Help Mom Doesn't Know But I do

SPENCER1958 · Regular Joined: 11 Oct 2007 Posts: 12

I feel so bad!!!! Mom's Doctor called me today and said that she has pancreatic cancer, when I asked about the stage he didn't give me a # he said it was "Advanced Stage" and told us to go to an Oncologist. I guess the tumor was found by an MRI and blood work confirmed it, these were the blood test CA19-9, CEA, LFTS, CBC. I didn't know what to ask the Doctor but apparently surgery is out of the question. I am not sure if I should have said more, or asked him other questions - I was just so stunned! It is really going to break my heart to tell her on Saturday (family is coming out to see her).

Has anyone else lost a lot of weight because of this? My mom must have lost 80lbs in over a year + she is a diabetic. I am also so worry about how she is going to take the news because she is so thin. Not sure if she will even survive chemo. I would love to hear any input from anyone please.

Thank you,

Chris

bean66 · Regular Joined: 22 Apr 2007 Posts: 12

Hi Spencer. I am so sorry for you and your family. My dad was diagnosed as Stage III so I can relate somewhat. My advice to you would be first are you at a large hospital that see's many PC patients? If not, do what ever you can do to get to one - get out of the local hospitals. You can check online to see what hospitals in your area have a lot of experience with this and their ranking overall with cancer care.

Second, I would make absolutley sure surgery is out of the question. In our case my dad has been very fortunate and was elligable for the whipple. We thought he'd never make it thru because of so many complications but, somehow he did. He lost about 40lbs initially but, has since gained some back.

Our situations are very different but something that is universal with everyone here I think -have as much faith as possible even when it might be impossible grasp.

My dad learned he had PC on his 77th birthday. The physician told him alone without his family present. I can not imagine how he felt. I know this is the most difficult thing you will be faced with but, your mom will appreciate having the support of her loved ones. Stay strong and try not to loose hope... But please make sure you are at a good city hospital that treats PC regularly. It truly does make a difference. I will keep you & your family in my thoughts and prayers.

God Bless.

brainman

Hi Chris, I am so sorry about your mother's cancer diagnosis. Pancreatic cancer is one of the worse cancer to have to deal with.

I do not know what your mother's situation is so this question may have a logical answer. However, I do have an important question: Why did the doctor speak to you and not to your mother? Are you her health care surrogate? If not, he really should be the one to be talking with your mother and detailing her options so that she can make an informed decision. This should not be your burden. In fact, without a biopsy, there is very little that you can tell your mother. Cancer cannot be diagnosed by CT (or any other imagining technology) and lab work... it requires a pathologist to look under a microscopy to see what those cell really are. You need to call back your doctor and make an appointment for him to talk with your mother. This weekend, all you can say to your mother is: "The doctor said that he sees something that he doesn't like and he want to talk with you about it one ______".

I don't mean to jump on you. It is just that I have seen too many doctors try to dodge their responsibility to fully inform their patients by "delegating" that job to nurses or family members.

You and your mother are in my thoughts and my prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

SPENCER1958 · Regular Joined: 11 Oct 2007 Posts: 12

My mom is 65 years old, does not drive and everytime she goes to the doctors they ALWAYS call me in the room because she has a hard time remembering and they must feel that she does not understand what they are telling her, plus I have to drive her around to the next specialist etc... The Doctor said he would not mind telling her but he does not know my mom very well. When I asked about the stage she was in all he said is that she was "Advanced", I had asked about surgery and he said it was out of the question and the next step would be to see an Oncologist. The only symptom that the family sees is that she has lost so much weight but she is not throwing up and still gets around, she does have pains sometimes. The family is going to see her tomorrow meaning me and my brother so I think we are going to tell her than and I was debating if I should tell her myself today since I have been the one the Doctors have been calling and letting her know you have this or that.

It is going to break my heart to tell her but I want to stay positive for her to fight what she has and do not give up and I will be with her every step of the way..... I am not letting go so hopefully she will not give up.

rachel26

I know exactly what you are going through, I had to tell my mom she had cancer as well. I have an older brother and sister, but the burden was left to me to tell her. It broke my heart, but my mom took the news surprisingly well (way better than I did). She was diagnosed with stage four pancreatic cancer, she did have alot of nausea and vomiting and she did lose weight. She also had an extreme amount of pain at times. She tried to do the chemo, but after two treatments she decided to stop them. They really took a toll on her.
At first, the doctors didn't really tell us much of anything about her cancer. I actually had to lose my temper with them a few times before we found out alot of things. Sometimes I think they try to spare hurt feelings, but in the long run, they should really be straight with you from the start.
Sadly, I lost my mom just last month. It was the hardest thing I have ever had to face. My advice to you would be, trust in God, he will keep you strong (I know he has given me tremendous strength). You all will be in my prayers.

SPENCER1958 · Regular Joined: 11 Oct 2007 Posts: 12

Well I told my mom last weekend before the family arrived to visit and she was crying, talking about a will than saying she does not believe she has cancer. On Thursday my mother and I met her Oncologist and what a real mix up we had!!! Her Oncologist seems like a really good doctor of gathering all information of what my mother has been through etc…. I mentioned to him that last week she was in the emergency room because she was holding her chest and he indicated that he did not have that report of a CT scan she had done so he gets his assistance to call to get a copy. Well this Doctor does not hide his expression at all and must have been wondering what kind of patient he was dealing with because he really looked like he had a very bad migraine. This repot had my Moms name, DOB etc….. so the doctor said I have to admit you, Didn’t anyone tell you that you have a clot in your heart and me and mom looked at each other and said No, if that was the case why didn’t the hospital admit her?? We were both shocked and they hooked my mom to an IV (which she is bruised now), after a 1 ½ the Doctor says oh it’s not your report, they mixed it up and the ER Doctor is redoing the report.

It’s hard enough to get my mom to go to the Doctors than they do this!!! Oh gosh…. So this is the Update of Mom as I still think she is in denial – she has an appointment on 10/23 @ 3:30pm just for a Surgeon consultation of putting the “ports” in her. I told my mom who does not drive and she said that time was too late and she is tired. I told her what the difference is if it’s 9am vs. 3:30 pm. – I got mad and hung up, I was mad. I am mad about everything……Just mad!!!! I feel like she is in such Denial!!!! I have a lot to deal with because she lives with her mentally challenged son, my loving brother who eventually will live with me or my other brother “but IT WILL BE WITH ME” or should I say both siblings will be fighting this cause!!!

Mom also has an appointment on 10/26 for a liver biopsy to make sure everything is ok. Going to this center it’s so hard to see so many YOUNG people going through treatment it really breaks my heart and believe I am a big supporter of American Cancer Society! Everyone is sooooo nice and supportive!!!!

Sorry to take up so much time just had to get it out of me!

brainman

Spencer, what a terrible experience for you and your mother!! I am glad they did not start treatment for her "clot" before they realized that they were looking at the wrong report.

My heart goes out to you. It does sound like you have a lot to deal with: a mother with cancer, a brother who will need to live with you because he is mentally challenged, and another brother already living with you Sad

.

About your mother's denial. Be patient with her. She is probably in a state of shock. She need all of your support right now. I know because both of my parents needed my support when they had cancer and eventually died due to it. Try to make the most out of the time you still have with her. Even the trips to the doctor and hospital stays can be special, one-on-one times for the two of you. For example, the World Cup Football (Soccer) games were on when my father was being treated for his Leukemia. Since we lived in Brazil for many years, we enjoy the World Cup games and we didn't let a "little" thing like chemotherapy get in the way of us cheering for Brazil Wink

.

I am glad you are finding some support on this forum and from the ACS! They are a wonderful organization doing a necessary job of information, support, and helping fund research.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

SPENCER1958 · Regular Joined: 11 Oct 2007 Posts: 12

My mom is schedule for her surgery consultation to discuss about putting the ports in tomorrow.

Friday she has to go for a biopsy of her liver to make sure everything is ok.

Still waiting for the surgeon to schedule an Endoscopic Ultrasound (EUS) and ERCP. I would have thought that this would be #1.

------------------------------ Any questions that I should be asking? Couldn't they just give her a chemo pill or would they still need those ports put in.

Mom is still in denial thinking that she does not have cancer because she feels good.

Appreciate any feedback.

wannaknow · Regular Joined: 19 Oct 2007 Posts: 24

S1958:
Sorry to hear about your Mom & the challenges you are facing. The shock of the news & then fighting to get "control". It's like trying to climb into the driver's seat of a car speeding out of control while you hang onto to the roof with your finger tips.
The good news is that You can do it.

I find forums helpful too once You find the one that works for You. The doctor(s) should be helping too by taking time to explain everything fully. If not, get new doctors. Although I will acknowledge that Medical Insurance can complicate that whole process
You will have that initial pressure that everything must be done immediately but in reality, try to stop the madness (like Drs who don't have their act together) or pushing your Mom if she feels weak or tired.

A gentleman suffering with his own battle was nice enough to share his blog which contained the following on Chemo + a Port........from what I understand, it will eliminate the need to search for a vein & stick a patient over & over again.
http://diehlmartin.com/infusion/

All the best to You, your Mom & family.

SPENCER1958 · Regular Joined: 11 Oct 2007 Posts: 12

Oh yes, I have been following Marty's website which really has been so helpful..... "Thank You" - You're an inspiration for all to follow...... "I wish my mom had a computer to read this which I have been telling her your story- amazing!!!! "Grace"

I think MY MOM IS FINALLY GETTING IT AND REPEATING WHAT SHE HAS TO DO, Happy but sad at the same time because I hear her voice cracking, crying - It's really hard and I am trying to be strong!!! Not good at that at all!!!!!

Gross part: she says she has a hard time with bowel movements does anyone else have that and does this get better?, sorry but had to ask?

wannaknow · Regular Joined: 19 Oct 2007 Posts: 24

S1958:
Yes, those topics that we & often the patient would rather not include in open conversations will soon become very normal.

I'm sure patients will chime in but for my Mom who was able to retain some of her pancreas......getting the whole digestive tract up & running after many months of distress (losing weight & not being able to eat very well) has been tough. Initially, she was prescribed (you can get generic off the shelf) stool softners plus a mix of foods to help things along.

Your doctor should be able to help with info & suggestions too based on your Mom's diagnosis.

Thanks for the new link, I will use it.

SPENCER1958 · Regular Joined: 11 Oct 2007 Posts: 12

Mom and I met her Surgeon yesterday 10/23. Today the Surgeon installed the "port" in her today. We also found out yesterday that Moms results for the CA19-9 blood test what they consider normal is anywhere from 0-35, my mom was at 2500 so that is very high.... Friday she goes for the liver biopsy. Still waiting for that EUS appointment..... Martin when I read your blog she seems to have anything that your going through the pains in her back is so bad that she kept slouching down in the hospital bed - other than that she really looked good and pulled through thank god!!!! Wow this is just the beginning so I was told, I got a long road ahead.

I wish everyone over a certain age could get tested by this blood test of the CA19-9, wouldn't it make more sense to catch this early than to pay tons of money for cancer? I know Ins. don't cover it. I guess it's my wishful thinking! I wish no one had to suffer the "C" word, it's really hard.

Good Night! Spence

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