Mom just diagnosed with Stage IV Gallbladder Cancer

PA-Laura
PA-Laura Member Posts: 1
edited March 2014 in Rare and Other Cancers #1
Hello All -

My mother was just diagnosed with Stage IV Gallbladder cancer. She had a galbladder attack and they removed it not knowing it was cancerous. When she had her 2-week post-op appointment she was feeling great and then found out about the cancer. During pre-op testing they had seen a spot on her liver but originally thought it to be a fat deposit. Once the gallbladder was found to be cancerous, they did a biopsy on the liver which showed the cancer had spread.

We are all looking for hope with such grim statistics and an oncologist who also does not provide much in the way of options.

Mom is getting a PET scan this Wednesday to see if there is involvement in other areas. Prior to this cancer, mom did have uterine cancer and breast cancer - both were caught early and were thought to be eliminated (they report the three cancers are not related to each other). Prior to this diagnosis, she was feeling good. She does not have any other medical conditions, she currently feels like her well self (other than the anxiety/stress of deadling with this news). She is 62 years old and lives in Dover, DE. We would love any referrals to oncologists who specialize in this rare cancer.

My mom is also feeling very alone in this situation, but is not much of an on-line person (she does use email, but the discussion board concept intimidates her :-))....so I thought I would reach out to see if I can share some stories of hope and useful information with her.

Thank you all for listening -

Laura

Comments

  • kjgrieger
    kjgrieger Member Posts: 6
    #2
    Your mom
    Hello Laura,
    How great it is that you are an advocate for your mom. My mom, too, was diagnosed with Gallbladder cancer in July. She had not been feeling well for a while and when she'd eat, she would feel sick and many times vomit after eating (she ate less to prevent herself from gettign sick and over tiem lost a lot of weight). When her doctor found she had gall stones, they decided to remove the gallbladder because there was no need to keep it. They ended up not removing the gallbladder because of the "suspicious spots" and just biopsied them. They came back as cancer. At the time of the scans, there were 3-4 small spots on her liver as well, and fortunately it is NO where else! The doctors did tell her that surgery was not an option at the time. The chances of the cancer spreading was too great and they did not know how it would respond to her chemotherapy regimen. She does chemo once a week for 2 weeks, then has a week off. After three cycles of that, she will have her re-scans (which is TOMORROW!!) to see how it is responding to her treatment. We are fortunate that she feels great, has gained some of her initial weight loss back. The doctors tell you the worst. You feel like they are giving you a death sentence. There is not a whole lot of imformation on gallbladder cancer since it is not that common. They give you "textbook" odds...Do your research of possible therapies and ask questions: there are options! I remember when I talked to her doctor about radiofrequency ablation, chemoembolization, cyberknife, he looked at me like I had three eyes. Become knowledgable. If you find something that may work and her doctor can't do it, find someone who can! There are people in this blog that have been told things were grim, and 5 years later they are cancer-free and HERE! Join a cancer support group, go to her dr appointments with her, ask questions. I bought my parents a tape recorder so they could listen to things again later or I could listen to them, too. Don't give up hope - if you want to email me any questions or woud like to have a copy of all my researched therapies/clinical trials paperwork, let me know. My email address is mcbeal01@yahoo.com. Hang in there!!!!

    Take care,
    Kellie
  • maudsie
    maudsie Member Posts: 54
    #3
    Hello Laura, I read your
    Hello Laura, I read your note with interest. I was 62 two years ago when i was diagnosed with GBC, the same way your mother was....with the removal of the gallbladder because of problems, vague symptoms, with gallstones. Very quickly after that i was scheduled for a CT and PET scan, and quickly after that I had a larger surgery where a wedge of liver and some nearby lymph nodes were removed and examined. In my case, I had a small spread to the liver (negative margins) and no lymph involvement. This is an aggressive cancer and I hope your mother is moving quickly for probable surgery similar to mine. She needs a good hepatobiliary surgeon. She will indeed also have chemotherapy and probably radiation depending on size and location of area affected. I know how scary this all sounds, but take it one step at a time (but step quickly) and your mother will see that treatment is possible, and hope is there. Most smaller cancer centers network with larger ones to find the best treatment options. If you are not near a major center, either go to one or make sure your mother's case is overseen by someone familiar with GBC and the latest treatment protocols. Let us know how she is doing, or better yet, convince her to write herself here! Best of luck --
    Maudsie
  • Lily50
    Lily50 Member Posts: 209
    #4
    maudsie said:

    Hello Laura, I read your
    Hello Laura, I read your note with interest. I was 62 two years ago when i was diagnosed with GBC, the same way your mother was....with the removal of the gallbladder because of problems, vague symptoms, with gallstones. Very quickly after that i was scheduled for a CT and PET scan, and quickly after that I had a larger surgery where a wedge of liver and some nearby lymph nodes were removed and examined. In my case, I had a small spread to the liver (negative margins) and no lymph involvement. This is an aggressive cancer and I hope your mother is moving quickly for probable surgery similar to mine. She needs a good hepatobiliary surgeon. She will indeed also have chemotherapy and probably radiation depending on size and location of area affected. I know how scary this all sounds, but take it one step at a time (but step quickly) and your mother will see that treatment is possible, and hope is there. Most smaller cancer centers network with larger ones to find the best treatment options. If you are not near a major center, either go to one or make sure your mother's case is overseen by someone familiar with GBC and the latest treatment protocols. Let us know how she is doing, or better yet, convince her to write herself here! Best of luck --
    Maudsie

    Laura's Mom
    Hi Laura,

    Welcome! I'm so sorry to hear about your mother. You are such a great daughter to try and help her navigate this journey. I totally agree with the advice that Maudsie gave you. Find the best that you can for her. Don't take no for an answer and fight with all the strength that you and your mother have to beat this disease. If her oncologist isn't helpful and supportive, find another one would be my suggestion. Most of what you read is outdated, and sifting through all the information can be quite daunting. But never give up!

    Your mom has already beaten the odds before and she will again. This is a road that she has already traveled before so she kind of knows what to expect. There will be subtle differences and a lot of similiarties.

    It is quite common to feel alone when you are diagnosed with this disease. No one has heard of it and you are made to feel like an anomaly. Let her know that others are going thru the same things that she is and some have even made it thru treatment, surgery and have continued to live to tell about it. She is not alone!

    Talk to us.

    Take Care
    Lily

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