Wondering if others going through stomach/bile duct cancer
Hi. My name is Lissa Canavan and in 62. Just got diagnosed with what they think is stomach cancer that spread to bile duct (there is structure in bile duct). Doctors at MSK are very concerned and think it’s stage 4 wothout even having all pathology back. Visually pathology very bad I’m so scared. Praying there is some kind of treatment but I should find that out after pathology. is finalized. Every phone call the news gets worse I need something positive to hang my hat on for now. Please if anyone has something positive to share that this may not be an immediate death sentence I’d love to hear it. Thank you
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I am sorry that you have been getting such frightening news. My mother had stomach cancer that was also in her bile ducts. I may have useful things I could tell you, if you find out that is really your situation. My husband has a different kind of stomach cancer too.
As far as an immediate death sentence goes, my husband has stomach cancer and he was able to have a treatment plan and is still alive more than two years later. Definitely get your questions organized (I would make a list in my phone so I could not forget it). Listen carefully to what the doctors tell you. Maybe even write it down. Better yet, bring someone with you to write down the answers. I think that a diagnosis like that is so upsetting that you may forget some of the things they tell you. My husband is 63. I think that younger people, like you, can tolerate the possible treatments better than older people like my mother, so hold on to that.
Now, if they were to tell you there is no treatment plan and your cancer is too advanced (I hope this does not happen), as happened to my mother in 2019, they may offer you palliative chemo. I cannot be sure the treatment options are the same as in 2019, but I thought my mother was possibly making a bad decision to take the palliative chemo because my familiarity with chemo was how bad it made people feel years ago. I was wrong. The palliative chemo actually did extend her life and gave us some really good times together. It helped her feel better for quite a while, too.
Don't jump to any conclusions right now. It actually took quite a few tests before they figured out how advanced my husband's cancer was. They actually did exploratory surgery (as well as a number of other things) before proposing treatment plans. Is it possible for you to go to Mayo Clinic? I liked how they did all of his tests and he was ready for treatment within a week. They have a level of excellence that I have not seen anywhere else. Of course, I have never been to MSK so I don't mean to put them down.
Let me know what you find out if my mother's experiences may end up being helpful for you later. For now, hope for the best and I wish the best for you. I do actually, have another distant relative (in-law) that was able to have a much less aggressive treatment than either my husband or my mother. I hope that for you!
I’m sorry you are so scared and that’s very normal, everyone is the same because health scares are very frightening. I think the worst part is now because it’s all new and you’re mind is trying to understand what is happening with your body. Thankfully you living in a modern world filled with amazing technology and so much more to help you with all that’s going on with your body. I have also been diagnosed twice with lung cancer and I was successfully treated so I have a clear idea of how you feel. As things progress you will get more adjusted with your circumstances and ask lots of questions from the doctors and nurses so you learn more, this will help you to get some sense of control. I also have found that reaching out for help from other people going through the same or similar things will also provide you with some comfort. We are all the same here, human beings with health problems reaching out to each other for some advice and strength to help us to cope with our individual lives, good luck and please let us know how you are doing.
Hi Frouke. Thank you for sharing your story. It means a lot to me, as I’m sure you know. My doctor at msk who did orig diagnosis says it looks very bad, at least stage 3 but I am meeting Monday with medical treatment people and if I get any little bit of positivity, it will be very helpful. My biggest fear is that they say “sorry, nothing we can do”.
Hugs and thanks again. Stay well
Thank you for your beautiful email. I appreciate and “heard” everything you said. I will stay in touch, but they are pretty sure it’s advanced and I feel like until I have a possible treatment plan, I can’t snap out of the negativity. But I’m trying hard. Thanks again. Also, I will consider Mayo for 2nd opinion. Good idea
It is totally understandable that you feel negative. That kind of news really takes one aback. Keep us posted.
Of course you are anxious! No one volunteers for cancer of anything! I have stage 3 stomach cancer, diagnosed over year ago. Have had two courses of chemotherapy, and am in remission today. I will most likely not have surgery. The advice given here seems right on. I'd just add the idea that , since I have no relatives anywhere close by, my daughter( who lives far away ) is on conference call during appointments. She takes notes and reviews on the phone with me afterwards. Very helpful.
My oncologist gave me a helpful idea. He advised refraining from reading the statistics on Dr. Google. He stressed the fact that we are each very unique individuals physically, emotionally, and in all ways. The stats, therefore, are not reliable predictors of either the quality or the length of our own life post-treatment. Unfortunately, I had already read them. Here are a few ways my experience did not coincide with my reading: The chemotherapy effects were tolerable. At 87, I live independently, do all life tasks except heavy yard care and heavy housecleaning. I fatigue a bit faster than pre-cancer, and (like every one) fight the anxiety of "What's next? and "Should I plant veggies for Fall? " But, my delight in daily life has changed very little.
Last, please consider that advances in treatment occur at an amazing rate. My oncologist has addressed the possibilities of what can be done when the current remission ends. At least one additional new treatment has
been approved since my diagnosis. That's incredibly hopeful for you because of your age. It's in your favor!
Take heart! I hope you will share the ideas you find on how to tame the anxiety beast and let us know how you are doing. If you are encouraged by prayers that you find peace, you have mine.
Wow. Your message came to me at a fantastic time. If you are ever lonely, we can set up weekly calls when your daughter isn’t around or anytime. Thank you for the good wishes and hopefulness! Hugs. Lissa
What a generous offer of your time and your ear! Do keep us posted on how you are coping. In return, I'll let you know what I decide about planting veggies for Fall (smiley face). Hugs back at you!
Thank you. I have more biopsies coming up for bike duct and liver. So far stomach confirmed. Prayers to all of us
The typical "hurry up and wait" course of treatment. Awfully hard to be your own sweet self while anxious for answers. I've had some success for anxiety reduction by taking a class online. It forces me to take my mind off my health, and put it on something much more delightful to ponder. Peace to you, Lissa, and to all of us in your boat.