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If you are new to cancer Don't Believe The Statistics

LeeandShirley's picture
LeeandShirley
Posts: 122
Joined: Apr 2011

My husband Lee was diagnosed with Cholyangiocarcenoma, (primary liver cancer), at the end of August 2010. I immediately went on line and tried to learn everything I could about Liver cancer. I was panic stricken and the statistics for liver cancer patients was bleak. Lee had resection of a 5 cm. encapsulated tumor, Sept. 6th 2010. Biopsy confirmed it was indeed liver cancer , but the surgeon was confident that he got it all. He was watched with CAT scans every 2-3 months following surgery. In April of 2011, the cancer was back, with multiple tumors in his liver and abdomen and with a suspicious lesion on his hip. He started chemo on May 1, 2011. His last PET scan showed SIGNIFICANT shrinkage of the tumors in his liver with some tumors no longer seen. And all lymph nodes were shrunk back to normal with no activity seen. Just the "lesion", (same as tumor), was not better, even grew a bit. But, the reason for my post, IS THIS, if statistics dictated the course of cancer, Lee would be at deaths door or worse right now. If you get a diagnosis of stage four cancer, it is scary and something to be dealt with, but it is not an immediate death sentence and often, the statistics are all wrong, because they take into account the most extreme cases too. The average person, can and does LIVE with cancer, undergoing many inconvenient treatments and tests and doctor appointments and your whole life will seem to revolve around this new way of life. But, it is life. So don't spend one minute crying and worrying about cancer. Spend all your energy educating yourself about what is available and when you get a doctor who tells you there is nothing he can do, get another doctor. By the way Lee is doing pretty good, given the fact that they have been pumping him full of poison for 4 months and he has started radiation on the hip tumor, since the chemo didn't do the job. Based on what I have learned, you never give up until the very last effort has failed to stop the progress of this nasty disease. I no longer worry how long he has. That kind of thinking is pointless and wastes precious time. We live one day at a time, and enjoy and rejoice in every moment of LIFE. We all die, Dying is not the issue with cancer, learning to LIVE with a diagnosis of cancer is the hard part. Once you learn how to do this, you have won the battle.

tankcar
Posts: 3
Joined: Sep 2011

Thank you Shirley for giving me something positive today. My mom has been diagnosed with cholangiocarcinoma and is in the process of receiving chem treatments. Drs are talking about TheraSphere treatment, but want to continue with chemo a little longer. I agree with you, we keep looking for better treatments every day! My mom is my HERO...it's my time to pay her back for all she's done for me. We will continue to enjoy life and deal with the situation one day at a time.

More1234
Posts: 3
Joined: Oct 2011

My husband was diagnosed with the pancreatic cancer, then with no I think it just contained to the liver, anyway we were on a roller coaster ride for a couple of weeks. We changed doctors and that was such a blessing, the cancer team we now have is wonderful. He was finally diagnosed with cholangiocarcinoma, he started chemo last week with a five hour treatment of cisplatin and genzar, this week he had a two hour treatment of genzar, and on the 18th he will have his first of two Sir Spheres treatments. My question to anyone that can help, is what experience did you or your loved one have with this type treatment. I've read and read the statics but that is all they are statics. My husband is 67 and to look at him you would never know he is sick, never any pain or side effects from his two chemo treatments, just a little fatigue. This is my first post, I just joined today, just want to connect with someone. It's hard to talk with him because I don't want him to see my fears, he has such a positive outlook and our faith is what has gotten us this fair. Any comments would be greatly appreciated.

hopeful husband
Posts: 5
Joined: Apr 2012

i just read of your husband's condition i.e. cholangiocarcinoma. Im new to this network but have gotten in touch with a couple of survivors who were quite helpful. Look for Andrea North, a cholangio survivor. And see if the combination therapy works for you and your husband. My wife was diagnosed only last February and my 3 adult children and I went into top gear to research all options. The family decided to first try out Gemzan per doctor's advice but after one treatment and seeing the rapid increase in the lesions even after only 3 weeks, we didnt want to take any more chances so she flew to Boston and now is on FolFox treatments at Dana Farber. Too early to tell if it will work and work well for her. So far she is tolerating the treatments quite well. No serious side effects. If you wish to know what I have explored as options all over the world, look at my postings in the liver section of this network and get in touch with me via email. I will forward to you the emails I sent to others as these are long and quite involved. I hope you as the primary caregiver and your husband have strong faith and have the support needed to get you through this most challenging moments in your life. It will not be easy. But do share with those in this network who are willing to reach out. It helps. Our prayers for you and your family. Tony

mhrosado
Posts: 37
Joined: Jan 2011

Shirley. You are absolutely correct. Ed and I have talked about LIVING with cancer. as we all know some days are better than others and there are all these appointments and treatments but that is part of living with cancer. I hope that no one is offended because it is not that we are in denial, it is completely the opposite. we know that death is knocking on the door, with cancer you have a warning that it is coming so we try to live every moment the best that we can for that moment's sake. i am sure that this kind of thinking does not happen overnight it comes through all the difficulty, prayers and disappointments that the diagnosis brings in the beginning but thankfully we have grown through this and are taking advantage of the LIFE we have left..with all its imperfections. God Bless

LeeandShirley's picture
LeeandShirley
Posts: 122
Joined: Apr 2011

Dear mhrosado
I couldn't have said it better myself. You surely do understand.

Ellenor
Posts: 1
Joined: Jan 2012

Hi Shirley,
Just joined and read your letter, it is encouraging. My husband George received the same diagnosis in August 2011 and I also went on line to learn everything I can. He is only 66. He had chemo embolization on September 1, and was sick for at least a month. Then he went into liver failure. His blood work was all over the place and he was jaundiced and confused. Somehow he got over it and had microwave ablation on December 5, with less side effects, but he developed ascites and had had a paracentesis on December 23. He is better now, the tumor has shrunk, but not enough for a liver transplant. He is not a candidate for resection as he had a large tumor in one lobe and some smaller suspicious cells in another. They are considering Y-90 treatment which I just looked up. I am think I am wearing Google out!
I am a retired nurse and know enough to be terrified, which is too much. I have been looking for some sort of support group for both of us. The doctors at Jackson Memorial in Miami have been excellent, but they are scientists and stay away from compassion.
The letter from you that I saw is old - last year? How is your husband now? I am afraid to hear your answer,
Ellenor

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Ellenor, I've been wanting to ask the same question and with the same trepidation.

I hope you are coping and that you've found a suitable support group for George and yourself. I also hope that poor Sue is finding some sort of solace in the legion of lovely memories she must have from happier times.

Shirley, I'm praying that things are going along ok for you and Lee. I should explain that I'm an occasional visitor here (from the kidney cancer forum) and some of your postings have repeatedly drawn me back here. You write with such compassion, clarity and grace that I've re-read some of your messages quite a number of times. Also the love stories of posters such as yourself and Sue are at the same time heart-rending and inspiring. I'm taking the liberty (since I feel sure you won't mind) of quoting your message about cancer statistics on the very much busier kidney cancer forum where I sincerely believe it will be helpful and reassuring to many more people than have already drawn comfort from it on this forum.

Like Ellenor, I look forward to hearing good news and want to wish all the very best to all of you.

LeeandShirley's picture
LeeandShirley
Posts: 122
Joined: Apr 2011

Sorry it took so long to get back to you, but Lee and I just got back from a trip to Florida. We had a very good time. Two days after we got back, Lee got very sick for no reason, and he went into the hospital for observation. It is unknown what was wrong with him, (fever, vomiting and weakness to the point that he couldn't walk). But let me tell you,.....He's home and is better and yes, he is still with us. This cancer has it's ups, (not many) and downs, (very many). Cancer makes you sit up and pay attention and it's just that awareness that also makes you enjoy every minute of life together. These days are so precious, even more precious to me than any of the pre-cancer days, because I know every day is another gift. Lee continues to LIVE with cancer.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

LeeandShirley, a much wider audience than you might imagine, who are aware of your love and courage, will be relieved and delighted to hear this good news from you. Thank you for confirming that you both continue to enjoy life and please know that you will continue in the prayers of many unknown others who admire your enduring capacity to "sit up and pay attention".

rae_rae's picture
rae_rae
Posts: 290
Joined: Oct 2010

Lee and Shirley,

Texas Wedge reposted your original post here on the Kidney Cancer forum awhile back. It gives hope to many and also shows us that we all need to continue to live each day to the fullest no matter what life throws at us. Thank you for your words and just know there are many of us out here, even if in other forums, that keep you in our prayers.

God Bless,

Rae

Bill_73
Posts: 8
Joined: Jan 2012

Thank you for the encouraging words My wife and I are dealing with situation day by day and you offer more hope
GOD BLESS

march00
Posts: 20
Joined: Sep 2011

Great post Shirly, I had a 16cm removed in Oct and the doc said if it comes back he can do more surgery or blast it, so there are quite a few treatment options,
If you read the statics on the internet its scary,
Has anyone read the report that the MAYO Clinic came out this year on Liver Disease?

Nick

nempark
Posts: 661
Joined: Apr 2010

lEEANDSHIRLY: Wow How encouraging your post is to me. Today, my daughter slipped out of remission. she was dx with ALL Acute Lymphoblastic Leukemia. Was doing well until last week she began to feel sick and had a scan that show more lesions on the liver. I felt that is was a great set back and that it seemed like a death sentence. She was doing very well for the last six months and this has become a shock to us. I cry all the time and she does too. But from your post I am hoping that I can adopt the idea that you posted "Dying is not hte issue with cancer, learning to LIVE with a diagnosis of cancer is the hard part. once you learn how to do this, you have won the battle." I think this is a powerful statement and I sincerely thank you. Hope I hear from you ASAP. I need your kind of encouragement. Hope you are both doing well. Thanks June

LeeandShirley's picture
LeeandShirley
Posts: 122
Joined: Apr 2011

Dear June,
I have good news and bad news. The bad news is that my husband Lee has lost his battle with metastatic liver cancer. But, we knew from early on that he would not beat this kind of cancer. The good news is that you have adopted the right attitude to both deal with the battle against your daughter's cancer and cope with the emotional pain. Lee had many more months life because of his attitude, than was statistically predicted for him. And your daughter will too, if she adopts a positive attitude. As long as there is life there is hope and the moment you give up, the cancer has won. I don't know your daughter's prognosis, but, learning to live with cancer is much better than being scared to death every day about dying from cancer. I hope the best for you and your daughter and may a sense of peace take over your fear. We are all going to die someday, and few of us know when. So don't worry about the dying , rejoice in the living.

MrsTigger
Posts: 14
Joined: Mar 2012

Shirley I want to say thank you for the positive thinking you have shared on here! My dad has hcc and I have read to him this message you have written on here and now he is trying harder to fight this. He gets aggravated due to the only thing the Dr is giving him is nexavar and he is not able to take the full dose. But thank you so much for the positive thinking you have written. I am so sorry to hear about your husband. It sounds like he was a strong man! And you are also a very strong woman! I am trying all I can to help my mom help my dad. But thanks again!

Shay

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