Gallbladder Cancer- please help!!

EILEENM
EILEENM Member Posts: 5
edited March 2014 in Rare and Other Cancers #1
Hi i was directed to this site as a place i could find inspiration- and i have seen some great stories already. My mom got the pain of gallstones in Jan 10 and Feb 10- she was given medication(dont know which one) but she never got the pain again (it must have masked them)- she had tests to confirm she had in fact gallstones but the surgoen said no need to opearate as you are well and medication is working-so we let it silde that was the first mistake (we never dreamed something so sinister was lurking)then my moms own gp said to her you know why dont you have the op now that you are fit and heathly so she went for the ROUTINE op in oct 10- she recoverd fine from the surgery only to be called back in NOV 10 to be told they found the gallbladder was cancerous- she went to the local cancer hospital for tests - CT scan and laparoscopy and endoscopy, we did not get a PET scan as they had seen all they needed they said- to be told she was not a candidate for liver resection as planned as the cancer is now in the lymph nodes at the bed of the where the gallbladder was and at the kideney side- not in organs just lymph nodes not dismissing them, i dont really understand them and from what i hear they are not good news. They are opting for chemo which will start before christmas this is aggressive they have said that much-we have no idea yet what cocktail this is only that it will be 1 day this week 1 day next week and then a week off- sorry for the long story: My mom is 72 in great health and willing to give this the fight of her life- she is currently symptomless and has no weight loss- it all seems like a huge nightmare but it is real- so i need to find hope out there as we are not feeling this from the doctors. It is extremely rare where we are only 6 this year which is like 1 in the million really! Please reply to give hope and advice- i really appreciate it, my mom is my mom but also my best friend and has had so many other hardships and come thru them-i dont want to lose her to this either mentally or physically. Thanks

Comments

  • Lily50
    Lily50 Member Posts: 209
    #2
    Your Mom
    Hi Eileen,

    I'm so sorry that this terrible disease has touched your lives. It truly can be a nightmare. You are a wonderful daughter to try and help your mom with this journey. It is a difficult one and even though the doctor's paint the bleakest picture regarding this disease, you have to have Hope and Faith that your mother will be able to tolerate the aggressive treatment that is needed to go to battle. I hear stories about people who have gallstones and the surgery to remove them and next thing you know they are diagnosed with Gallbladder Cancer. To be told that she isn't a candidate for the liver resection just means not now. That is not to say that down the road a bit, once there is some progess with the chemo and/or radiation that surgery can again become an option. I was told no twice on my surgery and that wasn't an acceptable answer to me. After 10 months of chemo I got the yes answer to surgery that I was waiting for. I am suprised that she didn't have a PET Scan as that can show micro cancer cells. It is a very expensive test and some insurance companies don't want to pay for it. The lymph nodes are almost always involved in this disease as that is how the cancer cells travel through the body. I'm so glad to hear that you mother is willing to fight. This might just be the hardest thing that she has ever had to do. This is a great place to talk to others that are experiencing what your mother is and the people that love and care for them are here to help others as well as themselves. Yes this is an extremely rare disease but more and more people are being diagnosed with it. Most people are no longer fitting into the profile that was established a million years ago for this disease. The doctors are learning more and more about it and are having success now more than they have ever had. What part of the country do you live in? I try and connect people with each other if they live in the same areas. Local resources can be quite helpful when you are trying to navigate a nightmare. Your mother needs to be her own advocate for her health and if she is unable then you need to be an advocate for her. Let us know how it is going and what cocktail they will be mixing up for her. Hydration is a key, eating small meals even when you are not hungry, light exercise (walking, yoga),and take it one day at a time.
    I'll add your mother to my prayers.
    Take Care
    Lily
  • EILEENM
    EILEENM Member Posts: 5
    #3
    Lily50 said:

    Your Mom
    Hi Eileen,

    I'm so sorry that this terrible disease has touched your lives. It truly can be a nightmare. You are a wonderful daughter to try and help your mom with this journey. It is a difficult one and even though the doctor's paint the bleakest picture regarding this disease, you have to have Hope and Faith that your mother will be able to tolerate the aggressive treatment that is needed to go to battle. I hear stories about people who have gallstones and the surgery to remove them and next thing you know they are diagnosed with Gallbladder Cancer. To be told that she isn't a candidate for the liver resection just means not now. That is not to say that down the road a bit, once there is some progess with the chemo and/or radiation that surgery can again become an option. I was told no twice on my surgery and that wasn't an acceptable answer to me. After 10 months of chemo I got the yes answer to surgery that I was waiting for. I am suprised that she didn't have a PET Scan as that can show micro cancer cells. It is a very expensive test and some insurance companies don't want to pay for it. The lymph nodes are almost always involved in this disease as that is how the cancer cells travel through the body. I'm so glad to hear that you mother is willing to fight. This might just be the hardest thing that she has ever had to do. This is a great place to talk to others that are experiencing what your mother is and the people that love and care for them are here to help others as well as themselves. Yes this is an extremely rare disease but more and more people are being diagnosed with it. Most people are no longer fitting into the profile that was established a million years ago for this disease. The doctors are learning more and more about it and are having success now more than they have ever had. What part of the country do you live in? I try and connect people with each other if they live in the same areas. Local resources can be quite helpful when you are trying to navigate a nightmare. Your mother needs to be her own advocate for her health and if she is unable then you need to be an advocate for her. Let us know how it is going and what cocktail they will be mixing up for her. Hydration is a key, eating small meals even when you are not hungry, light exercise (walking, yoga),and take it one day at a time.
    I'll add your mother to my prayers.
    Take Care
    Lily

    Hi Lily- thanks so much for
    Hi Lily- thanks so much for your reply and for adding my mom to your prayers- I am so glad we are not alone anymore in this journey, the survival stories are so heartening to hear at last. We are not in the US, we are in Ireland so a tiny place with little knowledge of this cancer, however the hospital we were at has a wonderful surgeon who has links with the US- We were told they had booked theatre 4 times for the liver resection but each time something in a test stopped them- when they all met they all agreed chemo was the best course of action- They went into the details of why- blood vessels were involved and it was too risky- i am hoping she will become a candidate for surgery after the chemo like you but they are saying that even for the chemo to work they would still have to remove all they planned with the lymph nodes near the kidneys and this they dont see as likely. Have you ever heard of this? At this moment in time my mom has to pinch herself in the morning to tell herself she has cancer but the doctors have said that by spring the symptoms would have become visible- hopefully she will fly as much as she can through the chemo and not have symptoms.
  • Lily50
    Lily50 Member Posts: 209
    #4
    EILEENM said:

    Hi Lily- thanks so much for
    Hi Lily- thanks so much for your reply and for adding my mom to your prayers- I am so glad we are not alone anymore in this journey, the survival stories are so heartening to hear at last. We are not in the US, we are in Ireland so a tiny place with little knowledge of this cancer, however the hospital we were at has a wonderful surgeon who has links with the US- We were told they had booked theatre 4 times for the liver resection but each time something in a test stopped them- when they all met they all agreed chemo was the best course of action- They went into the details of why- blood vessels were involved and it was too risky- i am hoping she will become a candidate for surgery after the chemo like you but they are saying that even for the chemo to work they would still have to remove all they planned with the lymph nodes near the kidneys and this they dont see as likely. Have you ever heard of this? At this moment in time my mom has to pinch herself in the morning to tell herself she has cancer but the doctors have said that by spring the symptoms would have become visible- hopefully she will fly as much as she can through the chemo and not have symptoms.

    Eileen's Mom
    Hi Eileen,

    No thanks necessary. I understand how difficult this journey can be and how much darkness goes with it, but we are all here to help you and your mom on her journey through this disease.

    You are the first poster from Ireland on this board. I have always heard that the Irish are fighters and your mom will need every once of her being to fight against this terrible disease.

    You are very lucky to have a surgeon who has links to the US. That enables your surgeon to have access to the latest and greatest information that the doctors don't necessarily share with patients but will with each other.

    Sometimes doctors are very cautious when it come to the liver resection surgery. They want to be absolutely sure that it can be successful. Since they are recommending chemo they have to feel that maybe success with it first might change the circumstances and risks for the surgery. We can only hope that surgery will eventually happen for her. Have they established chemo treatment cycles yet or what chemo medicines she will be receiving?

    I'm glad to hear that at this point she hasn't had any symptoms, like you I hope she can fly through the chemo before the spring.
    She needs to take care of herself, eat well and lightly exercise. It is important to be as healthy as you can be before the chemo starts as it can take a toll on your body, mind and spirit.

    Let us know how it is going.
    Take Care
    Lily
  • maudsie
    maudsie Member Posts: 54
    #5
    EILEENM said:

    Hi Lily- thanks so much for
    Hi Lily- thanks so much for your reply and for adding my mom to your prayers- I am so glad we are not alone anymore in this journey, the survival stories are so heartening to hear at last. We are not in the US, we are in Ireland so a tiny place with little knowledge of this cancer, however the hospital we were at has a wonderful surgeon who has links with the US- We were told they had booked theatre 4 times for the liver resection but each time something in a test stopped them- when they all met they all agreed chemo was the best course of action- They went into the details of why- blood vessels were involved and it was too risky- i am hoping she will become a candidate for surgery after the chemo like you but they are saying that even for the chemo to work they would still have to remove all they planned with the lymph nodes near the kidneys and this they dont see as likely. Have you ever heard of this? At this moment in time my mom has to pinch herself in the morning to tell herself she has cancer but the doctors have said that by spring the symptoms would have become visible- hopefully she will fly as much as she can through the chemo and not have symptoms.

    Hello Eileen! I see you
    Hello Eileen! I see you have found our wonderful Lily on csn.com. (I am Maudsie from that other site, cancercompass). Lily is correct, sometimes chemo can help get someone to where surgery is more advantageous, safe, and effective. I am glad to hear that your mother is basically strong and healthy (other than the obvious thing) so she is starting at a good point to do well with the chemo. Two Christmases ago i was in the middle of my chemo, and I really did quite well with it. Yes, a bit tired. Yes, less of an appetite. But i was able to do all I needed to do to enjoy my family and have some fun, too. I can really relate to your mother: i know how surreal it is to feel perfectly well but be told that even so, you have this rare cancer. It takes a while to integrate the fact of living with cancer into your life. Your Mom will get there. Let us know what therapy she will be on, etc.
    Oh by the way, you ask something about a kidney issue, but I have to say I am not understanding what the docs are saying. If this is still an issue, can you restate your question? Maybe the docs are saying that some of the involved lymph are near or attached to the kidney in some way making them difficult/impossible to remove? Some lymph are in difficult to reach places, or are wrapped around a vital thing making them too dangerous to remove, and the hope is that chemo can help shrink them.....
    take care --
    Maudsie
  • EILEENM
    EILEENM Member Posts: 5
    #6
    maudsie said:

    Hello Eileen! I see you
    Hello Eileen! I see you have found our wonderful Lily on csn.com. (I am Maudsie from that other site, cancercompass). Lily is correct, sometimes chemo can help get someone to where surgery is more advantageous, safe, and effective. I am glad to hear that your mother is basically strong and healthy (other than the obvious thing) so she is starting at a good point to do well with the chemo. Two Christmases ago i was in the middle of my chemo, and I really did quite well with it. Yes, a bit tired. Yes, less of an appetite. But i was able to do all I needed to do to enjoy my family and have some fun, too. I can really relate to your mother: i know how surreal it is to feel perfectly well but be told that even so, you have this rare cancer. It takes a while to integrate the fact of living with cancer into your life. Your Mom will get there. Let us know what therapy she will be on, etc.
    Oh by the way, you ask something about a kidney issue, but I have to say I am not understanding what the docs are saying. If this is still an issue, can you restate your question? Maybe the docs are saying that some of the involved lymph are near or attached to the kidney in some way making them difficult/impossible to remove? Some lymph are in difficult to reach places, or are wrapped around a vital thing making them too dangerous to remove, and the hope is that chemo can help shrink them.....
    take care --
    Maudsie

    You are right Maudsie
    Yes that is correct the lymph node spread is at the bed of the where the gallbladder was in lymph nodes and at the other side where the kidney is but is at this point confined to that area-(we think) the PET scan was not performed as in this country once they had determined it was inoprerable they dont do this test. That would have been the last test to be performed as there is only 1 PET scanner in this country. The aim of the chemo is to slow or shrink this to prolong her time- they have been very upfront that it is not offering a cure. I am still hoping and praying though that she will beat the odds- she is a very strong woman and has overcome a lot in her life.Thanks so much for leading me to this site, I am watching both with interest as there is no one here we can speak to in the same situation as it is so rare. All we can hope for is the best and to enjoy the time we have along the way. Thanks will keep ye up to date on everything. And i am so happy that there are survivor stories- You give courage and faith to all!
  • EILEENM
    EILEENM Member Posts: 5
    #7
    EILEENM said:

    You are right Maudsie
    Yes that is correct the lymph node spread is at the bed of the where the gallbladder was in lymph nodes and at the other side where the kidney is but is at this point confined to that area-(we think) the PET scan was not performed as in this country once they had determined it was inoprerable they dont do this test. That would have been the last test to be performed as there is only 1 PET scanner in this country. The aim of the chemo is to slow or shrink this to prolong her time- they have been very upfront that it is not offering a cure. I am still hoping and praying though that she will beat the odds- she is a very strong woman and has overcome a lot in her life.Thanks so much for leading me to this site, I am watching both with interest as there is no one here we can speak to in the same situation as it is so rare. All we can hope for is the best and to enjoy the time we have along the way. Thanks will keep ye up to date on everything. And i am so happy that there are survivor stories- You give courage and faith to all!

    Hi Lily and Maudsie- we had
    Hi Lily and Maudsie- we had the information day at the clinic- The chemo being used are the ones you mentioned, WEEK 1: both gemcitibine and cisplatin WEEK 2: just gemcitibine WEEK 3: off and so on for 4 months is the plan. I asked about oral chemos also and these will not be given- i asked about the port and they said they would not do that unless necessary due to risk of infection. I asked about hair loss they said it would thin- this is a bit confusing as if it was to fall out we would organise a wig if not no action but thinning, what can you do for that? it has taken me 5 days to come back and write this all down as i find when i have been to the hospital i get discouraged- they behave like there is no hope, like no one ever came thru it- yet i see ye two and i also see bill who is fighting this since 2003. I cant understand- one of the doctors once again said you do understand this is not a cure- we understand that- but do not want to think of what it all really means- it is so hard my mom is the same as she always was- i had her for dinner here today she ate as normal played with my kids as normal and we chatted as normal yet this is lurking threatening to take all i know away from me- it is a hard pill to swallow. Her treatment is now not starting till Jan- the senior doctor said she was not urgent- that she is symptomless- i think it is more that they are understaffed during the holidays but it gave her a great boost to think she is not urgent and is allowing her to enjoy christmas with out the side effects of the chemo. Thanks for all your help so far.
  • Lily50
    Lily50 Member Posts: 209
    #8
    EILEENM said:

    Hi Lily and Maudsie- we had
    Hi Lily and Maudsie- we had the information day at the clinic- The chemo being used are the ones you mentioned, WEEK 1: both gemcitibine and cisplatin WEEK 2: just gemcitibine WEEK 3: off and so on for 4 months is the plan. I asked about oral chemos also and these will not be given- i asked about the port and they said they would not do that unless necessary due to risk of infection. I asked about hair loss they said it would thin- this is a bit confusing as if it was to fall out we would organise a wig if not no action but thinning, what can you do for that? it has taken me 5 days to come back and write this all down as i find when i have been to the hospital i get discouraged- they behave like there is no hope, like no one ever came thru it- yet i see ye two and i also see bill who is fighting this since 2003. I cant understand- one of the doctors once again said you do understand this is not a cure- we understand that- but do not want to think of what it all really means- it is so hard my mom is the same as she always was- i had her for dinner here today she ate as normal played with my kids as normal and we chatted as normal yet this is lurking threatening to take all i know away from me- it is a hard pill to swallow. Her treatment is now not starting till Jan- the senior doctor said she was not urgent- that she is symptomless- i think it is more that they are understaffed during the holidays but it gave her a great boost to think she is not urgent and is allowing her to enjoy christmas with out the side effects of the chemo. Thanks for all your help so far.

    Eileen's Mom
    Hi Eileen,

    Sounds like you got quite a bit of information. Now just trying to digest it all will be the hard part. That chemo combination seems to be working for some people and a 12 week cycle seems to be the standard. Worked for me! I sometimes wonder why the therapies can sometime be so different. Again everyone is different. I didn't totally lose all of my hair but I had alot of medium length hair. I finally got a wig to wear out on special occassionly only. The rest of the time I just wore beautiful scarves. I'm not a hat person at all. It is just what your mom would be the most comfortable with. Also with the hair loss I had to switch to baby shampoo as the chemo will dry out your skin along with your scalp. It is easy to get depressed about your mom's situation. Most of the doctor's aren't willing to put themselves out there to give you any hope at all. Of course we all understand that what we are doing isn't a cure. But it will enable us to go on with our lives and try and be fulfilled. We are accepting that we have to do the chemo and surgeries and what that does for us is buy us some more time to spend with our familes and loved ones. We may not be the brightest patients but we do understand what this all means to us. We just pray for remission.
    Your mom sounds like she is handling this very well and she knows how important it is for her to spend time with you and your children. It is easy to get negative about the situation but remember that right now no matter what your mom is making memories with you and her grandchildren. That is really what is so important to her now. She won't complain about how bad she might be feeling because she is the mom and the mom always has to be strong. I'm glad that she won't enter into treatment until after the holidays. That way you all can have an enjoyable Christmas and just try to keep all of the negative thoughts away for this small period of time. Enjoy each other, laugh a little, love a little and make sure that everyone has the best time possible.

    Merry Christmas and Happy New Year!
    Take Care
    Lily
  • maudsie
    maudsie Member Posts: 54
    #9
    EILEENM said:

    Hi Lily and Maudsie- we had
    Hi Lily and Maudsie- we had the information day at the clinic- The chemo being used are the ones you mentioned, WEEK 1: both gemcitibine and cisplatin WEEK 2: just gemcitibine WEEK 3: off and so on for 4 months is the plan. I asked about oral chemos also and these will not be given- i asked about the port and they said they would not do that unless necessary due to risk of infection. I asked about hair loss they said it would thin- this is a bit confusing as if it was to fall out we would organise a wig if not no action but thinning, what can you do for that? it has taken me 5 days to come back and write this all down as i find when i have been to the hospital i get discouraged- they behave like there is no hope, like no one ever came thru it- yet i see ye two and i also see bill who is fighting this since 2003. I cant understand- one of the doctors once again said you do understand this is not a cure- we understand that- but do not want to think of what it all really means- it is so hard my mom is the same as she always was- i had her for dinner here today she ate as normal played with my kids as normal and we chatted as normal yet this is lurking threatening to take all i know away from me- it is a hard pill to swallow. Her treatment is now not starting till Jan- the senior doctor said she was not urgent- that she is symptomless- i think it is more that they are understaffed during the holidays but it gave her a great boost to think she is not urgent and is allowing her to enjoy christmas with out the side effects of the chemo. Thanks for all your help so far.

    Hello Eileen
    Well Eileen, it sounds to me that your mother is, or will be, getting the treatment that is so far been most successful at keeping this cancer at bay. This is excellent news! And starting just after the holidays sounds like a good plan. I still think, in the long run, the port would be a good idea, but it's OK to wait to see how your mother's veins handle the chemo. That might work out fine. However, you should know that there really is very little risk for infection if your mother receives the kind of port that is buried totally under the skin. But it is very possible that his kind of port may not be available in your area.
    In any case, i agree with all that Lily has just written: enjoy your Christmas, I know your mother will want that for everyone, too. It is really a good hopeful sign that she is doing so well, it will put her in the best position to begin the treatment in January. Please do return to this site soon and give updates.
    Happy holidays to all!
    Maudsie

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