Topic: Bad News

Hi all,

So I went to see my consultant yesterday to have a check up. I had developed a couple of lumps on my chest, forehead and back of my head in the last couple of weeks, along with a build up of some sort at my resection scar, near my belly button. She examined me and and confirmed my worst fears that the lump near the scar was tumour-related, and that if confirmed, it would be incurable.

I am due to have a CT scan in two weeks where this will be confirmed but I feel like my world has fallen apart. After going through the surgery in November I thought I would have more time than this before it returned. I do not have any sort of timescales as we need to see the extent of the spread but this will come from the scan.

I am going to have Cisplatin added to my chemo regime from Tuesday (currently I am on Gemcitabine only) and will have treatment two weeks on, one week off, which will hopefully control the spread. I will search these forums for info on Cisplatin but any info on side effects would be helpful.

I am just in a state of shock at the moment, at a loss as to what to say to my family, who obviously are suffering too. I have started thinking about everything I am going to miss and never going to have in the future. i just need an outlet for this.

Tom

Re: Bad News

Tom,

My heart breaks for you.  You are so young to have to deal with this monster of a disease.

Your family will be a great source of help for you.  Be sure that they get all of the facts - believe me it's better to know and prepare than to be "blind-sided" by the unexpected or unknown.  That said only God knows the path and timing of our lives.

I take great comfort in what my son told me when my Mom was diagnosed.  (He will be 28 on Monday)  I use his words in my signature line and I believe they are a wonderful way to combat living with this disease.

Always feel free to come here and vent.  We are always here for you and your family.

I will be praying for you and your family. 

Hugs to all of you,

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Bad News

Tom,

I too am so sorry that you are going through this, especially as you are so young.  As Pam said, come here anytime you need to talk. Everyone on this site is so helpful & supportive.

I will be hoping for the best for you and will keep you & your family in my thoughts & prayers.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Bad News

Tom .... All I can do is echo  Pam and Darla.  This web site has been a God send for me.  Tremendous support from everyone.  This relentless disease is so unfair all the way around.  Even though I'm currently on at home hospice and loosing weight almost daily, I feel at peace and have faith God will be there to support and guide my family and myself.  My thoughts and prayers are with you and your family all the way! 
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

5 (edited by marions Sat, 14 Feb 2009 11:42:55)

Re: Bad News

Tom...I can only echo what has been conveyed to you by Pam, Darla and Jeff.  This is not what any of us had wanted to hear.   I am wondering though, have you had another physician look at these lumps?  Someone familiar with Cholangiocarcinoma/bile duct cancer, someone who has treated more then 2 or 3 of patients with this disease?  I am somewhat perplexed by your definition of lumps particularly, the one on the forehead.  When is your next scan date?  I would contact Prof. Lodge (his name and address is on this site, or use the Search Function) or if you would like to please,  e-mail me by pointing to my name on this site.  In fact, I will contact you through e-mail, also.
Hugs coming your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Bad News

Dear Tom,
             I am also very sorry to hear your bad news. I also wonder if it would be a good idea to get a second opinion at one of the London hospitals. I would suggest Dr Wassan at The Hammersmith Hospital. They have treated quite a number of cc patients and have various treatments on offer, including sir - spheres, if it would help.
            If you need surgical help then I would suggest King's College where they also offer PDT if relevant.
            I agree with Marion, it is worth going to a hospital where they have experience of treating a number of patients with this disease. They need to find out exactly what is going on with your disease asap. There are also some interesting phase 1 trials at Guys Hospital under Dr Spicer - deffinitely worth a try if nothing other than chemo is suggested.
            Good luck. Take care!
                   Pauline
ps if you have any further questions please feel free to ask. I have experience of the NHS.
           I send you my very best wishes

Re: Bad News

Tom,
In addition to Paula's suggestion I would like to give you the name of one more physician for possible consult and/or treatment:

Brian R Davidson
Consultant Surgeon , Royal Free Hospital
Professor of Surgery UCL
tel : 0207 794 0500 ext 34913

Sending tons of good wishes your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Bad News

Tom,
I just got news of my reoccurance about 3 weeks ago and I am still dealing with the fallout, both for me and my family and friends.

I understand the heartbreak and stress of realising that at such a young age when your life should be ahead of you, things have changed. I am learning to deal with an absense of hopes and dreams and trying to put myself firmly in the present. It is difficult, but I have been put on a mild antidepressent and it has really helped and I would recommend them to anyone who is having problems.

The good news is that you are young and have the energy to fight as long as you want. I tell myself that I need to hold on for 2 years. Who knows what is around the corner. I think about cyberknife and how new that is and how it is going to change the face of cancer treatment. Maybe in 2 more years, something else will come along.

I know how stressed you are. I understand. We are all here for you.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Bad News

Hi kris,  Just to echo what you said with cyber knife and advances continually revolving, a couple years allows alot of time for somethime to pop up on the horizon.  I admire your dedication to deal with the present.  However, I will never forget or give up on hopes or dreams in unison with the present. I or we all have to have faith of belief in something, in my opinion, regardless of the course we are taken. I support you in dealing with the reality of the present all the way,as I think we all instinctively have to do that to fight ,fight , fight.  If anyone can do it, your the one. 

God Bless!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Bad News

Hi all,

Thank you for all your kind words of support. I am going to get in touch with one of the other specialists for a second opinion on my condition. I am off today for my first chemo session with cisplatin added to the gemzar, so fingers crossed I will feel ok.

Many thanks again, I am eternally grateful.

Tom

Re: Bad News

Tom,

Take care.  You will be in my prayers today.  In fact I just finished praying that all will be well for you today. 

I believe strongly in second opinions and think you are being very proactive in taking this step.

Hang in there!

Hugs to you!
Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Bad News

Tom.....you should feel fine...thinking of you.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Bad News

MY very BEST to you Tom. 

As you can see and maybe even feel... we are all thinking of you and you are not alone.  (((Hugs))).  -ljg and the CC Community.

Re: Bad News

Hi my husband had cisplatin with gemcitabine too.He found a funny taste a side effect.What helped with this was ginger beer and euclyptus drops-if you can buy them       Janet

Re: Bad News

Tom,
   As you can see, we are all with you - wishing you good results, and hoping for the best for you. You are not alone.

Joyce C

Re: Bad News

Hi everyone, once again thank you for all your response, suggestions and support. I am struggling to cope with the news at the moment but have a strong family and friends to help me.

I have a CT scan on Wednesday which will show the spread of the disease and determine the extent of it. And then where we go from there who knows.

Tom

Re: Bad News

Tom,

I will be hoping for the best on the results of your CT Scan and future treatment plans.  Please keep in touch if you have any questions or concerns as there is always someone here who can help. Good luck to you. I will keep you in my thoughts & prayers.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Bad News

Hi Tom

My heart goes out to you and your family................I can only echo the thoughts of all the other messages sent to you?
I cannot recommend Prof Lodge enough at St James for any help or advice he can give you? He is my specialist and I have recently been to see him when they discovered a small growth on one of my lymph nodes?? I have a PET scan this Thursday to find out what it is.
Please keep smiling and stay strong! Please also let us know how you are?
Good luck.

Carol

Re: Bad News

Tom,
     My advise to you is to keep dreaming and setting goals for the future but be sure to enjoy the present and stay in the now too...the past is the past and we can't change that but I tell you what, dreams of the future has real helped me to keep positive and want to keep fighting to make them a reality.
And to the member who stated: "I am learning to deal with an absense of hopes and dreams and trying to put myself firmly in the present"... Yes the present is a gift from God (present, gift...same meaning) but please don't give up your dreams and hoping of the future. Don't let this evil disease rob you of hope and happiness. One thing that has helped me is to put my life in Gods hands. Every day I say to him let your will be done father. Only He can determine when our time is up on this planet. Don't let anyone assign you an expiration date ok. Of course I am only human and when I am in a lot of pain those negative thoughts always try to creep in but I FIGHT and turn them over to God and trust me I am not a bible thumper or anything like that but try it and you will see that it works. God is real. Talk to him like you talk to your friend or family and you will see...I promise! God Bless to everyone on this site. Tony