Does it always come back?

[blaze100]

Hi guys, It's late and my husband's fast asleep, but I can't stop thinking about something my cardiologist said to me today. I was having slight pain in my left shoulder, so had the stress test and echocardiogram few weeks ago. Anyway, results were slightly below normal, and slight leak in valve.

My cardiologist starting rambling on about the wisdom of doing more invasive testing...my leaky valve would be Ok until my 70's and then he wondered out loud "has anyone told you how many years until the lc comes back?". I said I'd made it 5 years now with no evidence detected, I hoped I was over it. And he said that he thought that sooner or later all lung cancer comes back. Anyway, my husband just jumped in and said no other doc has ever mentioned how many years to us, and we've never asked.

Needless to say, I self medicated with chocolates and dozen roses on the way home.

So, if anyone out there knows the answer to this question, please reply. Does it always come back sooner or later?

Barb

[ginnyde]

Ok Barb, just one question, when did a cardiologist become a cancer specialist?

I have never heard that before.

[Snowflake]

Barb,

IF it were to "come back" in an early stage case after more than five years, I would guess it was a NEW cancer, not a recurrence of the old one. How many years? According to my oncologist, the longer you make it, the better your odds of beating it entirely.

Not only would I not accept what the cardiologist said, I would probably seek the opinion of another cardiologist on the heart issues since this guy has no knowledge of bedside manner and the harmful effects of what he just "shared" with you from his esteemed high position of medical knowledge. Let him know that you are not impressed with his little snippet of information that truly does not fit in your diagnosis. Girl, you've made it FIVE YEARS! THAT is THE major milestone, from all I've read. Pull your butt out of the tailspin he threw you into, he's NOT a cancer doctor, he's a heart doctor. It's like getting the veterinarian's opinion, too! (Then again, vets do deal with cancers in critters but defer to university vets...)

ANYHOW, enjoy the roses, savor the chocolates and laugh it off. Dust off your fanny from the crash landing and get back on the survivor road. This unwelcome construction detour was just a detour, don't let it ruin the journey.

Take care,

Becky

[bunny]

for what it's worth, and that may not be much, my mother's docs originally told her that her type of cancer "almost always" comes back 8 to 9 years after 'curative' treatment. as it turned out, my mom had a reoccurance after 4 years, although, like Becky said, her docs consider it a new cancer.

to me, that adds up to just about nothing.

xoxo

bunny

[Ry]

I believe your type of cancer(BAC)is one of the less aggressive cancers. I don't believe for a minute his statement is true, what is true is he's an insensitive putz. If I were you I'd switch doctors.

[Geri]

In September I was hospitalised with a percardial effusion, the cardiologist was convinced that the shadow on my heart was a return of the sclc, much to my horror.

When my onc weighed in with considerable force and pointed out it was radiation scarring he also assured me that after 4 years I was not in for a recurrence. Anything found now would be a new primary.

The cardio people didn't seem to be aware of this and my onc was quite scathing about the whole episode - the "what do they know about lung cancer" sort of thing.

Maybe your cardiologist should change his speciality to pathology, he seems to have missed the bedside manner credit!!

I'm seeing my onc today I'll try to remember to ask him about this.

Geri

[chloesmom]

Barb,

I personally know two lung cancer survivors--one for 21 years without a problem, and one for about 13 years without a problem.

The third one I know, but not personally, is the wife of one of my doctors--she had breast cancer, then a new primary lung cancer, and this was all many years ago too.

I think that doc is full of cr**. While it's true that a lot of recurrences happen, and new primaries develop, it's also true, according to my lung surgeon, and I think he'd know, that the most likely time for recurrences is in the first two years. The more days that go by that you don't have a recurrence or a new tumor, the less likely you are to get one again. In his words, "90% of the time, if these are coming back at all, the will in the first two years."

When I'm worrying about a little cough or an ache or pain, I repeat those words in my head like an endless loop. It helps get me through the night a lot of times.

Cindy

[cindi o'h]

I would like to join this chorus...

My onc. said that in the case of me, nsclc, "When" I make it to FIVE years, he will say that I am CURED.

He added, "You may well be cured right now!!!"

That was a year and a half ago that he made that statement.

I am over 3 years out from diagnosis now, so I am getting there....!

I must add that I do like the way you care for yourself when you are feeling low! Good girl!

Cindi o'h

[J.C.]

Barb,

Wonder why the cardiologist did not check

your teeth at the same time,

his way of changing profession or butting

in other specialties is very rude.

Hope the best for you and that you will

forget or change cardiologist along the way.

Hugs

Jackie

[Ann]

This doctor needs to keep his "wondering" mind and his "rambling" mouth both closed...at the same time. If I were you, I would seriously consider finding another cardiologist that is more sensitive to the needs of his patients.

Yummmmmm...chocolate AND roses.....lucky girl!!!!

[Debi]

Barb,

What a jerky thing for your doctor to say! I think it all boils down to the fact that people can be so insensitive, no matter who they are. He's just saying some ignorant statement out loud because he doesn't know- people need not to be so careless- do they not know that those statements stick in our head for eternity? Especially coming from a doctor..

One thing that I have found is that doctors know little outside their specialty- I've had an Orthopedic doctor quiz me about lung cancer, etc. I've asked my regular doctor if I could do certain exercises- he told me he had no clue- I ended up coming here to Ask the Experts. If its not their field- they know less than we do about it. SO just remember compared to your cardiologist, your the expert!!!

Feel better...

[gail]

I know this one!!!!

I was told:

A recurrence would probably be within the first two years. After that, time is on my side.

My surgeon, after 4 years, told me if I got another lung cancer it would probably be a new primary. BAC is "multi-focol" (SP?)so a new tumor COULD appear.

Both he and my oncologist put the bar at 5 years. Nothing new by then and I am probably cured.

Now, that said, this was my THIRD primary cancer, so the word CURED is invalid TO ME. Today I don't have cancer, so TODAY is a great day.

gail

PS I have fired doctors for such insensitivities, including the endocronologist who told me my 2 breast cancer counted as one. Sorry, but that was two surgeries, at 2 different times.

[Fay A.]

Find a new Cardiologist. He is SO wrong about the Lung Cancer that I would be quesioning his advice that a leaky valve causing symptoms would last you until your 70s. But that's just me, and I question everything.

You know...I would also like to point out that even if recurrences or mets appear before the magic 5 year date, and if they are successfully treated with surgery, radiation, or chemo, we Lung Cancer patients can survive beyond the 5 year mark.......

Says the Lady who celebrated her 6th Anniversary as a Lung Cancer Survivor back in June of 2005. Do you know I've lost count of the recurrences and mets? I've lost count of the times the Physician has had to say "The Cancer has returned.", or "It is positive for Malignancy.".

Sometimes there is no cure...and we have to live with it like anyone else with a serious, chronic medical condition.

[Don M]

Barb: I am just going to echo what everyone said. That was a stupid thing for the doc to say. I am sure any oncoloogist would be perfectly happy to pronounce "cured" over you. There was a lady who lived at the little community where I used to work who had lung cancer. She had a lung removed for it and then lived another 20 years and basically died of old age. Of course you could always get a new primary, but after 5 years it is not likely.

Don M

[blaze100]

Thanks to everyone for such encouraging and thoughtful replies.

My husband and I discussed it again tonight now that I've calmed down. Husband thinks the doc didn't mean it exactly the way I heard it, and that doctor said something more like "some lc cancers come back sooner or later"... not all lc. I'll give doc another chance, but if this doc screws up one more time, he's history.

It's good to take husband along to doctor office as he hears the good and bad - I just hear the bad.

I was cheered-on by your replies. I'm over it and it's time to get back on survivor track, thanks to your advice and encouragement.

[Patty]

I am glad you are over it, but does any one else wonder how utterly ingnorant for a non-medical person to say such a thing, let alone a "doctor"? I am kinda dwelling on the part where is asked 'how many years....'? Isn't it pretty much well known that it is quite UNKNOWN with ANY cancer the "ifs" and "how longs" etc????? Or am I way off base to think such a thing? Patty

[Patty]

PS: I was told, in my case, that IF it comes back, it would most likely be in the first 18 months. What they are going to tell me after that, I don't know.

[slinaresholz]

Hello!

My friend has two family members who had lung cancer. Her brother had a lung removed fourteen years ago and is still doing great, the other relative had half a lung removed twelve years ago and is fine. Also my sister told me she knew someone who recovered from lung cancer for seven years, but then she died from something else, so it does not always come back. There is a young man on the site who had a lung removed twenty eight years ago and is a bicyclist. So take heart. There is a nurse on the site who has been doing great for seven or eight years. So don't listen to that doctor!

Sharon

[john]

No I am sure he is completely wrong.

Dave P is a 20+ year survivor and still living and now is competing in world class mountain bike races I believe and there was even a long term SCLC survivor so it doesnt ALWAYS come back

If the cancer is resected then there is a 85% 5 year survival rate and of those 85% a fairly larger percentage will never have a recurrence

[john]

I wasnt quite clear on the last post.

For Stage IA that is complete resected there is around a 80% 5-year survival rate

State IB is less and II is less, etc

http://www.chestjournal.org/cgi/content ... ppl_1/104S

[blaze100]

Thanks John, I just hope it isn't 100% certain or even a 90% probability my LC will eventually comeback after 5 year milestone. I was thinking that risk after 5 years was about the same as the general population risk, but I guess it makes sense that compared to the general population, we will always be at a higher risk.

I have to agree with a previous reply, the question the doc asked about "how many years" I expect before my LC comes back was awkward, and honestly it made me tear up. I can understand that realistically it makes a difference on how aggressive to be with my heart...but it is quite a question to ask point-blank. Thank god my husband was there to help answer or I would have completely broke down.

I asked my onc on my 5 year check-up if I was going to live, and she just laughed, patted me on the back and said "you already have". Not a promise, but a good answer. Barb