Intro- Hoping for a long road ahead
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Hi Catherine,
I would like to welcome you to this site, but I am very sorry to hear about your Mom. In answer to your question about second opinions, I would go for second opinions and more until I found a surgeon that I was happy with and I trusted completely. I know many people seek more than one opinion to make sure they are making the right decisions. My daughter, Lauren, was the one with cancer and we did not seek a 2nd opinion. We were happy with her doctors and loved and trusted them. I think our situation was different in that my daughterand son-in-law are both doctors and had done surgeries with her surgeon. They saw first hand the brilliance of his work. Lauren was inoperable, but became operable after two years of many treatments. Sadly, she passed away after complications from her surgery, but to this day we do not regret our decisions. She wanted a shot at a cancer free life and took it. It is a personal choice and I believe a smart one to seek second opinions. If you are asking if you need a second opinion, you already have your answer. I wish your Mom all the best in fighting this disease and strength for the family.
Hugs,
-PamThis is the first time I have posted on this site. I am encouraged by Middlesister. please excuse my mistakes – new to computer, too. I have been reading this site for a long time and it has really helped. I was diagnosed at age 74, 18 mos. ago.
I, too, had a good surgeon and they removed 1/3 of liver – 5 cm. cancerous.
It was decided not to have any treatment (decision mine). So far I have been doing pretty well. However, it has changed my whole life. I moved from being a lifelong Fl. resident to wonderful, snow country, Upstate NY to be near son and family.I have a very good G.P. and she keeps me humming with palliative drugs. I am optimistic and enjoying every minute of life. However, it is always at the back of my mind. sallyr
Thank you all for the information and the warm welcome!
In response to Kris- She is being treated at Univ of MD. It was the head of oncological surgery who operated on her in Nov. We knew at that time that the surgery did have a risk that she could die on the table, but Mom and the surgeon felt this was her chance for a cure. He also warned that if they went in and it had spread further, they might not resect it. The tumor (only one tumor) is not round, but instead has portions extending out- and is located in the center of her liver. He mentioned that it has extended to the Vena Cava.
Fortunately, I do not feel that a “better” surgeon would have been able to remove it when she was in surgery; Univ of MD seems to be one of the top hospitals and she had an experienced surgeon. So far they seem to be aggressively attacking it through the chemo and radiation. Her tumor has been through a few “tumor boards” and the docs seem to agree with approach.
However, we do have Hopkins just a few miles down the road as well. Once we are through with the sphere treatment, I guess we could ask for a second opinion. Do people go for second opinions when they are already at a top facility?
Thank you,
CatherineHi Catherine,
Welcome to the site. Sorry that you had to find us all here and I’m sorry to hear what your mum is going through but I’m glad that you’ve joined us all as you’re in the best place for support and help and I know that you’ll get a load of both from everyone here. Thanks for sharing what your mum has been through so far.
Please do not focus on the stats or anything like that. I know that sometimes it can be hard not to do that but it would be better to focus on the positives. Your mum has reacted well to the chemo and that is very positive news indeed. Her medical team have a plan in place with further treatment options and that too is a positive in my book. Hopefully she will react as well to them as she has the chemo.
Things are indeed not hopeless as you say and I so like your attitude of if it can’t be removed then let’s kill it! A positive attitude will carry you both far with everything involved here. You say your mum feels and looks great and to me that is excellent news indeed.
Please keep coming back here and know that you are around people who care and know exactly how you feel and what you are going through. We are here for you and will help in any way if we can.
My best wishes to you and your mum,
Gavin
middlesister….welcome to our special group. I like your approach – cautiously realistic with a good dose of optimism. Personally, I prefer this cancer to that of a chronic disease rather than setting time limits which truly are unknown. Your Mom has had a great response to Gem/Cis and there is no reason to believe that she won’t do equally (or better yet) with the proposed selective internal radiation therapy. Side effects of the treatment may include flu-like symptoms however; I will leave the explaining up to those with personal experience. If indeed you are looking for quick answers, the Search function will lead you to some previous postings. Oh, I also wanted to mention that the biliary book might be of help to you. It provides the patient’s perspective as well as that of the physicians. I believe that everyone touched by this cancer should download the free e-mail version as knowledge empowers us and aids us in the decision making process. (Hard copies may be ordered for a small fee real soon.
Here is the link:
http://cholangiocarcinoma.org/bookorder-ebook.htm
You are a fantastic advocate for you Mom.
Hugs,
MarionDearest Catherine-
Welcome to the best family ever. Sorry you had to join us but you will not find a better support group for what is going on in your life and hers.First off don’t worry about years, survival rates or any of that. Those types of statistics are most always based on the past and we are moving into the future. And none of us are born with expiration dates. There will be those that will pop in who have been living with this for years and it is treated more as a chronic disease.
It does sound like things have been going fairly well and you have definitely headed in right direction with it.
A couple of questions: Where is your mother getting treatment and have you sought a second opinion, especially for the surgery?
Best wishes,
KrisVHi,
To introduce myself- Life changed in October when Mom (74, healthy) was diagnosed with CC. It was found through a routine blood test- no symptoms. The “good” was that we thought she would be able to have the 6 cm tumor resected, but after opening her up, they saw that the location and spread of the tumor made it inoperable.So, closed her up and now looking at way forward.
She went through 3 cycles of Gen/Cis. After first week, we didn’t think it would be tolerable, but adjusting meds (adding emend and 4 days of steroids) improved side effects so drastically that she was able to go without the other nausea meds (reglan and zofran) and finished 3 cycles. The first round was also difficult since she had not healed completely from the surgery.
Scan after chemo showed a 20% reduction in tumor Very good results, but asked oncologist and was told that tumor still will not be resectable in future due to location and morbidity risks.
Next step is Y-90 spheres- mapping will be next week. There is a chance that the right lobe is involved, but hoping only the left- mapping will confirm. They also discussed doing cyberknife down the road if the the tumors reacts well to the radiation. My thought is if we can’t remove it, let’s just kill it
Mom feels great now that chemo is done; hard to believe she is sick. I’m hoping that since she is otherwise healthy, liver function good, and chemo did show a positive result, that I will be a member on this group for a long time to come.
Mom has heard the “year” for non-resecatable CC, but I’m trying to convey to her that we can look for longer; it is not hopeless. My daughter will be getting her PhD in 3 years, and I’m trying to tell her that it is not impossible that she will be with us to share in the celebration.
I’ve been reading the board for a while now and truly appreciate the kindness and information that is shared through this community.
So.. I have been scanning boards… if anyone has a 3-year non-surgical survival story to share, it would be appreciated. Otherwise, I guess we’ll have to hope to pave the way.
Thoughts and prayers to all families and friends that are sharing this journey.
Catherine
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