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Adult Son’s Dr. Gave Him Inaccurate Info

Forums Caregiver Community Adult Son’s Dr. Gave Him Inaccurate Info

  • Post
    mom-to-mel-pat.
    Participant

      My adult ( now 28yrs old) son was diagnosed with nodular mel. 6yrs ago this month.  He was stage 3.   After  2 yrs of treatments  (surgeries ,gmcfs, radiation, & interferon) he has remained NED for 5 yrs.   Yesterday he had his annual scans and everything was great!!!!   Then his Dr.

      My adult ( now 28yrs old) son was diagnosed with nodular mel. 6yrs ago this month.  He was stage 3.   After  2 yrs of treatments  (surgeries ,gmcfs, radiation, & interferon) he has remained NED for 5 yrs.   Yesterday he had his annual scans and everything was great!!!!   Then his Dr. oncologist, told them, since he has been "cancer free" for 5 yrs, annual scans are no longer neccesary.   My son did opt to do scans for at least 2 more yrs.  Dr also said, "the return of his type of "cancer"  very rarely returns after 5 yrs".  I was talking to my son's wife last evening, about  what the Dr. findings, and what he told them about the chances of no return, after 5 yrs.  I told her that was not true.  She got upset with me and told me, " he is a Dr. and he knows these things".  I am scared they will get less vigilent.   I was the one who was my son's caregiver when he was diagnosed, & while he did 2 yrs of treatment.   I was the one doing the research while he was fighting his battle, and trying to carry on with his life, and build a career.  Which he did even while going thru treatments!  He has an amazing story!   After my son got married, I handed over his recoreds to them.  I explained as much as I could, and the fact that this cancer is more then likely never gone.  This is a life long battle!   I know my son did know about the seriousness of this cancer.   He had always read his records.   How do I go about  telling them his Dr was so terribly wrong, without upsetting them more?   I can't believe my son excepted this!   I would like at some time to appoarch the subject of him going back to MD Anderson, for his yearly scans.  Yet, don't want to upset them more.    I do not know this Dr.   This is one he got after his original oncologist retired.   I sometimes think they both now live in denial, and this Dr. just reinforced their denial.  

           Another question, the scans showed he has a kidney stone.  How do they know it is a stone and not cancer in his kidney?  My son opted not to see a urologist, since the stone doesn't bother him.   Silly man!!!!   When this stone decides to bother him……. he WILL know he is bothered!!!    

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    • Replies
        kateboston
        Participant

          Hopefully, the oncologist was just trying to be optimistic but I agree that statement is a little too grand. The likelyhood on this returning after 5 years is slim BUT it could still come back. Melanoma is so unpredictable & you never know. I'm sure your son & his wife just want to stay positive & the thought of it coming back is just too much to bear.

          As for the scans, I'm stage 3a and have not had 1 scan. My oncologist at MGH doesn't recommend them for someone in my situation due to many factors – the false positives seen on scans, the scans themselves causing other types of cancers, etc. On one hand, I'm okay with it but on the other, I always wonder 'what if'. I don't think there's necessarily a right or wrong answer. He said if I really, really insisted that he would do it, but I don't know if I'm there yet.

          For what it's worth, you're just being a good dad. I sometimes get really frustrated with my own mother who still wants to be very involved in my care – I know she's just being a good mom but sometimes as an adult (31 y/o) it's hard to still have your parents so involved but we do understand that the concern is coming from a good place.

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          kateboston
          Participant

            Hopefully, the oncologist was just trying to be optimistic but I agree that statement is a little too grand. The likelyhood on this returning after 5 years is slim BUT it could still come back. Melanoma is so unpredictable & you never know. I'm sure your son & his wife just want to stay positive & the thought of it coming back is just too much to bear.

            As for the scans, I'm stage 3a and have not had 1 scan. My oncologist at MGH doesn't recommend them for someone in my situation due to many factors – the false positives seen on scans, the scans themselves causing other types of cancers, etc. On one hand, I'm okay with it but on the other, I always wonder 'what if'. I don't think there's necessarily a right or wrong answer. He said if I really, really insisted that he would do it, but I don't know if I'm there yet.

            For what it's worth, you're just being a good dad. I sometimes get really frustrated with my own mother who still wants to be very involved in my care – I know she's just being a good mom but sometimes as an adult (31 y/o) it's hard to still have your parents so involved but we do understand that the concern is coming from a good place.

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            naty
            Participant

              my fatehr cancer returned 4 yrs 8mo's later from the original diagnosis.  It can always return and likely will.  I have no idea how to get them to realize how important it is to be so vigilant regarding melanoma.  

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              naty
              Participant

                my fatehr cancer returned 4 yrs 8mo's later from the original diagnosis.  It can always return and likely will.  I have no idea how to get them to realize how important it is to be so vigilant regarding melanoma.  

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                lhaley
                Participant

                  I understand your frustrations. I've been trying to have my son go to a dermatologist and it's like pulling teeth! 

                  Actually many places cut scans out at 5 years NED. I think they weigh the radiation risks. My mel came back afer 27 years so unfortunately it can and does happen!  I went from stage 1A to stage IV. Hopefully he has learned his body and at the sign of any changes he will go quickly to the Doctor.  It sounds like he opted to do the scans for 2 more years, maybe at that point he will decide to continue.

                  It's easy to slip into denial. I do it daily, otherwise I don't think I could cope. However reality surfaces when it's scan time or I have any issues.

                  Wishing the best for your son,

                  Linda

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                  lhaley
                  Participant

                    I understand your frustrations. I've been trying to have my son go to a dermatologist and it's like pulling teeth! 

                    Actually many places cut scans out at 5 years NED. I think they weigh the radiation risks. My mel came back afer 27 years so unfortunately it can and does happen!  I went from stage 1A to stage IV. Hopefully he has learned his body and at the sign of any changes he will go quickly to the Doctor.  It sounds like he opted to do the scans for 2 more years, maybe at that point he will decide to continue.

                    It's easy to slip into denial. I do it daily, otherwise I don't think I could cope. However reality surfaces when it's scan time or I have any issues.

                    Wishing the best for your son,

                    Linda

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                    Kim K
                    Participant

                      I was stage 2A and went straight to stage IV 7 years later!  I wasn't having scans due to my stage, had nothing detectable on physical exam, even today at stage IV!  It was a happenstance x-ray ordered by my chiropractor, for a year of back pain issues that turned up my lung nodule.  The PET/CT found the other one in my chest wall that was barely noticeable and initially missed on CT.

                      I am now NED thank goodness.

                      You are a parent, that role NEVER ceases, even in the case of marriage.  You will always be a parent, your son may not always be married.  His wife should step up to the plate if she really loves him.  You know men and seeing doctors.  It is nice to not have to "deal" with mel, but soooooooo many here have had late recurrances.  It is one of the few cancers that is notorious for that.  My onc. at 2A beat into my skull that I will "NEVER BE CURED, and that I had a very long life for mel to come back and bite me on the ass."  Her exact words.

                      The truth hurts at times.  Both your son and his wife seem immature and unable to effectively deal with the diagonsis.  There comes a point where you say it is because I love you that I am making you uncomfortable.  Being uncomfortable with your intrusion is THEIR problem.  Hopefully after time, common sense will prevail.  I dare his wife to visit this site and look at the archives of late recurrances, or Google it on the internet.  There are numerous medical journals that should smack them back to reality.  What if they start a family and he recurs with no symptoms until it is too late?

                      Sorry to be blunt, but I used to be like your son.  Now I am pushing my doctors to come up with a regular scan schedule.  It has been 6 months since my last scans, and I am only having them now at my insistance!  I have learned the hard way that I am not bullet proof. (walked around with a ruptured tubal preg. for 2 days before seeing the doctor, waited a few days until I became half blind in one eye while pregnant before calling the doctor and flying to Oahu for emergency surgery twice in 11 days, becoming so dehydrated from food poisoning before going to the ER because I was embarrassed about blowing out both ends.  I had no measurable blood pressure when I arrived.  This happend only 3 hours after my symptoms began.  I have soooo many other examples like this.  I am also a veterinarian with an extensive medical background.  What is the saying about docs making the worst patients?

                      Sorry so long……

                      Best of luck,

                      Kim 

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                        LynnLuc
                        Participant

                          Mine came back at 9 years…the onc is wrong…period. Melanoma is a life long threat…

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                          LynnLuc
                          Participant

                            Mine came back at 9 years…the onc is wrong…period. Melanoma is a life long threat…

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                          Kim K
                          Participant

                            I was stage 2A and went straight to stage IV 7 years later!  I wasn't having scans due to my stage, had nothing detectable on physical exam, even today at stage IV!  It was a happenstance x-ray ordered by my chiropractor, for a year of back pain issues that turned up my lung nodule.  The PET/CT found the other one in my chest wall that was barely noticeable and initially missed on CT.

                            I am now NED thank goodness.

                            You are a parent, that role NEVER ceases, even in the case of marriage.  You will always be a parent, your son may not always be married.  His wife should step up to the plate if she really loves him.  You know men and seeing doctors.  It is nice to not have to "deal" with mel, but soooooooo many here have had late recurrances.  It is one of the few cancers that is notorious for that.  My onc. at 2A beat into my skull that I will "NEVER BE CURED, and that I had a very long life for mel to come back and bite me on the ass."  Her exact words.

                            The truth hurts at times.  Both your son and his wife seem immature and unable to effectively deal with the diagonsis.  There comes a point where you say it is because I love you that I am making you uncomfortable.  Being uncomfortable with your intrusion is THEIR problem.  Hopefully after time, common sense will prevail.  I dare his wife to visit this site and look at the archives of late recurrances, or Google it on the internet.  There are numerous medical journals that should smack them back to reality.  What if they start a family and he recurs with no symptoms until it is too late?

                            Sorry to be blunt, but I used to be like your son.  Now I am pushing my doctors to come up with a regular scan schedule.  It has been 6 months since my last scans, and I am only having them now at my insistance!  I have learned the hard way that I am not bullet proof. (walked around with a ruptured tubal preg. for 2 days before seeing the doctor, waited a few days until I became half blind in one eye while pregnant before calling the doctor and flying to Oahu for emergency surgery twice in 11 days, becoming so dehydrated from food poisoning before going to the ER because I was embarrassed about blowing out both ends.  I had no measurable blood pressure when I arrived.  This happend only 3 hours after my symptoms began.  I have soooo many other examples like this.  I am also a veterinarian with an extensive medical background.  What is the saying about docs making the worst patients?

                            Sorry so long……

                            Best of luck,

                            Kim 

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                            EmilyandMike
                            Participant

                              It is great to hear about your son being 5 years out with nodular melanoma.  I  really like how Kim K put it…as depressing as it is that we can never really beleive to be "cured". Perhaps you should just point your daughter in law to the old memorial patients pages – the stories are countless of the cancer coming back 5 years plus. http://www.mpip.org/memorial.html

                               

                              Emily

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                              EmilyandMike
                              Participant

                                It is great to hear about your son being 5 years out with nodular melanoma.  I  really like how Kim K put it…as depressing as it is that we can never really beleive to be "cured". Perhaps you should just point your daughter in law to the old memorial patients pages – the stories are countless of the cancer coming back 5 years plus. http://www.mpip.org/memorial.html

                                 

                                Emily

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                                Jerry from Cape Cod
                                Participant

                                  Nine years from stage I to IV no stops in between.  Only caught due to annual visit and chest xray.  No symptoms.

                                  Jerry from Cape Cod
                                  Stage IV
                                   

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                                  Jerry from Cape Cod
                                  Participant

                                    Nine years from stage I to IV no stops in between.  Only caught due to annual visit and chest xray.  No symptoms.

                                    Jerry from Cape Cod
                                    Stage IV
                                     

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                                    JakeinNY
                                    Participant

                                      Hi,

                                      I'm 3 years NED. My oncologist (very well known…NYU) said that I will now get scanned 1/year until year 5, then every other year until year 9 or 11 and then just check ups after that. My doc told me that my chance of recurrence after 3 years is less than 10% but I will not take that for granted, after all, I started with a thin melanoma (0.4 mm). The doctors are concerned about the scans creating other cancers so this is why some are less likely to insist on them after 5 years. There is certainly a chance of a recurrence for your son, but not "likely", but he should certainly not treat his body like crap and open the door for melanoma to recur. It is certainly possible, obviously less than 10% chance, but he should treat his body, mind and spirit very well and live his life. Kudos to you for looking after him and he should do his best to keep the immune system strong, but the doctor is not alone in not insisting on scans after 5 years though.

                                      Best wishes for a long life for you and your son and your other loved ones.

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                                      JakeinNY
                                      Participant

                                        Hi,

                                        I'm 3 years NED. My oncologist (very well known…NYU) said that I will now get scanned 1/year until year 5, then every other year until year 9 or 11 and then just check ups after that. My doc told me that my chance of recurrence after 3 years is less than 10% but I will not take that for granted, after all, I started with a thin melanoma (0.4 mm). The doctors are concerned about the scans creating other cancers so this is why some are less likely to insist on them after 5 years. There is certainly a chance of a recurrence for your son, but not "likely", but he should certainly not treat his body like crap and open the door for melanoma to recur. It is certainly possible, obviously less than 10% chance, but he should treat his body, mind and spirit very well and live his life. Kudos to you for looking after him and he should do his best to keep the immune system strong, but the doctor is not alone in not insisting on scans after 5 years though.

                                        Best wishes for a long life for you and your son and your other loved ones.

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                                        Cynthia C
                                        Participant

                                          Congrats on the 5 years!!! Were you at the oncologist appointment? You quote the Doc yet say the oncologist "told them" not "told us". Your post sounds like this Doc is now dumping your son. Is that so or is there still a follow up plan in place? I agree that your son must always be super vigilant. Maybe being a young married couple they are a little in denial but I have to believe after what your son has gone through that he knows the score. Please invite your son and his wife to this website. Although many, if not most, long time NED warriors do not visit frequently they could read for themselves how Melanoma can rear it's ugly head at any time. But, it's important to go live and enjoy your life and not dwell on thinking what could happen. I think that yearly scans for 5 years is reasonable.

                                          Cynthia C, Stage 3, NED 10 years with no scans.

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                                          Cynthia C
                                          Participant

                                            Congrats on the 5 years!!! Were you at the oncologist appointment? You quote the Doc yet say the oncologist "told them" not "told us". Your post sounds like this Doc is now dumping your son. Is that so or is there still a follow up plan in place? I agree that your son must always be super vigilant. Maybe being a young married couple they are a little in denial but I have to believe after what your son has gone through that he knows the score. Please invite your son and his wife to this website. Although many, if not most, long time NED warriors do not visit frequently they could read for themselves how Melanoma can rear it's ugly head at any time. But, it's important to go live and enjoy your life and not dwell on thinking what could happen. I think that yearly scans for 5 years is reasonable.

                                            Cynthia C, Stage 3, NED 10 years with no scans.

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                                            rgarrick
                                            Participant

                                              Downloading and printing out this might help! http://www.cancer.org/Treatment/SurvivorshipDuringandAfterTreatment/UnderstandingRecurrence/LivingWithUncertainty/fear-of-cancer-recurrence-intro

                                              I found it while looking for something to help me deal with my fear of recurrence.

                                              The problem is, as I undertand it, most tests now available can't detect cancer cells untill they have multiplied to a certain point. So just because they can't detect it doesn't mean it's not there, sadly.

                                              Good luck.

                                              R.

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                                              rgarrick
                                              Participant

                                                Downloading and printing out this might help! http://www.cancer.org/Treatment/SurvivorshipDuringandAfterTreatment/UnderstandingRecurrence/LivingWithUncertainty/fear-of-cancer-recurrence-intro

                                                I found it while looking for something to help me deal with my fear of recurrence.

                                                The problem is, as I undertand it, most tests now available can't detect cancer cells untill they have multiplied to a certain point. So just because they can't detect it doesn't mean it's not there, sadly.

                                                Good luck.

                                                R.

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                                                djpayn
                                                Participant

                                                  The cancer center I am seen at acually says – cured after 5 years of no re-occurance!!

                                                  Tim from the MRF can and will attest to this!    WE sat next to each other as the HEAD of the melanoma department at a MAJOR melanoma center said this and we just looked at each other like he was crazy.

                                                   

                                                  Doctors today are rushing patient care and we are the ones who are suffering.  The wife's attitude of "he's the Dr., how can he be wrong?" is becoming all too common.

                                                  Seriously?? This is not a poker game, where you get to walk away with some bruised pride if you lose.

                                                  We are playing with our lives and allowing these doctors to rush our care!!

                                                  I refuse to stop scans after 5 years and I firmly believe that melanoma has no cure. Call it remission or whatever, but a melanoma patient is not cured just because the cancer has played a good role in 5 years of "hide & seek"!!

                                                   

                                                  A doctor once told my brother that he was "cured" from a non melanoma cancer  – 6 months later we buried him.

                                                  Another friend was diagnosed with a stage 2 mel, after 5 years he did scans only once a year. On his 10 year scan, he was told he was stage 4 with only months left.  2 months to be exact.

                                                   The reason melanoma is called THE BEAST is because its tricky, doesnt play by the rules, and can end your life quickly.  Im sorry, but my faith in doctors is not stronger than proven facts.

                                                   

                                                  I pray that you are able to get through to your son, that he should at least go fo scans once a year.   His life really does depend on it. You are smart and well educated about melanoma. Dont stop reminding him that you are his mother and have nothing but his best interest at heart.  H  

                                                   

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                                                  djpayn
                                                  Participant

                                                    The cancer center I am seen at acually says – cured after 5 years of no re-occurance!!

                                                    Tim from the MRF can and will attest to this!    WE sat next to each other as the HEAD of the melanoma department at a MAJOR melanoma center said this and we just looked at each other like he was crazy.

                                                     

                                                    Doctors today are rushing patient care and we are the ones who are suffering.  The wife's attitude of "he's the Dr., how can he be wrong?" is becoming all too common.

                                                    Seriously?? This is not a poker game, where you get to walk away with some bruised pride if you lose.

                                                    We are playing with our lives and allowing these doctors to rush our care!!

                                                    I refuse to stop scans after 5 years and I firmly believe that melanoma has no cure. Call it remission or whatever, but a melanoma patient is not cured just because the cancer has played a good role in 5 years of "hide & seek"!!

                                                     

                                                    A doctor once told my brother that he was "cured" from a non melanoma cancer  – 6 months later we buried him.

                                                    Another friend was diagnosed with a stage 2 mel, after 5 years he did scans only once a year. On his 10 year scan, he was told he was stage 4 with only months left.  2 months to be exact.

                                                     The reason melanoma is called THE BEAST is because its tricky, doesnt play by the rules, and can end your life quickly.  Im sorry, but my faith in doctors is not stronger than proven facts.

                                                     

                                                    I pray that you are able to get through to your son, that he should at least go fo scans once a year.   His life really does depend on it. You are smart and well educated about melanoma. Dont stop reminding him that you are his mother and have nothing but his best interest at heart.  H  

                                                     

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                                                    s66moloney
                                                    Participant

                                                      DO NOT TAKE BACK TO THIS DR>!!!  In March my friend went to Roswell hospital for his 9 yr. check up after having Melanoma on his back.    All these yrs no scans.  So this past March he was told "congratulations sir!!!"  you are cancer free.   In June this same Dr. said I am sorry to tell you , you are stage IV with tumors in lung, kidney and stomach.  Its like , what the hell is wrong with these people.  I would demand a yearly PET scan, just my opinion, I dont trust the lot of them

                                                      Good Luck!!!

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                                                        s66moloney
                                                        Participant

                                                          A week after I wrote this they scanned his brain and he had 11 spots, and its getting worse week by week pleae force him to have a yearly scan, blood test whatever IT IS WORTH IT

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                                                          s66moloney
                                                          Participant

                                                            A week after I wrote this they scanned his brain and he had 11 spots, and its getting worse week by week pleae force him to have a yearly scan, blood test whatever IT IS WORTH IT

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                                                            s66moloney
                                                            Participant

                                                              A week after I wrote this they scanned his brain and he had 11 spots, and its getting worse week by week pleae force him to have a yearly scan, blood test whatever IT IS WORTH IT

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                                                            s66moloney
                                                            Participant

                                                              DO NOT TAKE BACK TO THIS DR>!!!  In March my friend went to Roswell hospital for his 9 yr. check up after having Melanoma on his back.    All these yrs no scans.  So this past March he was told "congratulations sir!!!"  you are cancer free.   In June this same Dr. said I am sorry to tell you , you are stage IV with tumors in lung, kidney and stomach.  Its like , what the hell is wrong with these people.  I would demand a yearly PET scan, just my opinion, I dont trust the lot of them

                                                              Good Luck!!!

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                                                              Richard_K
                                                              Participant

                                                                Don't give up on your son and his family – keep working at it.  I was stage I in 1998, 11 years later, stage IV, no warning in between.  You just never know.

                                                                Dick

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                                                                Richard_K
                                                                Participant

                                                                  Don't give up on your son and his family – keep working at it.  I was stage I in 1998, 11 years later, stage IV, no warning in between.  You just never know.

                                                                  Dick

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                                                                  Richard_K
                                                                  Participant

                                                                    Don't give up on your son and his family – keep working at it.  I was stage I in 1998, 11 years later, stage IV, no warning in between.  You just never know.

                                                                    Dick

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