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Viewing 6 posts - 1 through 6 (of 6 total)
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  • #44734
    Cher-L
    Participant

    Hi new here and have been posting.

    Are there any other Lynch positive members here ?

    Just a quick lesson on Lynch also known as HNPCC (colon cancer gene) which I am scoped every other year. This gene also connects to ureter/bladder cancers my mom lost her ureter and kidney to it. It also has a list of associated cancers , If you read my first post you will see what I and my immediate family have had to face.

    I am asking my urologist to send my tumor for testing to see if it is in fact a Lynch cancer .I carry the MSHN2 variant of it.

    If you have an extensive family history of colon, breast ( some studies say yes some not) urinary tract , skin not melanoma  a sub type, glios(brain) just to mention a few there may be more .

    I tried putting Lynch in the search bar but only my post came up.

    Cheryl

    • This topic was modified 1 year, 4 months ago by Cher-L.
    #44741
    Nightingale
    Keymaster

    Hi Cher-l,

    I am a moderator of the Forum and in the 5 to 6 years that I have been doing this, I have never seen that term.  Let’s wait and see if any of the other members chime in either from personal experience or from knowing someone who may have what you have.

    Thank you for sharing your experience in the Forum.  I hope someone chimes in.

    My best,

    #44788
    Joe
    Participant

    Hi Cher-I,

    Bladder cancer caused by Lynch syndrome (LS) seems to be very rare.  The booklet on LS by BC Cancer Agency does not include bladder cancer as cancers caused by LS though it says risk of developing urinary tract(renal pelvis) cancer increases from <1% for general population to 1-7% for having mutation on LS related genes, i.e MLH1/MSH2 and MSH6.   This may be the reason why you do not find posing related LS.  Patients community in Canada is about 1/10 vs patients community in the US.   BCAN forum seems have postings related on LS.   “www.inspire.com/search/?query=lynch%20syndrome”

    A few years ago, I attended to a seminar by a reassert scientist at Prostate centre in BC, where research for bladder cancer is done also.  There was a question if bladder cancer can be inherited. The question was asked because there was a bladder cancer patient with young siblings and the patient was very concerned about passing genes of bladder cancers to them.  The research scientist said bladder cancers will not be inherited, but told about BRAC variant can be inherited citing the case of Angelia Joline who opted for early double mastectomy as she carries a faulty gene, BRAC1 which is associated with high rate of breast cancer and ovarian cancer.  I do not remember if the research scientist mentioned about LS.

    I have read that MSH2 is one of proteins of which function is to repair mismatched DNA.   DNA a double-stranded molecule.  Each molecule is a long chain of 4 different nucleotides, i.e. A(adenine),  G(guanine), C(cytosine) and T(thymine).    Two molecules bind together to make DNA, by A of one molecule binding to T of the other molecule and G of one molecule biding to C on the other molecule.    During a cell cycle to divide into two daughter cells, DNA is split into to single strand molecules, then our body creates the other strand.  During this process, our body is known to make mistakes, for example binding A to G instead of C.  This error is called mismatching error.  MSH2 protein’s function is to participate in correcting mismatching errors.   When MSH2 gene is mutated, or missing, DNA’s mismatching errors may not be corrected.   If a mismatching error happens to be a key gene to cause cancer if the gene is mutated, cancer may rise.    When DNA mismatch error correction protein such as MSH2 does not function as it is supposed to be because its MSH2 gene is mutated or missing, every time a cell is divided, there is increased chance of producing dysfunctional protein which can cause cancer.   So, organs of which cells are frequently divide have higher chance of having cancer for LS.    LS can be associated various organs, especially highly associated with colon cancers.   The reason why LS is highly associated with colon cancers and less associated bladder cancers is because epithelial (lining) cells of colon are replaced every 7-8 days  but epithelial cells of bladder are replaced every 100-200 days, meaning that colon has 20 times chance of having cancer due to LS compared to bladder.

    BC Cancer Agency  – booklet for Lynch Syndrome

    “tinyurl.com/4847ksnz”

    #44795
    Cher-L
    Participant

    Hi Joe

    My mother and several relatives have had urinary tract cancers-they are Lynch pos- so while it may be rare my family is high risk. I knew when I was getting bladder issues that this could mean trouble but my doc was following the science not my family history. He was treating me for an overactive bladder which I knew I did not have. It is a nasty nasty gene. Thankfully I did not give up but it took a an over cautious ER doc to get the ball rolling. No blood in urine. My mother was treated for UTIS peeing rust back in the 90s before they finally found her cancer. She lost a ureter and kidney. She is 95 years young . She was scoped for six years and discharged . I have another relative – her mother kept presenting with bloody urine …thinking this was in the late 80s her doc told her stop looking in the toilet ahhh . She also lost a ureter and kidney came back in her other and she had a pouch made and lived out her life dying of other causes.

    Both my sister and I have had uterine and breast- now the jury is out regarding breast some studies say yes some no , I say yes. We have tested neg for BRAC1 and 2.

    #44796
    marysue
    Participant

    Hi Cher-L:

    I’m glad that you are sharing your experiences here on the forum.  This information may help someone else.  Like Nightingale, this is the first I’ve heard of anything like this.  I’m sorry that you and various family members have had such a tough journey with cancer.

    It is frustrating when you get various answers to specific questions and that doctors don’t always agree.  It makes it more confusing for patients and adds a layer of stress that neither the patient nor their family members need.

    However, all that being said, you and your family have learned a lot about your family’s genetic history.  Hopefully that will be helpful for the younger members in your family going forward.  I’m willing to bet that you now know way more than a lot of doctors.

    I do wish that more doctors would do what my GP did when I first went to him after I experienced blood in my urine for the first time.  After talking to me and giving me a solid poke and prod he agreed with me that it was not a UTI and needed further investigation.  He got me booked in for x-rays, ultrasound, urine cytology and a consult with a urologist all within a couple of days.  When I asked him if it could be cancer he told me “That is the first thing that we rule out.”  He decided to look for the most serious diagnosis first and told me if I was negative for cancer then we’d look at other causes for the blood in my urine.  I’m convinced that it was this approach that potentially saved my bladder and quite possibly my life at the time.

    What I was concerned about at the time was that a benign cyst in my left kidney which had been discovered on earlier x-rays was not so benign and that was the cause for the blood in my urine.  However test results were faxed back to my GP before I even got home from the x-ray clinic.  My son met me at the door with a message that my doctor’s office had called and wanted me to call right away.  I knew then that it was something really serious.  I drove back to my GP’s office and that was when I got the news about multiple tumours in my bladder.  As tough as it was to hear the “C” word, I’m grateful to this day for the speed in which things were done.

    Best Wishes once again for your upcoming surgery.  Positive thoughts and prayers coming your way for favourable pathology results.  ((((HUGS))))

    #44801
    Cher-L
    Participant

    Hi Marysue

    Yes I keep my self informed . Its only been since end of Feb that I started having issues so I feel this is caught early . I never had blood ever my symptoms were bladder fullness to urethra pain. I kept on my Doc. What I think took maybe a month longer to get me in was the fact this was a new doctor . My doc retired in December so poor timing for me.

    I think back to my breast cancer diagnosis June 09 surgery did not happen until July 31st . I don’t know how I made it through that summer. I have only told a few friends of this latest glitch…I’m hanging onto low grade low risk .

    I just want this OUT !

    Cheryl

     

     

     

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