should I be on 'Dr Phil' ? Have Hypertrophic Cardiomyopathy with multiple colonic polyps and no one

irishhopeful
irishhopeful Member Posts: 11
in Colorectal Cancer #1

Still waiting to hear does any one know of anybody with the above conditions?  Thanks.  

Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #2
    Hi

    I've been on the forum for 4-years and don't recall anyone mentioning something like this....

    Hopefully if some folks have they can share their experiences....just wanted to acknowledge your post....wish I could help.

    I did a query to confirm what I thought the condition was....I've got thickening in other areas like the pleura of the lung....but not the heart muscle. 

    Sounds like a job for a cardiovascular specialist to confer with...

    Multiple polyps can be quite common.....or they can just be singluar in nature. 

    In the short reading that I did, I could not find a correlation between the two conditions in conjunction that you described.

  • steved
    steved Member Posts: 834 Member
    #3
    Incidental disorders

    On a basic search there doesnt seem to be any clear association between the two conditions- no specific syndromes described that linkthe two.I would guess it is simply a case of having two un related disorders at the same the same time (like many here who have cancer but also have other health conditions). Of course they now impact on each other with implication on treatment options so good communicationbetween your boweland your heart docs will be crucial.

    steve

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #4
    steved said:

    Incidental disorders

    On a basic search there doesnt seem to be any clear association between the two conditions- no specific syndromes described that linkthe two.I would guess it is simply a case of having two un related disorders at the same the same time (like many here who have cancer but also have other health conditions). Of course they now impact on each other with implication on treatment options so good communicationbetween your boweland your heart docs will be crucial.

    steve

    Depending on what you mean by "multiple",

    you might want to be checked for genetic conditions like FAP.  This tends to hit younger people, and present with many polyps.  If you have it, it can affect treatement decisions, and lead to genetic testing for other family members, so would be good to look into it, if you haven't already.  Good luck~AA

  • irishhopeful
    irishhopeful Member Posts: 11
    #5
    Sundanceh said:

    Hi

    I've been on the forum for 4-years and don't recall anyone mentioning something like this....

    Hopefully if some folks have they can share their experiences....just wanted to acknowledge your post....wish I could help.

    I did a query to confirm what I thought the condition was....I've got thickening in other areas like the pleura of the lung....but not the heart muscle. 

    Sounds like a job for a cardiovascular specialist to confer with...

    Multiple polyps can be quite common.....or they can just be singluar in nature. 

    In the short reading that I did, I could not find a correlation between the two conditions in conjunction that you described.

    Hi and thank you for replying....wow,  4 yrs and nothing similar?  I knew I was a 'rarity' but that's ridiculous!!  Funny thing is....I'm convinced there's a genetic link/component to both of my conditions (in combination)...but finding a resource to help me is proving phenominally difficult !  I thank you again for your reply and wish you all the best.

  • irishhopeful
    irishhopeful Member Posts: 11
    #6
    steved said:

    Incidental disorders

    On a basic search there doesnt seem to be any clear association between the two conditions- no specific syndromes described that linkthe two.I would guess it is simply a case of having two un related disorders at the same the same time (like many here who have cancer but also have other health conditions). Of course they now impact on each other with implication on treatment options so good communicationbetween your boweland your heart docs will be crucial.

    steve

    Thanks steved

    yep...I agree...and thanks...I wish I could get the 2 departments to 'talk' to each other....seems a difficulty in health care....pity we are not treated as they would treat their own !!  Thanks again.

  • irishhopeful
    irishhopeful Member Posts: 11
    #7
    annalexandria said:

    Depending on what you mean by "multiple",

    you might want to be checked for genetic conditions like FAP.  This tends to hit younger people, and present with many polyps.  If you have it, it can affect treatement decisions, and lead to genetic testing for other family members, so would be good to look into it, if you haven't already.  Good luck~AA

    Thanks annalexandria.... suppose I should have given more info at the start...sorry.  Had colonoscopy 2 years ago...3 polyps (1 adenoma low grade dysplasia)....year later...several more polyps....3 months ago multiple polyps...still no pathology but (so-called) professor wants to remove most of colon; thing is...I feel whatever this is...is gone into my stomach now...so, if my bowel is removed (and probably not keyhole) and I survive all that....perhaps I'm looking at a stomach operation....am getting scant info from so-called experts here...hence talking to wonderful people like yourselves to get as much info as possible !  Thanks for your reply again.   

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #8
    irishhopeful said:

    Thanks annalexandria.... suppose I should have given more info at the start...sorry.  Had colonoscopy 2 years ago...3 polyps (1 adenoma low grade dysplasia)....year later...several more polyps....3 months ago multiple polyps...still no pathology but (so-called) professor wants to remove most of colon; thing is...I feel whatever this is...is gone into my stomach now...so, if my bowel is removed (and probably not keyhole) and I survive all that....perhaps I'm looking at a stomach operation....am getting scant info from so-called experts here...hence talking to wonderful people like yourselves to get as much info as possible !  Thanks for your reply again.   

    I think you need to start demanding some answers...

    three months is pretty insane for path results.  And it sounds like you need a scan, if you think it has spread to your stomach (I think that would be standard anyway prior to any surgery).  I'm just kind of confused by your situation...doesn't sound like you're getting the standard of care for colon cancer, which would concern me if that is in fact what your docs thing you have.  Have they given you an official dx on the colon situation?  Removing the entire colon seems like an unusual step, unless it's been determined that you do have something like FAP, a condition which causes many (as in 100s) polyps to grow throughout the colon.  Sounds like it's time to push your docs for more information...

  • Cathleen Mary
    Cathleen Mary Member Posts: 827 Member
    #9
    irishhopeful said:

    Thanks steved

    yep...I agree...and thanks...I wish I could get the 2 departments to 'talk' to each other....seems a difficulty in health care....pity we are not treated as they would treat their own !!  Thanks again.

     
    Welcome.  I am sorry for my

     

    Welcome.  I am sorry for my delayed reply; lately, I have been more of a lurker than a participant.  However, I have hypertrophic cardiomyopathy as well as autoimmune hepatitis.  Three years ago, I had a right hemicolectomy for colon cancer. In spite of a serious post op infection, I did well. Although there were bumps on the road, none of the significant issues were cardiac.

    My best advice is to choose the team and the medical center that cares for you carefully. My surgeon, oncologist, cardiologist, and liver specialist worked closely and communicated well.  I have continued to have pre cancerous polys with each annual colonoscopy.  I have not had a recurrence but will have a PET scan on Monday because of rising CEA and low back pain. 

    I know that everyone's experience is different butyou are not alone.

    Best wishes and courage.

    Cathleen Mary

     

     

  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #10
    Cathleen Mary said:

     
    Welcome.  I am sorry for my

     

    Welcome.  I am sorry for my delayed reply; lately, I have been more of a lurker than a participant.  However, I have hypertrophic cardiomyopathy as well as autoimmune hepatitis.  Three years ago, I had a right hemicolectomy for colon cancer. In spite of a serious post op infection, I did well. Although there were bumps on the road, none of the significant issues were cardiac.

    My best advice is to choose the team and the medical center that cares for you carefully. My surgeon, oncologist, cardiologist, and liver specialist worked closely and communicated well.  I have continued to have pre cancerous polys with each annual colonoscopy.  I have not had a recurrence but will have a PET scan on Monday because of rising CEA and low back pain. 

    I know that everyone's experience is different butyou are not alone.

    Best wishes and courage.

    Cathleen Mary

     

     

    As far is not an stage 3 or 4 Cancer( which is not )
    Keep calmed man,don't worry too much!That's my own opinion.
    Gooo luck my friend!
    Hugs!
  • irishhopeful
    irishhopeful Member Posts: 11
    #11
    Cathleen Mary said:

     
    Welcome.  I am sorry for my

     

    Welcome.  I am sorry for my delayed reply; lately, I have been more of a lurker than a participant.  However, I have hypertrophic cardiomyopathy as well as autoimmune hepatitis.  Three years ago, I had a right hemicolectomy for colon cancer. In spite of a serious post op infection, I did well. Although there were bumps on the road, none of the significant issues were cardiac.

    My best advice is to choose the team and the medical center that cares for you carefully. My surgeon, oncologist, cardiologist, and liver specialist worked closely and communicated well.  I have continued to have pre cancerous polys with each annual colonoscopy.  I have not had a recurrence but will have a PET scan on Monday because of rising CEA and low back pain. 

    I know that everyone's experience is different butyou are not alone.

    Best wishes and courage.

    Cathleen Mary

     

     

    medical centers...and choosing

    Cathleen Mary,  many thanks for your reply....so good to talk to someone 'similar' !  Had a little giggle when you mentioned choosing team and med centers....tell you why;  it took me 18 months to get checked out for arthritis in my spine...1 year to 'see' a specialist for my heart....1 year to 'see' a specialist for my bowel :  As my name may hint...I'm not from your 'neck of the woods'....I live (if you could call it living) in a politically retarded little country that pretends to look after the most needy and helpless...but in effect does exactly the opposite !  If you are wealthy or have enough money for private health-care here...you have a good chance to survive.  If you are connected and wealthy....you get to an expert within weeks...if, through accident or other...and your not working....private health-care goes out the window....and your left on the very basic care....which will mean that one year to see an expert may be a minimal !!  People here are dying, have died...and will die, because the wealthy politicians here and their families are not affected by their cutbacks in welfare/health etc !  So, cathleen mary....I'm glad you have excellent health-care where you are...I really am...and I wish you the best...if I had the wherewithall to exit this 'septic-isle' I'd be over with ya....we could have a few laughs over coffees? Be safe and look after you and yours.  Thanks again.      

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