does.

so I’ve got to come to terms with the anger, find a way to forgive myself and adjust to the lack of control we have over life and death (that really does make me angry LOL I don’t know why! I guess it beats feeling depressed and hopeless about it, I don’t know)
and work on staying as healthy as I can.
not much else we can do, eh?

oh and of course, never miss the chance to say I love you to the people you care about!

April 7, 2014 at 5:36 pm  #1263136    
Dr West
Dr West

That’s a very wise philosophy. Always good to share/vent.

-Dr. West

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