Feeling lost

xmomtofourx
xmomtofourx Member Posts: 44
edited March 2014 in Colorectal Cancer #1
This is my first time posting here so I hope I'm doing it right, please bare with me I'll try to make this short.

I feel like I was just totally dropped and have so many unanswered questions and fears. I liked my oncologist at first but the last couple of times I have seen him I was told what I needed to be and then rushed out, no time to even absorb what he said never mind think of questions to ask and now he has said I am done and don't need to go back to him again.

I have high stage 2B colon, it went thru the wall of my colon so although they removed it they don't know for sure if they got it all or not. The oncolgist has said that if they didn't then basically there is nothing that can be done because by the time I get any symptoms it will be to late to do anything. He suggested I didn't do chemo because it would only up my chances by maybe 2% at the most so not worth it. I'm reading here and seeing so many of you that have had your cancer come back somewhere else, how did you know? Did they just find it doing testing? Did you discover it?? I do have to go back for another colonoscopy next year but basically I'm done with everything even thou he has said I need to be watched closely, whos supposed to watch me?!?! I'm so confused, I'm only 46 and not ready to be done living for a long time.
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Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    You need another opinion
    First, I am glad you are posting here. Lots of caring helpful folks on here to share the journey with you. And don't worry about keeping posts short, write away.

    Second, you really do need another opinion about your situation. It sounds as if your onc doesn't have time for you. Time to move on.

    I have a very difficult time with his statement that 'there is nothing that can be done'! As you can read from the messages here, there are lots of things from the holisitic, TCM and traditional western medicine.

    Please, please go see someone else for a consult. If nothing else you do need monitoring so that if there is a recurrance it will be found sooner rather than later. There are lots of folks here still in there fighting after being stage 4 with one or more recurrances.

    Please stay in touch with us and let us know how things go. The folks here care for each and every person who is involved with this disease be they patient or caregiver.

    Marie who loves kitties
  • braelee2
    braelee2 Member Posts: 130
    So sorry
    You always have the right to have a second opinion . Go see another Doctor if you are not happy with what he said. I do have one question. Did he say if any lymph node were involved how many they removed and how many had cancer. From what I understand thats how they figure if you need chemo or not. Good luck and stay strong.
  • KathiM
    KathiM Member Posts: 8,028 Member
    Find another oncologist, at least for a 2nd opinion....
    I switched surgeons because I was not comfortable with my first one, even tho he was, at one point, surgical director at City of Hope...

    Ask until you are comfortable...go in prepared with your questions written down...

    Hugs, Kathi

    (I was 49 when dx'ed, given 6 months/37% survival...that was 6 years ago Thanksgiving...I'm now cancer free from not only stage III rectal cancer, but also stage II breast)
  • xmomtofourx
    xmomtofourx Member Posts: 44

    You need another opinion
    First, I am glad you are posting here. Lots of caring helpful folks on here to share the journey with you. And don't worry about keeping posts short, write away.

    Second, you really do need another opinion about your situation. It sounds as if your onc doesn't have time for you. Time to move on.

    I have a very difficult time with his statement that 'there is nothing that can be done'! As you can read from the messages here, there are lots of things from the holisitic, TCM and traditional western medicine.

    Please, please go see someone else for a consult. If nothing else you do need monitoring so that if there is a recurrance it will be found sooner rather than later. There are lots of folks here still in there fighting after being stage 4 with one or more recurrances.

    Please stay in touch with us and let us know how things go. The folks here care for each and every person who is involved with this disease be they patient or caregiver.

    Marie who loves kitties

    Thank you!
    Thank you so much for the warm welcome, this looks like a very helpful place!

    I just feel like I was just pushed off and forgotten. I am one of the very lucky ones in that they were able to remove my cancer and nothing else was needed but the way I was just rushed out and not even given a minute to think things over and ask questions just leaves me feeling at a loss for knowing what to do next. I have gone thru that before when I had my strokes so maybe thats why its bothering me so much now but I can't get rid of the feeling that this is going to come back again.

    By the way I love your kitties, I have 3 of them myself!
  • xmomtofourx
    xmomtofourx Member Posts: 44
    braelee2 said:

    So sorry
    You always have the right to have a second opinion . Go see another Doctor if you are not happy with what he said. I do have one question. Did he say if any lymph node were involved how many they removed and how many had cancer. From what I understand thats how they figure if you need chemo or not. Good luck and stay strong.

    No lymph nodes
    They tested 11 lymph nodes but none had cancer so yes that is why they said I did not need chemo.
    Thank you braelee.
  • xmomtofourx
    xmomtofourx Member Posts: 44
    KathiM said:

    Find another oncologist, at least for a 2nd opinion....
    I switched surgeons because I was not comfortable with my first one, even tho he was, at one point, surgical director at City of Hope...

    Ask until you are comfortable...go in prepared with your questions written down...

    Hugs, Kathi

    (I was 49 when dx'ed, given 6 months/37% survival...that was 6 years ago Thanksgiving...I'm now cancer free from not only stage III rectal cancer, but also stage II breast)

    How wonderful
    Kathi I'm so glad your able to say your cancer free, a diagnosis like that must have been so scary!

    How do you know what questions to ask?? My mind just does not want to work with me these last few weeks and I feel like I can't think straight anymore. I went in so prepared with that but fully expecting them to say it was Not cancer and then things just blew apart. I have a 89% survival right now but as you all know the next 5 years are going to be hard just waiting and wondering. Every little thing I feel makes me wonder could it be??
  • maglets
    maglets Member Posts: 2,576 Member

    How wonderful
    Kathi I'm so glad your able to say your cancer free, a diagnosis like that must have been so scary!

    How do you know what questions to ask?? My mind just does not want to work with me these last few weeks and I feel like I can't think straight anymore. I went in so prepared with that but fully expecting them to say it was Not cancer and then things just blew apart. I have a 89% survival right now but as you all know the next 5 years are going to be hard just waiting and wondering. Every little thing I feel makes me wonder could it be??

    I agree
    welcome! all your worries are totally and completely normal....we fuss fuss with every pain thinking....cancer for sure.....personally I have invented cancer for every possible part of my body over the last six years. Unfortunately at times it was true....it was cancer more than once. but as your journey goes on you start to live with this.

    I would definitely seek another opinion if possible....it does sound to me as if you have been dismissed. so many people here will tell you to avoid the percentages game and the survival rates....if your cancer perforated the colon maybe another onc would have a different approach.

    I have started yoga, deep breathing and relaxtion, lots of walking ....anything to calm the cancer monkey mind.

    welcome momtofour....

    maggie
  • pepebcn
    pepebcn Member Posts: 6,331 Member

    How wonderful
    Kathi I'm so glad your able to say your cancer free, a diagnosis like that must have been so scary!

    How do you know what questions to ask?? My mind just does not want to work with me these last few weeks and I feel like I can't think straight anymore. I went in so prepared with that but fully expecting them to say it was Not cancer and then things just blew apart. I have a 89% survival right now but as you all know the next 5 years are going to be hard just waiting and wondering. Every little thing I feel makes me wonder could it be??

    Stage 2 is not 3 or 4,
    First of all welcome to this board!
    As per you say you are an stage 2 ,.It's truth that many of us have hade a recurrence of our cancer ,but notice that this is relatively common
    in other stages not in your stage, many of us would like to be 2b, so don't worry about recurrence ,look for a second opinion an keep calm!
    Cheer up!
  • xmomtofourx
    xmomtofourx Member Posts: 44
    maglets said:

    I agree
    welcome! all your worries are totally and completely normal....we fuss fuss with every pain thinking....cancer for sure.....personally I have invented cancer for every possible part of my body over the last six years. Unfortunately at times it was true....it was cancer more than once. but as your journey goes on you start to live with this.

    I would definitely seek another opinion if possible....it does sound to me as if you have been dismissed. so many people here will tell you to avoid the percentages game and the survival rates....if your cancer perforated the colon maybe another onc would have a different approach.

    I have started yoga, deep breathing and relaxtion, lots of walking ....anything to calm the cancer monkey mind.

    welcome momtofour....

    maggie

    Thank you
    Thank you Maggie for the welcome and for your and everyones helpful advice!!

    I guess one thing I'm wondering is if this is *normal to just be dismissed at this point with no checkups or anything planned for the future unless something else comes up. If that is how its usually done then I'll feel better with it but I hear of so many having their levels checked periodically or CT scans and whatnot done that I guess I just want to make sure I'm not being pushed off when these things should be being done.

    How did you know it had come back?? I really don't get into all the percentages, I've proven them wrong to many times! Don't know that anyone else will tell me anything different but it may ease my mind just to know they all agree.

    Thankfully I have been able to keep a pretty positive attitude thru this all and now more than ever I need to keep that up because others are relying on me for it to help them. I have a neighbor who just found out he has lymphoma but says because of watching me hes not worried and feels he can get thru it to, it sure helps me to know I can help him.

    Yoga and walking are great ideas, I've been trying to get out and walk but its getting cooler here so I have to force myself to do that. Still recovering from 2 surgeries as well so I know the walking will do me some good.

    Thank you, its so nice to be able to talk to people that can relate and understand.

    Bonnie
  • xmomtofourx
    xmomtofourx Member Posts: 44
    pepebcn said:

    Stage 2 is not 3 or 4,
    First of all welcome to this board!
    As per you say you are an stage 2 ,.It's truth that many of us have hade a recurrence of our cancer ,but notice that this is relatively common
    in other stages not in your stage, many of us would like to be 2b, so don't worry about recurrence ,look for a second opinion an keep calm!
    Cheer up!

    Didn't know that
    Thank you pepe, that is not how things were explained to me so its really good to know and makes me feel better and less scared!!!
  • maglets
    maglets Member Posts: 2,576 Member

    Didn't know that
    Thank you pepe, that is not how things were explained to me so its really good to know and makes me feel better and less scared!!!

    where are you
    where are you Bonnie....? I am up in Canada and it is getting very cool here too....in fact I have my furnace on////

    maggie
  • xmomtofourx
    xmomtofourx Member Posts: 44
    maglets said:

    where are you
    where are you Bonnie....? I am up in Canada and it is getting very cool here too....in fact I have my furnace on////

    maggie

    Brrr
    I'm in New Hampshire and think I'm going to have to turn my furnace on soon! I've been using my oven so far to warm up the house, kids love it when mom gets cold because I start baking but its not going to work for long I'm afraid.

    How far from NH are you?? We were up near Canada this summer, its beautiful up that way.
  • maglets
    maglets Member Posts: 2,576 Member

    Brrr
    I'm in New Hampshire and think I'm going to have to turn my furnace on soon! I've been using my oven so far to warm up the house, kids love it when mom gets cold because I start baking but its not going to work for long I'm afraid.

    How far from NH are you?? We were up near Canada this summer, its beautiful up that way.

    haha
    ha another northerner....i am over in Ontario....look at my expressions page....you will see home-made bread and apple pie....same deal....get that oven fired up. We canucks actually have our Thanksgiving this weekend so the baking frenzy begins....

    mags
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Welcome Bonnie
    I am glad you posted; this is a great place to hang out when you are feeling lost, confused, sad, mad or happy.:) I agree with others that if you are not comfortable with your doctor, another opinion may help. I also agree with Pepe; if you have to have colon cancer, stage 2 is a much better place to be than where some of us are.

    Take good care!
  • xmomtofourx
    xmomtofourx Member Posts: 44
    maglets said:

    haha
    ha another northerner....i am over in Ontario....look at my expressions page....you will see home-made bread and apple pie....same deal....get that oven fired up. We canucks actually have our Thanksgiving this weekend so the baking frenzy begins....

    mags

    Mmmmm
    Yup, another northerner! Mmm, your pics look great, I haven't gotten into the baking quite as much yet this year, still trying hard to get my energy back so I have to force myself to do much still but seeing your pics is an encouragement and makes me want to get baking! Happy Thanksgiving to you!
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    Sorry you felt dismissed
    First let me welcome you to the board. There are a lot of knowledgeable people with many perspectives here that will be willing to help out.

    It seems that you feel merely dismissed by your medical provider and that this doctor was not a good fit for you. It doesn't matter who they are or what their credentials, if you are not comfortable with them they are not a good fit for you and therefore not the right doctor for you. Get another oncologist and go from there.

    It seems that you are concerned about needing chemo. Not all doctors will recommend chemo to a stage II patient after surgery. There is still much debate about this and many factors that a doctor assesses before recommending to chemo or not to chemo to a stage II patient. Some of them are: A high grade cancer, a tumor that caused obstruction, less than 12 lymph nodes removed, perforation, invasion of nearby organs, and margins that were not clear are the most common determining factors. So if you go to another doctor, these are the questions you might want to bring up. Are any of these determining factors present that might indicate that chemo is an appropriate treatment for you? Ask what are my specific cancer findings? Each of us is different and each tumor/cancer even in a particular person can be different. What is the risk/reward ratio for me if I do chemo?

    If you feel comfortable with it, get your own OR and path reports and go through them thoroughly so you can ask specific questions about what you might find disconcerting or need more explanation on. For example in my pre-op CT the radiologist noted several enlarged lymph nodes in the lower right pelvic quadrant suggestive of metastatic disease process even giving measurements on 2 of them as they were notably large yet after going through my OR and path reports I discovered that no lymph nodes were removed from that area. As there were no affected lymph nodes removed for pathology, I was staged as a IIc (T4bN0Mx) However, after discovering this information (myself) and bringing it to the doctors attention and then having it confirmed by another CT scan, I am clinically staged as a IIIc. So I have 2 staging numbers a path of IIc and a clinical of IIIc at this moment.

    Please know that there are many who would love to have that chemo/no chemo option. You must remember that chemo is a powerful toxic agent and for some has many drastic side effects. It is not a quick little treatment that you just take and go on your way, as I’m sure you can surmise just by reading some of the forums. If you do chemo will the benefit outweigh the possible side effects? I was released from the hospital after emergency surgery and still loopy from medications with a colostomy and a port and told to get straight to the nearest cancer center for chemo as opposed to anyone discussing details or options with me. They even said they would not release me unless I was ready to do that. Of course I wanted out of there after 2 weeks and smiled and said “No problem”. Being protective of myself, I first had to do extensive research and educate myself to explore all my options. If I still had cancer in me it wasn’t going anywhere and if I didn’t then there really wasn’t any problem with taking a little bit of time to do what I felt I needed to do. I was fortunate that I personally had that time as I know there are many who don’t. Whether or not to choose chemo can sometimes be an ongoing question.

    Whether you have chemo or not you definitely need follow up with the appropriately scheduled testing to keep an eye on things for a while. Get another doctor. They work for you and don’t stop interviewing them until you feel you have the right one for you. With the right doctor you will be better able to decide on what your next step should be and what feels right for you. Good luck to you!
  • xmomtofourx
    xmomtofourx Member Posts: 44
    AnneCan said:

    Welcome Bonnie
    I am glad you posted; this is a great place to hang out when you are feeling lost, confused, sad, mad or happy.:) I agree with others that if you are not comfortable with your doctor, another opinion may help. I also agree with Pepe; if you have to have colon cancer, stage 2 is a much better place to be than where some of us are.

    Take good care!

    Thank you Anne, its
    Thank you Anne, its comforting to know I am not alone here.

    I am thankful to be only a stage 2 but at the same time very upset with myself for not having things checked out much sooner and catching it earlier. I had symptoms for about 10 months or so before I did anything so I can only be upset with myself for that. I figured having strokes at a very young age was enough and sure didn't expect to have cancer as well...I guess I'm just getting things out of the way now while I'm young so old age will be a breeze ;)

    Pepe basically hit right on the head the question I needed answered, I'm glad I came here, that was really what I needed to hear to make me feel better!

    Bonnie
  • AnneCan
    AnneCan Member Posts: 3,673 Member

    Thank you Anne, its
    Thank you Anne, its comforting to know I am not alone here.

    I am thankful to be only a stage 2 but at the same time very upset with myself for not having things checked out much sooner and catching it earlier. I had symptoms for about 10 months or so before I did anything so I can only be upset with myself for that. I figured having strokes at a very young age was enough and sure didn't expect to have cancer as well...I guess I'm just getting things out of the way now while I'm young so old age will be a breeze ;)

    Pepe basically hit right on the head the question I needed answered, I'm glad I came here, that was really what I needed to hear to make me feel better!

    Bonnie

    Bonnie
    I think it is important for us to try not to blame ourselves for cancer or for not catching it earlier. Having things checked out sooner may or may not have helped. Remember stage 2 has a very good prognosis. I did all the "right" things but was misdiagnosed far too long only to find out I had 2 colorectal tumours + liver + lymph node (possibly ovary too) involvement. I still sometimes play the "what if" game but try to limit that + focus on where I am now + where I want to go. I also believe in living life as it is + try to live it one day at a time. If I say I can't wait until I am 5 years out of this because then I have "survived", I will rush through life + won't truly enjoy those 5 years. And I'll be 5 years older! Frankly, as with everyone, I don't know how long I will have here on this earth. I hope I will be here for a long time, but regardless I want to live life as fully as possible.
  • xmomtofourx
    xmomtofourx Member Posts: 44
    Lori-S said:

    Sorry you felt dismissed
    First let me welcome you to the board. There are a lot of knowledgeable people with many perspectives here that will be willing to help out.

    It seems that you feel merely dismissed by your medical provider and that this doctor was not a good fit for you. It doesn't matter who they are or what their credentials, if you are not comfortable with them they are not a good fit for you and therefore not the right doctor for you. Get another oncologist and go from there.

    It seems that you are concerned about needing chemo. Not all doctors will recommend chemo to a stage II patient after surgery. There is still much debate about this and many factors that a doctor assesses before recommending to chemo or not to chemo to a stage II patient. Some of them are: A high grade cancer, a tumor that caused obstruction, less than 12 lymph nodes removed, perforation, invasion of nearby organs, and margins that were not clear are the most common determining factors. So if you go to another doctor, these are the questions you might want to bring up. Are any of these determining factors present that might indicate that chemo is an appropriate treatment for you? Ask what are my specific cancer findings? Each of us is different and each tumor/cancer even in a particular person can be different. What is the risk/reward ratio for me if I do chemo?

    If you feel comfortable with it, get your own OR and path reports and go through them thoroughly so you can ask specific questions about what you might find disconcerting or need more explanation on. For example in my pre-op CT the radiologist noted several enlarged lymph nodes in the lower right pelvic quadrant suggestive of metastatic disease process even giving measurements on 2 of them as they were notably large yet after going through my OR and path reports I discovered that no lymph nodes were removed from that area. As there were no affected lymph nodes removed for pathology, I was staged as a IIc (T4bN0Mx) However, after discovering this information (myself) and bringing it to the doctors attention and then having it confirmed by another CT scan, I am clinically staged as a IIIc. So I have 2 staging numbers a path of IIc and a clinical of IIIc at this moment.

    Please know that there are many who would love to have that chemo/no chemo option. You must remember that chemo is a powerful toxic agent and for some has many drastic side effects. It is not a quick little treatment that you just take and go on your way, as I’m sure you can surmise just by reading some of the forums. If you do chemo will the benefit outweigh the possible side effects? I was released from the hospital after emergency surgery and still loopy from medications with a colostomy and a port and told to get straight to the nearest cancer center for chemo as opposed to anyone discussing details or options with me. They even said they would not release me unless I was ready to do that. Of course I wanted out of there after 2 weeks and smiled and said “No problem”. Being protective of myself, I first had to do extensive research and educate myself to explore all my options. If I still had cancer in me it wasn’t going anywhere and if I didn’t then there really wasn’t any problem with taking a little bit of time to do what I felt I needed to do. I was fortunate that I personally had that time as I know there are many who don’t. Whether or not to choose chemo can sometimes be an ongoing question.

    Whether you have chemo or not you definitely need follow up with the appropriately scheduled testing to keep an eye on things for a while. Get another doctor. They work for you and don’t stop interviewing them until you feel you have the right one for you. With the right doctor you will be better able to decide on what your next step should be and what feels right for you. Good luck to you!

    Good info
    Thank you Lori, there is so much I still have to learn about all of this but you gave me some great information.

    I wasn't really questioning so much if I needed chemo or not, I was told it was an option but probably wasn't needed so I opted not to have it. I do know a little bit about it as I have a father-in-law who is terminal with bladder and lung cancer who we expect to loose any day now, a cousin terminal with small cell lung and lost my birth mother in May to lung, liver and jaw cancer along with a couple of other friends lost to cancer this year. More what I wanted to know is if I should be having my levels checked, ct scans done or anything else to assure there is nothing else creeping up on me. They told me over and over I needed to be watched closely for awhile but then bam, drop me like a hot potato leaving me totally lost kwim? If I know that this is normal then fine, I am ok with it but having dealt with so many idiot drs in the past just makes this more frustating and confusing for me.

    Thank you again.

    Bonnie
  • Lori-S
    Lori-S Member Posts: 1,277 Member

    Good info
    Thank you Lori, there is so much I still have to learn about all of this but you gave me some great information.

    I wasn't really questioning so much if I needed chemo or not, I was told it was an option but probably wasn't needed so I opted not to have it. I do know a little bit about it as I have a father-in-law who is terminal with bladder and lung cancer who we expect to loose any day now, a cousin terminal with small cell lung and lost my birth mother in May to lung, liver and jaw cancer along with a couple of other friends lost to cancer this year. More what I wanted to know is if I should be having my levels checked, ct scans done or anything else to assure there is nothing else creeping up on me. They told me over and over I needed to be watched closely for awhile but then bam, drop me like a hot potato leaving me totally lost kwim? If I know that this is normal then fine, I am ok with it but having dealt with so many idiot drs in the past just makes this more frustating and confusing for me.

    Thank you again.

    Bonnie

    Bonnie
    You do need to be monitored.