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HNPCC (Hereditary Non Polyposis Colon Cancer)

Kaza
Occasional Contributor
February 2009

HNPCC (Hereditary Non Polyposis Colon Cancer)

Hi All, I was diagnosed October 2006 at age 43 with bowel cancer.  After having my tumours and 80% of my bowel removed and 6 months of chemo I was recommended to have genetic testing to see if I carry the faulty gene for bowel cancer.  They were pretty certain that I did and it was confirmed that I do.  I have been reading alot of the different forums but I dont see much mentioned about HNPCC and I was wondering if there is anyone else that has found out that they carry the faulty gene and would like to talk to me about it.  Thanks Kaza
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mihalo
Contributor
February 2009

HNPCC (Hereditary Non Polyposis Colon Cancer)

Hi Kaza, I am just in the beginnings of having testing done. I had someone test one of my tumors last yr to determine if it was indeed HNPCC and it came back as 99% not. So I am confident it won't be genetic. This is little relief to me for my children, however they will have to have colonoscopies from the time they are 16-18yrs old as I was 29 when diagnosed with stage 4.....very young I know, I haven't met anyone else yet on these forums. Have read a few cases on american sites. I hope all is well for you at the moment. Cheers Mihalo
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Kaza
Occasional Contributor
February 2009

HNPCC (Hereditary Non Polyposis Colon Cancer)

Hi Mihalo How long ago were you diagnosed?  Mine was in October 2006. My kids are 20 and 23 now and they were a bit shocked to find out that they carry the gene as well.  They were worried about it at first, but they have seemed to have forgotten about it with their busy lives.  It must be hard for you with young children. Do you live in the Sydney Metro area?  There is a Bowel Cancer Support Group at the San hospital.  They are the only support group for Bowel Cancer in NSW and they are really good. I thought I would just mention it if you are interested. When I was on chemo I had a PE and since then I had a blood clot in my leg.  I have since been tested and I also carry the Factor V Leiden gene, so my genes are really bad. In my family I am the youngest of 5 and I was the one to find out about all these problems. I better go. Kaza
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mihalo
Contributor
February 2009

HNPCC (Hereditary Non Polyposis Colon Cancer)

Hi Kaza, I was diagnosed last sept, 5 days before my 30th b'day with the lung tumors. Wasn't until I went in for a colonoscopy, bronchoscopy and laproscopy on the 24th of Sept (the day after my son's 4th b'day) that they found the primary in the bowel. No scans showed this up, not even the PET scan. They removed 70cm of the large intestine and 16 lymph nodes of which 9 were diseased. So that came as a shock as I said none of that showed up on scans. So we hope they got it all. Thanks for the info on the support group only I'm in Vic. The cancer council site for vic doesn't have a forum like this so thats why I have begun posting here, but thanks anyway. I don't know yet if I do carry the gene's I am in the process of having it all done, will keep you updated. Cheers Mihalo
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Kaza
Occasional Contributor
February 2009

HNPCC (Hereditary Non Polyposis Colon Cancer)

Hi Mihalo, It is very young for your children to have colonoscopies.  At that age they dont really understand.  Mine will have theirs at 25.  When were you diagnosed with bowel cancer and at what stage are you at?  I was the same as you, finding others with hnpcc on overseas forums.  As you can see that there are not many of us who know if they have it not. Good to talk to you. Kaza
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mihalo
Contributor
February 2009

HNPCC (Hereditary Non Polyposis Colon Cancer)

Hi Kaza, I was diagnosed at 29 as stage 4 (or stage D dukes). Had bleeding symptoms during my 2nd pregnancy at 26 which was probably a polyp rather than what the docs thought was haemroids higher up at that stage. Then the bleeding was intermittent between 2nd and 3rd pregnancies and by the time my 3rd baby was 5 months old I was having breathing difficulties which was my first symptom. Well now that we know what the problem is, there were other symptoms that were not picked up on because they were masked by pregnancy basically. They say children should have colonoscopies 10 yrs earlier than when I was diagnosed, which would make them 19, but because I was stage 4 by then they are recommending they have them from 16. I'm sure they will understand, and my colonoscopy was not traumatic at all. They will be closely watched by the doctors though and I'm sure they will be made very aware of ALL the symptoms. Must dash....kids are hungry!!! Cheers Mihalo  
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Lisa35
Not applicable
February 2009

HNPCC (Hereditary Non Polyposis Colon Cancer)

Hi Kaza and MihaloI only just found this forum while internet surfing in trying to find answers to a secondary bowel cancer turning up on my ovary (uninvited!!).I am 37 and was diagnosed with bowel cancer dukes B Sept last year ('07).  I had 10 cms removed.  Managed to get onto the Xeloda clinical trial in the control group (so no avastin).  As part of the trial they (oncologist) followed up with yearly CT scan which is not normal procedure for a dukes B.  October this year the CT scan found a cyst on my ovary.  I then had surgery which discovered that it was a secondary bowel cancer.  So it is disappointing that chemo did not kill it the first time.   There are a number of theories running around as to how this occurred but the specialists are all guessing.I am going to do another round of chemo with combination drugs and see how that goes but the oncologist said that there is no medical evidence to suggest that this round will work.  Fingers crossed that there are no other tumours or cancer cells.At the same time I am currently going through menopause as I elected to have a full hysterectomy due to my mum having breast cancer at 45.  As it was with the cells being cancerous they would have done a hysterectomy.  Sorry for the long winded post but a lot has happened just when life was beginning to be easier.I have three children - two girls 12 and 9 and a boy 7.  The emotions second time round have not been good.I'm so glad I found this website as it is nice to speak to other people and know that your emotions are 'normal'.  Love to chat and help you both and others through the journey.Lisa
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Kaza
Occasional Contributor
February 2009

HNPCC (Hereditary Non Polyposis Colon Cancer)

Hi Lisa I do have my fingers crossed for you.  I had an ovary removed with my surgery 2 years ago as the tumour was leaning against it.  I have had a complete hysterectomy as well as a preventative measure as HNPCC is connected to edometrium cancer (I hope I spelt it properly).  I had 6 months of chemo Oxaliplatin, Fluorouracil and Leaucovorin. It really knocked me around.  But 2 years down I am feeling really well.  I just had a check up and everything seems fine. I hope you get some good news.  Keep in touch. Kaza 
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bev
Frequent Contributor
February 2009

HNPCC (Hereditary Non Polyposis Colon Cancer)

Hello, I have replied to you previously with this, but, hey, are we the only ones that have this symptom? I have a grandson with mild autism and now our grandaughter was diagnosed with asperger's(autism). I might try and find out if that could be inherited too. Hope you are well. Bev    
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Kaza
Occasional Contributor
February 2009

HNPCC (Hereditary Non Polyposis Colon Cancer)

Hi Bev I think there are alot of people who have it but they dont know it and haven't had the testing as yet.  I have one brother and one sister who carry the gene but they have been lucky not to have had bowel cancer. Kaza
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