Adult Son’s Dr. Gave Him Inaccurate Info

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.

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.

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.  

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.  

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

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

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 

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 

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

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

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
 

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
 

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.

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.

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.

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.

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.

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.

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  

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  

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!!!

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!!!

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

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

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