View Full Version : Results from genetic counseling are in..

Mackey Mouse
12-22-2006, 07:11 AM
Late afternoon, my husband talked with the genetic counselor/doctor at Mass General to see if he had the gene that passes pancreatic to his family..

Thankfully, and he is so relieved, he does not. Why he has what he has, who knows?? But the mutation was not there so his daughters do not have to live with that fear hanging over their head..

But there has to be some reason why cancer runs in families, the list on his side is mind boggling, mother, father, sister, brothers, grandfathers, grandmothers, uncles, aunts, it is an extensive list, but the mutated gene for this type of cancer was not found in his dna.. so one blessing this Christmas for our children and future grandchildren..

12-22-2006, 07:33 AM
That's really good news for you guys. You sure didn't need that kind of 'guilt' hanging over your heads along with the disease itself. Now Tommy doesn't have to worry about passing it along....that's such a relief!!!

12-22-2006, 08:55 AM
I am so glad to hear he doesn't have the gene. That is one bright spot. Hugs and prayers for your holiday. Mackey, I know you will have a wonderful time with your family on Christmas.

12-22-2006, 09:16 AM
That has to be a huge relief :grouphug: Cancer runs in my father's family--every one of my grandmother's 7 siblings died of cancer(colon,lung,breast, and leukemia) and my father died of lung cancer. Several of his cousins died of cancer :sad2: -+

12-22-2006, 11:01 AM
That is very good news Marsha and a great relief for you I'm sure!

12-22-2006, 02:30 PM
I just found the coping and compassion board and wanted to say I am very sorry for what you're going through. :grouphug:

I also have a question...my mom died of pancreatic cancer 8 years ago. Is this genetic? That's what it seems from your post...and it terrifies me! MY father is now dying of colon cancer. No one else in the family has had cancer - not yet anyway - just my parents. Do I have serious cause to be worried?

Mackey Mouse
12-22-2006, 04:34 PM
It can be genetic, that is why we did the testing. It does not mean that your Mother had the gene that she passed to you through DNA though as my husband did not have it.

I am sorry to hear about your Mom passing of Pancreatic, it has a 98% mortality rate, evil cancer that it is, one of the Disers here sent me an article from the Lustgarten foundation that in 10 years time they may have a vaccine to stop this one.. That would be great.

I am sorry about your Dad having colon cancer too....hugs to you.. I am not sure how old you are, but if it were me and I had this family history, I would follow with my GP and request a routine endoscopy, colonoscopy, etc so that you have a baseline on file. Maybe ask for an appt with a gastroentrologist.

Both my parents died of heart related issues, I do everything in my power not to follow in those footsteps.. exercise, eat right, and check ups... I have high cholesterol so I take medication for that, it was not available when my parents were having issues..

Please pm me if you need to talk, or if you have questions, post here, we will all try to help you.. I would ask your Dad's doctors what you should be doing.. Holidays are so difficult when someone is ill, I will keep you in my prayers..


12-24-2006, 08:09 PM
Thank you so much for the response and kind words. I am only 38 years old so I am not sure if they'll do some of those tests on me or not. My sister (52) is going to schedule herself for all those tests after the holidays pass. I have two other sisters though (54 and 47) who are not planning on that.

God Bless you and your DH. :santa:

Mackey Mouse
12-25-2006, 11:48 AM
I would discuss your family history with your GP and see what he thinks... clearly after 50 is what they say now for colonoscopy and/or endo with no family history..

I think you are right to have questions and I would follow up with my own doctor. Your sister who is doing the tests is doing the right thing, they say after 50 is when they want you to start having those tests..

Hugs and Merry Christmas to you.....I guess I would give you the same advice I give my three daughters, some close to your age, know your own body, if you are not feeling well, get to the doctor and speak up for what you need.. If you know something is not right and the doctor is not hearing you, then push for what you need done.. If that means testing, then so be it..

Right now, I have issues with doctors who are not listening to their patients, but rather they are listening to the insurance companies telling them not to order expensive tests. If it means saving someone from unnecessary illness, then the tests should be done.

12-30-2006, 10:39 AM
I'm so glad to hear this Marsha. I'm sure its a huge relief for you. :grouphug:

12-30-2006, 03:34 PM
This is an interesting thread. I'm happy for you about the gene not being present in your DH, but it's that mixed kind of happiness that comes with knowing why he was tested.

My mom died of primary brain cancer 9 years ago on New Years Day. She is the only one on that side of my family that has had cancer of any kind. My sister is convinced that my Mom's habit of going on and off estrogen for 20 years caused it. I'm convinced it was smoking, and the carcinogens that circulate through your blood got thru the blood/brain barrier and caused the cancer.

But what I'm wondering about genetically is this - with an immune system disorder such as Graves Disease - more specifically TSI antibodies, like I have - it is genetic, but it's not one specific genetic marker. It is a number of them. And you have to have all of them to have the disease. If you are missing just one, you simply don't have it. So I probably got some from Mom and some from Dad. (Thyroid issues run with the women on her side of the family, from her father's side.)

And another genetic disease I have, it is one specific gene that is defective. I got it from Dad. So I'm a Carrier, and could be affected, but not like if I had both genes and had the full blown disease. Plus, there are different phenotypes of the gene. I have the M (normal) and the Z (makes very little of the enzyme). There is also an S (makes some) and a null (makes none). And then, within the Z, S and Null, there are more variations! So you have vastly different levels of the disease (it's called Alpha-1 Antitrypsin Deficiency), depending on your phenotype and the sub-type.

I wonder if some cancers are the same as either of these?

01-03-2007, 03:55 PM
I thought you might be interested in this article I just found...
http://news.sawf.org/Health/29578.aspx (Common blood pressure pills may block spread of pancreatic cancer)


Mackey Mouse
01-03-2007, 06:29 PM
First thanks for the link, I printed it out and will bring it with us to our doctor appointments. I had heard this that these types of cancers set up their own blood supply, horrifying..

Also, the genetic testing they did on Tom they were looking for a specific mutation that they had isolated for pancreatic cancer......I am concerned for my children and their children, but cancer runs in his family....the list is huge starting with his Mom and Dad and then his sister and brother.....uncles, aunts.. and there you go.. but no pancreatic that we know of..

Actually Tom's cancer is called ampullary carcinoma, so rare, that it does not have its own grouping and falls under pancreatic.....

His platelets are low and he is tired, but in the best mood...just sharing..

01-03-2007, 09:00 PM
His platelets are low and he is tired, but in the best mood...just sharing..He sounds like an amazing person, and so do you! I wish I had the pleasure of knowing you both. I lost a very dear friend to this monster disease in July. I hate it so much!

Mackey Mouse
01-04-2007, 07:22 AM
I hear ya Tru Blu... I hate it too... I have seen what it does to people we have had treatment with... I have watched people choose no treatment and just walk out the door of the hospital, one woman comes to mind, beautiful, you would never know she was sick, but it never left her body. She had the *******, further treatment as my husband did, but she never saw any clearance whatsoever. I remember on the last day of Tom's treatment and follow up on his scan, she was there and seeing the doctor and told me ....she asked me not to tell my husband and to let him enjoy his day of last treatment and being clear of the cancer. This is before I knew about the term floating metaseses, to have this cancer go away for good is a miracle......she had opted for no more treatment, she would try alternative and live her life. I reached out and grabbed her hand wished her luck and watched her walk out of the hospital with dignity with tears in my eyes. I never told my husband that day.....I did tell him later on, but not on that day..