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WTF?

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Hello everybody, I went to see my Onc yesterday for a “routine visit” only to get a big shock from what she told me. As many of you know I had my last CT scan last May 17th and a few days later I got a call from my doctor telling me that everything is fine and she’ll see me on my next visit. Well, I don’t know if she bumped her head or what but she sat me down and told me that my last scan wasn’t so good. She said that I have two small spots on my lungs (about 3mm) and one on my liver (about 5mm) but said the Radiologist said that they look to be benign but her concern is that benign or not just being there is not a good thing. I didn’t know what to say. I was shocked and upset as she stated that she wants to do another CT scan in Sept and that right now they are too small to biopsy. As I slowly walked to my truck I couldn’t help but get mad. Why didn’t she tell me back in May and knowing my history letting these “Spots” grow? I couldn’t help getting angry driving home. So I woke up this morning from being up almost all night worrying made some phone calls. 1st call was to her office DEMANDING another CT scan ASAP. 2nd call was to her boss DEMANDING to be seen by another doctor for a second opinion and succeeded in both. Next CT scan is Friday at 9:45am and I see a new onc on the 4th. The CT scan also showed something going on with my back and I see my GP tomorrow so I’ll ask him about that. So it looks like my cancer fight isn’t over and that it’s time to get my cancer sword out and polish it up for another fight.

Brooks

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I've still got blood stains on it from this past year's battle, but it still cuts real clean.

We haven't kept up much, Brooks, so in case you did not know.....I'm back on watch and wait status on my 3rd recurrence in the past 7 years.

You can borrow my sword and if you need a shield, body armor or artillery for your big guns, I'm only a PM away:)

Spots on your lung are tiny - mine was 6cm (size of tangerine). And why they may need to come out, it might not have to be this very second. You can watch them another scan cycle to see if they grow or how significant the growth is. If they continue to grow, then benign or malignant, they will have to come out.

I had benign lung tumors the first time with da Vinci and the next lung tumors were cancerous, so it's always hard to say.

As far as biopsies, you might want to save yourself some time and money. If they don't grow, then you watch them - if they do continue to grow, then there is VATS, da Vinci, or an open thoracotomy.

Biposies are so hit and miss anyway - and how do you believe them? I mean if they say cancer do you believe that? And if they say no cancer, do you believe that?

The only tried and true test comes in the O/R when the fully excise the tumor and biopsy it right there. That takes the guesswork away and in a big way.

And liver? I did RFA and Cyberknife on my tumor (8cm small orange) with good success, so that might be possible. And RFA has an equal to or better survival percentage than a standard liver resection. So, don't be fooled there.

Remember, sometimes waiting a month or two is not a bad thing. We all think we have to jump through hoops the minute anything pops up. but the lungs are delicate and you can only go in there so many times, so you want to wait and make that surgery count and not do it just to do it.

Because there's always recurrence and that's what makes our battle so difficult.

Having said all of that, let's look at your new onc and see what they have to say and take it from there. It might not be as bad as you think and we'll soon see.

Take care my friend.

-Craig

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Hope is just a false alarm!
Hugs and vibes my friend!

daBeachBum's picture
daBeachBum
Posts: 164
Joined: Apr 2011

That's crazy! I hope you have better luck with the new doc. Are they in the same practice? That could muddy things.

Anyway, I wish you all the best and hope this turns out to be nothing to worry about.

Take care,

Ray

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Brooks,

Man- what a lousy deal that your onc told you everything was fine after your last scan. Did you ask her why she didn't tell you before??
I do hope and pray that they are benign, but what stress you're having to go through. I think it's good that you called back and got the CT scheduled sooner since it's already been more than 2 months since the other one.
Keep us informed as to what's going on.

Sorry, Brooks-

Hugs,
Lisa

P.S. Are you still coming down this way in August? I'll be back from my cruise on Aug. 7th pm- back checking the board and FB Aug 8th. Let me know if you end up down this way.

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Well ain't that a bunch of crap!!!!. Sorry to hear this Brooks. Let us know how the scan goes. Take care

Jennie

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

I am glad you called back switched Drs and demanded a new scan. I hope the next scan does show that things are not bad. Good luck.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hey, Brooks.

That just makes me shake my head. Why in the world didn't she tell you the true results in May, so you could make an informed decision for yourself? I'm so glad you called and got fierce with them. This is your LIFE!

Praying for great results!

*hugs*
Gail

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

so sorry for this news.i just had a scare myself with my onc and i really dont feel like talking about it right now but believe me when i say i know how you feel...Godbless...johnnybegood

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

So sorry to hear that. Pisses us all off when s..t like that happens! Johnnybegood, get it off your chest, don't hold it in!

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hey Gal - I'd be glad to talk with you about it anytime that you feel like it:)

-Craig

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

I would be so pissed, there just aren't words. Did she not read the last report? I would demand answers. I'm praying that this scan on Friday is a good one. Love ya bud!!

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Hey Brooks,
Yes, that is crap. You did the right thing withe your two demands. How about a PET scan?

Let us know. We care about you.

Aloha,
Kathleen

Fight for my love
Posts: 1530
Joined: Jun 2009

Hi Brooks,if I were you,I would fire her too.You did the right thing and you did good.Sometimes we are in shock and we don't know what to do right this moment,but after we sink in and think about it,we can take actions.You are in my prayers,and I hope everything will be ok.Best wishes to you.Take care.

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

WTF is right. Talk about kick in the pants. George and I know all too well the way you are feeling about now. As an aside, your doc dropped the ball on this one, but since they are very small there is a good chance at knocking them down. I got no words of wisdom except hang in there and just do what you need to do.

Hugs - Tina

dorookie
Posts: 1736
Joined: Jul 2007

What a load of crap, so glad you called back, you dont need this crap, I pray for good scan results, but so sorry your having to go through this stress...Please keep us posted on your new scan and new ONC....

HUGS
Beth

taraHK
Posts: 1961
Joined: Aug 2003

So sorry to hear this news -- the spots but also the behavior of your Onc. You have done all the right things now. For what it's worth, when I had a very small spot on my lung (similar size to your spots), the decision was "watchful waiting" and I had a repeat scan in 3 mos. I say this in hopes of relieving some anxiety about the time-frame.

Fingers and toes crossed for good results (disappeared, no change, benign....)

All good things,

Tara

coolvdub's picture
coolvdub
Posts: 410
Joined: Aug 2009

Brooks,

I'm sorry you are going through this. I just a couple of weeks ago found out my Onc was not being totally honest with me while I was doing chemo. Turns out he thinks he knows more about me than I do. He stated that he didn't tell me I only had a 50% chance of surviving, because he didn't think I could take the news. How dare he or any Dr. make my choices for me. I would not have liked the news, but not giving us all the information is like sending into a gunfight with an unloaded gun.

I really like my Dr. and will try to work things out, basically he will be told 100% honesty is required or he can't be my Dr. any longer. Also I will tell him point blank, if you ever lie to me again, you are fired and then I will drag you in front of the medical board to get your liscence revoked.

relaxoutdoors08
Posts: 520
Joined: May 2011

What does your Onc.base his 50% prediction on???

NB

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

I'll post my update as soon as I talk to my new onc on the 4th. Good idea for everybody to ask for copies of scans and Dr visits.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

My CT scan showed all clear...My PET scan lite up in the hilum area and also a small dull image on my right liver. So just because a CT shows clear doesn't mean somethings not up....My rise in CEA is what got the attention of my Onc...I will give her credit, so far so good..but we all have to be diligent in knowledge and keeping full speed ahead on keeping it under control....I wish only the best in all of this for ya Brooks..sorry that you or any of us even have to deal with this period.......buzz

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I would have had a few words for the oncologist that can't be written here! I expect honesty! Right now I am pushing to get my FULL results from my PET/CT instead of just the "for example" telling me what is up with two of my retroperitoneal nodes. I didn't get clear answers last scan or this scan, but have my colon cnacer nurse navigator working on it for me. Sometimes they make decisions like "it is too small to know, so we'll just ignore it for now and see what happens" or "it doesn't matter if it is 3 modes or 50, we'll treat it the same way" so we don't get full disclosure. It is our RIGHT to have full disclosure always!

I am sort of wondering why you didn't alternate scans and get a PET/CT this time if the last CT was inconclusive? They could compare what was seen before, and see if there is metabolic activity in those areas or not. I'm hoping your onc is right and these are benign and nothing to be concerned about, but you still have the right to know about them and follow-up to get as much info as you can. I'm glad you are being such a good advocate for yourself!

marqimark's picture
marqimark
Posts: 242
Joined: Jun 2011

I would like to know why my onc would tell me two different CT results, TOO!!!!!!

I would be so scared and angry!

I hope the spots are nothing to worry about, though how you couldn't worry.......

Best of luck.

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