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03/19/2011 04:44 PM

Newly diagnosed

Gleeni
Posts: 2
New Member

Hi, I am newly diagnosed with this dreadful disease.I am 66Years old with a fabulous 47year marriage ,3 grown children and 5 grandchildren.We saw the top surgeon here in the Philadelphia area and he says this is operable,but I am confused as they do not have lymph node status u till after the whipple. I do not want to have this surgery until I know the stage of this cancer.I am more concerned with the quality of life. I am seriously thinking of doing nothing until I become sick.I had a stent 2 weeks ago and feel great right now. The statistics the surgeon gave us were not great. Any suggestions.With deep appreciation. Gleeni
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03/23/2011 08:47 AM
lynyssa77
 
Posts: 74
Member

Gleeni...first, let me apologize for my late response. I have broken my left leg, my left ankle, my left foot, and my right foot as well. So I have been out of it the last few weeks. I normally respond much faster than this.

I'm so sorry to hear of your diagnosis. I was telling someone this morning that it breaks my heart to hear of yet another person being diagnosed. You may have read (on this site) that I lost my brother to this cancer two years ago, and since then, I've talked to many many people who have been diagnosed, or family member who have been diagnosed, with this cancer.

I do not know why they cannot stage your cancer either. That's unusual. If it's a late stage, like 4, doing a whipple surgery is out of the question. So..I would guess (but you need to verify with your doctor) that you are at an earlier stage. Thank God!!

Surgery is the single most important strategy in fighting this cancer. It "typically" does not respond well to chemo or radiation, so surgery is absolutely your best option. If you are a candidate, I would jump for it!!

I am not a doctor, nor do I claim to be, I can only talk about the loss of my brother and the loss of family members of dozens and dozens of people I've talked to on this site. Still, even with my intimate knowledge of this cancer..anything I tell you, should be verified through your doctor, naturally.

The stent is good, but be prepared for it to clog regularly and you may have to have that procedure several times....and you may eventually have to have an external drain..where they put a tube into your liver and drain the bile externally.

Ask them what your liver function tests look like (it's a blood test), ask them what your bilirubin count is (also a blood test), ask them specifically for a stage, and did they CT Scan to see if the cancer has spread anywhere else? It typically spreads to liver, lungs, gallbladder, abdomen, stomach...make sure they see where else any spreading may be. I'm inclined to think it has not spread, because if it had, they are less likely to do surgery..and they want to do surgery on you....but double check all this. Having surgery on cancer that has already spread definitely should be a reason for a second opinion. You don't want any unncessary surgery if it is not going to do any good, right?? So..talk with your doc about all of this.

Ask him how many bile duct cancer patients he has treated...get a feel for his experience...and ask others treating you...oncologist, surgeon, nurses, hospital in general....ask them all how familiar they are with it. You don't wanna be their guinea pig.

Also ask them..if the cancer that is in your bile duct is it inside or outside of your liver? If it is outside the liver, is it high up on the bile duct (near the liver) or further down lower (closer to your duodendum)? This will help determine the type of tumor you have.

If you ask these questions..they will know you are researching and informed...and so they will be able to talk to you in more detail as to what they are treatment they are consdiring and why...as they will assume you can understand it.

Please feel free to contact me anytime..you can send me a private message on here as well. I wish you the best of luck and I'm pulling for that surger for you!!! If you are a candidate..DO NOT DELAY IT...it's a VERY aggressive cancer!!

Take care...keep in touch.. -- Lynne


08/06/2011 02:18 PM
lynyssa77
 
Posts: 74
Member

Gleeni, I did respons in length some time ago, and have not heard from you. Which is absolutely fine, sometimes people do not feel like talking. But i wanted to let you know that you are on my mind and I hope you had the surgery and are doing well!! My email is lynyssa@gmail.com if you would like to chat further. All the best wishes - Lynne

08/06/2011 03:52 PM
Gleeni
Posts: 2
New Member

Hi ,I am sorry it took me so long to post again.I had a whipple on April 15th.Unfortunately,I have stage 3 ampulla cancer with 7positive nodes.Some of my pathology showed some poor prognosticators as well.My onco tells me I have about 2 years.Planned trip to Paris and Ireland in October.

After lots of research and appts I decided to do nothing.Itmay be that at recurrence I will do some chemo for palliative care.Frankly I feel better than I have for years.Loved my surgeon Dr. Hoffman at Fox Chase Cancer Center.I returned to work ,hairstyling on June 11th.We are taking it one day at a time,testing cancer markers every 3 months,so far the markers are 18. I think I am lucky,no food problems at all.I take enzymes every day.

Thank you for your input, GleeniSmile Smile


08/08/2011 07:16 PM
lynyssa77
 
Posts: 74
Member

Gleeni: Well, certainly not the news I was hoping to get. I'm very glad that you are comfortable with your doctors and hospital. Lord knows they are a huge part of your battle. Also glad to hear that you are getting back into your normal life (well, I'm sure nothing seems "normal" anymore, right)? I think familiar routines really do help us cope with a situation like this on a daily basis. My daughter's father was diagnosed with Leukemia. He did chemo and was pushed into remission several times, until finally he was at the "bone marrow transplant" stage. However, they developed a new "chemo" pill (just for leukemia) and he has been trying that and it has worked wonders. My hope is that they discover some new fangled approach to your cancer...I wish that for everyone I talk to...because you just never know the advances in medicine these days. I hope you enjoy your trip and I hope you'll keep in touch. All the best to you Gleeni!! - Lynne Smile

08/13/2011 08:07 PM
vergoulis
 
Posts: 9
New Member

Gleeni,

I just wanted to say your decisions are remarkable. Looking back at my moms path I think by the grace of God all the right decisions were made and not knowing how this cancer will affect each person as individuals it sounds like you are in tune with what is to come and taking the right approach. My mom worked till June and passed a few days ago. She was remarkable and I believe the Whipple gave us time with her that we would not have had.

God Bless you on your journey and remember to live, love, forgive and be forgiven. I received so many gifts of spiritual fruit and things that matter most before her passing. I know your family will learn from you and your trials as well.

I feel a love for all that go through this journey because I feel bonded by a force that we cannot control but God is in control. I am watching to know how you are. Take care and enjoy those children and grandchildren.

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