I'm done with PC, I HATE IT!

Why is this the least researched cancer?  Why is the research back were breast cancer research was in the 1930's?  Last time I checked it's 2009!  My mom is fighting, fighting strong, but I am mad.  Mad that there are not as many choices with this compared to any other cancer.  It's my mom, and I love her so much I hate to see this all happen in our lives.  I need to express my anger, and this is where I can I guess.  My whole life has stopped because of my mom and my love for her.  I hate that there isn't more i can do.  I HATE PC CANCER! 

Dear Frustrated,

I am so sorry for what your Mom is living with and that you have to watch helplessly from the sidelines.

I am not sure if your question was rhetorical or if you really want answers.  In case you want to know, this cancer does not get research funds because, relative to breast or colon cancer, far fewer people are afflicted with pc.  And the sad truth is that most patients who are diagnosed with pc do not survive to become advocates for finances for additional research.  There is a huge breast cancer lobby and almost none for pc because all the patients are dead.

There is an organization called PanCan which is devoted to research, pc patients and disseminating info.  Their phone number is toll free 877-272-6226; they are open between 7 AM and 5 PM Pacific Time.  They will send you a packet of data that you can't get anyplace else.  They also offer PALS who will speak with your Mom via phone or e-mail.

I also suggest you visit the Johns Hopkins Online PC Support Board; there are both patients and caregivers with awesome support and knowledge they will share with you.  You can google the name for their web address.

Pc is a terrible cancer that, due to it's nature, is most often far advanced by the time of diagnosis.  But you can help your Mon by learning all you can about it; knowledge is power.

Good luck to your Mom in her quest for healing.  Be there for her and we will be here for you.

Joan L

I am very sorry for you & your mom. As far as I know with pc you have a few choices. It is lousy but we are stuck with it. If it helps I just had my first 6 month check up & I am cancer free. I don't know where your mom lives but try mskcc.org , johnhopkinscancercenter.com , or  mdanderson.org. They are the top 3 cancer centers in the country, if not the world. God Bless you and your mom & I will keep you in my prayers ..........................  Gerry B

I agree. My dad passed away from PC a little over 2 years ago and I'm still frustrated with myself that we didn't pursue other options. We went to the University of Michigan, as it was the closest "major" medical center to us. Dad didn't want to travel any farther, but I really wish I would have pushed for Sloan-Kettering in NYC or possibly MD Anderson in Houston. That's my advice, if your mom is willing and able to travel.

Yes, I agree with Gerry B. Johns Hopkins is a really good option as well. I'm reading more and more about PC lately (just interested in it now, even though it is too late for my dad obviously) and I'm just so impressed with Sloan Kettering and Johns Hopkins.

Amy,

Most people who follow developments in the pc world would not agree that Sloan is one of the best institutions for treating pc.  This includes loved ones of their former patients.  M D Anderson, Dr. Fine @ Columbia in NYC, Dr. Picozzi @ Virginia Mason and Hopkins are considered excellent.  Personally, I would vote for Dr. Fine; he has kept many patients alive far longer than their prior docs had given them.  Of course, there are many good hospitals that treat pc, but it is such a terrible disease, patients deserve the very best.

Joan L

I feel your pain. Really I do. Spend as much time with your mother as you can, be there for her and yourself, get rest. Plenty of rest. Do things to get your mind off of it sometimes. I love my mom very much also, She fought a short battle with PC also. I hate it too. I dont understand how its not more researched either. I think its up to people like you and I to sand up for our loved ones and make some research happen. I wish you the best of luck, AND I wish for a miracle for your mother. Im praying for you. I know how hard this is.  And they say education is the best weapon... educate yourself. Read read read!! You might learn of some treatment they arent trying. Thats the best way to help your mom.

Best wishes.

Thank you all for your thoughts.  It's nice to know that others are out there in similar situations.  We live in MN, and we did go to Rochester Mayo at the beginning.  That is an hour away for us one way.  That was too much for my mom.  She just wanted to stay close to home.  So that is what we are doing.  Tomorrow we are meeting with the Dr, for the second time.  I'm assuming we will go over the PET scan results, and come up with a plan for a port being placed and chemo. 

As for spending time with her, I have, and it's the best thing in the world.  Right after dx, when she was still feeling good, and we were inbetween Dr appts, we decided as a family, to up and go to Hawaii for a week.  Just my dad, mom, brother, myself, and my daughter.  It was the best week ever.  When we got back the appts started back up agian, and here we are.  That is something I would recommend to anyone who can do it. 

It is hard to be there everyday, day in a day out, but I don't want to miss anything, and I love the fact that my mom is able to spend all this time with her only grandchild.  It's hard to be a caregiver, but I can't see myself anywhere else right now.  It just sucks that in 5 minutes, all of our lives were flipped upside down, and it's a lot to take in in such a short amount of time. 

As a PC patient fighting this awful disease for almost 18months now, I will suggest a place no one has in the other replies, Cancer Treatment Centers of America, Zion IL.  I started out at MD Anderson for the first 9 months and then they had nothing else to offer and gave me very little hope.  I changed over to CTCA and they have been great.  They offer the most positive atmosphere I have seen in any of the facilities I've now been involved with.  Unfortunately for me thought we have ran out of chemo options at this point so I am in the process of researching clinical trials.

 

You, your Mom and your whole family need to keep a positive attitude as that is such a huge part in winning this battle.  It's difficult to do I know but it has certainly been a big part of what has kept me alive and doing so well so far.  I will say this, definitely contace PanCan, Pancreatic Cancer Action Network (PanCan.org) and they can provide you with so much helpful information on this disease, best locations for treatments, how you can become an advocate in the fight for more funding.  They are a great organization.

 

Good luck, keep your faith and a positive attitude.

 

Doug in North Carolina

I hate PC too!  It is a horrible insidious disease, you are almost dead before it is diagnosed.  But Pan Can is a good organization.  They are doing good work and just met in Washington to ask for funds and got some.  So, I think we are now on the radar for help.  May God Bless you and Your Mother.