Post Op Vats Surgery 4 week checkup........*****UPDATE*****

Options
Buzzard
Buzzard Member Posts: 3,043 Member
edited March 2014 in Colorectal Cancer #1
Loading up the mule and heading up to Nashville in the morning for an 1120 appt with Dr Lambright to see how I am recouping and of course to discuss which direction I should take....Got several questions to ask, 1) because my margins and nodes were clear and there is no sign of it in my blood anywhere would a post op chemo regimen be proper protocol it being a met and not a primary and what exactly would it include if any...2) I don't talk about percentages so I would like to know about quality vs quantity and suggestions for each...(I guess I am somewhat asking for percentage of survival) but having my head on straight I have been through Folfox and still re occurred and was sick from it for 8 months with neuropathy still as part of the past treatment, so if the end result is inevitable (which one can only speculate)in the near future (again just a guess) why would I want to spend it sick after post op treatment that may not help at all in any instance and simply blood test and scan regularly ( CEA never increased until it was 1.4 centimeters) to keep track of it...3) If there are no signs of it in any test that was ran after surgery then why was it detected just prior to surgery through a blood test ? Thats the most important one I want an answer to...

Anyone have anything to add that I may need to ask ? I am not bashful or scared so if you want to add something to my list please do so...Thats what this is for, to assure that all my questions are answered and I don't leave and then remember something important...and yes, I am taking my list with me.........Love to all, Clift

*******UPDATE*********

Got home about 4 this evening...normally feel bummed after a day trip to Nashvile and back, no different today....just tired. But, I did get the information I thought I would so there was no surprise really, just actually hearing it from the Dr was a little aggravating but it is what it is........it is met from CRC ...all margins and nodes were clear so he did say that as of now there is no activity or cancer showing up anywhere in my body.....
......I asked about if all nodes and margins are clear would adjuvant chemo be proper protocol....He said depends on what I want and what the Onc and I decided on...

......I asked about Stage...and yep, I graduated to Stage 4, no surprise there either...

......I asked if it was possible that this cell could have burrowed up until Folfox was over and then started cell division after the chemo all clear....He said absolutely.....

......I asked him prognosis and he told me 1 in 6 come out unscathed on the other side and live a long life....

......I asked him about why my Onc never scanned when it was obvious that a scan would have picked up this tumor a lot earlier.......He replied that it may have been that the Onc thought that the radiation would cause more harm than good.....

......Im going back to work the 18th of this month as I was looking good with healing and no pain at all..I am on a 10 # weight restriction....

......I am getting a second opinion from an Onc at Vandy to determine what treatment regimen if any she will recommend and see if it corresponds with what I have in mind.....

My Onc now is a great man, I just think that I may run a little better percentile if I got another fresh face to look at my situation...My surgeon informed me that if I was his son that he would recommend a 2nd opinion and that he could even have the Onc at Vandy dictate protocol from Vandy and let my Onc here administer the treatment, whatever it is if any.....I am going back for 2nd opinion before my appointment the 17th to see what options she has for me, then I will decide on the path I take. I do like my Onc I have now, but I am at the stage of the game where I have to make decisions that are best for me and my family, and not worry right now about upsetting someone in the medical field...

.......So, in essence, the good news in all of this is I am not stage 5...I also did enjoy my month off of work and not having to run back and forth to the Drs every other day. I have some large choices to make before long, but ya know, tomorrow, everything is gonna be alright again...its just been a long day.....I love ya all, and thank you for all the thoughts and prayers...Its gonna be ok......Buzz
«1

Comments

  • thready
    thready Member Posts: 474
    Options
    Just thinking
    Hi Buzzard,
    I was just wondering if I got this straight. Your CEA did not increase until the met was 1.4cm? And then #3 there were not signs of the met after your original surgery (?) but then before lung surgery your labs showed evidence?

    For some reason my onc seems to think that PET scans don't show anything of importance until met is at least 2 to 2.5cm. Also she is convinced the CEA will rise if there is any active disease. I am not comfortable with this at all. Seems other who have mets not seen on CT but were seen on PET and not everyone has elevated CEA with mets. Am I correct. What are your thoughts.
    (Looking over my shoulder-and seeing only ghosts of chemo past, yet still a bit leery because of other issues.)

    Jan
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Options
    Best wishes
    Dear Clift,

    Hoping that all goes well with your post op and that the doc has answers to your questions which can help clarify direction to go with treatments.

    I guess if it was me, I would want to know if there is anything other than Folfox which could be used for treatment since that made you so sick before.

    Also guess I could want to know just how long any chemo treatment would have to last.

    While your doc may give you the stats for or against any particular direction, just remember that whatever your decision is it is the best one for you and don't ever look back on it with regret.

    Prayers for a safe trip and a workable solution for you.

    Marie who loves kitties
  • z
    z Member Posts: 1,414 Member
    Options
    Clift
    Hi Clift,

    My question for my dr if it is a met to my lung, will be since I had no lymph node involvement, anal or lung, how did it travel via the blood stream and pick that spot in my lung to start growing, Is it because that was the easiest place to grow as the immune system couldn't get rid of it. I was a 35yr 1 pack a day smoker until 5-4-09, (days before start up of tx for anal cancer). I am anxious to learn of what the answers to your questions are. Lori
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Options
    Hey Buzz
    Pardon me, Buzz, I'm still in a chemo fog, but wanted to offer this to you.

    In your case, since they cut the tumor out and it was a met and you got clear margins, the issue of whether or whether not to do chemo again is a valid one.

    Obviously, micropscopic cells can roam through our body and go undetected until they reach a certain size to be picked up on a CT or PET scan as a mass. So, the question is, if we have no "discernible mass" do we go ahead and systemically re-introduce chemo again?

    Or do we watch and wait for 3-months and see if the next set of scans pick something up. I've done it both ways where I didn't do chemo after a surgery - and I did do chemo following surgery. I ended up with Recurrence both times.

    As you know, I'm on #3 recurrence now. My situation differs in the fact that there is tumor left with 100% active cancer cells, so chemo and radiation are valid protocols in my attack plan - it would be hard for me to argue with those. I leave these alone and don't go on the attack...

    If they did chemo, Folfiri might be the way they go - I'm quite sure they would go ahead and prescribe six-months right off the top.

    I suppose my question to him (as you) would be: How good do we feel about watching and monitoring the area in question at this time vs doing chemo since we currently don't see any activity?

    It's a huge question, Buzz, and I think one of the biggest that any of us faces as we march through this. And sometimes, the answers are not so clear as we'd like to think.

    Best of luck with your appointment and I hope you get some answers that will help you make your decision a little clearer.

    -Craig
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    Options
    z said:

    Clift
    Hi Clift,

    My question for my dr if it is a met to my lung, will be since I had no lymph node involvement, anal or lung, how did it travel via the blood stream and pick that spot in my lung to start growing, Is it because that was the easiest place to grow as the immune system couldn't get rid of it. I was a 35yr 1 pack a day smoker until 5-4-09, (days before start up of tx for anal cancer). I am anxious to learn of what the answers to your questions are. Lori

    At least post op treatments are not specially sugested here.
    at least not long term ones.No studies have demonstrated longer survivals after a successful surgery by having chemo after it. Just often controls an back surgery if needed.That was my case.Unfortunately one year after got a recurrence but onc says probably the same with chemo.
    To be honest l don regret , have had a quite good year enjoying family traveling and not feeling like a Zombie.
    I thing is gonna be my choice again after my second resection.
    Hope it helped.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Options
    Praying for you
    Hey, Buzz.

    As you know, I have not had chemo, so I can't add much to that discussion. I just want to say that I will be praying for a safe journey for you and wisdom for you and your doctor as you try to determine the best course of action. You know how much you are cared for here in this group, so you know we'll all be anxious to hear your report.

    *hugs*
    Gail
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    Options
    thready said:

    Just thinking
    Hi Buzzard,
    I was just wondering if I got this straight. Your CEA did not increase until the met was 1.4cm? And then #3 there were not signs of the met after your original surgery (?) but then before lung surgery your labs showed evidence?

    For some reason my onc seems to think that PET scans don't show anything of importance until met is at least 2 to 2.5cm. Also she is convinced the CEA will rise if there is any active disease. I am not comfortable with this at all. Seems other who have mets not seen on CT but were seen on PET and not everyone has elevated CEA with mets. Am I correct. What are your thoughts.
    (Looking over my shoulder-and seeing only ghosts of chemo past, yet still a bit leery because of other issues.)

    Jan

    Jan...maybe a little better explanation
    I had my first surgery 3/15/08 then did adjuvant Folfox for 6 months post surgery...I re occurred in July and had my 2nd surgery (VATS) in 09/07/10...I never had any scans during that 2 year hiatus until in July my CEA went from 2 to a 9.7 then after a second blood draw increased to a 10.4. Scans were then ordered, PET before CT (haven't figured that one out yet) and it confirmed a mass on the left upper lobe in the lingula area that did indeed path to be a CRC met . Then after my VATS surgery to remove 1/2 of the lobe the nodes that were taken out showed no sign of any cancer cells and all margins were clear, and there are no signs of cancer in any of my blood tests that were run. My guess is that there were a few CRC cancer cells that escaped and burrowed deep enough in the lung tissue to escape the barrage of chemo until the treatment regimen ended and then began the process of cell division until the mass was formed...My question is this, why did it get so large and wasn't detected until 1.4 cm size. Also , if it has no node involvement and all clear margins are clear that indicates to me that there is no way that it could be in my bloodstream now or the nodes somewhere would show activity coming or going in the lymphatic system, there is no indication of that either. I understand that cancer is a very tricky and deceptive disease, but I also understand that through all of this is a constant, that during my initial surgery in 2008 a lot of the nodes surrounding the area were damaged so severely that it wasn't a 100% that all nodes were clear even though the margins were so that tells me where the met cell came from, all now I have to worry about is when and where the next one that burrowed itself up during the initial barrage will rear itself and if a second chemo treatment regimen may be warranted and if so will it do any better than the first one did. I understand that the initial Folfox most likely killed a lot of stray cells and for that I am thankful, I am just wondering if a second one is necessary when I think a yearly regimen of scans would do just as good if not better than preventative chemo.....


    In my opinion if my Onc were to tell me that a PET doesn't show anything of importance until it gets to be a certain size I would suggest 2 things, (1) to ask her again and see if she made the same statement...(2) if she did answer with the same outcome then I would tell her thanks but gotta go....

    We have through discussion in here know for a fact that CEA is not a clear cut indicator for everyone...My tumor was 1.4 cm (about 3/4 ") before my CEA started to elevate so that negates that theory.....also a PET scan is a nuclear imaging scan that is designed to light up miniscule cells that feed faster than a normal cell would on a fructose(sugar based) imaging injectable liquid...A CAT scan shows more mass or tumor growths and then the PET scan shows the mass along with other miniscule cells of activity to show widespread, or specific locales of smaller cell activity in the system..They can then match the two to determine the best possible route to take in the treatment or removal of the tumor, growth, mass, or progression of the cancerous cells and to what extent they are invading...

    QUOTE...."For some reason my onc seems to think that PET scans don't show anything of importance until met is at least 2 to 2.5cm." END QUOTE....
    Thats approx 1 1/2" in diameter. I would think that a PET would most likely show it at its initial birthing.....and mets sometimes are very small nodules hidden by liver or lobe and not seen or found until the organ is actually manually manipulated and sometimes then others are found that weren't present when scanned or the scan missed it. I would gather a list of questions that were relative to your own treatment and health and ask away to see what type of answers I got and double check them with others. You need to trust your medical team 100%.....I will have several questions when I meet with my Onc the 12th of this month, one of which will be the reasoning for no scans at certain intervals, he will most likely tell me that my CEA didn't make a scan relevant, if he makes that statement then I will inform him that from now on scans will be relevant to assure that a 3/4" tumor doesn't get a headstart and a chance to invade nodes before it is detected. Yes Maam , I have a lot of questions to ask, and I will get answers....Buzz
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Options
    Buzzie
    I want to wish you safe travel + good outcomes.
  • AnneCan said:

    Buzzie
    I want to wish you safe travel + good outcomes.

    This comment has been removed by the Moderator
  • traci43
    traci43 Member Posts: 773 Member
    Options
    hope it went well
    This post will likely get to you after the visit. Hope you got your questions answered and can think about how you want to proceed. I'll be interested to hear what the dr. had to say about post-surgery chemo. I've had 2 surgeries followed by chemo (FOLFOX) and have a third recurrance. Not looking forward to more chemo at all, but not willing to give up either. So I'm trying to find the balance there. I would suggest that you try another chemo, perhaps FOLFIRI. At least that doesn't have the awful neuropathy,but does have it's own side effects.
    You are an inspiration to us on the board, and you are in my thoughts.
  • betina61
    betina61 Member Posts: 642 Member
    Options
    Buzzard said:

    Jan...maybe a little better explanation
    I had my first surgery 3/15/08 then did adjuvant Folfox for 6 months post surgery...I re occurred in July and had my 2nd surgery (VATS) in 09/07/10...I never had any scans during that 2 year hiatus until in July my CEA went from 2 to a 9.7 then after a second blood draw increased to a 10.4. Scans were then ordered, PET before CT (haven't figured that one out yet) and it confirmed a mass on the left upper lobe in the lingula area that did indeed path to be a CRC met . Then after my VATS surgery to remove 1/2 of the lobe the nodes that were taken out showed no sign of any cancer cells and all margins were clear, and there are no signs of cancer in any of my blood tests that were run. My guess is that there were a few CRC cancer cells that escaped and burrowed deep enough in the lung tissue to escape the barrage of chemo until the treatment regimen ended and then began the process of cell division until the mass was formed...My question is this, why did it get so large and wasn't detected until 1.4 cm size. Also , if it has no node involvement and all clear margins are clear that indicates to me that there is no way that it could be in my bloodstream now or the nodes somewhere would show activity coming or going in the lymphatic system, there is no indication of that either. I understand that cancer is a very tricky and deceptive disease, but I also understand that through all of this is a constant, that during my initial surgery in 2008 a lot of the nodes surrounding the area were damaged so severely that it wasn't a 100% that all nodes were clear even though the margins were so that tells me where the met cell came from, all now I have to worry about is when and where the next one that burrowed itself up during the initial barrage will rear itself and if a second chemo treatment regimen may be warranted and if so will it do any better than the first one did. I understand that the initial Folfox most likely killed a lot of stray cells and for that I am thankful, I am just wondering if a second one is necessary when I think a yearly regimen of scans would do just as good if not better than preventative chemo.....


    In my opinion if my Onc were to tell me that a PET doesn't show anything of importance until it gets to be a certain size I would suggest 2 things, (1) to ask her again and see if she made the same statement...(2) if she did answer with the same outcome then I would tell her thanks but gotta go....

    We have through discussion in here know for a fact that CEA is not a clear cut indicator for everyone...My tumor was 1.4 cm (about 3/4 ") before my CEA started to elevate so that negates that theory.....also a PET scan is a nuclear imaging scan that is designed to light up miniscule cells that feed faster than a normal cell would on a fructose(sugar based) imaging injectable liquid...A CAT scan shows more mass or tumor growths and then the PET scan shows the mass along with other miniscule cells of activity to show widespread, or specific locales of smaller cell activity in the system..They can then match the two to determine the best possible route to take in the treatment or removal of the tumor, growth, mass, or progression of the cancerous cells and to what extent they are invading...

    QUOTE...."For some reason my onc seems to think that PET scans don't show anything of importance until met is at least 2 to 2.5cm." END QUOTE....
    Thats approx 1 1/2" in diameter. I would think that a PET would most likely show it at its initial birthing.....and mets sometimes are very small nodules hidden by liver or lobe and not seen or found until the organ is actually manually manipulated and sometimes then others are found that weren't present when scanned or the scan missed it. I would gather a list of questions that were relative to your own treatment and health and ask away to see what type of answers I got and double check them with others. You need to trust your medical team 100%.....I will have several questions when I meet with my Onc the 12th of this month, one of which will be the reasoning for no scans at certain intervals, he will most likely tell me that my CEA didn't make a scan relevant, if he makes that statement then I will inform him that from now on scans will be relevant to assure that a 3/4" tumor doesn't get a headstart and a chance to invade nodes before it is detected. Yes Maam , I have a lot of questions to ask, and I will get answers....Buzz

    I know how you feel!
    You want to be sure that you take the right decision, and I am sure God will guide you and help you with this. Once you have chosen the way to go,you will then relax knowing that you have chosen the right path.
    Praying for you Clift.
  • lesvanb
    lesvanb Member Posts: 905
    Options
    Buzzard said:

    Jan...maybe a little better explanation
    I had my first surgery 3/15/08 then did adjuvant Folfox for 6 months post surgery...I re occurred in July and had my 2nd surgery (VATS) in 09/07/10...I never had any scans during that 2 year hiatus until in July my CEA went from 2 to a 9.7 then after a second blood draw increased to a 10.4. Scans were then ordered, PET before CT (haven't figured that one out yet) and it confirmed a mass on the left upper lobe in the lingula area that did indeed path to be a CRC met . Then after my VATS surgery to remove 1/2 of the lobe the nodes that were taken out showed no sign of any cancer cells and all margins were clear, and there are no signs of cancer in any of my blood tests that were run. My guess is that there were a few CRC cancer cells that escaped and burrowed deep enough in the lung tissue to escape the barrage of chemo until the treatment regimen ended and then began the process of cell division until the mass was formed...My question is this, why did it get so large and wasn't detected until 1.4 cm size. Also , if it has no node involvement and all clear margins are clear that indicates to me that there is no way that it could be in my bloodstream now or the nodes somewhere would show activity coming or going in the lymphatic system, there is no indication of that either. I understand that cancer is a very tricky and deceptive disease, but I also understand that through all of this is a constant, that during my initial surgery in 2008 a lot of the nodes surrounding the area were damaged so severely that it wasn't a 100% that all nodes were clear even though the margins were so that tells me where the met cell came from, all now I have to worry about is when and where the next one that burrowed itself up during the initial barrage will rear itself and if a second chemo treatment regimen may be warranted and if so will it do any better than the first one did. I understand that the initial Folfox most likely killed a lot of stray cells and for that I am thankful, I am just wondering if a second one is necessary when I think a yearly regimen of scans would do just as good if not better than preventative chemo.....


    In my opinion if my Onc were to tell me that a PET doesn't show anything of importance until it gets to be a certain size I would suggest 2 things, (1) to ask her again and see if she made the same statement...(2) if she did answer with the same outcome then I would tell her thanks but gotta go....

    We have through discussion in here know for a fact that CEA is not a clear cut indicator for everyone...My tumor was 1.4 cm (about 3/4 ") before my CEA started to elevate so that negates that theory.....also a PET scan is a nuclear imaging scan that is designed to light up miniscule cells that feed faster than a normal cell would on a fructose(sugar based) imaging injectable liquid...A CAT scan shows more mass or tumor growths and then the PET scan shows the mass along with other miniscule cells of activity to show widespread, or specific locales of smaller cell activity in the system..They can then match the two to determine the best possible route to take in the treatment or removal of the tumor, growth, mass, or progression of the cancerous cells and to what extent they are invading...

    QUOTE...."For some reason my onc seems to think that PET scans don't show anything of importance until met is at least 2 to 2.5cm." END QUOTE....
    Thats approx 1 1/2" in diameter. I would think that a PET would most likely show it at its initial birthing.....and mets sometimes are very small nodules hidden by liver or lobe and not seen or found until the organ is actually manually manipulated and sometimes then others are found that weren't present when scanned or the scan missed it. I would gather a list of questions that were relative to your own treatment and health and ask away to see what type of answers I got and double check them with others. You need to trust your medical team 100%.....I will have several questions when I meet with my Onc the 12th of this month, one of which will be the reasoning for no scans at certain intervals, he will most likely tell me that my CEA didn't make a scan relevant, if he makes that statement then I will inform him that from now on scans will be relevant to assure that a 3/4" tumor doesn't get a headstart and a chance to invade nodes before it is detected. Yes Maam , I have a lot of questions to ask, and I will get answers....Buzz

    Clift
    this will also get to you after your appointment....

    I've never had lymph node involvement and the liver met I had at diagnosis actually shrank a bit from the time of dx May 08 until it was removed Oct 08. Only had neoadjuvant in June/July Zeloda 5 weeks and 4 tx of oxi because of infection that put me in the hsptl during radiation tx. This time I have 2 metabolically active nodules under 1 cm in lungs that aren't growing fast at all but are increasing with uptake each scan now to 4 and 6 (one PET/CT scan in June 10 and Sept 10).CEA has not budged in the 6 months from .09 and should be an indicator though doc is now waffling about that. However from what I've read CEA sometimes does NOT rise with crc lung mets. My situation made me an ideal candidate according to doc who is head of clinical trial from UKansas for IV Vitamin C therapy because it specifically addresses metabolic uptake in suspect nodules. I am aware though that chemo might be just around the corner because the nodules are bilateral and one lymph node had grown (under 1 cm) but is now stable. When I first was dx I remember the radiation oncologist saying that yes cancer can spread only in the blood and not show in the the lymph. For me her statement is proving true.

    love to you, Leslie
  • z
    z Member Posts: 1,414 Member
    Options
    traci43 said:

    hope it went well
    This post will likely get to you after the visit. Hope you got your questions answered and can think about how you want to proceed. I'll be interested to hear what the dr. had to say about post-surgery chemo. I've had 2 surgeries followed by chemo (FOLFOX) and have a third recurrance. Not looking forward to more chemo at all, but not willing to give up either. So I'm trying to find the balance there. I would suggest that you try another chemo, perhaps FOLFIRI. At least that doesn't have the awful neuropathy,but does have it's own side effects.
    You are an inspiration to us on the board, and you are in my thoughts.

    Clift
    Hi Clift,

    I just wanted to mention that the 7mm nodule in my lower right lung lobe was picked up on the pet/ct I had on 5-4-10, and then on the follow up ct scan on 8-11 it had shown that it had grown to 11mms. When the nodule was removed it was 11mms, so this proves to me that the pet/ct did find the 7mm nodule. When I had the pet, the SUV uptake on the nodule was .08,and the lung tissue adjacent to the nodule had an SUV uptake of .05. My oncologists chose to moniter the nodule with the follow up ct on 8-11 which showed that the nodule had grown to 11mms. Now if the pet scan had initially shown a SUV of 2.5 or more then malignancy would be highly suspected and because the SUV was so low thats why it was recommended for a follow up ct to see if it grew. Its amazing to me that a scan can pick up such a small nodule. What ever you chose to do, I hope your drs will give you pet/cts for follow up to moniter for any irregularities. I know like you said the CEA markers are not always accurate in monitering the indication of malignacies. And after what has proven to be a good scan to pick up irregularities within my body, I now trust the pet/ct scan. I wish you all the best. Lori
  • dorookie
    dorookie Member Posts: 1,731 Member
    Options
    Buzz
    Well I was in your shoes, had a lung met, had it removed, and my ONC didnt give me an option about doing chemo or not, he said I was going to do it. I knew that from the start even prior to getting the tumor out of my lung. Now I dont mean to sound like I didnt have a choice as we all do, I am just saying my ONC from the start wanted chemo to be a part of fighting this reoccurance. I did have the option of what kind of chemo, I was lucky enough to get to have the Xeloda, and I say lucky because for ME, it was so much easier than the 5FU IV type. I didnt get nearly as sick, still had the neuropathy problems (have them to this day), but its been 15 months since I finished and knock on wood I am still clear.

    Well I sure hope your appointment went well and you got your answers, and a good plan of attack....keep us posted...

    HUGS
    Beth
  • Aud
    Aud Member Posts: 479 Member
    Options
    Clift
    just want to tell you I'm thinking about you and holding you and your doctors in the Light for wisdom...and also continued healing and hope for you.
    ~Aud
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Options
    Buzz
    Thanks for the update. That was a full day I am sure. I think you are smart to get a 2nd opinion, regardless of how much you like your onc. You are what is important. I like your last paragraph; sometimes I say that to mysel, "I am glad I am not stage 5"! I am so glad you enjoyed your time off. I know you have a lot on your mind; I am thinking of you + wishing for only good for you!
  • chicoturner
    chicoturner Member Posts: 282
    Options
    Hi Buzz...just read your
    Hi Buzz...just read your update. You sound like you are just trying to digest everything said, thought and speculated on! My guess is it will take you a few days to regroup and then on you go. You are such an inspiration to me and I really appreciate all that you share. I know right now I am kind of in the wait and see mode, waiting for a trial and feeling a bit scared, but still ready to fight! You are in my thoughts and prayers as you sort through all of this. Best to you. Jean
  • NWGirl
    NWGirl Member Posts: 122 Member
    Options
    2nd Opinion For Sure
    I don't post here often; but read occasionally. I'm so sorry you are having to go through this. 2nd opinion - for sure; as you have stated - in the best interest of you and your family. The world is a better place with you in it - and will be better the longer you're here. Wishing you all the best.
  • lisa42
    lisa42 Member Posts: 3,625 Member
    Options
    lots of info
    Hi Clift,

    I'm just reading all this now & processing it- lots of info. Regarding "not upsetting someone in the medical field" with regards to your onc that you like but are wondering about... I went through the same thing a year and a half ago when I changed oncologists. I really, really liked my first oncologist personally- he was so nice, caring, and upbeat about everything, but it got to a point in the game where I realized my situation was getting beyond just the beginning stage IV treatment and he just didn't specialize in colorectal cancer or know enough specifics on what the latest to offer is. So I had to do what was best for me. I hemmed and hawed for awhile how to tell him, then my insurance medical group took care of that for me by changing oncology groups that they were associated with. It turned out the group they required me to change to (I was ready to fight them at first to go to the onc at UCSD where I had already consulted and was hoping to change to) turned out to be a good move. My new onc now is open to consulting w/ the onc from UCSD and anyone else. Since my insurance made me change though, I didn't ever have to tell my onc I was planning on leaving anyhow. BUT I do think he probably heard about some major concerns I had that I ended up discussing with the nurse practitioner in detail one day (he did make a few decisions that I realized later may have contributed to my first recurrence happening so quickly. Also, he never tested my CEA until I found out about it and requested it be done a year after my stage IV diagnosis, never even mentioned giving me followup chemo after my liver resection & I didn't know enough about it to know I should have had it- also had me take Erbitux 2 months before my consulting onc from UCSD asked me if I had been KRAS tested- "no, what's that?" Then it all began & I found out I was kras mutated & should never have had the Erbitux- there were a few other red flag things that happened over the 22 months he was my onc, as well. The insurance group made the change because they apparently had a few patients complain about "mistakes". Hmmm... Anyhow, you gotta do what you gotta do- your number one concern is YOU, not whether you upset your oncologist. Even if he hasn't made any blatant mistakes, you just gotta go with that instinct you have about it.
    I have a new attitude with my current onc- I am always sweet and polite, but he's quite aware that I research everything and that I ask questions, listen to what he has to say, but I am in charge of my own care- sometimes I completely agree with him and sometimes I don't & I'm never afraid to politely but confidently point out concerns and other options to him & I'm always bringing in things I've printed off the internet about new treatments I've heard of, supplements, etc. I don't know what he really thinks, but he seems to act like he respects me for it too, which I'm of course glad for.

    I know you're having to process a lot of information and hearing that you're officially stage IV certainly is a tough one to swallow. Honestly, thinking of going through chemo again after having had Folfox is enough to scare anyone off from wanting to do chemo again. But, I've done a lot of different chemos in the past three years and NOTHING has come close to how bad the Folfox was with that nasty oxaliplatin! Nothing you will take in the future will seem as difficult to go through (my opinion, anyhow). The "next" chemo treatment usually given after Folfox is Folfiri (irinotecan, leucovorin, 5FU, but sometimes it's just irinotecan and Xeloda now with some oncs). It's not fun, but it's really much easier than the oxy. I'm sure you've seen the effects from it described on the board before. Other than becoming tired and maybe having thinning hair, there really aren't many aftereffects with the irinotecan (also called Camptosar or CPT-11) like there was with the oxaliplatin. NO numbness, tingles, cold oversensitivity, or any of that! I also found that I had much more brain fog with Folfox than any other chemo I've taken since- a really big difference, actually. So, I know chemo doesn't sound great, but if you have to take it, know that it really will be much more easygoing than it was before.

    It's going to be ok, like you said.

    You take care & I'm praying for you right now-
    Lisa
  • geotina
    geotina Member Posts: 2,111 Member
    Options
    Buzz:
    I have no words of wisdom for you, it is a decision only you can make, after digesting all the opinions of your medical team .

    I am convinced though, as you indicated, that those pesky cancer cells burrow in sleeping someplace just waiting for the right conditions to wake them up. Sometimes they never wake up which we all hope and sometimes they do. A good work friend of George's is 5 1/2 years out from fairly early stage breast cancer and guess what, it showed up again, in her stomach. Not stomach cancer but metastatic breast cancer. Her attitude is well I got 5 1/2 years the first time and if she gets another 5 1/2 years, she will take it and do the necessary.

    Take care - Tina