Horrible News!!! Ray Doc lied to me.... my cancer has spread.... I am so scared!!

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idlehunters
idlehunters Member Posts: 1,787 Member
edited March 2014 in Colorectal Cancer #1
My ray doc told me (after reading first PET scan since surgery) that all he found was a small spot on mu liver. That freaked me out enough as you all know. HE LIED TO ME. That was NOT all. I had appt. with my surgeon today. HE told me my results of pet. He did mention spot on liver but said they also found NUMEROUS nodules on my lungs....both lungs... I am devastated... I am shoked... I couldn't breath... I couldn't talk. All I could do is sob and say no...no...no.. why is this happening to me???? he said there was no lymph involvement so it had to spread in my bloodstream from original tumor. I don't know what to do. I don't know how to handle this. I still haven't seen an onc. yet cause my is backed up with appts. Won't see him til 6/4. I asked my surgeon if he thought I should go to a cancer treatment center. He said for the type of cancer I have I would get the same type of treatment anywhere I went. Must be like a standard thing???? I don't know. He said the onc. I have is on top of all new procedures and if something isn't working or not available here they will send me to place that will. He said it doesn't matter that I have to wait that long to see onc. cause they won't start chemo for 2 more weeks anyway... then they are gonna hit me hard with chemo and rad. What do you all think? Should I still go to cancer center for second opinion? Doc said surgery not an option with it in both organs. He said basically there is no cure for me at this point.... only treatment to prolong my life... oh my god... i can't hardly type that... i don't wanna die.... please give me your words... i need you

Comments

  • Julie 44
    Julie 44 Member Posts: 476 Member
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    YES YES YES
    Please go and get a second even a third opinion..If for nothing else to ease your mind..If they say the same thing than good you know what they want you to do is right...I am so sorry you are going through this...Just try to stay calm and don't get ahead of yourself..Find out what the others say first...Ok there are alot of people on this site who haved lived with this monster for many many years..Even if they say there is no cure they don't know that for sure...STAY STRONG DON"T GIVE UP!!!!!!! keep thinking positive cause once you start thinking negative everything goes that way and being negative doesn't help it just makes me get headaches and stomach aches. Keep on posting and let us know how you are making out....Good Luck You will be in my prayers.....JULIE
  • Paula G.
    Paula G. Member Posts: 596
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    Same DX
    My husband had the same DX except it is extensive in his liver and in both lungs. He is in treatment Folfox + Avastin every two weeks. He is handling it well. The 4th isn't that far away. It may help you to read some of the people's stories on this site. It is so hard when you hear this news. Hang on because I believe you have to have hope.
    I think it is so important that you like your doctors that are treating you. If you don't feel good about them then I think you should see someone else. My husbands doctor said surgery wasn't an option either at least at this point. He will have twelve treatments and then we will go from there. I am sure other's will answer you with more info. Hang on ...and read what others say. They have been so much help to us. My thoughts are with you Paula G.
  • dmdwins
    dmdwins Member Posts: 454 Member
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    Paula G. said:

    Same DX
    My husband had the same DX except it is extensive in his liver and in both lungs. He is in treatment Folfox + Avastin every two weeks. He is handling it well. The 4th isn't that far away. It may help you to read some of the people's stories on this site. It is so hard when you hear this news. Hang on because I believe you have to have hope.
    I think it is so important that you like your doctors that are treating you. If you don't feel good about them then I think you should see someone else. My husbands doctor said surgery wasn't an option either at least at this point. He will have twelve treatments and then we will go from there. I am sure other's will answer you with more info. Hang on ...and read what others say. They have been so much help to us. My thoughts are with you Paula G.

    So sorry
    Jennie,
    So sorry you heard bad news today.I believe there are a few people on the board that were originally inoperable but with the help of chemo became operable. My mets were not liver or lung so I don't have any experience to offer just lots of caring thoughts and prayers. Please don't give up-go get another opinion even if it is just to instill confidence that the treatment would be the same.I would not feel confident with doctors that lied. My heart goes out to you.
    Dawn
  • kimby
    kimby Member Posts: 797
    Options
    Bad News
    So sorry. You are not alone, but this is a very tough time.

    First, systemic chemo sounds like a reasonable place to start. A medical oncologist will help determine which cocktail. Waiting until June 4th should be fine. I know, though, that my onc would want to start chemo that day so go prepared just in case.

    Secondly, surgery isn't your only option. You need a good radiation oncologist on your team that you TRUST. Probably, that will mean that you need to find a new one given the current situation. You want someone who is honest with you and communicates well with the rest of the team (med onc and surgeon). This person will be instrumental in further treatment or possibly an interventional radiologist. There are many, many treatments besides surgery and chemo: rfa, stereotactic radiation (cyberknife), hph, chemoembolization, vats...the list goes on.

    This is not the time to give up. This is the time to fight. You fight until you’re exhausted and then you negotiate. There are so many here that have been right where you are. We can help you navigate. Come and ask questions as you're up to it. For now, BREATHE. Pray, think good thoughts, meditate, whatever works for you. Go for a walk. Call a friend.

    Hugs,

    Kimby
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Options
    I'm so sorry
    I don't know what to say except that I am thinking of you and I think you should talk more to your original doctor and find out why they didn't tell you everything up front. I would be very hesitant to go back to that doctor if they kept news from me.

    Please don't give up as there are other people on this board that have already posted that show you where they have been and where they are now. You need to ask all the questions you can with your oncologist and make sure you take someone with you so they and you hear the same thing. It is important to write everything down. Make sure you go over all your results and scans with your oncologist to so that you all are on the same page.

    You are in my prayers and thoughts.

    Kim
  • idlehunters
    idlehunters Member Posts: 1,787 Member
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    kimby said:

    Bad News
    So sorry. You are not alone, but this is a very tough time.

    First, systemic chemo sounds like a reasonable place to start. A medical oncologist will help determine which cocktail. Waiting until June 4th should be fine. I know, though, that my onc would want to start chemo that day so go prepared just in case.

    Secondly, surgery isn't your only option. You need a good radiation oncologist on your team that you TRUST. Probably, that will mean that you need to find a new one given the current situation. You want someone who is honest with you and communicates well with the rest of the team (med onc and surgeon). This person will be instrumental in further treatment or possibly an interventional radiologist. There are many, many treatments besides surgery and chemo: rfa, stereotactic radiation (cyberknife), hph, chemoembolization, vats...the list goes on.

    This is not the time to give up. This is the time to fight. You fight until you’re exhausted and then you negotiate. There are so many here that have been right where you are. We can help you navigate. Come and ask questions as you're up to it. For now, BREATHE. Pray, think good thoughts, meditate, whatever works for you. Go for a walk. Call a friend.

    Hugs,

    Kimby

    Brains!!
    Kimby,

    Your intelligence amazes me. How do you know all this stuff? You must do constant research.... and I am so glad you are up on all this. I don't even know what that stuff is but it is nice to know I have other options. When I left doc today he left me with the impression I would never be NED. Just extended..... and for how long... he couldn't say. He couldn't give me an exact count on how many nodules on lungs.... report just said numerous. That sounds like a lot to me. On the day I see onc. for first time you said he may even want to start treatment then.... what about my second opinion???? wouldn't i want to get that before anything started?

    Thanks

    Jennie
  • kimby
    kimby Member Posts: 797
    Options

    Brains!!
    Kimby,

    Your intelligence amazes me. How do you know all this stuff? You must do constant research.... and I am so glad you are up on all this. I don't even know what that stuff is but it is nice to know I have other options. When I left doc today he left me with the impression I would never be NED. Just extended..... and for how long... he couldn't say. He couldn't give me an exact count on how many nodules on lungs.... report just said numerous. That sounds like a lot to me. On the day I see onc. for first time you said he may even want to start treatment then.... what about my second opinion???? wouldn't i want to get that before anything started?

    Thanks

    Jennie

    Jennie
    Call for second opinions tomorrow. I got in to a major comprehensive canzer center in just a few days. I doesn't always take long. Your chemo regimen will probably be pretty standard, I'm guessing folfori with avastin unless you've already had those. Have your original tumor tested for KRAS if that hasn't been done yet. They will want to know if erbitux is an option for you. You can get that started on the 4th if still need it done.

    When you go to a large canzer center you get a specialized team. I go to the gi canzer unit of the canzer center and my team all specialize in liver mets. That is my primary issue. Very highly specialized. It makes a difference in how up to date they truly are with treatment options. Things change quickly. You want a team that specializes in lung mets or dual mets.

    I don't know if you can get to a cure, or even if I can. I have come to terms with living with canzer. We can coexist in this body. I have a chronic illness that needs managed. Yep, we were dealt a $h!t hand. We need to play the hand we were dealt and I can think of worse things. But, getting there takes time. You have time. And hope.

    Hugs to you, friend

    Kimby
  • Nana b
    Nana b Member Posts: 3,030 Member
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    I'm so sorry
    I don't know what to say except that I am thinking of you and I think you should talk more to your original doctor and find out why they didn't tell you everything up front. I would be very hesitant to go back to that doctor if they kept news from me.

    Please don't give up as there are other people on this board that have already posted that show you where they have been and where they are now. You need to ask all the questions you can with your oncologist and make sure you take someone with you so they and you hear the same thing. It is important to write everything down. Make sure you go over all your results and scans with your oncologist to so that you all are on the same page.

    You are in my prayers and thoughts.

    Kim

    hang in there.......sorry you are going through this!
    I would write all my questions down and have them ready for your oncologist and if possbile take someone with you. I was amazed just last week that I missed something important that the ocologist said that my sister picked up on. I was like, did the oncoloigist say that!
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    Options

    Brains!!
    Kimby,

    Your intelligence amazes me. How do you know all this stuff? You must do constant research.... and I am so glad you are up on all this. I don't even know what that stuff is but it is nice to know I have other options. When I left doc today he left me with the impression I would never be NED. Just extended..... and for how long... he couldn't say. He couldn't give me an exact count on how many nodules on lungs.... report just said numerous. That sounds like a lot to me. On the day I see onc. for first time you said he may even want to start treatment then.... what about my second opinion???? wouldn't i want to get that before anything started?

    Thanks

    Jennie

    Breathe!
    Jennie... you are going to have to learn to breathe, breathe, breathe and not to panic at every new report you get. You are going to hear many doctors tell you the same thing but many different ways. I'm not sure what a "Ray" doc is, or why you thought he lied to you? I don't see any reason for a doctor to lie to a patient and as most of us who have been there, done that, know... doctors tend to tell you all the gory, bad, news, all the while hammering it over and over again how bad this all is until you get to the point you want to strangle them and ask, "Is there any GOOD news?" If one were to base their emotions on what doctors say and how they say it, we would all be basket cases with severe depression.

    So, I take it that the first doctor told you about the findings of something on your liver but didn't mention the lung nodules? Did you have someone else with you for this interview and did they hear the same thing? I know it was a shock to me that whoever I took to these doctor appts with me always heard things a lot different than I did. Some things I didn't hear at all... but you can be rest assured the first negative thing I heard, I freaked and my brain would not absorb anything more than that one thing... hence, it is always important to take someone with you who can and will take notes (or take a recorder).

    Now, I know you have heard most of our stories before in other posts, so we aren't going to rehash that... you can always go back to the older posts when you first came on, or the topics where some of the other new folk have asked and we all jumped in to reassure that Stage IV is not a death sentence. I would say the MAJORITY of people in this forum are Stage III or IV... and yes, we are all still very much alive.

    Another bit of advice and I really do believe this... panicking and stressing yourself out is 1) not going to change the situation and 2) is, if anything, going to do a lot more harm than good. Cancer THRIVES on stress. The more you panic and stress out, the more the cancer loves it. I'm not saying it's easy to keep the panic under control, but it really is mandatory if you are going to beat this thing and keep your health intact. If you find you just can't control it and the nerves take over (has happened to the best of us) then get yourself down to your family doctor and have him/her give you a prescription for an anti-depressant or an anti-anxiety med. Seriously, if you freak out every time you get a scan or a report or talk to a doctor about long term treatment... then the cancer will have won. The first step you need to take is to acknowledge that you have cancer and that no, it probably isn't going to ever be "cured". BUT, you have to change the attitude from "I'm going to die of cancer!!!!" to "I'm going to LIVE with cancer!!!" If you were diagnosed today with Diabetes would you panic to the point you couldn't function or think? Probably not... you wouldn't like the diagnosis but you wouldn't freak out. Yet, diabetes kills people every day. On the other hand, lots of people LIVE with diabetes by changing their lifestyle/diet. Well, you must look at cancer the same way... don't deny you have it, but start planning on what you are going to do to live with it. It will mean treatments to get it under control and it probably means ongoing scans, appts, blood tests and maybe some lifestyle changes. But you can do it. We all can and are as we speak.

    So, deep breathing, lots of deep breaths and be happy that you found this forum BEFORE everything starts. Some of us didn't find this forum for over a year... and, in my case, although I had many friends and family to help me out, I went through the fears and terrors alone because I really and truly didn't know what to expect and didn't have someone I could talk to who had been through it. What a difference this forum would have made for me if I had known about it at the time I was DX'd.

    Hang in there!

    Cheryl
  • amcp
    amcp Member Posts: 251 Member
    Options
    Hang ON
    Did you read my reply to you on another post? My husband had mets to lung and liver told no surgery...only chemo to prolong life. Went to Vanderbilt had lung surgery, healed, then liver resection. Get second opinion...Vanderbilt in Nashville, MD Anderson in Houston, and Sloan Kettering (mispelled) I think in NY. I am sure there are more great team approach cancer centers. Keep fighting and we will keep praying.
    Hugs,
    Anna
  • Wenchie
    Wenchie Member Posts: 88
    Options

    Breathe!
    Jennie... you are going to have to learn to breathe, breathe, breathe and not to panic at every new report you get. You are going to hear many doctors tell you the same thing but many different ways. I'm not sure what a "Ray" doc is, or why you thought he lied to you? I don't see any reason for a doctor to lie to a patient and as most of us who have been there, done that, know... doctors tend to tell you all the gory, bad, news, all the while hammering it over and over again how bad this all is until you get to the point you want to strangle them and ask, "Is there any GOOD news?" If one were to base their emotions on what doctors say and how they say it, we would all be basket cases with severe depression.

    So, I take it that the first doctor told you about the findings of something on your liver but didn't mention the lung nodules? Did you have someone else with you for this interview and did they hear the same thing? I know it was a shock to me that whoever I took to these doctor appts with me always heard things a lot different than I did. Some things I didn't hear at all... but you can be rest assured the first negative thing I heard, I freaked and my brain would not absorb anything more than that one thing... hence, it is always important to take someone with you who can and will take notes (or take a recorder).

    Now, I know you have heard most of our stories before in other posts, so we aren't going to rehash that... you can always go back to the older posts when you first came on, or the topics where some of the other new folk have asked and we all jumped in to reassure that Stage IV is not a death sentence. I would say the MAJORITY of people in this forum are Stage III or IV... and yes, we are all still very much alive.

    Another bit of advice and I really do believe this... panicking and stressing yourself out is 1) not going to change the situation and 2) is, if anything, going to do a lot more harm than good. Cancer THRIVES on stress. The more you panic and stress out, the more the cancer loves it. I'm not saying it's easy to keep the panic under control, but it really is mandatory if you are going to beat this thing and keep your health intact. If you find you just can't control it and the nerves take over (has happened to the best of us) then get yourself down to your family doctor and have him/her give you a prescription for an anti-depressant or an anti-anxiety med. Seriously, if you freak out every time you get a scan or a report or talk to a doctor about long term treatment... then the cancer will have won. The first step you need to take is to acknowledge that you have cancer and that no, it probably isn't going to ever be "cured". BUT, you have to change the attitude from "I'm going to die of cancer!!!!" to "I'm going to LIVE with cancer!!!" If you were diagnosed today with Diabetes would you panic to the point you couldn't function or think? Probably not... you wouldn't like the diagnosis but you wouldn't freak out. Yet, diabetes kills people every day. On the other hand, lots of people LIVE with diabetes by changing their lifestyle/diet. Well, you must look at cancer the same way... don't deny you have it, but start planning on what you are going to do to live with it. It will mean treatments to get it under control and it probably means ongoing scans, appts, blood tests and maybe some lifestyle changes. But you can do it. We all can and are as we speak.

    So, deep breathing, lots of deep breaths and be happy that you found this forum BEFORE everything starts. Some of us didn't find this forum for over a year... and, in my case, although I had many friends and family to help me out, I went through the fears and terrors alone because I really and truly didn't know what to expect and didn't have someone I could talk to who had been through it. What a difference this forum would have made for me if I had known about it at the time I was DX'd.

    Hang in there!

    Cheryl

    Breathe
    Cheryl, you're the bomb. What a nice and encouraging letter and a cute new picture too. Thanks for being an inspiration.
  • idlehunters
    idlehunters Member Posts: 1,787 Member
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    amcp said:

    Hang ON
    Did you read my reply to you on another post? My husband had mets to lung and liver told no surgery...only chemo to prolong life. Went to Vanderbilt had lung surgery, healed, then liver resection. Get second opinion...Vanderbilt in Nashville, MD Anderson in Houston, and Sloan Kettering (mispelled) I think in NY. I am sure there are more great team approach cancer centers. Keep fighting and we will keep praying.
    Hugs,
    Anna

    Yes.. I read your Post
    Thank you for sharing your story with me. Now more than ever I can appreciate it. Did you actually go to 3 seperate centers to take care of your husbands treatments?..... man... all of those centers are very highly rated

    Jennie

    Oh...my bad... you went to Vanderbilt??? You were suggesting the others?? Nashville TN??? I am not too far from there.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Options
    Hang in there
    I'll be praying you will find peace with this news and that you'll be able to get more positive news from your oncologist. Don't give up!

    *hugs*
    Gail
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    Options

    Breathe!
    Jennie... you are going to have to learn to breathe, breathe, breathe and not to panic at every new report you get. You are going to hear many doctors tell you the same thing but many different ways. I'm not sure what a "Ray" doc is, or why you thought he lied to you? I don't see any reason for a doctor to lie to a patient and as most of us who have been there, done that, know... doctors tend to tell you all the gory, bad, news, all the while hammering it over and over again how bad this all is until you get to the point you want to strangle them and ask, "Is there any GOOD news?" If one were to base their emotions on what doctors say and how they say it, we would all be basket cases with severe depression.

    So, I take it that the first doctor told you about the findings of something on your liver but didn't mention the lung nodules? Did you have someone else with you for this interview and did they hear the same thing? I know it was a shock to me that whoever I took to these doctor appts with me always heard things a lot different than I did. Some things I didn't hear at all... but you can be rest assured the first negative thing I heard, I freaked and my brain would not absorb anything more than that one thing... hence, it is always important to take someone with you who can and will take notes (or take a recorder).

    Now, I know you have heard most of our stories before in other posts, so we aren't going to rehash that... you can always go back to the older posts when you first came on, or the topics where some of the other new folk have asked and we all jumped in to reassure that Stage IV is not a death sentence. I would say the MAJORITY of people in this forum are Stage III or IV... and yes, we are all still very much alive.

    Another bit of advice and I really do believe this... panicking and stressing yourself out is 1) not going to change the situation and 2) is, if anything, going to do a lot more harm than good. Cancer THRIVES on stress. The more you panic and stress out, the more the cancer loves it. I'm not saying it's easy to keep the panic under control, but it really is mandatory if you are going to beat this thing and keep your health intact. If you find you just can't control it and the nerves take over (has happened to the best of us) then get yourself down to your family doctor and have him/her give you a prescription for an anti-depressant or an anti-anxiety med. Seriously, if you freak out every time you get a scan or a report or talk to a doctor about long term treatment... then the cancer will have won. The first step you need to take is to acknowledge that you have cancer and that no, it probably isn't going to ever be "cured". BUT, you have to change the attitude from "I'm going to die of cancer!!!!" to "I'm going to LIVE with cancer!!!" If you were diagnosed today with Diabetes would you panic to the point you couldn't function or think? Probably not... you wouldn't like the diagnosis but you wouldn't freak out. Yet, diabetes kills people every day. On the other hand, lots of people LIVE with diabetes by changing their lifestyle/diet. Well, you must look at cancer the same way... don't deny you have it, but start planning on what you are going to do to live with it. It will mean treatments to get it under control and it probably means ongoing scans, appts, blood tests and maybe some lifestyle changes. But you can do it. We all can and are as we speak.

    So, deep breathing, lots of deep breaths and be happy that you found this forum BEFORE everything starts. Some of us didn't find this forum for over a year... and, in my case, although I had many friends and family to help me out, I went through the fears and terrors alone because I really and truly didn't know what to expect and didn't have someone I could talk to who had been through it. What a difference this forum would have made for me if I had known about it at the time I was DX'd.

    Hang in there!

    Cheryl

    Breathing....cheryl
    Hi Cheryl..... Good to hear from you! Ray doc is the oncology radiologist. I waited a week to see this man.... could not wait for scan results. Husband was with me. He heard everything as I did. the dude just hee hawed around with a bunch of info i could care less about and then i finally said .. " look, i just want my scan results...what are they?" He still dragged a leg until my husband told him i had not slept all night and we weren't leaving till he got us those results. He reluctantly said ok..... went out of room....came back in a few minutes later. Said he was really hoping to push this off on onc. says "oh... it's not good" what ain't good??? "well, you have a very small spot on your liver" after questions about that... how it got there...how big.. i asked was there any more anywhere..."NO he said" thats where the lie came in. Told me i was now stage IV..I was crying by that time...just wanted out of there. They needed me to sign a paper in the middle of all of this and as I was that ray doc kept trying to pull my husband to the side and tell him something. that REALLY made me mad. I am the patient... you got something to say tell me.... needless to say... i have wrote him off... don't like him...can't trust him. That is that story.

    I do realize what I have to LIVE with..... and I know I have a big fight on my hands. After this shock wears off I am going to do nothing but focus on LIVING!

    Thanks Cheryl

    Jennie
  • amcp
    amcp Member Posts: 251 Member
    Options

    Yes.. I read your Post
    Thank you for sharing your story with me. Now more than ever I can appreciate it. Did you actually go to 3 seperate centers to take care of your husbands treatments?..... man... all of those centers are very highly rated

    Jennie

    Oh...my bad... you went to Vanderbilt??? You were suggesting the others?? Nashville TN??? I am not too far from there.

    Vanderbilt Web Site
    I just answered your private email. I have a website you can go to to learn about Vanderbilt Medical Center in Nashville TN.....it is http://www.VanderbiltHealth.com....this will give your general information and may help. remember I am here to help in any way I can.
    Praying for you.
    Anna
  • snommintj
    snommintj Member Posts: 601
    Options
    tootsie1 said:

    Hang in there
    I'll be praying you will find peace with this news and that you'll be able to get more positive news from your oncologist. Don't give up!

    *hugs*
    Gail

    Tough diagnosis
    I sympathize with you on your diagnosis. But I don't think you have to throw the towel in just yet. The Drs are bound by certain protocols that are not extremely flexible. Fortunately there is some wiggle room. In the US you aren't currently a good surgical candidate; and currently surgery is the only known cure. Your goal should be to steadily move toward becoming a surgical candidate. That all starts with chemo. I don't know if you've had chemo in the past but if you responded well to it you should go back on it. You're going to have to deal with your liver first I think. If you only have a few small spots then RFA is probably going to be your best bet. Then perhaps more chemo. Once your liver situation has been fully dealt with then you can focus on your lungs. Remember your lungs don't grow back so ideally you would want a complete response from chemo. If that doesn't happen RFA or surgery will be an option. The goal is to stay alive long enough to get to the next new treatment. There are some extremely effective treatments coming down the road so if you can make it 2-3 years you should be in the clear.
    My surgeon has been in charge of my treatment since day 1. Even though I wasn't originally considered a surgical candidate, I wanted to become one. If I was in your position I would try to go this route, I would also have an Interventional radiologist on my team.
    I know you want to strangle the first Dr to review your scans with you, but I don't think he usually deals directly with patients in that manner. He probably just passes information on to other Drs. Good Luck
  • Buzzard
    Buzzard Member Posts: 3,043 Member
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    snommintj said:

    Tough diagnosis
    I sympathize with you on your diagnosis. But I don't think you have to throw the towel in just yet. The Drs are bound by certain protocols that are not extremely flexible. Fortunately there is some wiggle room. In the US you aren't currently a good surgical candidate; and currently surgery is the only known cure. Your goal should be to steadily move toward becoming a surgical candidate. That all starts with chemo. I don't know if you've had chemo in the past but if you responded well to it you should go back on it. You're going to have to deal with your liver first I think. If you only have a few small spots then RFA is probably going to be your best bet. Then perhaps more chemo. Once your liver situation has been fully dealt with then you can focus on your lungs. Remember your lungs don't grow back so ideally you would want a complete response from chemo. If that doesn't happen RFA or surgery will be an option. The goal is to stay alive long enough to get to the next new treatment. There are some extremely effective treatments coming down the road so if you can make it 2-3 years you should be in the clear.
    My surgeon has been in charge of my treatment since day 1. Even though I wasn't originally considered a surgical candidate, I wanted to become one. If I was in your position I would try to go this route, I would also have an Interventional radiologist on my team.
    I know you want to strangle the first Dr to review your scans with you, but I don't think he usually deals directly with patients in that manner. He probably just passes information on to other Drs. Good Luck

    Jennie......
    I would venture to say that everyone on this board had the exact same thoughts when first diagnosed...but as we get farther into the "World of Cancer" we realize that it isn't the death sentence that it use to be by no means. There are so many new treatments and so many coming each day that people are becoming NED,NEAD,or able to coinside with this disease and lead a relatively normal long life. Don't go wandering around on the world wide web and reading articles on this... They are 5 years old and outdated...This is the only place where you will get the straight story about treatments. Start looking around in here at all the Stage 4's that have a relatively normal and happy life and come in here to lift up the spirits of others and ask nothing in return..It is amazing and I admire them because they kept me from insanity when I was diagnosed also...and you'll be around here to do the same as well....Now go forward and use your strength to move "one step at a time" to get through this ...It won't happen overnight....but I have faith it will happen...... :)
  • idlehunters
    idlehunters Member Posts: 1,787 Member
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    Buzzard said:

    Jennie......
    I would venture to say that everyone on this board had the exact same thoughts when first diagnosed...but as we get farther into the "World of Cancer" we realize that it isn't the death sentence that it use to be by no means. There are so many new treatments and so many coming each day that people are becoming NED,NEAD,or able to coinside with this disease and lead a relatively normal long life. Don't go wandering around on the world wide web and reading articles on this... They are 5 years old and outdated...This is the only place where you will get the straight story about treatments. Start looking around in here at all the Stage 4's that have a relatively normal and happy life and come in here to lift up the spirits of others and ask nothing in return..It is amazing and I admire them because they kept me from insanity when I was diagnosed also...and you'll be around here to do the same as well....Now go forward and use your strength to move "one step at a time" to get through this ...It won't happen overnight....but I have faith it will happen...... :)

    Thanks Everybody
    I have read all of your stories. They inspire me. I was hoping to find someone in my same shoes. 1 Nodule in liver & multiple in lungs. I read stories with the scenario reversed but I know the lungs are very hard to treat.... no where near the liver since it don't regenerate. I have not had any chemo as of yet so I don't know anything about that. I have definately decided to get a second opinion before I start any kind of treatment. Just from the knowledge I have gained here (thanks to you all) I now know how important it is to get it right from the beginning. I am kinda confused though. If I go to the place I want to go to for my second opinion.... it is 5 hours away... what if I decide to stay with them for treatment???? How often is treatment??? A few days at a time so I could stay there and come home inbetween... or is it a daily thing? That would not allow me to come home at all.

    Jennie
  • kimby
    kimby Member Posts: 797
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    Thanks Everybody
    I have read all of your stories. They inspire me. I was hoping to find someone in my same shoes. 1 Nodule in liver & multiple in lungs. I read stories with the scenario reversed but I know the lungs are very hard to treat.... no where near the liver since it don't regenerate. I have not had any chemo as of yet so I don't know anything about that. I have definately decided to get a second opinion before I start any kind of treatment. Just from the knowledge I have gained here (thanks to you all) I now know how important it is to get it right from the beginning. I am kinda confused though. If I go to the place I want to go to for my second opinion.... it is 5 hours away... what if I decide to stay with them for treatment???? How often is treatment??? A few days at a time so I could stay there and come home inbetween... or is it a daily thing? That would not allow me to come home at all.

    Jennie

    Jennie
    Jennie,

    Look for "Impactzone" in a member search and read Chip's story. I think it will match yours more closely as I know he's had lung mets a couple of times. If I think of any others I'll let you know.

    Kimby