My husbands cancer is back again

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Ruthmomto4
Ruthmomto4 Member Posts: 708 Member

I am so confused as to how to go forward, he was stage 3 at diagnosis (2010) and had surgery to remove part of his colon and the affected lymph nodes. The surgeon assured him he got it all and because he was so scared of the chemo he didn't do it. 5 years later after a creeping cea his pet scan showed 2 mets on his liver. He had half of his liver resected one year ago. Now his cea has gone from 1.43, 1.34, 2.24, to todays 4.88. When he had his MRI in may to check the resection it showed an 8mm enhancing nodule at the hepatic flexure adjacent and inferior to the resection margin. Although he has not had his pet scan yet I am guessing that is the cause of the problem, since nothing else was seen. 

I have no idea what is to come but I keep seeing things we have never been offered like checking the tumor to see what kind of chemo is best, and chemo put directly into the liver, things like that. I am not where to go from here his oncologist is not a nice man, he does not like questions or any kind of straying from his plan. What are things I should ask, what are the best things to do. I feel like it's just one thing his onc offers and that's it. I would really like my husband to get a new dr but I don't even know how to that. This roller coaster ride of cancer just never seems to give you time to breathe.

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  • Trubrit
    Trubrit Member Posts: 5,796 Member
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    A second opinion

    I can't even imagine going to an Oncologist that I didn't like. I think it would be a good idea to find an Oncologist that you feel comfortable with, and not just settle for one who allows no questions and quesitoning of his treatments. 

    I have to travel a total of five hours to and from my Oncologist, but he is definitely worth it. I think you should ask around and see what other Oncologist are around your area. 

    I am so sorry to hear that your husband is back in the battle. It seems like a never ending challenge. 

    I know there are others here who can advise you better on finding another Oncologist. 

    Sue - Trubrit

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
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    Trubrit said:

    A second opinion

    I can't even imagine going to an Oncologist that I didn't like. I think it would be a good idea to find an Oncologist that you feel comfortable with, and not just settle for one who allows no questions and quesitoning of his treatments. 

    I have to travel a total of five hours to and from my Oncologist, but he is definitely worth it. I think you should ask around and see what other Oncologist are around your area. 

    I am so sorry to hear that your husband is back in the battle. It seems like a never ending challenge. 

    I know there are others here who can advise you better on finding another Oncologist. 

    Sue - Trubrit

    Thank you Sue, I agree he

    Thank you Sue, I agree he needs a new doctor. 

  • John23
    John23 Member Posts: 2,122 Member
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    Forums….

    There should be an area on the “profile page” to allow for a member’s area, zip code, or at least the country a member is at. Without knowing that information, it’s almost impossible to offer any suggestions regarding care.

    -If- you are located in the USA, choosing who provides medical care is up to the patient. Who pays for the medical care is also up to the patient.

    And from my personal experience, asking nurses who they feel is a good choice for a physician can be a great way to start. They see it all, and they hear it all. They often see both the “before and after” conditions that most people never get to see. Sure, nurses can be as opinionated as anyone else, but their opinions are more likely to be based on what they have personally witnessed, rather than what they have “heard”.

    The choice of who provides a “second opinion” should always be from a physician that is not of the same group or association as the previous one. And no physician of value should ever find a quest for another opinion to be insulting. Physicians are often very busy, and keeping up with the “latest and greatest” technology isn’t always as easy as it looks; physicians often learn more about the latest technology from other physicians, and that “other opinion” can be worth quite a bit to his/her own practice.

    Opinions regarding cancer care and treatments are more often to be best when coming from surgeons specializing in cancer care. Oncologists make their money selling cancer drugs. If that sounds too cynical, I would insist that rather than anyone simply believing me, do a bit of searching on the web, and learn exactly how the system works. It’s nothing less than appalling; disgraceful..

    It is very important that other opinions are gained and studied. No life-threatening experience should be undertaken without as much knowledge regarding care as can possibly be had. It’s not the speed into action that is important, it is the direction you’re headed, that is of most importance.

    Do not ever allow fear to be your guide; fear is your enemy. The unscrupulous will take advantage of your fear; they will instill it and dwell on it.

    There used to be a motto on the front page of a leading Long Island, NY newspaper:

                                        “Where there is no vision, the people perish”


    You’ll do fine as long as you keep calm and learn as much as you can.

    And you can help your spouse most, by allowing his own intuition to be his guide. A little knowledge can go an awfully long way……… The survival instinct can take you further.

    My best to you and yours,

    John

     

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
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    John23 said:

    Forums….

    There should be an area on the “profile page” to allow for a member’s area, zip code, or at least the country a member is at. Without knowing that information, it’s almost impossible to offer any suggestions regarding care.

    -If- you are located in the USA, choosing who provides medical care is up to the patient. Who pays for the medical care is also up to the patient.

    And from my personal experience, asking nurses who they feel is a good choice for a physician can be a great way to start. They see it all, and they hear it all. They often see both the “before and after” conditions that most people never get to see. Sure, nurses can be as opinionated as anyone else, but their opinions are more likely to be based on what they have personally witnessed, rather than what they have “heard”.

    The choice of who provides a “second opinion” should always be from a physician that is not of the same group or association as the previous one. And no physician of value should ever find a quest for another opinion to be insulting. Physicians are often very busy, and keeping up with the “latest and greatest” technology isn’t always as easy as it looks; physicians often learn more about the latest technology from other physicians, and that “other opinion” can be worth quite a bit to his/her own practice.

    Opinions regarding cancer care and treatments are more often to be best when coming from surgeons specializing in cancer care. Oncologists make their money selling cancer drugs. If that sounds too cynical, I would insist that rather than anyone simply believing me, do a bit of searching on the web, and learn exactly how the system works. It’s nothing less than appalling; disgraceful..

    It is very important that other opinions are gained and studied. No life-threatening experience should be undertaken without as much knowledge regarding care as can possibly be had. It’s not the speed into action that is important, it is the direction you’re headed, that is of most importance.

    Do not ever allow fear to be your guide; fear is your enemy. The unscrupulous will take advantage of your fear; they will instill it and dwell on it.

    There used to be a motto on the front page of a leading Long Island, NY newspaper:

                                        “Where there is no vision, the people perish”


    You’ll do fine as long as you keep calm and learn as much as you can.

    And you can help your spouse most, by allowing his own intuition to be his guide. A little knowledge can go an awfully long way……… The survival instinct can take you further.

    My best to you and yours,

    John

     

    Than you, weare in the USA,

    Than you, weare in the USA, in Connecticut. His surgeon for his resection was out of Yale but he is friends with the oncologist so I doubt he would be comfortable recommending a new one.

  • Coppercent
    Coppercent Member Posts: 158
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    Than you, weare in the USA,

    Than you, weare in the USA, in Connecticut. His surgeon for his resection was out of Yale but he is friends with the oncologist so I doubt he would be comfortable recommending a new one.

    If he is truly not

    If he is truly not comfortable with his oncologist, he should find a new one.  One that includes the patients input in his plans.  Your surgeon would probably not have an issue referring you to another one.  it doesn't mean he is a bad oncologist. He just may not be a good fit for you and your surgeon understands that happens.  I have an oncologist that does not push chemo. If he thinks surgery is the way to go he recommends surgery with out chemo. I can say most I have run into are that way as well.  Good luck. And most physicians welcome a second opinion. They want you to do well. 

  • jalusa
    jalusa Member Posts: 21
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    Than you, weare in the USA,

    Than you, weare in the USA, in Connecticut. His surgeon for his resection was out of Yale but he is friends with the oncologist so I doubt he would be comfortable recommending a new one.

    I would recommend a 2nd

    I would recommend a 2nd opinion at Memorial Sloan Kettering in NY.  You don't have to ask anyone to go, just go.

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
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    jalusa said:

    I would recommend a 2nd

    I would recommend a 2nd opinion at Memorial Sloan Kettering in NY.  You don't have to ask anyone to go, just go.

    I did!

    we gave to wait for his Pet CT to be done since he does not have any scan since May. Once that gets done and we fax all the records they will make us an appointment. 

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
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    If he is truly not

    If he is truly not comfortable with his oncologist, he should find a new one.  One that includes the patients input in his plans.  Your surgeon would probably not have an issue referring you to another one.  it doesn't mean he is a bad oncologist. He just may not be a good fit for you and your surgeon understands that happens.  I have an oncologist that does not push chemo. If he thinks surgery is the way to go he recommends surgery with out chemo. I can say most I have run into are that way as well.  Good luck. And most physicians welcome a second opinion. They want you to do well. 

    I don't think he bothers my

    I don't think he bothers my husband as much as me. The last time when he had the liver mets I got upset (crying a bit) in the room, so when I was with him at the next appointment he came in and said, oh good you brought your nervous wife with you. I never went back. He pushed the chemo and when my husband did not do it he called him a moron. He is close and easy to get to that's why my husband doesn't mind him. 

  • John23
    John23 Member Posts: 2,122 Member
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    I don't think he bothers my

    I don't think he bothers my husband as much as me. The last time when he had the liver mets I got upset (crying a bit) in the room, so when I was with him at the next appointment he came in and said, oh good you brought your nervous wife with you. I never went back. He pushed the chemo and when my husband did not do it he called him a moron. He is close and easy to get to that's why my husband doesn't mind him. 

    Liver and onions?

    The liver plays a very important role with our health. Aside from doing a major job of keeping the Serotonin and Melatonin balanced, it filters poisons out, keeps our blood clean, and will raise and lower the CEA levels.

    Liver dysfunction increases CEA levels as the liver is the primary site of CEA metabolism.

    Things like a “liver resection” and the healing/re-growing process that follows (the liver is one organ that can re-grow itself), will raise the CEA level. And as you’ll read at most sites, the CEA level by itself, is not much of an indicator of anything. It’s only one marker among many to watch….

    I had a surgeon with an attitude like your Oncologist has. I just switched GPs, and was in the process of finding another Gastroenterologist. The decision to take a medication or not, is entirely up to the patient. In the past, I had been prescribed Nitroglycerin for my Atrial Fibrillation. Had I taken it, I wouldn’t be here typing this. Last year I was misdiagnosed as having Pneumonia, and given a prescription that should never be prescribed to anyone with a “short bowel”. I didn’t pay enough attention, took it, and am lucky to still be here. The bad effects will never go away….

    Physicians make mistakes. You have to be your own advocate and you have to be damned stubborn about it. We all should always listen to our inner voice; our intuition. It is the voice of self-survival. We were gifted with it for good reason.

    I’m glad you two are headed to Sloan Kettering. Contact PhillieG here at this board. He can tell you about M.S.K. (He convinced me, and that ain’t easy to do)

    Be well. Pat hubby on the head for me, willya’? (not too hard though)

    Thanks,

    John

  • Trubrit
    Trubrit Member Posts: 5,796 Member
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    when I was with him at the

    when I was with him at the next appointment he came in and said, oh good you brought your nervous wife with you.

    He pushed the chemo and when my husband did not do it he called him a moron.

    Oh my goodness! This is appauling!  Shame on him, and shame on your husband for letting him speak to you like that. OK, your husband is forgiven, he is dealing with Cancer, but your Oncologist isn't. And nobody, NOBODY, espeically not your Oncologist, should speak to a paitent like that. 

    Good luck with Sloan. You will be so happy with your treatment. Really, can it get any worse? I don't think so. 

    Sue - Trubrit

     

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
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    Trubrit said:

    when I was with him at the

    when I was with him at the next appointment he came in and said, oh good you brought your nervous wife with you.

    He pushed the chemo and when my husband did not do it he called him a moron.

    Oh my goodness! This is appauling!  Shame on him, and shame on your husband for letting him speak to you like that. OK, your husband is forgiven, he is dealing with Cancer, but your Oncologist isn't. And nobody, NOBODY, espeically not your Oncologist, should speak to a paitent like that. 

    Good luck with Sloan. You will be so happy with your treatment. Really, can it get any worse? I don't think so. 

    Sue - Trubrit

     

    I let his comment to me pass

    I let his comment to me pass because I was so worried and then relieved by the first clear pet scan and I wasn't there for the moron comment. I just kept saying to my husband how will this work when I refuse to go to any appointments because he is such an arrogant jerk. So you are right it can't get worse I guess!