Need Some Help And Guidance

Hello!  My name is Margie and my father was just diagnosed with colon cancer.  We are still in the early stages of the diagnosis as we do not have a stage or a treatment plan yet, we find out on Monday.

I am up in arms already about the way he has been treated.  When the doctor ordered a CatScan one of the ladies was so rude to my dad.  He literally got in a fight with her and walked out.  No one remembers my dad had an injury 6 months ago at work, and if he lays down he will be in severe pain.....  So after that more tests were run and so on...my dad gets a call.  He is at work and the doctors tell him "You have Colon Cancer, we are not going to operate, and we are going to try a new procedure" the doctor then proceeds to cancel all of my dads appointments.  My dad has to say no I want to keep the Monday appointment so I can atleast talk to you and ask questions.  The doctor so willingly agrees.  So after the cancer doctor calls him, the next day his PCP calls him again at work and goes through the same spill...you have colon cancer etc...  He then tells him "if you had got the Colonoscopy 5 years ago like I had asked it might not be this bad" now what kinda doctor says that!  So now we are seeing the doctor on Monday and we are waiting on an appointment for a biopsy.

My dad called me yesterday to ride with him to pick up some pain pills and to have lunch.  He started making confessions to me.  I had to do everything not to cry.  I felt like he was already feeling like he was going to die.  My dad has always been the guy who everyday when he came home from work and you asked how was your day, he would ALWAYS say "wonderful!" He got so upset with me yesterday saying that these doctors were treating him like a number he felt.  He asked me "where is their compassion Marge?  I ask the same and had no words  of wisdom for him.

My major right now is Nursing and I am thinking twice now after this round of nice medical staff.  I sure hope I get a better taste in my mouth soon.

I decided I was going to take control into my own hands and call Cancer Treatment Center of America.  I read some good and bad things, but mostly good.

I just feel like I am in such a weird place, my head is not on straight, and I just need someone to tell me how I fix this mess for my dad.

I need some help with coping....no one has told us or even tried to help us start to understand this or cope with it as a family.

Thanks for ready my long note..

Margie P.

Regardless of how this turns out, you are ging to need Doctors to help you.  If you are not satisfied with your current Doctors, move to someone else as soon as possible.  Once you get into various treatment plans it will be very difficult to change.  Once you get feedback next week you will be in a better position to decide what direction to go in.  I have been fighting the beast for 3 years and am winning.  It shatters your life when you are first given the news, no matter how and when you get it.  The key is to try to stay positive, fight hard and ask you octors many questions.  Good luck next week.  We will look for additional posts to let us know what is happening so that we can get back to you. 

hey,

I felt the same way  last year when my mother was told she had colon cancer. My mom's cancer is the 4th stage because it reoccurred this year. So far, the chemo has done very well that tumor has decrease and they are considering surgery. My mom went to OB/GYN doctor in December 2007, and he told her that she had a  belly full of cancer, so i know how doctors can be a jerk. What i would suggest is keep praying and try to keep  your  dad's spirits up.  When my mom goes to chemo, the nurse are so nice and information. They inform me of daily test and give me a copy of the results. At chemo, there is a volunteer from non-profiting art institution that has us make jewelry, paint, scrapbook, and etc. I mention this because you have to find a outlet. My mom looks forward to chemo days  so she can paint with the volunteer.You have to find something that you and dad love to do to ease some of the worry during this difficult time. Also, I keep a journal for chemo days. The journal consist of daily thoughts, doctor observations on the chemo, results of all the test prior to the treatment, and poems. Your dad needs for you to be strong. It's ok for you to cry and ask why my love one; I did it for a  year and five month . At your dad's doctor appointments, ask questions and ask questions. Get  more educated cancer to help you better understand the type of the treatment they will use on your dad. Keep me posted about dad.  I keep you dad in my prayers. 

Margie,

Just saw your post. It's now Monday night. Any news from your dad's appointment? Maybe you've already received this bit of advice but here are some things I found helpful:

1. Take a look at your dad's insurance. Can he switch doctors? Does he have to go through a PCP for an okay on all his tests, scans, etc. If he does, try to look into other insurance that will allow his oncologist (or whichever doc is going to be responsible for determining his treatment plan) to be able to order these important blood tests, scans, procedures, radiation, etc whenever he wants them. VERY important that treatments and procedures don't get held up with red tape.   Is your dad eligible for Medicare? If he is, you might want to check out getting him Medicare and AARP. That has been a very good plan for us with my dad. No PCP required and everything has been covered (including the very expensive targeted therapies like AVASTIN, and the multiple PET/CT scans he's had in the last year and 1/2)

2. Do your research as someone else has suggested and see which plans fit you and your dad's needs and personalities.  The American Cancer Society is a good place to start. Careful of all the claims out there to cure, cure, cure. This is a serious disease and it takes time and diligent effort on the part of both patient and professional, not just a one-stop cure offered on the internet.

3.  Find yourself a release person, someone whom you can confess your fears and doubts. Cry to that person, but to your dad, listen and be uplifting. Then go home and cry to someone else, then pick yourself right back up and fight the fight! You can do it!

4.  Chemo treatments can be difficult and long for some and somewhat painless for others, but long nonetheless.  Make sure your dad has company and get the nurse staff on your side so you can be with him, chat with him, pass the time. Be normal, in other words.

5.  If you do not get a doctor who is on your side, ready to fight with you, someone who does not look at you and say, "Well, don't know what we can do for you", FIRE HIM/HER! Fire anyone who doesn't fit your approach to fighting this. This person is going to play a major role in your lives, not just in your dad's treatment decisions, but also through many conversations, hand holding, and advice giving. You don't need a doctor who can't have faith in his own skills as a physician. Tell them what my dad told us when he visited his first oncologist:  I'll die right here in the parking lot, but I'm never going to be seen by that SOB again. Period. We switched insurance companies and doctors on the very next day.

6.  Keep your faith. There are survivors right here on this site that can be living testimonies for you and will help you see there is hope. You go, girl!! Carmen

Today we were told my dad has stage IV Colon Cancer that has spread to his liver, kidney, adrenal gland and some lymph nodes.

My dad is going for a biopsy this Friday.  The doctor said he is not going to operate.  He is going to do a form of chemo/radiation every two weeks.  I just don't know if "I am not going to operate" is good enough for me.  I don't know if I should get a second opinion I don't know.  I don't know what  questions to ask to make sure I am understanding all I need to.  I am just so confused.

 So that's the update.  I am really trying to keep my chin up but damn it sure is hard.  My heart is just aching right now.

 

 I would sit down with this doctor ASAP and ask him/her what they see as the full treatment plan at this time.  Chem/radiation to shrink or eliminate the tumors?  Then surgery?  What type chemo?  That is usualy the plan in these cases.  If you are not satisfied with this doctor, now could be the time to move on.  You have good advice from Argentine and others.  But, keep in mind, once you settle on a doctor, you are going to have to rely on him/her to help you through this. 

Margie,

I am so sorry your Father is not getting the quality care he deserves. I too am disappointed with the medical staff I am dealing with at the moment. I had a biopsy a few weeks ago, which the doctor said he did not feel it was cancer and I did not have anything to worry about. Well, a few days later I received a phone call at home and my doctor said I had colon cancer. I don't know about you but why a phone call, I was alone at home and shocked at the same time. I felt the doctor should of asked me back to his office to go over the tests with my husband so I could have the support of somebody who loved me and knew me. I also had surgery to remove the tumor, after a few days they asked me to come back to do further tests because I was going to require another surgery. Okay, why couldn't they get it done right the first time, no explaination as to why but after my secomd colonoscopy, which I was asleep for the doctor said she would call me tomorrow because she wanted to talk to me when I was conscience. The doctor would not give the information to my husband,so when I did not hear from her a couple of days later I called to speak to her. The nurse said she would give her the message, well to make the story short my doctor went on vacation and I have still to hear back from her. I am left hanging with many questions and my doctor doesn't have the descency to return a phone call. I guess her happiness and vacation was more important. I too feel your pain and frustration. I am seeking a second opinion because I feel I am entitled to quality top knotch care. This is my life and my future I deserve to at least be respected. Good luck to you and your father.

God Bless, Sheryl

 

On 5/3/2008 MargieP wrote:

Hello!  My name is Margie and my father was just diagnosed with colon cancer.  We are still in the early stages of the diagnosis as we do not have a stage or a treatment plan yet, we find out on Monday.

I am up in arms already about the way he has been treated.  When the doctor ordered a CatScan one of the ladies was so rude to my dad.  He literally got in a fight with her and walked out.  No one remembers my dad had an injury 6 months ago at work, and if he lays down he will be in severe pain.....  So after that more tests were run and so on...my dad gets a call.  He is at work and the doctors tell him "You have Colon Cancer, we are not going to operate, and we are going to try a new procedure" the doctor then proceeds to cancel all of my dads appointments.  My dad has to say no I want to keep the Monday appointment so I can atleast talk to you and ask questions.  The doctor so willingly agrees.  So after the cancer doctor calls him, the next day his PCP calls him again at work and goes through the same spill...you have colon cancer etc...  He then tells him "if you had got the Colonoscopy 5 years ago like I had asked it might not be this bad" now what kinda doctor says that!  So now we are seeing the doctor on Monday and we are waiting on an appointment for a biopsy.

My dad called me yesterday to ride with him to pick up some pain pills and to have lunch.  He started making confessions to me.  I had to do everything not to cry.  I felt like he was already feeling like he was going to die.  My dad has always been the guy who everyday when he came home from work and you asked how was your day, he would ALWAYS say "wonderful!" He got so upset with me yesterday saying that these doctors were treating him like a number he felt.  He asked me "where is their compassion Marge?  I ask the same and had no words  of wisdom for him.

My major right now is Nursing and I am thinking twice now after this round of nice medical staff.  I sure hope I get a better taste in my mouth soon.

I decided I was going to take control into my own hands and call Cancer Treatment Center of America.  I read some good and bad things, but mostly good.

I just feel like I am in such a weird place, my head is not on straight, and I just need someone to tell me how I fix this mess for my dad.

I need some help with coping....no one has told us or even tried to help us start to understand this or cope with it as a family.

Thanks for ready my long note..

Margie P.

 

Hi  I sorry your dad has Cancer I have prosteate cancer. I been fighting it for a while now. If you dont mine  I like to give your mum some advice that was givein to me a while. I now know it saved my life. To start with  If you  fighting cancer: avoid eating any Sugar or thing with Sugar in it. As Cancer loves sugar. this is very importent as Eating sweets Sugar will feed the cancer you trying to fight.  Do take a half tea spoon of Bi-Carb soda in a half class of water between meal times to change your PH leval As Cancer love an acid envirament. Start taking 1000mg aday  of Vitamin C. than over the next few months  build it up to 5000mg of vit C a day or a high as you can stand it.Avoid eating proscess meat As Cancer love protien. Get on the internet go into google and tipe fighting cancer and/or buy a book about Foods that fight Cancer I know all this will help as it has help a lot of people that I know.

 May god go with you and guide you