News Not Good
The original plan a month ago was to do the liver and then go back in and remove the 2 very small lesions on the left lung that were too small to confirm as cancer.
Today, my world fell apart. The 2 spots have turned into at least 20 and are spread through out both lungs. I am not longer a candidate for surgery. They still have not confirmed that they are cancer and my CEA is only .8 however due to the spread and increase they are certain that is the case.
The next step is 6 months of agressive chemo. IF and they mean IF that goes well I will then be put on chemo for life. The lung surgeon said there is no chance of a cure - no change of surgery. I asked him if the chemo could get rid of enough lessions to be a candidate for suergery and he said no because mine are too far spread out.
The oncologist says that very few live past 5 years at this point and that very few make it to five years.
I am 45 years old with a husband and child I love so much. I have fought so hard. How did everything change so fast?
Comments
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Your Avatar
Dear Vicki,
Your avatar says it all. Perhaps the only word which could express it more is a verb which begins with an "F". It is very saddening to read your words, your tone sounds very down. Have you been on chemo recently, if so what drugs were they giving you? If not, when was the last time that you had treatment?
As you know, this wretched disease affects each of us in different ways and our bodies vary in their response. The Scottish philosopher David Hume once expressed his opinion that miracles were the purview of the uneducated. I, however, know that miracles occur every day and also know that the doctors will almost always present the worst case scenario. You have such great strength within as we've all seen from your past posts and there is no doubt in my heart that you can overcome this latest challenge. Get as aggressive as your onc will allow in your treatment and use that great spirit which we've all read in your words. You CAN beat this thing and be one of those who treats yourself to a special treat when you hit that 5 year mark.
If you're doing so already, keep track of the numbers from your blood work and use that to adjust your diet to bring all of the values into range, if need be. If you need it, I will always be here for you. Heck, I might even get a little cheerleader outfit to help cheer you on! I got the legs for it and thanks to radiation, won't even need to shave them! I will pray for you and please PM me if you need to vent or need a shoulder to lean on.
Best wishes and prayers for your fight,
Doc/Ray0 -
Vickilg -
I very strongly suggest you get another opinion (or three) from
a different surgeon that is not of the same organization or group.
If it's possible to go out of the area for a surgeon specializing
in cancer surgery, it would be even better.
I also would not base all my options on one scan reading. Too
often the scan or the radiologist can be very wrong! It's happened
to me very recently, and it knocked the stuffing out of me.
It would do you well to get other opinions from other surgeons.
Personally, I would forget the oncologist's opinion, and get a
new one if/when you find that an oncologist is what you need.
It's a long road, but you'll do fine. Just take a day at a time,
and get other opinions regarding the problem. You may find
that you're healthier than you thought.
My best to you,
John0 -
Vicki
Vicki - my CEA was not a good marker when I had cancer in the lungs either....I was sitting at 0.8 reading as well with a tumor the size of a tangerine embedded in my rib cage and chest cavity.
With that many spots, I can't see those as being all granulomas or calcifications. Have they indicated whether they want to do a PET scan or not?
I can't remember which chemo drugs you have done....Irinotecan is good at shrinking tumors, even alot of them. Even though they say chemo for life, it's possible that you could have a good response to this and that the tumors would shrink or disappear under the radar.
You might still end up a candidate for a lung resection - just don't give in yet. A few cycles of this and a scan showing tumors shrinking or disappearing could be just over the horizon. I've seen it happen here quite a few times.
I don't know where you are located in the country - and I know it's a hassle and aggravation, but you might want to consider getting a second opinion from another thoracic surgeon. This could go a long way to either confirm or dispute these recent findings.
And it's possible, that you could send your scans and data to another office and have them consult with you via phone. It would be worth asking. I've got a good lung doc that I've gone to battle with twice. I could give you his PA's name and number if you wanted to call and see what they could do. I'm in Texas in the D/FW area.
I feel your heart breaking and while your surgeon was running the odds by you, there are some cases here that have gone longer than 5-years....including yours truly:)
It just seems that there is still things to try and do...have you been KRAS tested yet? Wild means you can do Erbitux or Vecitibix - Mutant means it is not recommended for those patients.
Avastin is good at choking off blood supply to tumors, so this may be an option for you...effectiveness doubles with Folfox or Folfiri....but you need to wait 6-8 weeks after a surgery to begin taking this...discuss with your onc.
Ablation on the lungs might be possible to if enough mass shrinks and the location was favorable.
You're not done yet - not by a long shot. Be a Weeble like me - we wobble but we don't fall down:)
I'm sorry for this news - always difficult to wrap your mind around right away. After the news wears off, discuss some of this with your onc and see what the options are.
"There's many a slip betwixt the cup and the lip."
Which means that nothing is etched in stone...
You have fought very hard...I'm of the opinion that if we fight hard, that we should expect to see some response. I know it does not always work like that....still fighting hard is the one requirement from all of us...we have to fight on - that's the one thing that we can control.
Thoughts and best wishes for you and your family.
-Craig0 -
Take a deep breathSundanceh said:Vicki
Vicki - my CEA was not a good marker when I had cancer in the lungs either....I was sitting at 0.8 reading as well with a tumor the size of a tangerine embedded in my rib cage and chest cavity.
With that many spots, I can't see those as being all granulomas or calcifications. Have they indicated whether they want to do a PET scan or not?
I can't remember which chemo drugs you have done....Irinotecan is good at shrinking tumors, even alot of them. Even though they say chemo for life, it's possible that you could have a good response to this and that the tumors would shrink or disappear under the radar.
You might still end up a candidate for a lung resection - just don't give in yet. A few cycles of this and a scan showing tumors shrinking or disappearing could be just over the horizon. I've seen it happen here quite a few times.
I don't know where you are located in the country - and I know it's a hassle and aggravation, but you might want to consider getting a second opinion from another thoracic surgeon. This could go a long way to either confirm or dispute these recent findings.
And it's possible, that you could send your scans and data to another office and have them consult with you via phone. It would be worth asking. I've got a good lung doc that I've gone to battle with twice. I could give you his PA's name and number if you wanted to call and see what they could do. I'm in Texas in the D/FW area.
I feel your heart breaking and while your surgeon was running the odds by you, there are some cases here that have gone longer than 5-years....including yours truly:)
It just seems that there is still things to try and do...have you been KRAS tested yet? Wild means you can do Erbitux or Vecitibix - Mutant means it is not recommended for those patients.
Avastin is good at choking off blood supply to tumors, so this may be an option for you...effectiveness doubles with Folfox or Folfiri....but you need to wait 6-8 weeks after a surgery to begin taking this...discuss with your onc.
Ablation on the lungs might be possible to if enough mass shrinks and the location was favorable.
You're not done yet - not by a long shot. Be a Weeble like me - we wobble but we don't fall down:)
I'm sorry for this news - always difficult to wrap your mind around right away. After the news wears off, discuss some of this with your onc and see what the options are.
"There's many a slip betwixt the cup and the lip."
Which means that nothing is etched in stone...
You have fought very hard...I'm of the opinion that if we fight hard, that we should expect to see some response. I know it does not always work like that....still fighting hard is the one requirement from all of us...we have to fight on - that's the one thing that we can control.
Thoughts and best wishes for you and your family.
-Craig
Hi Vicki,
I am really sorry that you are once again hit with difficult news. My heart and prayer are with you. Doctors know a lot (some more than others) but they don't know everything. I agree with the advice already offered to get a second, third opinion. The best advice I got when I was diagnosed came from a nurse who said to me "give yourself 72 hours to cry and then, get pro-active." You have a lot to live for and incredible strength within yourself. Know that we are here any time of day or night.
Hugs,
Cathleen Mary0 -
Sheesh I "F" "N" hateCathleen Mary said:Take a deep breath
Hi Vicki,
I am really sorry that you are once again hit with difficult news. My heart and prayer are with you. Doctors know a lot (some more than others) but they don't know everything. I agree with the advice already offered to get a second, third opinion. The best advice I got when I was diagnosed came from a nurse who said to me "give yourself 72 hours to cry and then, get pro-active." You have a lot to live for and incredible strength within yourself. Know that we are here any time of day or night.
Hugs,
Cathleen Mary
Sheesh I "F" "N" hate this disease. Listen to Craigs words, he's been there, done that....find a plan and go with it...seek second, third opinions and find an onc. who is willing to work with you.0 -
I hate cancer so much-get another opinionsmokeyjoe said:Sheesh I "F" "N" hate
Sheesh I "F" "N" hate this disease. Listen to Craigs words, he's been there, done that....find a plan and go with it...seek second, third opinions and find an onc. who is willing to work with you.
Vicki-This is upsetting information from the surgeon, no doubt. I felt it in my heart reading your post.
You have to get another opinion and I have read promising posts of switching chemo's and lung nodule stability.
I understand your fear. My lung mets were in both lungs and a spot on the liver. Its because I had the 'f' off attitude and I'm getting another opinion that I have been given hope. We can only take it one day at a time. Reading all the brave steps these folks on the boards have taken can help us to seek other treatments. Cancer is so sneaky and complex but when Dr.'s put timelines on our prognosis it throws us into a greater tailspin.
You deserve time to filter through this and find resolve to get a second opinion and another plan.
You have solid advise on this post and I am so glad for the kindness of the folks on these boards.
We have all been through so much emotionally...
My prayers are with you and your family.0 -
Vickie may I ask how weresmokeyjoe said:Sheesh I "F" "N" hate
Sheesh I "F" "N" hate this disease. Listen to Craigs words, he's been there, done that....find a plan and go with it...seek second, third opinions and find an onc. who is willing to work with you.
Vickie may I ask how were these lung mets discovered, CT, PET??0 -
Vickismokeyjoe said:Vickie may I ask how were
Vickie may I ask how were these lung mets discovered, CT, PET??
Damm it. Sorry for this.
I'm confused as to why there wasn't much discussion by the docs about possible options after chemo. True, you need to start chemo, but aggressive chemo could very well work on the lung tumors.
Would it be possible to radiate the lymph node later?
I'm so sorry. Let's all let this soak in, then there is time to get other opinions. We are here for you.!!! You are NOT alone!!!!
I'm having a good cry right now.
Big hug!0 -
People ask that question, if
People ask that question, if you could have one power, what would it be. I used to say invisibility. Since being on these boards, that's not it anymore. I went to Sloan and got a completely different story from my local surgeon. There are different hospitals. All my prayers, hugs and love are with you. Helen0 -
Praying
I do not know how to respond and even if I did I am not sure anything I say will make you feel better. I will simply say "I am praying for you." I wish there was more that I could tell you to make it better, but there's not ,so I'll leave it at that.0 -
Sorry. double post. deleted.
Sorry. double post. deleted.0 -
You have to get a second or
You have to get a second or third opinion. Like Craig said you can sometimes get one over the phone. I seeked a second opinio last year. I mailed them a copy of my scan and the surgeons nurse called me back with his opinion and they sent me the bill. It was at one of the top cancer centers in the country and well worth the money. There are also a couple of new drugs on the hoizon and clinicle trials.
The fight has just begun for you. Dont accept what those doctors say.
Do something you love with your family this weekend. Have a good cry or two and come out fighting Monday morning.0 -
Sending good thoughts your way!
Sending good thoughts your way! Our thoughts and prayers are with you.
The Big C is fought on several battlefields. There are several good cancer diets that have health benefits. Mind Set is another battlefield. Staying strong for your self and your family. Exercise is good for the body and to clear the mind. Chemo to kill off the bad cells and with the help of the other battlefields will be more effective.
A friend from college had Stage IV colon cancer. Her Doc told her she would not make it two years. 9 years later Jessica is looking great and working and doing well. Her optimism is infectious.
Keep up the good fight!
Best Always, mike0 -
Echoing Doc...Doc_Hawk said:Your Avatar
Dear Vicki,
Your avatar says it all. Perhaps the only word which could express it more is a verb which begins with an "F". It is very saddening to read your words, your tone sounds very down. Have you been on chemo recently, if so what drugs were they giving you? If not, when was the last time that you had treatment?
As you know, this wretched disease affects each of us in different ways and our bodies vary in their response. The Scottish philosopher David Hume once expressed his opinion that miracles were the purview of the uneducated. I, however, know that miracles occur every day and also know that the doctors will almost always present the worst case scenario. You have such great strength within as we've all seen from your past posts and there is no doubt in my heart that you can overcome this latest challenge. Get as aggressive as your onc will allow in your treatment and use that great spirit which we've all read in your words. You CAN beat this thing and be one of those who treats yourself to a special treat when you hit that 5 year mark.
If you're doing so already, keep track of the numbers from your blood work and use that to adjust your diet to bring all of the values into range, if need be. If you need it, I will always be here for you. Heck, I might even get a little cheerleader outfit to help cheer you on! I got the legs for it and thanks to radiation, won't even need to shave them! I will pray for you and please PM me if you need to vent or need a shoulder to lean on.
Best wishes and prayers for your fight,
Doc/Ray
...regarding doctors giving the worst case scenario. I've spent a lot of time with my parish Priest, and his sister is an attorney that represents hospitals in malpractice suits. He said that they recommend to docs to give the worst case scenario so they're less likely to get sued -- avoiding the "but you told me I was gonna make it X years" argument. My second opinion onc did NOT agree with the first onc, and the chemo for life, terminal, etc. That may still be the case, but it gave me hope. She just indicated there's just too much that we don't know yet. That made it easier to handle the treatments (now 5 months in). We're all different and they don't know how you're going to respond. You're in my prayers, but just keep fighting.
Hugs,
Dan0 -
Sorry
I'm not sure what to say but your post made me so sad. I'm hoping that the treatments can shrink the lesions and you will be a great statistic by beating the odds of what your doctor gave you.
Kim0 -
Vicki....thxmiker said:Sending good thoughts your way!
Sending good thoughts your way! Our thoughts and prayers are with you.
The Big C is fought on several battlefields. There are several good cancer diets that have health benefits. Mind Set is another battlefield. Staying strong for your self and your family. Exercise is good for the body and to clear the mind. Chemo to kill off the bad cells and with the help of the other battlefields will be more effective.
A friend from college had Stage IV colon cancer. Her Doc told her she would not make it two years. 9 years later Jessica is looking great and working and doing well. Her optimism is infectious.
Keep up the good fight!
Best Always, mike
No...do not listen to one opinion about how you gonna die in 5 years...that ain't happening! 3 years ago I had 4 liver mets....ALL GONE since...and 20+ lung mets spread all over the place and was told at MDA that I had 2 months. Had chemo...3 cyberknives.....and have recurred a few times in the lungs...but down to 2 very small mets and lungs good.... my 2nd and 3rd opinions reaped many rewards. You a fighter Vic....go get em girl!!! I know you wont take this laying down. That baby counting on you...go kick arse!!! Love ya!
Jennie0 -
Thank You Everyone!Annabelle41415 said:Sorry
I'm not sure what to say but your post made me so sad. I'm hoping that the treatments can shrink the lesions and you will be a great statistic by beating the odds of what your doctor gave you.
Kim
Good morning... All of your posts are so much appreciated. I wish I could gather all of you up and give you hugs personally. Your words mean so much to me. I am going to take your advice and get a couple of other opinions. I go to Cleveland Clinic in Weston (South Florida) and truly have only good things to say about them however when the lung surgeon was so dismissive it was something new.
I was thinking of contacting Cancer Centers of America based soley on their commercials. Does anyone have anything to say about them? Craig, I am going to message you for your doctors name in Texas.
In answering your questions and I apologize if I have missed any, but if I have, please just ask again. I am all about sharing our stories in hopes that it will help someone else. The chemos I have been on have been Xeloda, Erbitux and Oxiplatin. I am not sure what type they are going to put me on this time. One lung spot was found on a PetScan although it did not light up. They next did a Catscan 2 months ago that showed 2 very small spots near eachother. I did a Catscan on Monday which now shows the 20 spots.
I also want to apologize for all of the typos when I post. You can tell my mind is overwhelmed.
Yesterday was such a horrible day and breaking the news to my daughter was heart breaking.
Much love to you all!
Vicki0 -
Sounds like you still haveVickilg said:Thank You Everyone!
Good morning... All of your posts are so much appreciated. I wish I could gather all of you up and give you hugs personally. Your words mean so much to me. I am going to take your advice and get a couple of other opinions. I go to Cleveland Clinic in Weston (South Florida) and truly have only good things to say about them however when the lung surgeon was so dismissive it was something new.
I was thinking of contacting Cancer Centers of America based soley on their commercials. Does anyone have anything to say about them? Craig, I am going to message you for your doctors name in Texas.
In answering your questions and I apologize if I have missed any, but if I have, please just ask again. I am all about sharing our stories in hopes that it will help someone else. The chemos I have been on have been Xeloda, Erbitux and Oxiplatin. I am not sure what type they are going to put me on this time. One lung spot was found on a PetScan although it did not light up. They next did a Catscan 2 months ago that showed 2 very small spots near eachother. I did a Catscan on Monday which now shows the 20 spots.
I also want to apologize for all of the typos when I post. You can tell my mind is overwhelmed.
Yesterday was such a horrible day and breaking the news to my daughter was heart breaking.
Much love to you all!
Vicki
Sounds like you still have options. You didnt mention irrinotecan or avastin which are options not to mention the new drugs that are about to be approved. Hopefully you can get on a treatment plan that will kill all or most of the spots. Then maybe surgery RFA or cyberknife becomes an option.0
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