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ct results...Ppl with lung experience, pls help

Posted: Wed Sep 04, 2013 4:27 pm
by Cb75
I got some bad news. I have five spots in my lungs. They are the same that we had been watching since diagnosis. They hadn't changed for a year, so I had hoped they were nothing. Well, they're not. They are all small. The largest is 5mm. My oncologist recommends me going back in chemo, folfiri and avastin. I have asked or a surgical opinion. He thinks they are too small for surgery or srbt. I want an opinion anyways. I'm beside myself. I was hoping to go back to work and get my life back...guess not....

Carm

Re: Finally got my ct results...

Posted: Wed Sep 04, 2013 4:35 pm
by KWT
seems like a vats procedure may be in order

Re: Finally got my ct results...

Posted: Wed Sep 04, 2013 4:50 pm
by Hall0731
Carm,

I am soooo sorry you got bad news. Hopefully maybe VATS will be an option or there is other options besides chemo. Did they just begin to grow now after a year? Are they going to biopsy them?

Teresa

Re: Finally got my ct results...

Posted: Wed Sep 04, 2013 5:03 pm
by skypup
Ah, Carm, this sucks. I hate cancer!!! So hope surgery of some sort is an option for you.

Re: Finally got my ct results...

Posted: Wed Sep 04, 2013 6:22 pm
by LKGower
Carmen, I am so sorry to hear of the news :( it would have been devastating to hear that after a whole year of no growth, by then you would have probably just started to stress a little less about it all. I don't have much experience with lung mets so hopefully heaps of info and advice from other members. But if it were me, I would be seeking as many opinions and finding out what would be the best option. Obviously resecting would be the way to go! I am relieved for you that at least they are only tiny, I just don't understand (if I heard right from earlier post ^) why they can't resect mets that are tiny?! :/ all the best in your search of seeking opinions, I pray that someone can help you and give you the best outcome. You are still young, so there is no reason why they can't break protocol or act aggressively, they do it all the time. Please keep us updated. Lisa x

Re: Finally got my ct results...

Posted: Wed Sep 04, 2013 8:18 pm
by Cb75
Does anyone know how many can be taken out by vats? Or treated by radiation? Or is it more about location. My oncologist seemed to be very pro chemo and seemed to indicate that surgical intervention was likely not an option because they are small. He didn't say where they were. Just in both lungs.

Re: Finally got my ct results...

Posted: Wed Sep 04, 2013 8:47 pm
by Guinevere
Major sucknitude! Especially after ha ing to wait so long. I hope they can come up with something beside Folfiri and Avastin. Please let us know what you find out.
God bless ~
Guinevere

Re: Finally got my ct results...

Posted: Wed Sep 04, 2013 9:20 pm
by very worried husband
I am so Sorry to hear Cb75. i hope your onco comes up with the plan. we also had a mixed news about my wife's scan. if you remember, she had a 6mm nodule discovered in Aug and her onco recommended Thorax CT. well, we got the results today, and still they are not 100 % sure what it is. unfortunately there is another 7mm nodule also in the lower left lobe. they will repeat scan in 2 months and see.... we are devastated......
p.s: by the way how are your tumor markers? any change in that?

Re: Finally got my ct results...

Posted: Wed Sep 04, 2013 9:34 pm
by Maia
Sorry to hear this, Carm.
Maybe you want to check this out. A SBRT trial at the PMH. One of the inclusion criterion is "Metastatic disease to lungs: ≤5 parenchymal lung lesions"

http://www.clinicaltrials.gov/ct2/show/NCT01803542
Main researcher profile: doc profile: http://www.radonc.utoronto.ca/our-commu ... s/cho-john
John Cho, MD 416 946 2124 John.Cho@rmp.uhn.on.ca

Or you can ask for a referral to the Lungs Mets clinic (just get your onc or maybe your GP, if your own onc at the PMH is not cooperative) to this fax number: 416-340-3353

The Lung Mets Clinic Group:
http://www.theprincessmargaret.ca/en/He ... metastases
http://www.theprincessmargaret.ca/en/He ... grams.aspx
http://www.uhnresearch.ca/researchers/p ... lookup=473

Even if you don't qualify for the trial (now), an evaluation from the Lung Mets Clinic could give you valuable input.
Hope the information helps. Virtual hugs to you!

Re: Finally got my ct results...

Posted: Wed Sep 04, 2013 9:51 pm
by chemo sabe
You have gone way past me so now I am going to speak just my opinion and not at all related to personal experience. I believe the Onc is correct. Obviously, the mets in your lungs are a result of cancer cells running loose in your system. In my opinion, surgery will not kill off the loose cells and they are going to show up again unless they can be eliminated now. You want opinions, mine is to listen to your onc. Perhaps a multi-pronged approach is best where a surgeon removes the mets and chemo finds and destroys the little bastards that caused them.

Re: ct results...Ppl with lung experience, pls help

Posted: Wed Sep 04, 2013 11:07 pm
by tdsamal
Well I have had both VATS and SBRT and as I understand it, it all depends on the location of the tumors. During VATS I had 2 mets removed in one lung and 1 in the other lung. It was a very hard surgery for me, but many people had a very easy time of it. Then the second time around the surgeon said he couldn't get to the tumor so we did SBRT and hit 2 mets at the same time. This last time I had SBRT and the Dr. said this would probably be the last time for it. Didn't really give me a reason why. Now I'm doing chemo FOLFOX +Avastin and it is darn near killing me. I don't think there is any good answers when it comes to lung mets. Each met is different. I would get a consult from both a surgeon and rad onc to see what there take is on it.
Tammy

Re: ct results...Ppl with lung experience, pls help

Posted: Wed Sep 04, 2013 11:29 pm
by NWgirl
I feel like the queen of lung mets. I had VATS a couple of years ago, not so much to "cure" my lung problem, but to diagnose that it was in fact a recurrence of my rectal cancer - and yeah, it was. Several spots were removed. As surgery goes, I found VATS pretty easy to deal with. Earlier this year the remaining spots grew and a couple of spots of lymph nodes between my lungs lit up. My oncologist wanted me to continue chemo (which I'd been on for 2 years already) but I really pushed for surgery and/or radiation. Well, sometimes you can push as much as you want and it doesn't do much good - which was my situation. I got a total of 3 opinions - one from the radiation doctor in my current practice and two opinions from major cancer centers - before a tumor board; both came back and said no to both radiation and surgery due to the location of the lymph nodes.

Bottom line - if I had to do it all again, I would still opt for the 2nd and 3rd opinion. I'm not happy that I'm not a candidate for surgery/radiation - but at least I KNOW I'm not a candidate. If your only option is chemo - it is what it is. But if you can possibly swing it, push for a 2nd or even a 3rd opinion from both a surgeon and a radiation doc. You need to know for your own peace of mind what you're dealing with and all of your options. And my oncologist admitted that if he were in my shoes he would have done the exact same thing.

Re: ct results...Ppl with lung experience, pls help

Posted: Wed Sep 04, 2013 11:40 pm
by kiwiinoz
Hi Carm
Definitely a bugger to be in the situation you are but you are taking the best action in trying to get info, and then determine what to do. No use crying over split milk etc, and lets just concentrate on the cleaning up.
Having lesions in both lungs makes it a bit tougher for VATS and it entirely depends on the location of the mets. If they are too deep, or dispersed in different lobes it will still be possible but will take a mightly amount of your lung capacity out. Plus you'd then have to have a number of different operations, and anything under 1 cm is very hard for surgeons to find and operate on.
It could be a wait and see game, but in your situation you don't want to wait and see I'd suggest.
SBRT or RFA mixed with chemo would be a good option at this stage, and I have been thinking about what I'd do if I had a recurrence (fairly likely) and I'd be trying to look at SBRT or RFA.
Kiwi

Re: ct results...Ppl with lung experience, pls help

Posted: Thu Sep 05, 2013 12:54 am
by michelle c
This plain sucks! Sorry you received this news. Hoping you get a plan in place soon to knock these buggers into kingdom come! Another bump in the road. Wish I had some good advice for you, just wishing you the best.

Love and hugs,

Michelle xox

Re: ct results...Ppl with lung experience, pls help

Posted: Thu Sep 05, 2013 6:48 am
by Cb75
Thanks for everyone's responses. I did some research yesterday. Ive also searched the old posts here. I've requested a surgical and radiation consult before going back to chemo. I've also requested availability of any clinical trials. I'm off to see my Natriopathic oncologist bout any other suggestions she may have. Someone on another site mentioned something called oncothermia, which I will also look into. I'm trying to get back some hope....