hnpcc
michelle
Comments
-
I hear ya!
My onc actually told me she did had the lab do a staining on my biopsies looking for some kind of genetic or hereditary that lead me to have it, since I never had anyone die in my family from colon cancer..my dad died at 46 from liver cancer, that spread to his colon, he was an alcoholic though, and had liver cancer before, I heard when I was little, they took all the cancer out and told him if he even continued to drink, he could get it back, but of course he kept drinking, he owned a bar which didn't help, but I was surprised she went to check that out for herself, the genetic testing and told me it wasn't heredity, I just got it, and well, guess it has to start somewhere right? she also told me to have my children screened by the time they are 30, since it happened to me so young.
I am so sorry to hear about Angel, just when you get start feeling better, boom, it knocks you down, I hope they can help him with his pain, I so wish I was there to just give yas both hugs, and I'd definitely be concerned with my kids as well if his mom had it as well, I am trying to drag my hubby to get screened, he is 38 and I know he has problems with his bowels, he takes laxatives and Miralax as well, and want him to go, since his grandfather just died of colon cancer a few years ago (he was almost 80, and just quit on the chemo, didn't want it anymore but lasted a couple years with it), his aunt just had surgery on colon cancer, and they got it all, so, so far she is NED, but is scared to death of a recurrence, and his brother I know is like hubby...always constipated, they really need to go.
Tell Angel I hope he feels better soon, I am praying hard for him and you as well, you are such an awesome caregiver, and I hope you are taking care of yourself also, I know how hard this is, and still hope for the miracles!
Hugsss to you!
~Donna0 -
I am so sorry.. I hope his
I am so sorry.. I hope his pain lets up, he has suffered so much. I am concerned about genetic testing for my children and grandchildren too. It is very expensive and insurance doesn't pay for it easily. Since I had colon cancer and so does my hubby I worry a great deal about my children, and there children. Keep me posted as to what you find out.
Gail0 -
DonnaShayenne said:I hear ya!
My onc actually told me she did had the lab do a staining on my biopsies looking for some kind of genetic or hereditary that lead me to have it, since I never had anyone die in my family from colon cancer..my dad died at 46 from liver cancer, that spread to his colon, he was an alcoholic though, and had liver cancer before, I heard when I was little, they took all the cancer out and told him if he even continued to drink, he could get it back, but of course he kept drinking, he owned a bar which didn't help, but I was surprised she went to check that out for herself, the genetic testing and told me it wasn't heredity, I just got it, and well, guess it has to start somewhere right? she also told me to have my children screened by the time they are 30, since it happened to me so young.
I am so sorry to hear about Angel, just when you get start feeling better, boom, it knocks you down, I hope they can help him with his pain, I so wish I was there to just give yas both hugs, and I'd definitely be concerned with my kids as well if his mom had it as well, I am trying to drag my hubby to get screened, he is 38 and I know he has problems with his bowels, he takes laxatives and Miralax as well, and want him to go, since his grandfather just died of colon cancer a few years ago (he was almost 80, and just quit on the chemo, didn't want it anymore but lasted a couple years with it), his aunt just had surgery on colon cancer, and they got it all, so, so far she is NED, but is scared to death of a recurrence, and his brother I know is like hubby...always constipated, they really need to go.
Tell Angel I hope he feels better soon, I am praying hard for him and you as well, you are such an awesome caregiver, and I hope you are taking care of yourself also, I know how hard this is, and still hope for the miracles!
Hugsss to you!
~Donna
Beg your husband to go,and your brother in law also, prevention is the key. You take care.
thanks
michelle0 -
gailGlv49 said:I am so sorry.. I hope his
I am so sorry.. I hope his pain lets up, he has suffered so much. I am concerned about genetic testing for my children and grandchildren too. It is very expensive and insurance doesn't pay for it easily. Since I had colon cancer and so does my hubby I worry a great deal about my children, and there children. Keep me posted as to what you find out.
Gail
will do
michelle0 -
Michelle,
You are wise to
Michelle,
You are wise to follow up on the genetic testing. I don't know what the insurance company will do but you can push them really hard with the help of your doctors. Experienced genetic docs know how to work with the insurance (we have had to do this with our 12 year old who has special needs).
I pray that Angels pain decreases and that he can have a good weekend. I am thinking of all of you.
Aloha,
Kathleen0 -
thank youKathleen808 said:Michelle,
You are wise to
Michelle,
You are wise to follow up on the genetic testing. I don't know what the insurance company will do but you can push them really hard with the help of your doctors. Experienced genetic docs know how to work with the insurance (we have had to do this with our 12 year old who has special needs).
I pray that Angels pain decreases and that he can have a good weekend. I am thinking of all of you.
Aloha,
Kathleen
Kathleen.0 -
I also hear you, Michelle!
I am absolutely amazed that you can think this clearly right now to get the paperwork you need to have your children tested. Now that is a super Mom at work!
Don't even get me started on what I think of the insurance business where you have to literally beg, borrow, steal, make up things if you have to just to safeguard your family. I don't understand the mentality of insurance companies... they won't pay for something until it's too late and now someone has been diagnosed (and then the expenses really start mounting). So much money would be saved with the preventative screening done BEFORE there's a problem!
I don't know what I can say or suggest to ease Angel's pain. It saddens me in this day and age where they specify that no one should be uncomfortable or suffering during treatments that... once someone IS in pain because of this disease, where are all these wonder drugs that should be able to block the pain?
I hope they find the right dosage of the right pain med to keep him comfortable!!
Huggggggs,
Cheryl0 -
Cheryl ( cute hair cut )CherylHutch said:I also hear you, Michelle!
I am absolutely amazed that you can think this clearly right now to get the paperwork you need to have your children tested. Now that is a super Mom at work!
Don't even get me started on what I think of the insurance business where you have to literally beg, borrow, steal, make up things if you have to just to safeguard your family. I don't understand the mentality of insurance companies... they won't pay for something until it's too late and now someone has been diagnosed (and then the expenses really start mounting). So much money would be saved with the preventative screening done BEFORE there's a problem!
I don't know what I can say or suggest to ease Angel's pain. It saddens me in this day and age where they specify that no one should be uncomfortable or suffering during treatments that... once someone IS in pain because of this disease, where are all these wonder drugs that should be able to block the pain?
I hope they find the right dosage of the right pain med to keep him comfortable!!
Huggggggs,
Cheryl
He Just got back from pain center they uped the pain dosage so we will see but i can tell in his voice that he is in bad pain. The two worst things for me to see angel going thru now is the vomiting and the pain. Because I cant help to ease either one.For gods sake he is dying why does he have to be so sick too.
michelle0 -
I can't get over this!angelsbaby said:Cheryl ( cute hair cut )
He Just got back from pain center they uped the pain dosage so we will see but i can tell in his voice that he is in bad pain. The two worst things for me to see angel going thru now is the vomiting and the pain. Because I cant help to ease either one.For gods sake he is dying why does he have to be so sick too.
michelle
I tell you, I know people who have died from this disease, and they were not vomiting or in pain, hospice made them very comfortable, and they went peacefully, I don't know if your hospice there or doctors just suck, it makes me so angry hearing about this, because he doesn't have to be in this torture, they have medicines for that, and medicines to make him comfortable, I hope it kicks in with the pain meds, They have tranquility centers for hospice care, when people are in end stages, to help them be comfortable, I wish they had that for you, I so feel your pain, and cry for both of you, I know how hard it is to watch this, I watched my father, he wasn't in pain, but this was 1986, and not much was being done for his cancer, he waited to long, and was too late to do anything for him, they did make him stay sleepy, and out of pain, where he died peacefully in his sleep, it's all in the care of the hospice and those doctors...I can't see why they can't or aren't helping him more!
Hugggs to the both of you!
~Donna0 -
Sorry
Sorry he feels so bad. I too wish that he would be able to go ride on his bike this weekend. That can make a person feel so good to be able to do something that they love so much. I'm praying that he gets that pain relief that he needs and deserves so much.
Kim0 -
That's awful
I'm sorry Angel's in so much pain. I hope they can figure out a way to ease this for him. He'd feel better, and I know you would,too. It must be awful for you to see him like this and not having anything you can do about it.
*hugs to you both*
Gail0 -
HNPCC and stuff...
Hello Michelle ~
I'm sorry Angel, you and his sons, and the rest of your families are going through what you are. I'm so very sorry Angel is struggling so much...I will certainly keep all of you in my best thoughts and prayers.
I thought I would share some thoughts with you about HNPCC since me and my family have it. I had the same thing as Angel - from my pathology report, "...high levels of micro-satellite instability indicative of defective DNA mismatch repair function." AKA genetic mutation, which after genetic testing was confirmed to be HNPCC - MSH-1 - mismatch repair gene mutation (I was diagnosed with Stage III colon cancer at 42). I inherited this condition or syndrome from my mom (a four time cancer survivor, including colon cancer twice, lung cancer and cancer of the mediastinum - all primary cancers). Mom inherited HNPCC from her mother who died at age 46 of breast cancer. Thankfully, my mom is very healthy and is currently cancer free.
Based upon my experience and what I have learned, I thought I might share some of my thoughts with you and Angel about living with HNPCC...
When I was diagnosed with HNPCC, my mom followed and tested postitive. After her positive result she thought the whole family (mom's side) should get tested, but it's such a sensitive subject. From what I've learned and how I now feel now in having the gift of the last few years to consider genetic testing, I believe genetic testing is a highly personal decision that should be left to each individual family member without undue influence from anyone - to test or not to test.
As for my family, my uncle and cousin were tested and both had positive results. My uncle is 74 and has NEVER had cancer! Good news, yes? My other cousin, my uncle's daughter elected not to test, but has had a colonoscopy - she is 48 years old. My two brothers have thus far elected not to be tested, but upon my insistence, receive colonoscopies every two-three years. I support their choice not to test, but with the suggestion that they assume they are HNPCC positive and maintain health screenings as if they in were HNPCC positive. I also encourage their children to do the same should they also elect not to test. My 19 year old niece has expressed interest in being tested, but we encourage her to give a couple of years - we have told her to be aware of symptoms and will encourage her to have her first scope by age 25. My brother's other three children are too young as of now, but "the cancer talk" will come when it's appropriate. I have no children.
As for Angel's boys, I would recommend all of you go for genetic counseling together and allow your sons the freedom to choose for themselves if they wish to be tested.
There are certain things to consider. Things like will knowing make life better or not? For instance, if your son(s) unfortunately tested positive would he/they end up worrying and waiting for cancer to come, even though it may not, like my 74 year old uncle? Can you imagine a lifetime of worrying about something that may or may not happen? Or if thankfully, they test negative, but don't screen appropriately and get colon cancer or some other type of cancer anyway? One out of every two/three men will develop some type of cancer at some point in their lives and the larger percentage do not have an inherited cancer, so getting a negative HNPCC result does put one in the all clear.
So what I'm saying is, a positive result is not a guarantee the person will get cancer, and a negative result doesn't mean they won't. Safest thing to do for your sons is to follow careful health monitoring with colonoscopies every two-three years starting now. Yes NOW!!! Both should get scoped right away regardless of any genetic test result.
Another thing to think about is how would a genetic test result serve your sons - would the information be beneficial or detrimental? Last year in May Congress passed H. R. 493, Genetic Information Nondiscrimination Act(GINA)2008, and was later signed by President Bush, putting into law that insurance companies and employers could not discriminate against persons with genetic conditions, such as inherited cancers. This was a huge victory for people like us with HNPCC, however call me cynical, we cannot know if future legislation might overturn this great law. I wonder if this could happen if we do end up with a change in health care policy, such as government subsidized health care. For me it wouldn't matter - I've already had cancer, but for my brothers who have not, better not to have that in their medical records. You could test privately and anonymously, but genetic testing is quite expensive for the primary patient, but much less expensive for those who follow the primary patient since the testing lab knows exactly where the mutation is located on DNA.
Only you, Angel and your sons, and the rest of your family, can decide what is right for each of you. Either way, I strongly suggest all of you get genetic counseling first before deciding - your hospital or cancer center probably has one on staff or could at least recommend someone.
So that you can do some of your own homework and possibly come up with questions for your doctors and counselors, I suggest you look at all the information available right here at American Cancer Society's website, but to supplement their invaluable information I have attached a few links below that have excellent information about genetic testing and HNPCC. Check them out. If there is anyway I can help you further, please do not hesitate to ask - I'm here for you...
Keeping you, Angel and your families in my heart, thoughts and prayers...
Katie
Cut and paste the links below into your web browser to view. If you have any problems with the links, let me know and I can resend them to you:
This site offers a nice slide show about genetic testing:
http://www.cancer.gov/images/understandingcancer/PDFs/GENETEST.PDF
This site offers a slide show about genetic counseling:
http://www.nsgc.org/client_files/GuidetoGeneticCounseling.pdf
This site offers lots of good info on HNPCC-Hereditary Non-Polyposis Colon Cancer AKA Lynch Syndrome:
http://ghr.nlm.nih.gov/condition=lynchsyndrome#definition
This site also offers lots of good info on HNPCC and you can sign up for a newsletter:
http://www.coloncancerfamily.com/LynchSyndrome/LynchSyndrome[10002].html
And last, but certainly not least, one of the best articles I've come across - It's an article published by Journal of American Medical Association that I share with every doctor I have. I recommend you print it and share it with your family and with the family doctors. I like the AMA recommended screening protocols featured on page 8:
http://jama.ama-assn.org/cgi/reprint/296/12/1507
Again, let me know if I can help further...all my best to you and yours...0 -
One more thing...
I noticed in your original post where you stated, "my children have a 50% chance of getting colon cancer if it shows that angel is positive for hnpcc."
If I may, if Angel does test positive for HNPCC, your boys may not necessarily have a 50% chance of getting colon cancer, but rather will have a 50% chance of having HNPCC (not cancer - it's a syndrome that puts a person at greater risk for cancer than the average person). If your boys decide to test and test positive then their colon cancer risk is very high, but like I said before, a positive test doesn't mean they WILL get cancer, it just puts them in the very high risk category. If your boys test and they test negative it puts them at a more high-average risk category, but in no way should that keep them from getting screened early and regularly.
This is why genetic counseling can help you - it may clarify things for you and hopefully make you less fearful. Living in fear is no way to live. I do have HNPCC and have had cancer, but I refuse to yield my happiness and sense of well being to it. My mom taught me to live life with cancer, happily, in spite of it!
Either way, your boys need to get those colonoscopies!0 -
HNPCC
Michelle, I am so sorry to hear that Angel is still in so much pain. It seems there should be some way to make him more comfortable. I pray for your both.
Regarding HNPCC, it is in my family on my mother's side. There has been so much early cancer in her family, but for some reason no red flags came up until I got my cancer and my onc requested permission to do genetic testing. Now everything is much clearer. Both my sisters were tested and they are positive for HNPCC as well. I have had colon & endometrial cancer, my older sister has had endometrial cancer and is currently battling breast cancer. My younger sister has been blessedly cancer-free so far, but is checked for everything every year.
I know this sounds awful, but I have been pleading with my family to stop breeding. This gene mutation is so wicked, I don't see knowingly having kids who will have to deal with cancer & possibly pass it on to even more children. Everyone laughs at me, but until there is real, accessible gene therapy or gene replacement therapy, why condemn someone to suffering before they're even born?
I'll get off my soap box now. I just wish Angel could have some peace now and not have to deal with this pain. Bless you both.
Hugs,
Kirsten0 -
usakatusakat said:One more thing...
I noticed in your original post where you stated, "my children have a 50% chance of getting colon cancer if it shows that angel is positive for hnpcc."
If I may, if Angel does test positive for HNPCC, your boys may not necessarily have a 50% chance of getting colon cancer, but rather will have a 50% chance of having HNPCC (not cancer - it's a syndrome that puts a person at greater risk for cancer than the average person). If your boys decide to test and test positive then their colon cancer risk is very high, but like I said before, a positive test doesn't mean they WILL get cancer, it just puts them in the very high risk category. If your boys test and they test negative it puts them at a more high-average risk category, but in no way should that keep them from getting screened early and regularly.
This is why genetic counseling can help you - it may clarify things for you and hopefully make you less fearful. Living in fear is no way to live. I do have HNPCC and have had cancer, but I refuse to yield my happiness and sense of well being to it. My mom taught me to live life with cancer, happily, in spite of it!
Either way, your boys need to get those colonoscopies!
you are right. I will do more research just found out last nite that angels mother had colon cancer at 50 her father had skin cancer and died at 45 and her grandfather had stomach cancer and died before 50.So i am sure it is heriditary i will find some answers.
michelle0 -
kirstenkmygil said:HNPCC
Michelle, I am so sorry to hear that Angel is still in so much pain. It seems there should be some way to make him more comfortable. I pray for your both.
Regarding HNPCC, it is in my family on my mother's side. There has been so much early cancer in her family, but for some reason no red flags came up until I got my cancer and my onc requested permission to do genetic testing. Now everything is much clearer. Both my sisters were tested and they are positive for HNPCC as well. I have had colon & endometrial cancer, my older sister has had endometrial cancer and is currently battling breast cancer. My younger sister has been blessedly cancer-free so far, but is checked for everything every year.
I know this sounds awful, but I have been pleading with my family to stop breeding. This gene mutation is so wicked, I don't see knowingly having kids who will have to deal with cancer & possibly pass it on to even more children. Everyone laughs at me, but until there is real, accessible gene therapy or gene replacement therapy, why condemn someone to suffering before they're even born?
I'll get off my soap box now. I just wish Angel could have some peace now and not have to deal with this pain. Bless you both.
Hugs,
Kirsten
I am scared for my family and my 2 grandkids. thanks for thinking of angel
michelle0 -
Too much cancer to many tumorsShayenne said:I can't get over this!
I tell you, I know people who have died from this disease, and they were not vomiting or in pain, hospice made them very comfortable, and they went peacefully, I don't know if your hospice there or doctors just suck, it makes me so angry hearing about this, because he doesn't have to be in this torture, they have medicines for that, and medicines to make him comfortable, I hope it kicks in with the pain meds, They have tranquility centers for hospice care, when people are in end stages, to help them be comfortable, I wish they had that for you, I so feel your pain, and cry for both of you, I know how hard it is to watch this, I watched my father, he wasn't in pain, but this was 1986, and not much was being done for his cancer, he waited to long, and was too late to do anything for him, they did make him stay sleepy, and out of pain, where he died peacefully in his sleep, it's all in the care of the hospice and those doctors...I can't see why they can't or aren't helping him more!
Hugggs to the both of you!
~Donna
Donna He has tried all the nausea meds and he had the pain pump turned down a few times to see if that helped and i think it did for about 2 weeks. But since monday he is hurting again in the belly area had the pain pump turned up yesterday. sleeping a little more. still in pain but not a 10 more like a 7. The hospice people are the ones trying all these different nausea meds they finally said it could be the cancer causing the problems. he has so many tumors on the outside of the small and large intestines the are wraping around the kidneys it is a mess in there.so the pain can be a number of things but i think the tumors are growing and it is caising bad pains. thanks for you thoughts donna take care
michelle0 -
Classic HNPCCangelsbaby said:usakat
you are right. I will do more research just found out last nite that angels mother had colon cancer at 50 her father had skin cancer and died at 45 and her grandfather had stomach cancer and died before 50.So i am sure it is heriditary i will find some answers.
michelle
Hello again, Michelle ~
Angel's family shows the classic HNPCC family history - colon, stomach, skin (among others) are all HNPCC/Lynch Syndrome I & II cancers. With a family history like that it probably is HNPCC.
I know what an emotional time you are going through...finding out something like this on top of Angel's cancer. But now you and your family have the gift of knowledge, which is a stinky consolation prize, but you can't change what is...only how you deal with it. With the new found knowledge of Angel's family history, Angel's blood relatives can and should practice hyper-awareness and diligent health screenings regardless of any test result - see page 8 of that JAMA article I posted above to see what the recommended screenings are.
I understand Kirsten's comment about families with HNPCC should not have children, but as a child with HNPCC - I got it from my mom - even with cancer, HNPCC, teeth that needed braces when I was a kid, vision problems, arthritis, and a bunch of good stuff too, I'm glad and very grateful I'm here...I'm glad I was born and received the gift to be alive with everyone I love and experience the wonderful world we live in. My hope for the future is there will be a fantastic discovery that will help people with genetic conditions to repair defective genes that is ethical and not terribly invasive to patients. Hope is good...0 -
I'm still praying for Angel and youangelsbaby said:kirsten
I am scared for my family and my 2 grandkids. thanks for thinking of angel
michelle
I just read all these posts. I guess I don't have a whole lot of info to give on this genetic testing thing. As Katie pointed out, however, having the genetic tendency for this doesn't mean for sure your boys will get cancer. I know it's a horrible worry to have, though. I had the genetic testing done and I tested negative, thankfully. Even so, my doctor said my kids should still get their first colonoscopy a minimum of a decade before the age I was when my cancer was found. I was 41, so that means at age 31 for my kids. I still kind of wonder why, if I tested negative for this genetic syndrome (my tumor was on the left side and I have no family history of cancer). My doctor pushed for the genetic testing because of my young age of getting it and said sometimes, even when there wasn't a genetic tendency already, a mutation can occur and set the genetic tendency down from that point forward. I'm actually surprised my HMO paid for the testing when I had no family history of it, but my doctor said the genetic testing is becoming more standard now- even when there wasn't a family history- when the age of the cancer's onset is younger than the "typical" 50 (which we all know here on this board isn't so typical anymore- many people younger than that seem to be getting this kind of cancer in recent years).
Well, Michelle, I'm still praying hard for Angel and for you. You're so strong, and I will pray for you to have continued strength even when you feel like you can't go on anymore.
I agree with some of the others about the genetic testing being a personal matter. They know the risk is there, but worrying about and waiting for it to hit would be a constant underlying stress that they would have to deal with. I'm sure it will be somewhat that way anyhow, but perhaps testing positive would make the mental anguish of it worse. As long as they watch for symptoms and get the colonoscopies early.
Take care,
Lisa0 -
Lisalisa42 said:I'm still praying for Angel and you
I just read all these posts. I guess I don't have a whole lot of info to give on this genetic testing thing. As Katie pointed out, however, having the genetic tendency for this doesn't mean for sure your boys will get cancer. I know it's a horrible worry to have, though. I had the genetic testing done and I tested negative, thankfully. Even so, my doctor said my kids should still get their first colonoscopy a minimum of a decade before the age I was when my cancer was found. I was 41, so that means at age 31 for my kids. I still kind of wonder why, if I tested negative for this genetic syndrome (my tumor was on the left side and I have no family history of cancer). My doctor pushed for the genetic testing because of my young age of getting it and said sometimes, even when there wasn't a genetic tendency already, a mutation can occur and set the genetic tendency down from that point forward. I'm actually surprised my HMO paid for the testing when I had no family history of it, but my doctor said the genetic testing is becoming more standard now- even when there wasn't a family history- when the age of the cancer's onset is younger than the "typical" 50 (which we all know here on this board isn't so typical anymore- many people younger than that seem to be getting this kind of cancer in recent years).
Well, Michelle, I'm still praying hard for Angel and for you. You're so strong, and I will pray for you to have continued strength even when you feel like you can't go on anymore.
I agree with some of the others about the genetic testing being a personal matter. They know the risk is there, but worrying about and waiting for it to hit would be a constant underlying stress that they would have to deal with. I'm sure it will be somewhat that way anyhow, but perhaps testing positive would make the mental anguish of it worse. As long as they watch for symptoms and get the colonoscopies early.
Take care,
Lisa
Your right.
michelle0
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