Please comment on my options

Dxed
Dxed Member Posts: 79

 

Please comment on my options

 

Today, Saturday (01.05.13) I have my clinic visit after surgery. My surgeon was happy with the healing process. He unpinned the incision and sent me to the oncologist. With all the tests, histopathology, and reports, he said my staging is certainly stage IIA (T3N0M0).LVI indeterminate. He tried to explain this LVI to me in layman English. He said they examined up to 18 lymph nodes beyond the infected area and found them all clean. It seems this LVI has to do with layers of the removed piece. In terms of treatment, the onc told me I have two options:

1. To remain under biweekly observation and do blood work every once in a reasonable while.

2. To be on a mild chemo (tablets by mouth); he mentioned (Zelda? Xolda? sp) and periodic blood work.

 

I asked how soon I should start treatment; he said they can schedule me to start in two weeks (if I opt for the second option).

 

No one talked about diet; supplements, or anything of the sort. Some people on this board mentioned something about Citemidine(?) and I have no idea what that is.

 

I need your comments on any aspect of my situation.

 

Thank you

 

Sander

«1

Comments

  • thxmiker
    thxmiker Member Posts: 1,278
    Risks

    Welcome to the Boartd!  Sending Good thoughts and Prayers for a good solution. 

     

    I would find out the type of tumor you had, and then you can weigh the Chemo Risks or not to Chemo. There are good diet and lifestyle choices for low risk of occurrence. 

     

    I chose Chemo, because I have a high risk cancer. I also added juicing, more exercise, Vitamin D, B, Fish Oil, Probiotics, and Milk Thistle, and the Zone Diet to my life style. My wife and I ended up losing weight and getting physically fit. We have more energy.  We took a few mile walk last night and saw 2 elk during our walk. One has to love that.

     

    I would get more information, so you can make a good decision for you. It is your decision, and not your Oncologists. He is there to guide you to make a good choice. There are many junk "Cancer Vitamins" also, they are there to take your money.  

     

    Best Always,  mike

     

    PS  The vitamins I am taking is what Dr. Lenz at USC recomended. I was doing them already and added Milk Thistle per Lenz's recomendations. 

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Hi Sander

    A quick look at the internet was of little help for your question.  It seems that there is a divided opinion regarding chemo or not for stage 2.

    Did you ask your oncologist why do chemo if there is no sign of disease in lymph nodes or any other organ?  Is the chemo to be considered an "insurance policy" just in case there are still cells there but to small to detect?

    You mention bi-weekly observation with blood work once in a while.  I am not sure what the "observation" part would be since any issues would be internal and not visable to external observation.  If chosing this option, I would want to include a CT or PET scan about 6 months out to "see" if there are any areas of concern.

    I personally feel that the chemo option is best put aside until needed. 

    As always, it is the patient who must feel comfortable with the choice based on the best information available.  Perhaps a second opinion would help you make that decision.

    Wishing you the best outcome,

    Marie who loves kitties

  • Chelsea71
    Chelsea71 Member Posts: 1,169
    I would recommend to hold
    I would recommend to hold off on the chemo. Insist on frequent blood tests and scans. Look into diet/lifestyle options. Research TCM, cimetidine, modified citrus pectin etc... Big decision though. Do your homework. It's easy for me to give advise, but if it were me I honestly don't know what I would do.

    Good luck!

    Chelsea
  • John23
    John23 Member Posts: 2,122
    Options?

    All chemotherapy chemicals are known to be carcinogenic.

    No present chemotherapy chemical is known to target and kill individual
    cancer cells specifically; chemo was designed to address tumors.

    The oncologist is giving you an option to "wait and see", so why
    not take that option?

    I would look into the many "alternatives", including "juicing", since
    building ones' immune system may do more for better health and
    chances for survival, than any chemical around.

    Your oncologist was honest enough to give you an option to
    expensive and often useless therapy........ I would take that seriously!

    Best wishes,

    John

     

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member

    Hi Sander

    A quick look at the internet was of little help for your question.  It seems that there is a divided opinion regarding chemo or not for stage 2.

    Did you ask your oncologist why do chemo if there is no sign of disease in lymph nodes or any other organ?  Is the chemo to be considered an "insurance policy" just in case there are still cells there but to small to detect?

    You mention bi-weekly observation with blood work once in a while.  I am not sure what the "observation" part would be since any issues would be internal and not visable to external observation.  If chosing this option, I would want to include a CT or PET scan about 6 months out to "see" if there are any areas of concern.

    I personally feel that the chemo option is best put aside until needed. 

    As always, it is the patient who must feel comfortable with the choice based on the best information available.  Perhaps a second opinion would help you make that decision.

    Wishing you the best outcome,

    Marie who loves kitties

    Follow Up Treatment

    My radiologist told me that the panel of 12 had all but one decided against follow up treatment for me, but one doctor held out and talked to my radiologist and said there was one patient that didn't take the "mop up chemo" and got it back fast and furious and my radiologist talked to my oncologist and surgeon and they all decided that mop up chemo was the best option.  That is something that wasn't what was in my plans, but did it. I'm glad that it's behind me, but it wasn't easy.  They all gave me the option to do it or not, but when my radiologist told me what the one doctor said, it made me feel like he was looking out for me.  Every doctor is different and the option to do it is every patient's alone.  Some have never done extra treatment and are doing fine.  It's just one's decision on a personal level.

    Kim

  • Dxed
    Dxed Member Posts: 79
    John23 said:

    Options?

    All chemotherapy chemicals are known to be carcinogenic.

    No present chemotherapy chemical is known to target and kill individual
    cancer cells specifically; chemo was designed to address tumors.

    The oncologist is giving you an option to "wait and see", so why
    not take that option?

    I would look into the many "alternatives", including "juicing", since
    building ones' immune system may do more for better health and
    chances for survival, than any chemical around.

    Your oncologist was honest enough to give you an option to
    expensive and often useless therapy........ I would take that seriously!

    Best wishes,

    John

     

    Thanks John

     

    Thank you for your input. I understand your position on Chemo (having read your posts and blog). I fully agree with you. I did tell my onc that I'd rather hold out for at least 4 weeks (before my next visit). I will have blood tests 2 days before the visit and the results will be available on the day of my visit. During this period I will be seeking a professional second opinion and exploring other alternative options. Hopefully, things will be ok. Thanks again

     

    Sander

  • Dxed
    Dxed Member Posts: 79
    thxmiker said:

    Risks

    Welcome to the Boartd!  Sending Good thoughts and Prayers for a good solution. 

     

    I would find out the type of tumor you had, and then you can weigh the Chemo Risks or not to Chemo. There are good diet and lifestyle choices for low risk of occurrence. 

     

    I chose Chemo, because I have a high risk cancer. I also added juicing, more exercise, Vitamin D, B, Fish Oil, Probiotics, and Milk Thistle, and the Zone Diet to my life style. My wife and I ended up losing weight and getting physically fit. We have more energy.  We took a few mile walk last night and saw 2 elk during our walk. One has to love that.

     

    I would get more information, so you can make a good decision for you. It is your decision, and not your Oncologists. He is there to guide you to make a good choice. There are many junk "Cancer Vitamins" also, they are there to take your money.  

     

    Best Always,  mike

     

    PS  The vitamins I am taking is what Dr. Lenz at USC recomended. I was doing them already and added Milk Thistle per Lenz's recomendations. 

    Hi Mike

    I've been following your posts on your visit with Dr. Lenz and his suggestions. I am glad he gave that boosting reception. Your diet and exercise plans make a lot of sense.

     

    I wish you would elaborate a bit on Milk Thistle. I know it is a plant. But when I read about it, it looks like now it is regularized as a tablet. I could very well be wrong. the wiki has a good article about it (citing references as recent as December 2012). Would you please say something as to where one gets it and whether or not it is a tablet. The wiki article also talks about proper dose. If you anything on that please add it in your response. Excuse and forgive my ignorance.

     

    Thank you

     

    Sander

  • Dxed
    Dxed Member Posts: 79

    Hi Sander

    A quick look at the internet was of little help for your question.  It seems that there is a divided opinion regarding chemo or not for stage 2.

    Did you ask your oncologist why do chemo if there is no sign of disease in lymph nodes or any other organ?  Is the chemo to be considered an "insurance policy" just in case there are still cells there but to small to detect?

    You mention bi-weekly observation with blood work once in a while.  I am not sure what the "observation" part would be since any issues would be internal and not visable to external observation.  If chosing this option, I would want to include a CT or PET scan about 6 months out to "see" if there are any areas of concern.

    I personally feel that the chemo option is best put aside until needed. 

    As always, it is the patient who must feel comfortable with the choice based on the best information available.  Perhaps a second opinion would help you make that decision.

    Wishing you the best outcome,

    Marie who loves kitties

    Thank you Marie

     

    I appreciate your suggestions (the insistence on CT or/and PET must be part of my follow up anyway). The chemo suggestion was something of an "insurance policy," as you put it.  He said there is no indication now for doing Chemo, but said certain experts suggest it in case there are loose undetected cells running around. However, he was all optimistic about my situation. I sensed he was a bit reluctant on the Chemo, but was careful not to sway my decision any which way.

     

    A second opinion is most certain, and will be doing that soon before my next meeting with my onc. He in fact encouraged me to consult whoever I wish to consult.

     

    Thank you Marie for your concern

     

    Sander

  • Dxed
    Dxed Member Posts: 79

    Follow Up Treatment

    My radiologist told me that the panel of 12 had all but one decided against follow up treatment for me, but one doctor held out and talked to my radiologist and said there was one patient that didn't take the "mop up chemo" and got it back fast and furious and my radiologist talked to my oncologist and surgeon and they all decided that mop up chemo was the best option.  That is something that wasn't what was in my plans, but did it. I'm glad that it's behind me, but it wasn't easy.  They all gave me the option to do it or not, but when my radiologist told me what the one doctor said, it made me feel like he was looking out for me.  Every doctor is different and the option to do it is every patient's alone.  Some have never done extra treatment and are doing fine.  It's just one's decision on a personal level.

    Kim

    Hi Kim

     

    Thank you for sharing your case and choice; it must have been an agonizing time for your decision. I'm happy for you that you did it. I also admire your uncompromising resolution in taking decisions. i will be looking for a second opinion soon, and weigh all alternatives. As of this moment, I am still for the wait. having said that, to be honest, I always have that "what if" in the back of my mind.

     

    Thank you Kim

    Sander

  • Dxed
    Dxed Member Posts: 79
    Chelsea71 said:

    I would recommend to hold
    I would recommend to hold off on the chemo. Insist on frequent blood tests and scans. Look into diet/lifestyle options. Research TCM, cimetidine, modified citrus pectin etc... Big decision though. Do your homework. It's easy for me to give advise, but if it were me I honestly don't know what I would do.

    Good luck!

    Chelsea

    Chelsea thank you

     

    I doubt it is easy to give an advice. You've taken the time to think it through, and you've been concerned as to what to say. All of that is not that easy. It is certainly laced with care and honest intention to help. That to me is more than enough. And thank you for all that advice to hold off on chemo. Most people try not to take a stand because they would not want to feel they are swaying one's decision, and that is understandable. Be sure, the final decision will be my own after weighing all variables. Thank you again

     

    Sander

  • steved
    steved Member Posts: 834
    Grey area

    The role of chemo in stage two is a grey area and the benefits if present are small. However, the cost is fairly small too with xeloda being a generally well tolerated rug that is convenient to take. One factor to consider is how you as anindividual would respond of the cancer came back and yoahead turned down the chemo. It is about thinking 'I did everything reasonable I could to fight this disease'. Thepsychological impact ofthese decisions is important to consider.

     

    Justanother dimension to add to your dilemma sorry. Ultimately the decision is yours but I can tell it will be a well informed decision and you are doing the right thing tdevelop lop your knowledge at this stage,

     

    Steve

  • Dxed
    Dxed Member Posts: 79
    steved said:

    Grey area

    The role of chemo in stage two is a grey area and the benefits if present are small. However, the cost is fairly small too with xeloda being a generally well tolerated rug that is convenient to take. One factor to consider is how you as anindividual would respond of the cancer came back and yoahead turned down the chemo. It is about thinking 'I did everything reasonable I could to fight this disease'. Thepsychological impact ofthese decisions is important to consider.

     

    Justanother dimension to add to your dilemma sorry. Ultimately the decision is yours but I can tell it will be a well informed decision and you are doing the right thing tdevelop lop your knowledge at this stage,

     

    Steve

    Hi Steve

     

    Thank you Steve for your in put. It is a dilemma. and I have to put down the ground to accept whatever results I have to face in the future. I am most certain (that is how I now think) that cancer will return. It first grew and I cannot see any reason why it should not regrow back sometime in the future. I have no knowledge how it forms at first, but there must be some defect that contributed to its inception. That defect seems to be untreatable. At least I have 4 weeks to make up my mind. Two of the four were decided by the oncologist himself (he said we cannot start xeloda before two weeks) and the other two I asked for if possible and he said that is fine since that will be within the time window he is looking for to have blood tests. During this time I am putting together a diet plan and excersises and taking my case to other professionals for a second and perhas third opinions.

     

    As for xeloda, the onclogist said as things stand now per my case he would be advising nothing other than this kind of medication.

     

    Thanks again

     

    Sander

  • Chelsea71
    Chelsea71 Member Posts: 1,169
    Dxed said:

    Hi Steve

     

    Thank you Steve for your in put. It is a dilemma. and I have to put down the ground to accept whatever results I have to face in the future. I am most certain (that is how I now think) that cancer will return. It first grew and I cannot see any reason why it should not regrow back sometime in the future. I have no knowledge how it forms at first, but there must be some defect that contributed to its inception. That defect seems to be untreatable. At least I have 4 weeks to make up my mind. Two of the four were decided by the oncologist himself (he said we cannot start xeloda before two weeks) and the other two I asked for if possible and he said that is fine since that will be within the time window he is looking for to have blood tests. During this time I am putting together a diet plan and excersises and taking my case to other professionals for a second and perhas third opinions.

     

    As for xeloda, the onclogist said as things stand now per my case he would be advising nothing other than this kind of medication.

     

    Thanks again

     

    Sander

    A man I know who is in his
    A man I know who is in his seventies has finished taking oral Xeloda for cc. He has not noticed any side effects. I think like Steve said, it's quite tolerable.

    Chelsea
  • Dxed
    Dxed Member Posts: 79
    Chelsea71 said:

    A man I know who is in his
    A man I know who is in his seventies has finished taking oral Xeloda for cc. He has not noticed any side effects. I think like Steve said, it's quite tolerable.

    Chelsea

    Thanks again Chelsea

     

    Thank you for bringing up this actual experience. In fact my oncologist said something similar to what Steve and you have confirmed. He said it is highly tolerable and has few side effects (depending on one's general health). He was a bit concerned, however, about the time of the surgery to start it (If I were to opt for Xeloda). He suggested we wait for two more weeks before putting on this medication. And did not see a problem with 4 weeks (a period I asked for) before I make up my mind.

     

    Thank you once more

     

    Sander

  • PhillieG
    PhillieG Member Posts: 4,866
    Same Planet, Different Opinions...

    For starters:

    • Not all chemo is carcinogenic.
    • Current targeted therapies ARE effective in many cases (obviously not all cases as there is nothing that is 100% effective 100% of the time)
    • Waiting to see is fine if you want to deal with cancer that's been given the chance to take hold. Being pro-active is an option too.
    • Diet is important, it's well worth looking into.
    • Don't believe everything people post on here (including me). It seems that 90% are people's opinions. It's very easy to get into pissing contests on here, don't waste your time. If something sounds absurd, look into it yourself.
    • Remember that what "cures" one of us might not cure others. This holds true for chemo, diet, TCM, rubbing guava juice on your scalp, etc...

    The choice is yours. I know people tend to want to make the Right Choice but there isn't one. It's what's Right for YOU. The best I believe that you can do is to gather information from here and other sources, and weigh it and see what you're comfortable with. 

    -phil

  • thxmiker
    thxmiker Member Posts: 1,278
    PhillieG said:

    Same Planet, Different Opinions...

    For starters:

    • Not all chemo is carcinogenic.
    • Current targeted therapies ARE effective in many cases (obviously not all cases as there is nothing that is 100% effective 100% of the time)
    • Waiting to see is fine if you want to deal with cancer that's been given the chance to take hold. Being pro-active is an option too.
    • Diet is important, it's well worth looking into.
    • Don't believe everything people post on here (including me). It seems that 90% are people's opinions. It's very easy to get into pissing contests on here, don't waste your time. If something sounds absurd, look into it yourself.
    • Remember that what "cures" one of us might not cure others. This holds true for chemo, diet, TCM, rubbing guava juice on your scalp, etc...

    The choice is yours. I know people tend to want to make the Right Choice but there isn't one. It's what's Right for YOU. The best I believe that you can do is to gather information from here and other sources, and weigh it and see what you're comfortable with. 

    -phil

    Milk Thistle Tabs

    I also agree with Phil.  (Don't even get me started on Guava juice on the scalp....  lol)  

     

    There are many types of cancer and many types of Chemo. Chemo Drugs are effective on many cancers, but not all.  Everyone reacts a little differently to each regimine, be it exercise, diet, suplements, or chemo. My attitude is to make my body as strong as posible to fight cancer. Mental strength is needed also. 

     

    Back to the reason I posted:  Look up Milk Thistle Tabs and resources are readily available.   (Walgreens, CVS, Walmart and Target all have Milk Thistle Tabs.  If your local store does not have it, one can order online and have it delivered to the store for no cost shipping at all mentioned stores.)

     

    Best Always, mike

  • Dxed
    Dxed Member Posts: 79
    PhillieG said:

    Same Planet, Different Opinions...

    For starters:

    • Not all chemo is carcinogenic.
    • Current targeted therapies ARE effective in many cases (obviously not all cases as there is nothing that is 100% effective 100% of the time)
    • Waiting to see is fine if you want to deal with cancer that's been given the chance to take hold. Being pro-active is an option too.
    • Diet is important, it's well worth looking into.
    • Don't believe everything people post on here (including me). It seems that 90% are people's opinions. It's very easy to get into pissing contests on here, don't waste your time. If something sounds absurd, look into it yourself.
    • Remember that what "cures" one of us might not cure others. This holds true for chemo, diet, TCM, rubbing guava juice on your scalp, etc...

    The choice is yours. I know people tend to want to make the Right Choice but there isn't one. It's what's Right for YOU. The best I believe that you can do is to gather information from here and other sources, and weigh it and see what you're comfortable with. 

    -phil

    Hi Phil

     

    Very sound advice; thank you. Novice to this field (like most if not all newbies), I appreciate all the inputs I have received so far. Many posters have made it abundantly clear that each and everyone of us is unique, and ultimately any decision I would take will essentially be my own. I gathered that much since I first joined this wonderful board. Your take has put things in perspective, and message came through loud and clear. I appreciate how you summed up the whole issue. In fact I am gathering as much infos as I can, and been researching every idea thrown in. The past 10 hours or so I spent reading and listening to videos on Vitamin C IV (which I find to be too good to be true. I know it would help. Not sure though if it ever is as good as advocates make it look).

     

    Thanks again

     

    Sander

  • Dxed
    Dxed Member Posts: 79
    thxmiker said:

    Milk Thistle Tabs

    I also agree with Phil.  (Don't even get me started on Guava juice on the scalp....  lol)  

     

    There are many types of cancer and many types of Chemo. Chemo Drugs are effective on many cancers, but not all.  Everyone reacts a little differently to each regimine, be it exercise, diet, suplements, or chemo. My attitude is to make my body as strong as posible to fight cancer. Mental strength is needed also. 

     

    Back to the reason I posted:  Look up Milk Thistle Tabs and resources are readily available.   (Walgreens, CVS, Walmart and Target all have Milk Thistle Tabs.  If your local store does not have it, one can order online and have it delivered to the store for no cost shipping at all mentioned stores.)

     

    Best Always, mike

    Hello Mike

     

    Thanks for your response. I visited a natural/herbal store and found it there. Still not sure whether or not I should use it. I have to read a bit first and ask a nutritionist.

     

    Thank you again

     

    Sander

  • PhillieG
    PhillieG Member Posts: 4,866
    Dxed said:

    Hi Phil

     

    Very sound advice; thank you. Novice to this field (like most if not all newbies), I appreciate all the inputs I have received so far. Many posters have made it abundantly clear that each and everyone of us is unique, and ultimately any decision I would take will essentially be my own. I gathered that much since I first joined this wonderful board. Your take has put things in perspective, and message came through loud and clear. I appreciate how you summed up the whole issue. In fact I am gathering as much infos as I can, and been researching every idea thrown in. The past 10 hours or so I spent reading and listening to videos on Vitamin C IV (which I find to be too good to be true. I know it would help. Not sure though if it ever is as good as advocates make it look).

     

    Thanks again

     

    Sander

    Sander

    Remember, you're unique...just like everyone else :-)

    It can be overwhelming to say the least and I think we all look for some guidance based on people who have been there or are still there. This site has been helpful to me and many others.

  • Dxed
    Dxed Member Posts: 79
    PhillieG said:

    Sander

    Remember, you're unique...just like everyone else :-)

    It can be overwhelming to say the least and I think we all look for some guidance based on people who have been there or are still there. This site has been helpful to me and many others.

    Phil, I read you page

     

     Just how oxymoronic a statement can be: "you're unique...just like everyone else :-)"! With this statement you outdid your earlier quote "other than cancer your life is perfect"! I sneeked into your INSPIRING page to understand where all this have come from!

     

    yes; it is overwhelming; and yes we look for some guidance. And YES this site is wonderful. I would not know what to have done if it were not for this board. My god, your experience is a valuable lesson to anyone.

     

    Thank you and best if luck

     

    Sander