My mum's fight against gallbladder cancer - Update October 1st

[Ember]

It's my first time posting on this board...

On June 24th I found out my mum has terminal, inoperable cancer. It's in the gallbladder and (maybe) the lymph nodes around the liver. She went for a scope last Thursday, so we should have more information by the end of the week.

Anyway, today we went out shopping and all of a sudden my mum said she had pain in her back. I brought her right home (about 20 minutes) and by the time we got here she was in agony. :sad1:

She was literally writhing on her bed, moaning in pain. I was so scared! I know the doctors said there would be paid but I guess I wasn't expecting this...

I know it's selfish, but I'm only 29 - I'm not ready to be an orphan! :sad1: And I don't want to have to see my mummy hurting. This isn't fair.

I'm sorry, I don't mean to be either disjointed in posting, or selfish. It's been a rough few weeks.

[dougsmom98]

You should not apologize for how you feel. I think we would all be scared and we would all be feeling like life isn't fair right now. Giving the journey you are on right now with your mom, you are allowed to feel anything you need to. Hang in there.

[luvmarypoppins]

:hug: Hugs for your mum and for you too. I am sure it is so upsetting to see your mum in so much pain and you probably feel like you are helpless to help her. I always wonder if my dh feels that way about me too. But you are there for her and that is important. Just talk to her drs. to make sure that her pain is under control. That is very important. Blessings to you both as you go on this journey together. Your mum is blessed to have you there. I am sure she knows how concerned you are for her and she sees how much you love her too.

[frdeb1999]

Hugs for you and your family. You can't help how you feel. You have every right to feel what you do. Just let her know that you are there for her and support her. You'll be in my thoughts and prayers. :hug:

[dogodisney]

:hug: Don't apologize and don't feel guilty. You are not being selfish. I completely understand. I lost my mom to cancer in '02. I was 40 at the time and I was not ready to be motherless either.

God Bless you all. :hug:

[Mackey Mouse]

Do not apologize for posting that here...

I would get on the phone with her doctor and find out exactly what she is taking for pain medication.... she may need some adjustments... My thoughts are this when my husband was in that much pain.....they used oxycontin for the pain, which is I think 12 hours, and if he had break through pain with that drug, he was to take oxycondone... To tell you that we almost had to sell our first born child to get oxycontin is an understatement.. I never understand why they make it so difficult for cancer patients who have inoperable tumors that cause terrible pain to get these kind of pain meds.. and yet, well we all know that some just get whatever they want for pain.

I am no expert here, although I have been at this with my husband 5 years in November, but it sounds to me that she had break through pain which needs to be managed... as the doctor explained it to me, you never want to be chasing the pain, you want to keep visualize the straight line (no pain, mostly comfort).... no jagged highs (the Pain)

One more thought, are they calling her cancer bile duct cancer or just gallbladder? At any rate, it is one of the gastro types, which pancreatic falls under. Are you going to a hospital that has a separate gastro cancer area??? Hopefully, you are getting the proper help you need for yourself and for her. The goal is no pain, when possible, for those with inoperable tumors...

I am here if you need to ask more questions...

Marsha

ps I just went back and reread your post and that the doctor said there would be pain...sure, but it needs to be managed. Is he her oncologist? because I would definitely get him on the phone and say her pain needs to be managed reasonably.....it is about quality of life, if it is inoperable, you need to give her the best quality of life she can have for now... I feel a bit angry and I do hope that he is helping you manage her pain... My God... my heart hurts for her and you.

[Ember]

Do not apologize for posting that here...

I would get on the phone with her doctor and find out exactly what she is taking for pain medication.... she may need some adjustments... My thoughts are this when my husband was in that much pain.....they used oxycontin for the pain, which is I think 12 hours, and if he had break through pain with that drug, he was to take oxycondone... To tell you that we almost had to sell our first born child to get oxycontin is an understatement.. I never understand why they make it so difficult for cancer patients who have inoperable tumors that cause terrible pain to get these kind of pain meds.. and yet, well we all know that some just get whatever they want for pain.

I am no expert here, although I have been at this with my husband 5 years in November, but it sounds to me that she had break through pain which needs to be managed... as the doctor explained it to me, you never want to be chasing the pain, you want to keep visualize the straight line (no pain, mostly comfort).... no jagged highs (the Pain)

One more thought, are they calling her cancer bile duct cancer or just gallbladder? At any rate, it is one of the gastro types, which pancreatic falls under. Are you going to a hospital that has a separate gastro cancer area??? Hopefully, you are getting the proper help you need for yourself and for her. The goal is no pain, when possible, for those with inoperable tumors...

I am here if you need to ask more questions...

Marsha

ps I just went back and reread your post and that the doctor said there would be pain...sure, but it needs to be managed. Is he her oncologist? because I would definitely get him on the phone and say her pain needs to be managed reasonably.....it is about quality of life, if it is inoperable, you need to give her the best quality of life she can have for now... I feel a bit angry and I do hope that he is helping you manage her pain... My God... my heart hurts for her and you.

Thank you for your post. I think part of the problem is that she only takes the medication when she feels the pain. She wants to use the least amount of medication possible to control it. This was the first time it was really bad.

We've only had the diagnosis for three weeks. (Although it feels SO much longer then that!) We're waiting on the biopsy results of the inflamed lymph nodes to see if they're cancerous as well. From there we should have more information as to treatment and pain management.

Right now she's sleeping, which she seems to do more and more often. I guess this is a good thing.

[snoopybabe]

:grouphug: Hugs and prayers for you and your mum. You being there with her is a big help. As the PP said please call her doctor. Pain management is important and they should help you with that. If they don't please find another onocoligist. My DH is battling matasized melanoma & we ended up changing doctors & his new one is a gem. Please know you and your mum are in my prayers.

[kdzgon]

Thank you for your post. I think part of the problem is that she only takes the medication when she feels the pain. She wants to use the least amount of medication possible to control it. This was the first time it was really bad.

We've only had the diagnosis for three weeks. (Although it feels SO much longer then that!) We're waiting on the biopsy results of the inflamed lymph nodes to see if they're cancerous as well. From there we should have more information as to treatment and pain management.

Right now she's sleeping, which she seems to do more and more often. I guess this is a good thing.

I strongly suggest you and/or your mom sit down with the doctor and review pain management. I suspect your mom is making a mistake by only taking the medication when she feels pain. When our daughter was fighting cancer, it was explained to us that you need a "baseline" of pain meds in your system at all times. The only way to effectively deal with severe chronic pain is to stay ahead of it (usually this is done by taking pain meds on a regular, routine basis whether pain is present or not), and then as others have said, deal with the "break through" pain. Unfortunately, this pain is not your "average" pain and trying to "catch up" is a bear.

Pain is partially mental as well in that your brain "remembers" the pain even when the original cause is removed - many an amputee still "feels" pain in a limb that has been removed. Maybe you can encourage your mom to take the pain meds more regularly in order to not compromise her strength that she will need to fight this battle?

No matter what she decides, hugs and prayers to you and your mom during these difficult times.

[teskak]

I think a part of the problem is the (mistaken) idea that people are afraid to be percieved as 'drug addicts'. My mother had terminal brain cancer, but she was worried about becoming addicted to pain meds.

The issue is to see the pain meds as no different than insulin to a diabetic or heart med etc - each patient needs thier meds to survive. While there is the pain there is no real concern about dependance. and yes, the pain meds have to go up as the body develops a tolerance.

I find some podcasts very useful, this one is called Surgery ICU rounds by a professor of surgery and director of a burn unit in Tennesee. As a person with no medical or nursing training I can still understand them, even though they are aimed at his residents. The podcast to listen to is "Pain is a four letter word".

It should solve many uncertainties

http://www.icurounds.com/

[mrs_hower726]

I'm so sorry to hear about your mom. :hug:

Being a caregiver to a parent with cancer is hard! I was a caregiver to my mom over the past year while she was fighting breast cancer and you're allowed to feel angry, selfish, worried, and any other emotion that exists.

I recommend that you do call the doctor and talk to them about putting her on something that she takes on a regular basis, as a PP mentioned, once the pain is really bad, it takes a lot and a long time for the pain to lessen.

Please PM me if you want to talk. :hug:

[Mackey Mouse]

I battle with my husband all the time about chasing the pain. Some can function quite well and manage their pain.. You do need to stay ahead of it as I said previously and I do see that others agree.....otherwise you are playing catch up and that is not good..

Hopefully you can find that balance for your Mom.. in the meantime, we are here for you.

Marsha

[Ember]

We had a ray of good news today. I've been reading an reading about my mums diagnosis and came across a very large phase three trial study conducted out of the UK whose results were released at conference last month. The study dealt with a combination of two chemo drugs and had very promising results, on average extending lifespan by a third from 8.3 months to 11.7, with few side effects.

My husband is a PhD student in biology so I asked him to write the lead doctor on the study directly to see if we might be able to get a pre-print of the study which has not yet been released (though the results have).

The doctor, one of the leading researchers on my mums specific and rare type of cancer, wrote back to say that he would be happy to liaise personally with my mum's oncologist during her treatment. This means we'll have access to the most up to date and cutting edge information as well as having an expert on our side.

I must admit, I was touched that a complete stranger, in another country, would be so kind. :goodvibes

[MickeyNikiNaka]

We had a ray of good news today. I've been reading an reading about my mums diagnosis and came across a very large phase three trial study conducted out of the UK whose results were released at conference last month. The study dealt with a combination of two chemo drugs and had very promising results, on average extending lifespan by a third from 8.3 months to 11.7, with few side effects.

My husband is a PhD student in biology so I asked him to write the lead doctor on the study directly to see if we might be able to get a pre-print of the study which has not yet been released (though the results have).

The doctor, one of the leading researchers on my mums specific and rare type of cancer, wrote back to say that he would be happy to liaise personally with my mum's oncologist during her treatment. This means we'll have access to the most up to date and cutting edge information as well as having an expert on our side.

I must admit, I was touched that a complete stranger, in another country, would be so kind. :goodvibes

I'm happy to hear that your mom will have some of the best Dr's working with her!

[TracyK]

We had a ray of good news today. I've been reading an reading about my mums diagnosis and came across a very large phase three trial study conducted out of the UK whose results were released at conference last month. The study dealt with a combination of two chemo drugs and had very promising results, on average extending lifespan by a third from 8.3 months to 11.7, with few side effects.

My husband is a PhD student in biology so I asked him to write the lead doctor on the study directly to see if we might be able to get a pre-print of the study which has not yet been released (though the results have).

The doctor, one of the leading researchers on my mums specific and rare type of cancer, wrote back to say that he would be happy to liaise personally with my mum's oncologist during her treatment. This means we'll have access to the most up to date and cutting edge information as well as having an expert on our side.

I must admit, I was touched that a complete stranger, in another country, would be so kind. :goodvibes


I am so sorry to hear about your mum. My dear mum died two years ago of this rare form of cancer. She had been accepted on the trial that you mention. Unfortunately it was not to be and she deteriorated before the treatment started. I hope and pray that your mum gets the very best treatment available and that her pain is managed well. I will remember you and your mum in my prayers :hug:

[Ember]

Another update:

Right now I'm feeling frustrated and angry. The oncologist that my mum saw on June 24th, the one who told her the devastating news, has done NOTHING since then. We went for the scope on July 8th, and they said it would be about a week for the results. We called and called last week, left messages, and FINALLY spoke to his nurse. He's on vacation until the 17th of August!! :mad:

Which means that he intends to just leave her, with no information or access to any. She doesn't even know what to expect, how things will progress, or what to do about anything. She should have had the results last week and been referred as needed either to a surgeon (if the lymph nodes aren't cancerous) or to the Cross Cancer Center for treatment if they are.

I mean, you don't announce to someone they're going to die and then never see them again!! Now we have this wonderful doctor in the UK and no one for him to talk to!

GRRRR!

So we're going back on Monday to the family doctor to get a referral to a new oncologist. Hopefully, we can get in to see them before we go on vacation. If not, or if it has to be, I'll cancel everything. I'm just so angry about this whole thing. My mum is scared and hurting and it seems SO irresponsible! Not to mention that apparently this oncologist didn't actually SEE the MRI. He just read the report. They hadn't even done a biopsy yet and he felt that it was right to tell my mother she was going to die.

Wish us well on Monday, I should know more by then. Or someone is getting an ear-full!

[safetymom]

I hope you can find a Dr. that will help you.

[frdeb1999]

So sorry, sometimes I think doctors are just too unattached. I don't think they should'nt have a life....but they should let you know if they will be unavailable for lengths of time. Hopefully you will find one that that can help you. :hug: to you.

[Mackey Mouse]

Just got to this update....I have been dealing with my own cancer demons with my husband..

OK.. I agree, bye bye to this uncaring oncologist. I have no idea where you are... in the US.. in the UK... I am thinking the US. Anyway, if there is a teaching hospital near you... a big one that deals with this cancer more than once a year, I would try to get there. My husband goes to a big hospital in Boston, Mass General, which is affiliated with Harvard Medical school.. There are times that I wonder if they are doing enough and they are one of the best and have a great gastro-cancer center. I think it is second nature to always second guess are we doing enough. I do think you are on the right road getting another oncologist, and she needs to have some quality of life here..

I do worry about healthcare reform and am thinking lately this is what doctors will be thinking, if it is operable.. if you cannot treat it and give them some time or even if you can treat, who cares.. it is only time that matters to the patient and the family and in the long run will cost more money in healthcare.. Scary times we are facing, but for now, we are not there yet and so give her some quality time, painfree..

Hugs, we are here for you..
Marsha

[Mskanga]

I hope that you can find another oncologist that will be more active in the treatment. Ideally an oncology group is the best because there's always someone in the office or on call.
Best of luck to you ....you're in our prayers !!

[Pea-n-Me]

I'm sorry your Mom and you are dealing with this. :hug:

Are you in the UK, or the US?

Hopefully what I'm about to say will be helpful.

Usually, when one doc is not there, another doctor covers. The covering doc should have been able to give results, I would think, however, it would be akward just getting the results of the test without any other information re: treatment, which would be difficult for another oncologist to try to predict. The last thing anyone wants to either give or receive is incorrect information.

My experience with doctors is that there are very few that are as perfect as we want them to be. You can get another if you want, but chances are things may not be perfect there, either, and you're already "in the system" with this one, who presumably should be home from vacation soon. ;)

As for MRIs, oncologists really don't read them; radiologists do - that's their specialty. Radiologists read and interpret, and communicate the findings to the oncologist. That way the information is accurate. (It takes many years of specialized post MD training to become expert at it.) Again, the last thing you'd want is someone reading an MRI who isn't qualified to read it. So you should probably let that one go. Getting the radiologist's reading (or more accurately, usually two, who must concur) is the thing you want.

Oncologists are highly skilled at knowing and understanding cancer. The way they know this is by retrospective analysis (by the cancer community) of what has happened with people with similar types and features of different cancers. These are the "statistics" we all hate hearing about. There are some cancers that are simply very difficult to treat, and they know this because the survival rates are low after a certain amount of time, usually 5 years. So a particular cancer might have a 25% five year survival rate. Some of the rarer types of cancers might be even lower. Conversely, there are some cancers that, with treatment, that have a 100% cure rate. This is how they can tell us on that first meeting or so, what we're facing (and yes, I've been in that hot seat myself, too, and it stinks).

I don't know what was actually said in that first appointment, but I hope there was some sensitivity used. Oncologists are faced with giving accurate information yet doing so with kindness and caring. Insensitivity would be a deal breaker for me.

I hope things begin to get better soon. The waiting period between getting a diagnosis and establishing a treatment plan is often one of the most difficult parts of the cancer journey. Hang in there. :flower3:

[Ember]

Okay, so we saw her GP today. He was able to tell us that the results of the biopsy are inconclusive. :confused3 They don't know if the lymph nodes are cancerous or not.

We told the GP our concerns about the oncologist and are being referred to one at the Cross Cancer Institute who specializes in gastro-intestinal cancers. (I looked up the oncologists at the Cross Cancer and had two names.) We should hear back from the GP today or tomorrow.

I am willing to accept that this is terminal. I am willing to accept that chemo or radiation would be more damaging to the quality of life then it would be helpful. What I am not willing to accept is being ignored. If there is nothing to be done then she should be referred for palliative care and have access to counseling services. She should not be left wondering and frightened.

For those who asked, we're in Canada, specifically in Alberta. We have one of the top cancer treatment / research facilities in the world. I'm not expecting miracles or even anything other then what we already know... But I do expect more then what we've been given which is nothing.

Mackey Mouse, you are definitely right. I think it's hard to know when you're pushing for adequate care vs. pushing too hard with unreasonable expectations...

Pea-n-Me, thank you for your explanation. It helped. :)

Update: The GP called back. He spoke to one of the oncologists at the Cross Cancer and has begun the referral process which will take about three weeks. I'm feeling very glad we didn't wait until the other one was back from holidays! The new oncologist says to go ahead on our planned vacation and mum should be ready to go when we get back. He also said, after looking at everything, that he feels she would be a good candidate for chemo treatments, including possibly some clinical trials.

The change in my mum is astonishing. All of a sudden she's up out of bed, eating lunch and sewing. She went from feeling abandoned and scared to feeling hopeful again. She told me that even if they can't actually do anything, there will be people who care and support services she can access. She's right. :)

[TracyK]

So glad your mum is feeling more hopeful. You are in my prayers.

[Mskanga]

Having a good doctor is VERY important. My daughter's would kiss the ground her oncologist walks on if they would let her. She has 100% trust and faith on him and his team , they saved her life.
Having a good doctor on your side and a possitive attitude is half the battle.....keeping you in our prayers!

[zalansky]

Ember -
I haven't been on this thread much lately, so I am just seeing your post now for the first time. Your post touched me so much, I felt I had to reach out to you. I lost my mom to what they called pancreatic cancer back in 1998 when I was only 29 years old. She was diagnosed a year prior. They said that is could have originated in the bile duct and she had always had gallbladder issues, so who knows if it was truly pancreatic but all in the same region I suppose because it was terminal and there was nothing they could do except chemo. She did do a few rounds of chemo but it made her so weak and sick that in retrospect, I don't know if it was worth it. She did live almost a year after her diagnosis. I know they said your mom is terminal, I hope she proves them wrong and you get more time with her than I got with my mom.
I know how frightened you must be feeling right now. I know exactly those emotions are going and how one day swings to the next. I was VERY close to my mother and the news was devastating. I couldn't decide if I felt worse for myself, losing my mom and best friend or worse for my mother - knowing that every day could be her last and having to leave her loved ones behind. Its the worst and most heartbreaking thing that has ever happened to me.
Its been 11 years and there is not a day that goes by that I don't think of her and miss her. The pain has subsided for the most part and of course I have great memories of her.
I wanted to reach out to you and let you know that I am here for you if you need to chat with someone who understands. I think that wuld have helped me greatly when i was going through it.
I understand the orphan thing too! Thats something my sisters and I have said many times. We ended up losing my Dad a few years later to colon cancer, so I was a true adult orphan at age 38 thanks to cancer. So you know how I feel about cancer!
Again feel free to PM me. I know lots about treatments and stuff like that - as many of us here on this thread do.
I will keep you and your precious mom in my thoughts and prayers. Keep us posted, many hugs sweetie.
:hug:

[Hillbeans]

Ember,

I am so sorry for what you are going through with your mum and her illness.

My mother was diagnosed with Gallbladder Cancer in 2003 and she was stage 4 at the time. Her illness progressed quickly and unfortunately she passed away shortly after. I think due to the nature of this type of Cancer the prognosis is not good, and I am just so very sorry. It's also rare, and not diagnosed early.

This August 17th will be 6 years :sad1:

I will keep you and your mum in my good thoughts and prayers. Please PM me if you'd like to talk off-line as I don't want to give you any information you don't want or need at this time as I know how overwhelming this all can be.

Zalansky :hug:

[live4christp1]

Just want you to know you, your mom, and family are in my thoughts & prayers. :hug:

Cristy

[Ember]

Yesterday we FINALLY met with the oncologist at the Cross Cancer Institute. It has been over three months from the time we received the diagnosis. In Canada, there is no other choice but to wait. The oncologist who initially gave her the diagnosis should have done the referral immediately, instead he did nothing and we had to go through our GP. (The referral process normally takes about three weeks, NOT three months.)

She had a whole series of new tests and very jaundiced. Because of the jaundice she is ineligible for chemo. Had we gotten the referral in a timely manner this option would have been open to us. I am so mad I could quite literally drive my car over that first oncologist. :mad: (I won't. But I sure do enjoy thinking about it.) That said, I know it was nothing we did. We were at the doctors office every week asking questions, there really isn't anything else we could have done.

So now we are into palliative care. At some point, my mummy will die. And I will have to go on. I don't know how I will do it. :sad1:

[minniebeth]

:hug:I will keep you all in my thoughts~

[dogodisney]

I am so sorry.:hug: I feel your pain. I lost my mom to cancer 7 years ago.

[CarolynU]

I have read all of this thread and I am just so sorry. Cancer blights the lives of so many people. When will there ever be a cure? My thoughts are with you and your mum xxx

[live4christp1]

Yesterday we FINALLY met with the oncologist at the Cross Cancer Institute. It has been over three months from the time we received the diagnosis. In Canada, there is no other choice but to wait. The oncologist who initially gave her the diagnosis should have done the referral immediately, instead he did nothing and we had to go through our GP. (The referral process normally takes about three weeks, NOT three months.)

She had a whole series of new tests and very jaundiced. Because of the jaundice she is ineligible for chemo. Had we gotten the referral in a timely manner this option would have been open to us. I am so mad I could quite literally drive my car over that first oncologist. :mad: (I won't. But I sure do enjoy thinking about it.) That said, I know it was nothing we did. We were at the doctors office every week asking questions, there really isn't anything else we could have done.

So now we are into palliative care. At some point, my mummy will die. And I will have to go on. I don't know how I will do it. :sad1:

:hug: I am so very sorry. I know there isn't anything I can say to make it any better. When we were told it all just felt like a bad dream and I keep hoping that we would get a call saying the diagnosis was wrong it was just this minor thing but deep down I knew it was real. It was just hard to accept. Please know that I will be praying for you and your mom. :hug:

[sarasotamom]

I am so sorry. I have had two of the people I care about the most (my husband and daughter) diagnosed with cancer in the past year. Both are in remission now, but there is always the next Pet Scan that can be bad news...My husband's diagnosis took a month..very rare form..I know how frustrating it can be..My family and I pushed the doctors to get moving. I have watched my baby boy ( boys never grow up) and my baby girl fight this dreadful disease with everything they have...I know it is not easy to watch the one's we love the most suffer. I wish I could reach out and give you a great big hug:grouphug:

The doctor's were not very optimistic with my husband's diagnosis, but I really think God sent us an angel when we met his oncologist. The chemo worked and right now he is cancer free. Is there any way you can get a second opinion? This is why I do not want government health care. Too much red tape to jump through. We pushed hard to get my husband treated. Our surgeon did not want to perform the surgery because he suffered a heart attack, (wanted to wait at least 6 weeks). We said no..(as did his cardiologist, GI, and oncologist). He finally did the surgery 10 days after the heart attack. We pushed the doctors hard. I know how frustrating it can be.

Cancer is such a dreadful disease. I am so sorry you are going through this. Please know that there are many here that are thinking and praying for you and your mum.:hug:

[Ember]

A ray of good news - my mum will be having surgery on Monday to have a stint put in that will help relieve the jaundice. If (and it's a big IF) the liver function is okay she may still be eligible for chemo. I'm not building castles in the sky, I know that chemo may not happen and that this won't magically make anything better - chemo would MAYBE mean a few months... But my mum will be more comfortable when she is not jaundiced and that's great. Plus, her spirits are high, so it's hard not to feel a little happy.