Hello everyone, i have been reading through your posts and decided to join this community because you all seem very supportive, positive and helpful! which is just what i need at the moment...
let me introduce myself; My name is Claire, im 31 and i live in Brisbane, Queensland. I have just been diagnosed with lynch (MSH6 mutation) after a good two years of waiting, counselling, waiting ;) It all started when my aunty was diagnosed after having a urethra tumour removed (she has also had cervical cancer and has now just had another small tumour taken from the bowel, thankfully they keep finding hers in early stages and she is fine).
my father passed away from pancreatic cancer at age 49, he was diagnosed august 6th and passed december 21st back in 2001. another aunty (all on my fathers side) passed from a brain tumour aged 66, that was approx 4 years ago now.
i am obviously extremely worried (actually sick to the stomach and not sleeping) over this recent diagnoses. i swing from thinking its a death sentence to thinking its ok ill take it in my stride and just be proactive about check ups. the only thing that worries me is that both my father and the aunt with the brain tumour, were told, that even if they would have found their cancer early, nothing still could have been done. i guess that is why i am feeling rather doomed!
I am getting married in 7 months and my finance and i have already started talking about starting a family but i feel now like that has all been ripped away from me? should i be having children? can i spare that time to do that since there has been talk of having preventative surgery!
arrrhh
i appreciate you reading through this
from one very worried aussie...
oxoxo
Claire
let me introduce myself; My name is Claire, im 31 and i live in Brisbane, Queensland. I have just been diagnosed with lynch (MSH6 mutation) after a good two years of waiting, counselling, waiting ;) It all started when my aunty was diagnosed after having a urethra tumour removed (she has also had cervical cancer and has now just had another small tumour taken from the bowel, thankfully they keep finding hers in early stages and she is fine).
my father passed away from pancreatic cancer at age 49, he was diagnosed august 6th and passed december 21st back in 2001. another aunty (all on my fathers side) passed from a brain tumour aged 66, that was approx 4 years ago now.
i am obviously extremely worried (actually sick to the stomach and not sleeping) over this recent diagnoses. i swing from thinking its a death sentence to thinking its ok ill take it in my stride and just be proactive about check ups. the only thing that worries me is that both my father and the aunt with the brain tumour, were told, that even if they would have found their cancer early, nothing still could have been done. i guess that is why i am feeling rather doomed!
I am getting married in 7 months and my finance and i have already started talking about starting a family but i feel now like that has all been ripped away from me? should i be having children? can i spare that time to do that since there has been talk of having preventative surgery!
arrrhh
i appreciate you reading through this
from one very worried aussie...
oxoxo
Claire
We have three children and only one has been tested (she is negative). She was pregnant with her third when her Dad was diagnosed. Our oldest has celiac and is at an increased risk for small bowel cancer as well. He is living life raising 5 kids of his own and doesn't spend much time worrying about it. Middle child doesn't say much, but his wife wants to make sure he gets screened. They have 1 child so far.
It might be a good idea to talk with a counselor about your options and feelings and go from there.
Good luck
You did not mention if your father had Lynch Syndrome. Do you know what you have specifically? I have Lynch Syndrome and specifically Muir-Torre Syndrome which is a different mutation than yours. My father had it, my half sister, my nephew, my sone, and my daughter all have it. I was diagnosed five years ago. I have had uterine cancer, colon cancer, and sebaceous skin cancer.
My advice is to get annual screening(s) for the types of cancer(s) your can get. This preventative care can make a huge difference in managing your syndrome. Statistics show that the cancers can be discovered and taken care of with positive results.
I would do a lot of research. This syndrome is not a death sentence but you do need to stay on top of it. Two out of three of my children have Muir-Torre and none of their children have been tested as of now because they are very young. When tested, it is better to know so preventative care can be undertaken.
Peggy
I think that you and I are in very similar places in our life. I will be 31 next month and worried about brining children into the situation. Personally, I decided trying to conceive was a good choice because my own quality of life has been great, and I wouldn't want to rob my future child/children a chance to live because if fear. I think my outlook my be different because every lynch positive person in my family that has had cancer has survived.
Ultimately you and your future husband would be the once to chose, but if you have always wanted to be a mother don't let fear take that from you. Besides, there is the same amount of chance that your baby would be negative.
Good luck and stay positive!
Christie
We don't know if dad was positive or not as he passed before we knew it existed in the family. The doctors say given he was 49 and otherwise in great health, getting such aggressive pancreatic cancer so young is a strong indication he would have been a carrier
My family specifically has the MSH6 mutation.
I guess ultimately it won't stop me from having children e cause gosh who knows where science will be at by the time they are adults and like it's been mentioned, fear can't be the winner.
What screening is everyone having done?
Are cancers being picked up in the early, and manageable stage?
Thank you!
Ox