CSN Login
Members Online: 12

You are here

Probable lung mets- scared

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I saw the thoracic surgeon this morning regarding the spots on my lung that had shown up in my last CT scan in August. I thought he was going to be setting me up for a biopsy but he's not. If the spots are cancer and not scar tissue like we hoped then they're inoperable because of where they're placed. Also because of my blood clot issue. So I get another CT scan in November and they'll take another look. If they've grown and they think they're cancerous they'll try to come up with another option, probably radiation. He said they spots arw round and is leaning towards that they're mets.

I am devastated and terrified. Can anyone please help me with some information please?

Thank you,

Jan

Trubrit's picture
Trubrit
Posts: 4907
Joined: Jan 2013

I am sorry to read this, Jan. You have been through so much already. 

I cannot help with information, but I can send good vibes and prayers and lots of cyber love and hugs. 

I know there are many here on the forum who are dealing and have delt (as in PAST TENSE) with lung mets, and I know, if these turn out to be so, you will deal with them as well. 

Sue - Trubrit

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks Sue. When I'm told things like 'inoperable' and radiation 'might be able to help' it's scary. I'm feeling like I was hit by a car this afternoon. I'm thinking all kinds of crazy things.

vtspa6
Posts: 172
Joined: Aug 2015

So sorry to hear this.  My husband was dx's with lung mets also.  Oncologist said he has too many spots in each lobe to operate now, maybe if they shrink??  He just had his first chemo treatment with FOLFOX 6 with Avastin. After chemo treatment he brings home a chemo pump that he is hooked to for 48 hrs afterward.  Must say this is some wicked stuff but am thankful that there is options to help fight this terrible decease!

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I don't think I can have chemo now because of the blood clots.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I know how horrible it is to get news of a recurrence.  Could you get a second opinion on the surgery issue?  I know someone who had mets that two or three surgeons said were inoperable, but she finally found a guy who was willing to try just about anything.  That was several years ago and she's still around so the surgery really added to her longevity.

And what about RFA?  I believe several of our members here have had that used successfully with lung mets.  You would probably need to meet with a specialist to find out about that one...not sure a thoracic surgeon would have all the details.

Hang in there and let us know how it goes.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

RFA? I'll have to check into that. Thanks for the suggestion. Do you have a link by any chance?

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

http://www.bmc.org/thoraciconcology/treatments/radiofrequency-ablation.htm

 

It def looks like it's a promising treatment for any cancer in the lungs.   I believe PhillieG, who no longer posts here too much but whom you could PM, has done it multiple times over the years.  He's been dealing with stage 4 for a decade and is still going strong.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Wow, that sounds positive. I'm going to check into it. I wonder if they do it here in Canada.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

see if they have more info about what is on offer in Canada.  And of course ask your doc!  :)

 

http://www.cancer.ca/en/region-selector-page/?url=%2fen%2f

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

Sorry to hear this news Jan. Sending you Light and Love. and a big cyber hug.

 

Phil

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you. I've been trying to be positive through all of this but this time I'm finding that I'm having a very hard time not just curling up in th corner and crying. 

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

i completely understand. in the end all we can control is our reaction to what we face. I try to remind myself of this from time to time. We don't choose the cards we are dealt but we can choose how we play them. I always seem to be amazed by how some of the people on this forum, how they play a bad hand. They are amazing. Never giving up The fight. Keeping a positive attitude. Adding humor to lighten the situation. They are courageous and amazing people. I hope to be like them but I'd be lying if I didnt admit to feeling beaten and sad and angry some of the times...  And other times feeling like curling up under the covers in my bed and crying. Hugs to you today Jan. 

i  remember someone saying "we fight because that is what we do!"

janderson1964
Posts: 2215
Joined: Oct 2011

I think you have 2 other options to look into. They mentioned radiation which is probably SBRT or SBRT is a good option. So is Ablation whether it be radio frequency Ablation or cryogenic ablation. I would get a couple of copies of your scan on disc and set up consultations with a radiation oncologist and intervention AL radiologist to see if they can help you. That way you are being proactive and hopefully setting up options in case the spots are cancer instead of waiting around and doing nothing until your scan in November.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you, good advice. There's got to be something they can do. He didn't sound hopeful about the radiation but I've never smoked and I'm healthy otherwise so maybe there are soe other options.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

and he's right...being proactive is key.  And finding and consulting with the people who specialize in each procedure rather than trusting what the doc who isn't a specialist has to say about it.

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

Hi I haven't posted in a long time but I saw you post and had to reply because I was in a similar situation 3 years ago minus the blood clots. I had three lung nodules in the left and right lungs. Dr said no surgery because I had both lungs with disease. I set out for a second opinion and was advised to try radiation. So I pushed for Cyber knife and it worked for 2 on my right lobe. The one on the left kept coming back so I was devestated and my option was chemo, so I tried it. I know chemo is not an option for you but maybe down the road it might be an option? I completed chemo but once again  it grew back, so I tried standard radiation and again it grew back. With no other lung involvement I again got a second opinion and 2 years had past by this time and surgery was suggested so this May I had an upper left lobectomey. I did do chemo 3 months before surgery and 3 months after. Again, I know you are not capable a doing chemo right now but I can suggest cyber knife as its less damaging as standard radiation and since it's so targeted it can reach hard to reach spots. Hope this is helpful:)

NEDbound
Posts: 54
Joined: Sep 2015

so impressed with your treatments

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you! I'm doing up a list of what to ask when I go back. Information is power.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you! I'm writing all this stuff down. I won't go into this uninformed. I feel great right now. And my CEA is 1.0. I'm hopeful that it's not cancer or will just disappear as a few people have told me happened to them. I even heard about a guy who has always been a heavy smoker who had spots on his lungs and had them removed because his doctor figured they had to be cancer and didn't bother doing a bipsy and it turend out they weren't.

I had a couple of bad days emotionally but now I'm ready to come out fighting. My next CT is Nov 16. Hopefully I'll get good news. If not I think I'll push for a PET scan next as well as a biopsy. They want to see if they've grown. I scar badly, they might groew and still be scars. Him saying they're round and that usually means cancer is concerning me but I'm still hopeful at this point. I don't want another Christmas ruined. The last one I was barely out of the coma and was still so sick.

jen2012
Posts: 1607
Joined: Aug 2012

No better advice than has been given, but sorry to hear and hoping you are able to get the right treatment.

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

So sorry   to hear about the lung mets.  Looks like you've gotten some good advice about being proactive.  I think just knowing that you're  actively seeking alternatives rather than just accepting without question whatever the doctors tell you goes a long way in helping to keep the negative fears and feelings at bay.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I totally agree. Thank you!

DaveHereInFlorida
Posts: 48
Joined: Jun 2015

Even if it is,  getting on FolFox 5 chemo regimen will attach those spots on your lungs just like it did mine.  There have disappeared.   I  hope yours will too.   This is a time of uncertainty for you and i remember the anxiety it brings ;  ive learned to throw myself into Gods capable hands and trust him for a good outcome .   Drawing close to him will give you some peace, hope,  and patience.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I've even heard of them disappearing on their own. My fingers are crossed. And congratulations!

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks Dave, I agree. I pray every night and thank God for what I have and don't ask for anything more. I know there are people in this world a lot worse off than me. But now I've started asking for help and a good outcome. Unfortunately, I was raised Baptist so I tend to think I've done something to deserve this. Not a good feeling.

PhillieG's picture
PhillieG
Posts: 4891
Joined: May 2005

Sorry to hear about your recurrence. The whole journey is nerve wracking to say the least. I've had several RFA (Radio Frequency Ablations) done over the past 7-8 years. I usually average 1 per year so I've had about 7-8 of them done. Prior to that I had wedge resections but after 2 of those I had too much scar tissue so we went the RFA route. 

My understanding if that depending on where the spots are located has a lot to do with whether or not they can do the procedure. I'm not 100% sure but I'm pretty sure that the further they are away from the center of your lung the better. It kind of makes sense (to me at least).

For roughly 6 out of the past 9 years I've been on Erbitux and Irinotecan which did a good job of slowing the growth of the spots. Of course, the rash and all of that wasn't a load of fun but over time it lessened quite a bit and personally, it wasn't a big deal. It was what I needed to do so I did it. For the past 2 years I've been on Xeloda and Avastin. Still doing 1 week on, 1 week off. I'm also on Xarelto, a blood thinner, because of a PE (Pulmonary Embolism) I developed maybe 3 years ago(?) so I'm not sure if that's important but I saw you mentioned blood clots so I'm guessing you've been on a blood thinner.

I can't say this enough but everyone reacts differently to treatments. That's not saying RFA's will not help you but it's no guarantee that they will either. It's certainly something to investigate for sure! As far as the procedure goes, it was a cakewalk for me. I went home the same day for every ablation except my first one. They wanted to keep me overnight to see how I did.
That's it in a nutshell.
Best of luck Jan
PM me if you want and I'll answer whatever questions I can answer.
-p

 Just a footnote here, on Sept 20th 2004 I did my first of about 5 surgeries. I had done 6 months of chemo prior to the surgery. Like many others I got the "6-9 months" speech. Here I am 11 years and 7 months later...Why so many "doctors" do that is beyond me. I really haven't done anything special except I was fortunate to find a great oncologist, I seem to have made good decisions when I needed to, drugs became available at the right time, I keep a (mostly) positive attitude, and have had a heII of a lot of good luck...

I know that many of us have been to hell and back, I've been no exception. While my health is far from being perfect I kayak at least once a week, usually more, I'm doing part-time work, I'm very politically active on a local level, and I enjoy naps! I have little doubt that one day the party will be over and I'll get hit hard - maybe by cancer or maybe by a truck. No one knows and I really try not to dwell on the "what if's" in life.

Bashakill Nature Preserve. NYBashakill Nature Preserve. NY

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you! I'm also on Xarelto for a pulmonary embolism and will be for the rest of my life. I'm concerned that the spots are not in an area they can do the ablation in. He said that if he were able to remove them he'd be taking most of my lung out. I've been going on the internet about this- I know, bad idea- but it sounds like often the spots aren't anything to worry about and can be kept at bay. I'm 52. I'm okay with not livng to be really old but I'd like to see at least 60. I have a daughter who is 26 and I'd like to see her married off to someone great so I dont have to die worrying about her. I'd like the dogs we have to die before me so I don't have to worry about them. And my horse has about fifteen years left in his life barring anything unforeseen and I don't want to worry about him, either. He's been with us since he was very young and he's my baby. He even visited me in the hospital when I had the blood clot and almost died.

Anyway, almost twelve years is fantastic! Thanks for the encouragement. If it means a lesser quality of life I'm okay with that. I can't emember what it's like to feel normal anymore, anyway.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I have a question Phil. Actually, a couple. Are you able to go on a plane with your blood clot history? And how bad was the pulmonary thrombosis? Mine almost killed me and I'm scared of flying. A friend wants me to go somewhere before or in case I get really sick again.

PhillieG's picture
PhillieG
Posts: 4891
Joined: May 2005

Hi Jan,
The PE was caught during my regular CT scan about 2 years ago. At my last scan I was told that things were looking better as far as the PE goes. I'm not exactly sure what that means. Those who have Dr. Kemeny as their Oncologist know that she doesn't hang around and chit-chat very often. When I see her in a few weeks I will ask her specifically how I'm doing as far as the PE goes. She is very responsive when I ask her questions. When it was first discovered I was put on medication that day (Lovenox(sp?)) and was told it was serious. That was enough info for me. I'm at the point in my journey where I don't need to know every detail. It's kind of how I've always been. When I was first DX'd I Googled Stage IV CC and wasn't thrilled with what I saw not to mention that the data was outdated. I put an awful lot of trust in my Oncologist and her team and that has worked for me.

I haven't flown in about 4 years so I can't answer that. I would ask your doctor for sure and not give in to peer pressure (or cabin pressure!) If you can fly then go for it!
-p

DaveHereInFlorida
Posts: 48
Joined: Jun 2015

I had 4 small spots on my lungs....1 on the top and 1 on the bottom of each lung.  By the 3rd chemo treatment, they were gone .  Im on Folfox 5  treatment and it is doing remarkable good things on me ;    colon mass has shrunk to nearly nothing now and the liver mets  has been knocked hard  too.   No other spreading as of now.  Just had my 7 th  out of 12  treatments scheduled.    The side effects are getting worse  but i can put up with that .  Ill pray for your situation, but i wouldnt fall apart on whats been discovered so far with you.   Dave.    Stay close to God is my personal prescription ! 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks Dave! I'm not sure if I;m still a candidate for chemo because the chemo is probably what caused the blood clot. I guess if it comes to that they'll tell me. I dont have the port anymore, though. And, yes, God is my strength. He got me through the blood clot when I had very little chance of surviving and the doctors told me I'd received a miracle. I have to count on that I'm still here for a reason.

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

about the lung spots. There is a clinic in Germany that takes difficult cases. Unfortunately you have to pay privately and I know it's not inexpensive. They also use some sort of radiation. If you're interested I can find the link And get it to you. Good luck!

Easyflip/Richard

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks Richard! I'd love to see the link but I know we couldn't afford anything costly. 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I saw my surgeon this morning, the one that took out my tumour. He said that only about 10% of people who have lung mets have them without having liver mets as well. He said it's more common for it to go to the liver and to have just the lung without the liver also inolved is uncommon. He said my liver is fine and the lung spots are small and he doubts they're cancerous. Have any of you been told this? It's a ray of hope for me but I'm scared to be optimistic and then be more let down if I get bad news in November.

Trubrit's picture
Trubrit
Posts: 4907
Joined: Jan 2013

I have also heard that is goes to the Liver first. 

I think it is always good to try and prepare yourself for bad news, and then when the results come back clean, the releif will be all the more memorable. But, that doesn't mean you worry yourself sick for a whole month. Just think 'it may be bad' and then try your very best to get on with life. 

I decided, when my Cancer spread, that I would live every moment of my life as though I were going to die and that means doing what makes me happy; makimg memories for my family; being happy every moment; and then when the results are all good, well, I'm even more elated. 

Here's hoping that your Surgeon is right. 

Sue - Trubrit

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

http://www.fachkrankenhaus-coswig.de/fkc.html

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

let's hope those spots are benign. My friend that went to Germany saw Dr. Rolle. It was not covered by insurance and cost 12,000 euro per lung. She had a total of 16 spots. It seemed to work but unfortunately it has spread elsewhere, she's recovering from surgery now and is doing fine. Fingers crossed for you, it is odd to skip the liver and go straight to the lungs, let's hope it's nothing.

Easyflip/Richard

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks so much Richard!

vtspa6
Posts: 172
Joined: Aug 2015

Mets hit husband's lungs only.  His liver was clear.  However, he has at least 30 spots thru all lobes of lungs.  Hope this folfox6 gets rid of them, because he always gets so sick during and right after chemo, want to make all this pain worthwhile!

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I pray that your husband will get rid of the little buggers. I wish I was a cancer technologist and could feel like I'm doing something to help people. My heart breaks for everyone going through this.

vtspa6
Posts: 172
Joined: Aug 2015

Thanks Jan, I will pray for you also.  From responses on your earlier post I have learned some new things.  This special radiation that you can receive sounds very promising.  This site is very good for information with just folks 'talking to each other'.  I try to put all this information in the back of my brain because you never know when it can come in handy.

NewHere's picture
NewHere
Posts: 1117
Joined: Feb 2015

I wish I knew more information to help, but it looks like many have you covered.  All my thoughts and best wishes are with you and hoping to see some good news for you shortly.

sasykymy73
Posts: 1
Joined: Aug 2015

Hi Im 42years old, my mom was diagnosed with colon cancer on July 15, 2015. She has a tumor in her colon cancer spread to her liver and spot on her lung and stomach. She seems to be responding to the chemo well, my question is how do I deal with my  desire of not getting on the roller coaster of highs and lows. Even though the cancer is responding to the chemo I dont get excited I always say we still have so far to go. I feel like negative Nellie. When people ask how she is I always say she is ok, never do I say oh her tumor marker is down. I dont want to say that I dont want to get excited about that, I know it wont always be great news. Am I normal?  My uncle (my moms brother) died in 1992 of bone cancer I remember all the good news and bad news and maybe thats why Im this way. Im just plain SCARED!

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

It's totally normal. We all want to be excited for any good news but it's scary to get complacent. This will be an issue for us the rest of our lives, even if we live long lives. Cancer can always rear it's ugly head suddenly and without reason. It's not like any other disease where it goes away and then it's gone, it's more of a chronic condition. And we need to feel positive but we don't want more of a blow if something goes south.

It will be a roller coaster no matter what you do. The issue with cancer is the fact that the same cancer responds differently for every individual. What works for one will not necessarily work for another and the journey takes different courses for everyone. I have noticed that it gets easier to hear news, even bad stuff. The worst is the initial diagnosis.

I'd suggest that you start your own thread so that more people will respond. You'll get a lot of support here.

Jan

Trubrit's picture
Trubrit
Posts: 4907
Joined: Jan 2013

Please start your own thread, as people here would love to welcome you to the forum, and give you all the support, advice and comfort that you need. 

Sue - Trubrit

Subscribe to Comments for "Probable lung mets- scared"