Pathology Report - Deciding on Chemo or No Chemo

245

Comments

  • PhillieG
    PhillieG Member Posts: 4,866 Member

    I am anti chemo, my choice
    dtx 12/12/08-folfox 7x till 5/09...very healthy for my age. Chemo left me semi invalid, but went on with life till 3/11..when I got mets to liver. Onc said no chemo because it would weaken me too much for surgery. Tried liver resection 6/1/11 at a ncs hospital, liver was not viable for resection. I told onc no chemo, I was told about 6mos/year.....I am able so far to medicate issues that come, that I would not be able to do on chemo. MY choice, do not advocate this decision for anyone....too personal a decision. August 1 I have survived 14 mos without chemo.I know I will not beat this, but quality is important to me.
    I wish they had a list of everyone listing diagnosis date and death date, it is the only way we can judge. I did not know Idlehunter,but watched her journey, she was a great roll model for us all.....but I thought she had been here for years......but I just found out she started her journey in 2009....I was 2008....I was stage 111 with 3 nodes out of 30...no obvious mets. I do not have any answers, but not everyone hits the averages I hear about....if I took chemo would I be here or would I gone....sick, I Only know I would not be better, cause chemo got me three years ago... Luck to all with your decisions.. PAT

    Our Role With Choices, Care, and How We View Ourselves...
    I'm glad you're comfortable with your choice, it's what works for YOU. The same goes for how we view ourselves. One can be a Cancer Victim, or one can Have Cancer. I've noticed much has to do with a persons general outlook on life (or their fear of death) Whatever one chooses can easily rule their lives (or ruin them). Again, a personal choice...

    One thing that is sometimes overlooked is that WE often have to be our own advocates. Often we delegate that responsibility to Oncologists, Surgeons, and Doctors then if/when something goes wrong, some will point a finger at someone. Getting a good team together and making informed decisions are crucial. There is a movement by “e-Patient Dave” deBronkart who is actively engaged in opening health care information directly to patients so we can play a (bigger) role in our care. That would go for whatever choice one makes. HeII, one can even be a Informed Victim if they so choose.
    -phil
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    PhillieG said:

    Our Role With Choices, Care, and How We View Ourselves...
    I'm glad you're comfortable with your choice, it's what works for YOU. The same goes for how we view ourselves. One can be a Cancer Victim, or one can Have Cancer. I've noticed much has to do with a persons general outlook on life (or their fear of death) Whatever one chooses can easily rule their lives (or ruin them). Again, a personal choice...

    One thing that is sometimes overlooked is that WE often have to be our own advocates. Often we delegate that responsibility to Oncologists, Surgeons, and Doctors then if/when something goes wrong, some will point a finger at someone. Getting a good team together and making informed decisions are crucial. There is a movement by “e-Patient Dave” deBronkart who is actively engaged in opening health care information directly to patients so we can play a (bigger) role in our care. That would go for whatever choice one makes. HeII, one can even be a Informed Victim if they so choose.
    -phil

    Ditto
    Agree completely with your post guitar guy. You have been in treatment for a long time and you are still going strong. Nice picture.

    Kim
  • Lifeisajourney
    Lifeisajourney Member Posts: 216
    PhillieG said:

    Our Role With Choices, Care, and How We View Ourselves...
    I'm glad you're comfortable with your choice, it's what works for YOU. The same goes for how we view ourselves. One can be a Cancer Victim, or one can Have Cancer. I've noticed much has to do with a persons general outlook on life (or their fear of death) Whatever one chooses can easily rule their lives (or ruin them). Again, a personal choice...

    One thing that is sometimes overlooked is that WE often have to be our own advocates. Often we delegate that responsibility to Oncologists, Surgeons, and Doctors then if/when something goes wrong, some will point a finger at someone. Getting a good team together and making informed decisions are crucial. There is a movement by “e-Patient Dave” deBronkart who is actively engaged in opening health care information directly to patients so we can play a (bigger) role in our care. That would go for whatever choice one makes. HeII, one can even be a Informed Victim if they so choose.
    -phil

    I totally agree with you
    when this started I researched oncs,but followed what all said was protocal...after the chemo reaction and being ned I started researching/ advocating. I would not point a finger at what might have been a mistake, because I choose the professionals...I do believe choices are made based on age and other reasons......but fear should never be a reason. In a disscusion with primary, he asked if I were afraid of dying,,,,I said no, just pain. We talked of how he sometimes feels he is treating the family not really doing what the patient wants...so maybe pain is my fear, I really don't think it was...quality was my motivation. MY decision was not what my onc wanted, 14 mos later, he thinks I have made a good decesion for me....I definitely think in most cases the worst case happenings are not discussed enough...we should have a bigger role in our decision....I admit to being a little slow to start. I Personally think we are mostly all informed victims..decisons are very peronal, I feel I WOULD never say take the chemo from what i now know....it has be a personal decisons based on knowledge/researching....my survival has gotten to be a joke. My husband has a heart problem, hopefully I'LL outlast him....for my sake...now we are losing people that were healthy months ago.....life is not really our choice,,,we just need to have quality at our age....choices, choices, choices,,,,ugh..PAT
  • joemetz
    joemetz Member Posts: 493
    So worried... Try not to be
    Greetings "so worried"

    sorry you found us here... but I'm glad you're here and able to gather so many ideas, opinions and options to share with your husband and medical team.

    I love the fact that you're able quickly see that everyone has very strong opinions to share.
    This all helps you understand that you have several choices, and there most likely are no wrong choices.

    I am stage IV, and everything happened so fast to me back in November/December 2011 that I didn't really consider NOT taking the chemo. I also didn't even question my medical team... once I assembled the correct people, with the right focus and attitude. (I interviewed 3 oncologists and visited 3 cancer treatment centers). Anyway, if it were me, speaking on 9 months of experience as a patient... 24 treatments of FolFox6 with Erbitux... and two surgeries... and plan to restart chemo in 3 weeks for a maintenance program... and if I was Stage II like your husband... i WOULD take the chemo as a "clean up plan"... if my doctors recommended it.

    the side effects are difficult. I might research everything a bit more than i did... as Stage II tells me that you caught it BEFORE it has hit the liver, lungs, pelvic area or the brain... and it has NOT hit the lymph nodes... all that to me, is GREAT news.

    I understand the diet, juice and other non-chemo treatments can work, and many people have strong opinions... but personally, I went with and would go with the medical chemo first and also change my diet (which i am doing now)

    but through all of this, i am also changing my life. Enjoying each and every day more than ever before. Eating better, celebrating more and laughing more.
    no, this is not the end of life... but for me, it's a wake up call.

    good luck with your husbands decisions.... do your homework and be open to discuss, share, learn and be curious.

    all my best

    Joe
  • So Worried
    So Worried Member Posts: 111 Member
    joemetz said:

    So worried... Try not to be
    Greetings "so worried"

    sorry you found us here... but I'm glad you're here and able to gather so many ideas, opinions and options to share with your husband and medical team.

    I love the fact that you're able quickly see that everyone has very strong opinions to share.
    This all helps you understand that you have several choices, and there most likely are no wrong choices.

    I am stage IV, and everything happened so fast to me back in November/December 2011 that I didn't really consider NOT taking the chemo. I also didn't even question my medical team... once I assembled the correct people, with the right focus and attitude. (I interviewed 3 oncologists and visited 3 cancer treatment centers). Anyway, if it were me, speaking on 9 months of experience as a patient... 24 treatments of FolFox6 with Erbitux... and two surgeries... and plan to restart chemo in 3 weeks for a maintenance program... and if I was Stage II like your husband... i WOULD take the chemo as a "clean up plan"... if my doctors recommended it.

    the side effects are difficult. I might research everything a bit more than i did... as Stage II tells me that you caught it BEFORE it has hit the liver, lungs, pelvic area or the brain... and it has NOT hit the lymph nodes... all that to me, is GREAT news.

    I understand the diet, juice and other non-chemo treatments can work, and many people have strong opinions... but personally, I went with and would go with the medical chemo first and also change my diet (which i am doing now)

    but through all of this, i am also changing my life. Enjoying each and every day more than ever before. Eating better, celebrating more and laughing more.
    no, this is not the end of life... but for me, it's a wake up call.

    good luck with your husbands decisions.... do your homework and be open to discuss, share, learn and be curious.

    all my best

    Joe

    To Joe..
    I really appreciate your reply. Thank you so much. Everything is so stressful. Now I seem to have to deal with problems between the onco office and the insurance company. Won't really bore you with it, but someone is lying to me. I'll probably be on the phone for 5 hours tomorrow, so hopefully I won't have a mini nervous breakdown. I don't believe after everything we have gone through, now we have to deal with long and stupid phone calls. Good grief. Thank you so much again and I hope you are doing VERY well.
  • steved
    steved Member Posts: 834 Member
    John23 said:

    So Worried -

    Please..... Be aware that a stage does not change. A "stage one"
    cancer victim can die from metastasis and remain a "stage one".
    A "stage four" means only that they clearly see that the cancer
    had already spread.

    Please do not become complacent thinking that "stage one"
    offers a better outcome than one diagnosed as a stage four.
    It simply does not work that way, and too, too many here
    have realized that too, too late.

    If an "alternative" is chosen, do that "alternative" first. An
    "alternative" will not destroy the immune system or make the
    body too weak to fight for itself, but a harsh, toxic chemical,
    or radiation will. Once the body is made too weak, it might be
    too late to expect much from any "alternative".

    Take your time and explore all the options available, both
    mainstream western medicine and the alternatives.

    The choice is your husband's and your's. Do not rush!

    My very best to you both,

    John

    Not my understanding
    John- my understanding is that if you are stage 1 at the start and then have distal mets you move to being a stage 4 ie your staging changes as new information comes to light.

    I think it is important that info we are giving (particularly to newbies) here is accurate and I am happy for you to show me I am wrong. I worry about how confusing it is, on top of all the general sense of confusion newly diagnosed people experience, to come here and receive conflictin advise.

    steve
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    steved said:

    Not my understanding
    John- my understanding is that if you are stage 1 at the start and then have distal mets you move to being a stage 4 ie your staging changes as new information comes to light.

    I think it is important that info we are giving (particularly to newbies) here is accurate and I am happy for you to show me I am wrong. I worry about how confusing it is, on top of all the general sense of confusion newly diagnosed people experience, to come here and receive conflictin advise.

    steve

    Steve
    One can, and likely will, say cancer, is cancer, is cancer...
    Yes, cancer IS cancer. Using similar geometric logic, a paper cut is like having a 12" long knife wound. Both go through the epidermis (skin) and blood most often comes out. A paper cut left untreated could cause complications if it becomes infected. So Stage I cancer, if not taken seriously, can certainly cause plenty of harm.
    All things being equal, I'll take a paper cut...
  • RobinKaye
    RobinKaye Member Posts: 93
    steved said:

    Not my understanding
    John- my understanding is that if you are stage 1 at the start and then have distal mets you move to being a stage 4 ie your staging changes as new information comes to light.

    I think it is important that info we are giving (particularly to newbies) here is accurate and I am happy for you to show me I am wrong. I worry about how confusing it is, on top of all the general sense of confusion newly diagnosed people experience, to come here and receive conflictin advise.

    steve

    Always a Stage 1
    Steve, for statistical purposes you are always classified as the stage you were at diagnosis. So a Stage 1 will be a Stage 1 with recurrence. Technically if you were a Stage 1 at diagnosis and then have mets to the liver you are treated as a Stage 4 and for all intents and purposes you are but you will always be classified as a Stage 1.

    Robin
  • John23
    John23 Member Posts: 2,122 Member
    steved said:

    Not my understanding
    John- my understanding is that if you are stage 1 at the start and then have distal mets you move to being a stage 4 ie your staging changes as new information comes to light.

    I think it is important that info we are giving (particularly to newbies) here is accurate and I am happy for you to show me I am wrong. I worry about how confusing it is, on top of all the general sense of confusion newly diagnosed people experience, to come here and receive conflictin advise.

    steve

    Steve -
    Re:
    "my understanding is that if you are stage 1 at the start and then
    have distal mets you move to being a stage 4 ie your staging
    changes as new information comes to light."


    The NCI, along with all other cancer institutions will tell you that
    the initial staging remains the same. It's fairly simple to look up!

    Our departed friend Blake had posted the information some
    time ago, and being the doubter that I am, I researched his claims
    and findings. They were and remain to be true.

    You can be "re-staged", but it is not normally done, and not much
    medical need for it, either.

    Qualifying for Insurance or disability purposes is usually the only
    reason to be re-staged.

    Best hopes for you!

    John
  • Coppercent
    Coppercent Member Posts: 158
    steved said:

    Not my understanding
    John- my understanding is that if you are stage 1 at the start and then have distal mets you move to being a stage 4 ie your staging changes as new information comes to light.

    I think it is important that info we are giving (particularly to newbies) here is accurate and I am happy for you to show me I am wrong. I worry about how confusing it is, on top of all the general sense of confusion newly diagnosed people experience, to come here and receive conflictin advise.

    steve

    A cancer’s stage does not change
    I have always been under the understanding that the staging does not change just gets issues added to them.

    Here is a pretty good explanation from the ACS. Most of the oncologists I have talked to have explained this the same way.

    A cancer’s stage does not change

    An important point some people have trouble understanding is that the stage of a cancer does not change over time, even if the cancer progresses. A cancer that comes back or spreads is still referred to by the stage it was given when it was first found and diagnosed—information about the current extent of the cancer is added to it.

    For example, let’s say a woman was first diagnosed with stage II breast cancer and the cancer went away with treatment. But then it came back with spread to the bones. The cancer is still called a stage II breast cancer, now with recurrent disease in the bones. If the breast cancer did not respond to treatment and spread to the bones it’s called a stage II breast cancer with bone metastasis. In either case, the original stage does not change and it’s not called a stage IV breast cancer. A stage IV breast cancer refers to a cancer that has already spread to a distant part of the body when it’s first diagnosed. A person keeps the same diagnosis stage, but more information is added to the diagnosis to explain the current state of the disease.

    This is important to understand because survival statistics and information on treatment by stage for specific cancer types refer to the stage when the cancer was first diagnosed. The survival statistics related to stage II breast cancer that has recurred in the bones may not be the same as the survival statistics for stage IV breast cancer.
  • Steve Z
    Steve Z Member Posts: 51
    I've been there
    I'm almost 3 years removed from surgery. I was 2B and my Onc gave me the choice, chemo or no chemo. It's definitely a personal decision that impacts others. There is a lot of data out there, %'s and so on. For me %'s let me think the odds were in my favor, but I didn't want to wonder whether or not I did enough. I wanted to do everything I could and then move on, but again that's where I was at the time.

    I did 12 treatments of FolFox over 6 months. My side effects were tough at the time, but manageable. Most side effects can be managed by talking through them with Dr.'s and nurses. I still have some Nuraphathy in my feet. It was bad for a year, but I hardly notice it now. Again, what % of people have these side effects and which side of the % will your husband fall on. No one can tell you.

    The support of a care giver like yourself means everything, even when we are so scared we don't recognize it. There is a lot going on and talking about it helped me process it, even if I didn't want to. No one wants to do chemo so move past that questions. I thought about my reatction to different outcome scenarios, which sounds like your husband is doing also. It's a tough decision, and it's his, but you should participate. You're in my thoughts.
  • So Worried
    So Worried Member Posts: 111 Member
    Steve Z said:

    I've been there
    I'm almost 3 years removed from surgery. I was 2B and my Onc gave me the choice, chemo or no chemo. It's definitely a personal decision that impacts others. There is a lot of data out there, %'s and so on. For me %'s let me think the odds were in my favor, but I didn't want to wonder whether or not I did enough. I wanted to do everything I could and then move on, but again that's where I was at the time.

    I did 12 treatments of FolFox over 6 months. My side effects were tough at the time, but manageable. Most side effects can be managed by talking through them with Dr.'s and nurses. I still have some Nuraphathy in my feet. It was bad for a year, but I hardly notice it now. Again, what % of people have these side effects and which side of the % will your husband fall on. No one can tell you.

    The support of a care giver like yourself means everything, even when we are so scared we don't recognize it. There is a lot going on and talking about it helped me process it, even if I didn't want to. No one wants to do chemo so move past that questions. I thought about my reatction to different outcome scenarios, which sounds like your husband is doing also. It's a tough decision, and it's his, but you should participate. You're in my thoughts.

    Dear Steve...
    I've been really supportive of my hubbie. I went with him to all the testing (when he first started having problems)...the upper gi, the ct scan, the colonoscopy, the ekg, the chest x-ray and of course the surgery, I stayed all day with him. I even quit my job so I can go on every single appt. (I guess we'll be poor forever). I told him whatever he decides to do either way, I will support him 100%. I don't ramble on and on with him like I do in here :) I just smile and say everything will be ok and try to get him to eat healthy foods. I never persuaded him to do chemo or not to do chemo. It's totally his decision and I will stand by him forever. Soo....it's just really tough for me, because I am really a wimpy person and can't imagine him getting really sick, I couldn't stand to see it....I am just really stressed ever since this started, I just gripe and moan in here but not to him.. lol...

    Thank you so much for your input. It sounds as though you are doing very well. I am SO glad for you. How long ago did you finish your treatment? Also, were you able to work while doing folfox, or not really?
  • Steve Z
    Steve Z Member Posts: 51

    Dear Steve...
    I've been really supportive of my hubbie. I went with him to all the testing (when he first started having problems)...the upper gi, the ct scan, the colonoscopy, the ekg, the chest x-ray and of course the surgery, I stayed all day with him. I even quit my job so I can go on every single appt. (I guess we'll be poor forever). I told him whatever he decides to do either way, I will support him 100%. I don't ramble on and on with him like I do in here :) I just smile and say everything will be ok and try to get him to eat healthy foods. I never persuaded him to do chemo or not to do chemo. It's totally his decision and I will stand by him forever. Soo....it's just really tough for me, because I am really a wimpy person and can't imagine him getting really sick, I couldn't stand to see it....I am just really stressed ever since this started, I just gripe and moan in here but not to him.. lol...

    Thank you so much for your input. It sounds as though you are doing very well. I am SO glad for you. How long ago did you finish your treatment? Also, were you able to work while doing folfox, or not really?

    That's a lot of Support!
    Obviously you're giving him a lot of support, and I hope you feel supported as well. He's not the only one this impacts. I finished my treatments in April of 2010, and I'm doing great. I worked through 5 of the 6 months of treatment. My work was very flexible. They knew I could take the time if I wanted and they appreciated any time I put in. There were days that were tough and I wouldn't go in, usually a day or two after the pump was removed that I felt my worse. Then I would recover for a week and do it again. Toward the end I was just too tired to work. I would come home after 8 hrs and fall asleep. That's when I took the time off, because I wasn't getting any time with my family. My Onc told me that I also needed to take another month to recover. Open communication with my Dr's was a key, they have the experience and they can helped me when I experienced sideeffects. It was also good to stay informed on my own. This is a great site, but the majority of us aren't Dr's, but we have PHD's in support. To be honest I don't logon much anymore and when I do I try to stay away from my opinion and just relate my story.

    I will be thinking of you both.
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    my 2 cents
    My wife's treatment is based on Japanese papers with oral UFT, which I think has advantages for continuous low dose treatment. 300 mg UFT + PSK and 300 mg UFT + 800 mg Cimetidine have very good results with 12 mo to 24 months daily treatment for stage II and III patients. Along with modified Life Extension protocols with some extras, UFT+leucovorin+CIM+PSK has worked well even for stage IV with few side effects.

    Xeloda is the closest oral drug you can get to UFT in the US. Perhaps 1200 mg to 2000 mg of daily xeloda would roughly correspond to 300-400 mg UFT with a little leucovorin. Long term cimetidine use should be based on a positive CA19-9 stained tumor sample per Matsumoto 2002.

    We are highly integrative, globally. She has had a great quality of life and is beating the standard statistics, too.
  • Kenny H.
    Kenny H. Member Posts: 502 Member
    tanstaafl said:

    my 2 cents
    My wife's treatment is based on Japanese papers with oral UFT, which I think has advantages for continuous low dose treatment. 300 mg UFT + PSK and 300 mg UFT + 800 mg Cimetidine have very good results with 12 mo to 24 months daily treatment for stage II and III patients. Along with modified Life Extension protocols with some extras, UFT+leucovorin+CIM+PSK has worked well even for stage IV with few side effects.

    Xeloda is the closest oral drug you can get to UFT in the US. Perhaps 1200 mg to 2000 mg of daily xeloda would roughly correspond to 300-400 mg UFT with a little leucovorin. Long term cimetidine use should be based on a positive CA19-9 stained tumor sample per Matsumoto 2002.

    We are highly integrative, globally. She has had a great quality of life and is beating the standard statistics, too.

    Welcome.
    Id do what your dr recomends or get a 2nd opinion if still unclear. Its real great that NO nodes are involved. Ups survival chances tremendously.
  • jr2012
    jr2012 Member Posts: 67
    Kenny H. said:

    Welcome.
    Id do what your dr recomends or get a 2nd opinion if still unclear. Its real great that NO nodes are involved. Ups survival chances tremendously.

    I am in chemo now for Stage III and I am glad I am...

    I think most people are afraid of the side effects of chemo... I am on my 5th week right now and I have had no unbearable side effect of xeloda 2000 mg ...

    I beat the nausea with ginger paste before taking it


    Its better to get rid of all the cancer now when he is young than if it Godforbid comes back and maybe too late...

    I kept telling me before starting radiation and chemo that it is nothing but a higher dose of antibiotics and i rather be sick from treatment than sick from the disease itself.

    hope u guys make the right choice for his survival and good health.

    Hugs
    Trisha!
  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    hugs
    please do research on having chemo or not. way the pros and cons then decide together. as i was told by a cancer research scientist everyones cancer is different.
  • jr2012
    jr2012 Member Posts: 67
    Sonia32 said:

    hugs
    please do research on having chemo or not. way the pros and cons then decide together. as i was told by a cancer research scientist everyones cancer is different.

    btw I read on another thread
    btw ur husband's diagnosis came in on June 25 - mine too same day - I had colonoscopy on 22nd and confirmed on 25th.

    will finish chemo radiation next week -
  • Wenchie
    Wenchie Member Posts: 88
    I'd have the chemo
    I was diagnosed with Stage III and after surgery, I had radiation and then chemo. I've had no recurrence in the colon but due to having 1 lymph node positive, I now have metastatic disease. Even though he's Stage II with no lymph node involvement, I'd still do the radiation on the colon and the "mop-up" chemo which would most likely be Oxaliplatin which I breezed through. Yep, I'd definitely take any precautions I could to ensure every thing was outta there, gone, finis!
  • Cathleen Mary
    Cathleen Mary Member Posts: 827 Member
    Wenchie said:

    I'd have the chemo
    I was diagnosed with Stage III and after surgery, I had radiation and then chemo. I've had no recurrence in the colon but due to having 1 lymph node positive, I now have metastatic disease. Even though he's Stage II with no lymph node involvement, I'd still do the radiation on the colon and the "mop-up" chemo which would most likely be Oxaliplatin which I breezed through. Yep, I'd definitely take any precautions I could to ensure every thing was outta there, gone, finis!

    Through a different lens...

    My cancer was also stage 11a with no node involvement, clear margins, and had gone through the wall. After meeting with the tumor board, I chose no chemo. It has been three years and I am still NED. My CEA has steadily risen from 1.5 to 3.6 . I just had an endometrial biopsy and am awaiting results. I have been told that if I have endometrial cancer it is a second primary, not mets. As others have said, there is no ''one size fits all' answer. I was 60 yrs old when diagnosed and colon cancer runs in my family though I do not have Lynch syndrome. I am watched closely and have no regrets. That said, I would probably have no regrets if I had chemo either. I made the decision that I felt was best for me and my family at the time. That is all any if us can do after getting all the info we can. We live with the ambiguity of cancer no matter what.
    Best wishes...and prayers for health.

    Cathleen Mary