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2" met tumor in lungs...... need suggestions

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

I cannot find a doctor who will administer any type of radiation to the spot in my lung. I have several tumors spread across both lungs but I HAVE to get this one taken care of. I have the 4 in my liver too and the biggest one is right on a vessel. I did just start chemo for the 1st time ever on wednesday so maybe that will help with some shrinkage??? i get very short of breath and cough. I just don't get it... why won't these doctors hit me with the ray? They all have said since I have systemic cancer that it would only come back and they would have to do it again.... uhhh so????? Bull! I gotta do what I gotta do to survive. I know surgery is not an option at this point.... my gosh they all have said don't even think about it. I'm not..... I am looking for a survival plan and they are only offering chemo. What if my lung collapses before I finish my 2 month stint and they do a CT scan to check progress? With all the different radiation treatments they have out there surely 1 would work on a 2" tumor.... does anyone know of any place that would work with someone in my condition? Please read my profile and let me know. With dual mets.... and quite a few spread across the lungs... I just wonder if that is a problem.... I sure as hell know it is for me!!!

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I was treated at st.josephs hospital in denver,colo.and I was given chemo,and radiation at the same time,and my tumor shrank from a stage 3 to a stage 1,after 6 weeks of both.The chemo will help,but I don't understand why they won't do radiation on you,if there is a reason,then they should tell you why.If they have to treat you again,so what,thats why they are there.best wishes ,and good luck.I'll pray for you. p.s.my tumor was big enough that it was almost blocking the entire intestine

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

Go see an interventional radiologist, ask about RFA, microwave ablation, and chemoembolization. Go see on of those cyberknife specialist. Also, let the chemo work. Folks don't realize that chemo works not only by shrinking the tumor size but also by making it less dense. I learned this when I had a complete blockage in my colon. The chemo never shrank the physical size of my colon tumor but I was able to go easily after my 3rd treatment and freely after my 6th. So those tumors my be pressing on vessels and arteries but the pressure will become less as the chemo works.

PhillieG's picture
PhillieG
Posts: 4906
Joined: May 2005

I sounds like Cary Grant with the Judy, Judy, Judy...
RELAX Girl. You are playing the "what if" game way too much I think. You kind of know my story. Stage IV CC. I have many liver mets and lung mets. I don't know why but radiation was never even brought up for me. My oncologist at Sloan Kettering decided that chemo was best to do first to shrink the tumors so I would become operable. I had a big tumor on my hepatic artery (the main blood supply to the liver) That prevented any surgery until it could be shrunken. I went on FOLFOX with Avastin and that shrunk it enough so they could get in there and cut it out. I have 60-70 % of it removed. No big deal, it regenerates to 100% capacity or damn close to it. It's size may not be equal but who cares, it's the functionality that matters (size DOESN'T matter???) So we have that in common, a tumor on the hepatic artery it seems. It's treatable. I'm here as proof. I'm not sure why you want "the ray" so badly. I personally didn't and I felt I had a great team so I let them call the shots. I had the final say of course but what they told me made sense. Shrink the liver tumors first, then operate. My colon wasn't affected too much so that was put on hold until the important part (my liver) was dealt with.

After the 6 months of chemo, the Avastin with the FOLFOX was able to make me operable. I have/had cancer in my colon and liver and now in my lungs. The colon and liver have been clear ever since chemo/surgery/mop up chemo. For the past 3 years we have been focusing on the lung mets. I am on Erbitux and it is working well. Radiation had NOT been brought up at all again but on one tumor I had a RFA (Radio Frequency Ablation) where they basically stick a needle in your tumor while you are getting a CT scan (so they know where to stick you) then the needle heats up and fries the tumor. That can not be done on all tumors but it can be used on some.

I go to Sloan Kettering and they have saved my life. I'm sure there are other places but that's my story.
-phil

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

Hi, Phil

Our stories are similar, except we just found 2 spots on the pleura of my lung. I was not getting good direction anymore from my first onc, just I switched over last week in fact to have a new onc review my case file and put together a game plan.

My colon and liver are clear now too it appears, but the spots in the lung are the new thing now. I'm an RFA survivor too, so I believe in that too.

Watching your story and hoping things go well for you. Nice advice on your posts spoken from a guy who has been there. I'm right in behind you.

Take care
-Craig

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

Hi, Idle

That's a heavy burden to carry for you. I'm not too sure why your onc has elected not to radiate the area. You might want to seek a 2nd opinion, just to see if they both agree on the protocol, or have differing opionions.

I have 2 spots on the pleura of my lung right now and my onc wanted to radiate the area, but we got a 2nd opinion and the new onc said No to radiation and that they could be cut out via a thoractomy (chest surgery).

I've done radiation on the lower half of my body, and so I know the collateral damage that it causes. I've been reading about radiating in the lung and I guess it just depends on the position, but my concern is having the radiation touch the heart. I've ready about people having trouble from radiation and their heart valves begin to leak and so I sought a 2nd opinion on that and I said above the new onc does not want to radiate.

I know this, once an area is radiated, you are not supposed to be able to go back to that area and radiate it again. Perhaps, he wants to do the chemo to shrink the tumors, so you that might could have a surgery?

On another note, my uncle had lung surgery and radiation to that area, and it fried the arteries near his heart and had to have one lung entirely removed and then open heart surgery.

As far as the liver goes, I'm sure he is using the same methodology, he's thinking the chemo would shrink the tumors in the liver thus possibly giving you another option. The one that is on the blood vessel might be a problem for surgery or an RFA procedure. On the other hand, maybe the other 3 tumors are candidates for a procedure known as RFA - radio frequency ablation. Basically, it's a multi prong that sends alternating current at very extreme temperatures and they place it in the middle of the tumors and literally burn the tumors out of there.

I had RFA done on my liver for one very big tumor. We had to follow it up with CyberKnife, which is a laser guided, highly intense, precision type of radiation that "surgically" removed the remants of the tumor that was left. Mine was near a blood vessel so they could only go so far, but CyberKnife knocked it out. They place radioacive seed markers into you rliver and the CyberKnife "sees those" and the beam is like a surgical instrument and it can go in any direction and they put a vest onto you so that when you breath in and out, the laser adjusts for that and stays on track.

I'm not sure where you are living, but I'll give you the name of the hospital that I went to along with their phone number and the URL address to their website.

The doctor to see there would be Dr. Goldstein, a pioneer in RFA procedures. RFA has equal to or better survival rates than the traditional liver resection, so this is worth considering.

His nurse's name is Jane Dempsey @ 214-820-1756. You could talk to her and set up an appointment if you would like to see him.

Not too sure if travel is an option for you, but if you decide that's what you would want to do, Baylor Medical is located in Dallas, Texas at 3500 Gaston Ave. Additional phone numbers and URL link below.

Find a Physician Baylor Medical University
For personal assistance, call the Baylor physician referral line at 1-800-4BAYLOR (1-800-422-9567). A Baylor Advisor will help you find a physician to best suit your needs.

http://www.baylorhealth.com/Pages/default-bhcs.aspx

Take care and keep me posted - maybe this post will be of some info to you.
-Craig

eric38's picture
eric38
Posts: 588
Joined: May 2009

Craig - Do you live in Dallas? I am getting treated at Baylor.

Eric

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

Hi, Eric

Yep, I'm in the Big D. Actually, I'm in Arlington.

Baylor is a good place to be, highly rated. Glad you are getting your treatment there. I got my RFA there from the doctor I mentioned and it has gotten me down the road a little bit further.

What's the saying? "It's a small world after all."

Do you live in the area too, or just in town getting treatment?

-Craig

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

Phil.... LOL ... you are getting to know me too well. You always hit it on the nose. Let me say again... I have been told now by 2 doctors that surgery is out of the question for me... ever.. because I am stage IV with recurring mets. UNLESS a problem with one of the tumors arises. Don't ya think a 2" tumor could be a problem.... especially when I am short on breath??? Then again... this is where Phil comes in... I did just start chemo so I know I need to see what response it is going to have on me.

Craig..... so good to welcome you to the room. I am from a small southern illinois town where we do nothing but grow corn and fish for blue gill. However, I am in Houston right now getting my second opinion and started my chemo at M.D.Anderson. I am leaving Sunday but will be returning every 2 weeks for 2 months so I just may head to Dallas (go Cowboys) I am anxious to see what effect the chemo will have on me. My main concern is having to sit up to sleep cause if I lay down I can't breath. It gets frustrating. I will be talking to my onc. at home about this condition and perhaps he will consider this a "problem" area. The Siteman Cancer Center in St. Louis is close to home so I may go there too.

Anyway..... thank you all for the input

Jennie

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

You live in Arlington???? As in where the new Cowboy stadium is???? You are sooooooooooo lucky!

Jen

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

Yep, that's the place!

Never would have dreamed the Cowboys would be playing right up the street from me. When you see it on TV - think of me. Hey, that rhymes.

-Craig

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Jennie, I told you when I e-mailed you that you would find lots of people that know a bunch on this stuff.
I actually started a folder and copied and pasted some of the stuff so that when John is done with the treatments he is on now I will be loaded with questions and I will want answers.

I hope you folks don't mind me making a folder of things you say!!! There is so much to learn about this stuff and at first you feel like there is so little time. All of you have given JR and I much more hope than we had at first. Jennie keep the hope up and read what people say. You then will feel more in control.Paula G.

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