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Old 07-25-2009, 12:03 PM   #16
Ember
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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!!

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!
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Old 07-26-2009, 02:20 PM   #17
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I hope you can find a Dr. that will help you.
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Old 07-27-2009, 08:08 PM   #18
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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. to you.
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Old 07-28-2009, 06:32 AM   #19
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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..
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Old 07-28-2009, 11:30 AM   #20
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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 !!
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Old 07-28-2009, 11:43 AM   #21
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I'm sorry your Mom and you are dealing with this.

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.
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Old 07-28-2009, 02:33 PM   #22
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Okay, so we saw her GP today. He was able to tell us that the results of the biopsy are inconclusive. 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.

Last edited by Ember; 07-28-2009 at 03:31 PM.
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Old 07-29-2009, 05:40 PM   #23
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So glad your mum is feeling more hopeful. You are in my prayers.
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Old 07-29-2009, 07:16 PM   #24
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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!
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Old 08-13-2009, 11:48 PM   #25
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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.
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Old 08-14-2009, 11:24 AM   #26
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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

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.

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Old 08-14-2009, 12:47 PM   #27
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Just want you to know you, your mom, and family are in my thoughts & prayers.

Cristy
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Old 09-30-2009, 12:40 PM   #28
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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. (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.
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Old 09-30-2009, 03:11 PM   #29
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I will keep you all in my thoughts~
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Old 09-30-2009, 04:01 PM   #30
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I am so sorry. I feel your pain. I lost my mom to cancer 7 years ago.
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