1 (edited by Nn Mon, 18 Jun 2007 16:09:05)

Topic: Anticipating first visit to oncologist - advice?

I am grateful to find this forum and wish to convey my best wishes to all of you.  CC is a tragic disease, but it seems there is much to be hopeful and positive about and the stories here are full of inspiration.

A close friend of mine (JJ) has just been diagnosed with unresectable cc ("bile duct cancer" - diagnosis of unresectability made surgically).  I'm not sure whether it is intra- or extra- hepatic, but I understand that the cancer has metastasized and/or involves the portal vein. JJ is in her early 30s and is otherwise healthy.

Obviously, it is very hard to deal with this difficult news.  It has been hard because she hasn't been told much other than "you have months to live" , and hasn't had access to any specialists other than the palliative care people while she waits for an appointment with an oncologist. (It's been over a month since the surgery but there is a waiting list to get into the cancer clinic here - is this typical?  it's been very trying....)

On reading the postings here, I've been thinking of ways that I can be helpful to JJ.  One way would be if I could get your advice on what she should expect and ask during her first visit to the oncologist, which will happen (finally) next week.  I would be grateful for your thoughts on what one should be sure to ask about.  It seems that there is no "standardized/conventional treatment" for this disease, and I know that it is sometimes difficult to get information about clinical research from many physicians, who are often overburdened and may not be aware of everything. 

And so I'm gathering a list of questions that she should ask about.  I apologize if some of this is repeated in other forums - I've read as much as I can.  So far, the biggest leads regarding potential experimental therapies seem to be:

- photodynamic therapy
- dendritic cell vaccine therapy (and/or other immuno-therapies)
- Sorafenib

Are there others that she should ask about or investigate?  Can you share your "things I wished I had known before my first visit to my oncologist"?

I am grateful for your advice, which I can then pass on to JJ.

Thanks for reading.  My thoughts and prayers are with all of you.

2 (edited by Sara Fri, 15 Jun 2007 18:05:20)

Re: Anticipating first visit to oncologist - advice?

Nn - I feel like we're the same person.  In November 2005, my best friend was diagnosed with intrahepatic cholangiocarcinoma.  She was 30 years old at the time of diagnosis.  I spent the next year of my life pouring over internet sites, soaking up any information I could find.   I quickly stumbled across the Clements family (see the blogs linked on the wiki site) and put my friend in touch with them.  A couple months later, Rick kindly created this website and published it on the net.  Slowly but surely, we've formed a family among this community.  I hate having to welcome you to our family, but I'm so happy that we have a family here for you and your friend to turn to.  (two years ago that was not the case - thank you so much Stacie and Rick!!)

I'm going to go through your email, and try to address all your points.  No doubt my opinions will vary from others'.  No matter what - there is no right or wrong answer from the outsider's perspective.  Every decision your friend makes is the right decision.  Always remind her of that. 

First, I highly recommend your friend gets in touch with an oncologist at one of the top cancer research hospitals.  I'm not sure where you are located, but in the US, less than 5,000 patients are diagnosed with cholangiocarcinoma every year.  Because of those small numbers, very few oncologists have the experience to appropriately advise your friend during her treatment.  However, the main cancer research hospitals (MD Anderson, Mayo, Sloan-Kettering, and Dana-Farber in the US) see many more of these cases than any of the other hospitals.  So, depending on where you are located, you should encourage your friend to visit one of these hospitals.  I cannot really comment on hospitals outside the US because I am not as familiar.  I know there is a great surgeon in Leeds in the UK.  After attending the big American Society of Clinical Oncologists conference, I am understand that the Princess Margaret hosital in Canada is the premier institution there.  But my non-US understanding stops there.

I think it's typical to be caught in the administrative red tape, thereby having to wait a while to see an oncologist.  However, someone needs to be a great advocate for your friend and get her in ASAP.  Never take no for an answer.  As you read through more posts, you will see that many patients experienced "no's" from hospitals and insurance.  But if you are persistent, you will eventually get a "yes."  So I encourage your friend and her care givers to be persistent.  Don't take no for an answer. 

I cannot personally comment on what to expect from the first oncologist visit, as I have not sat in that office.  But there are many people on this board who can (and will) comment. 

You are right - as far as non-surgical options are concerned, there is no "conventional treatment" or standard for care for cholangiocarcinoma.  So pretty much any non-surgical treatment your friend receives is experimental.  Surgery is the option for cure.  Everything else is all about improving quality of life and length of life. 

I have personally been very impressed with the data I've seen where Avastin is incorporated with chemotherapy for treating other cancers.  (like colon cancer)  There has been an increase in overall survival, especially when the Avastin is never discontinued.  However, I am not aware of a similar study done on cholangiocarcinoma, so I really cannot comment on whether this will help your friend or not.

I wish you and your friend well.  I will add you both to my prayer list.  I wish I had more definitive information to share with you.  I think from this message, the most important element is to get into a major cancer research hospital.  She needs to see a specialist, and she won't find a specialist at just any hospital.

-sara

30-something caregiver

Re: Anticipating first visit to oncologist - advice?

Nn.... I'm sorry to hear about your friends diagnosis.  It is difficult to recommend types of treatments as everyone responds differently to different treatments.  If you go to the research section of this site there are many links to some top notch cancer centers that can provide you with lots of information.  Also, whats working /Good News section has onfor of what alot of members have tried or are trying right now.  Myself, I'm taking Oxyalplatinum(sp) IV and Xeloda orally and my blood work has shown significant change for the better, in fact all my blood test are within normal ranges.  However, some people have had to stop or reduce the strenght of this regimen due to complications.  I had to cut back dosage before I could tolerate it and continue with cycles of treatment.  You say JJ has had surgery to determine non -resectable?  Did they do any type of resection ?  Did they say how much cancer mets are involved and where? What Cancer Center is JJ going to?  I'm not trying to be intrusive but there are members on this site from several countries and states who would be more than willing to provide some suggestions and input of where to go for  really professional care and what type of treatment may be available in your location.  One thing I did notice immediately is you said JJ was given weeks or months?  Is Her cancer that badly mets?  Or is that something you were told just because of the type cancer?  Nn, You can tell JJ that number one is a positive attitude to the best of her ability.  One thing that seems to be agreed upon is get a second opinion and even then some people have far exceeded many of the prognosises given by doctors.  I personally have been battling this thorn in the side for over eight years.  I've had surgeries and now on my 4th different chemo regimen.  Ive used different supplements and tried some alternatives and continue doing so.  I've had my roller coaster rides primarily caused by treatments not the cancer itself.  I do agree that there is no known cure at this time but you can be treated to slow things down or possibally stablize it for awhile.  JJ needs to understand there is always hope!!! and that cure could be around the corner who knows when we'll wake up and hear the news.  I guess I better close for now.  I wish I Knew a little more of JJ's infor/condition so I or another member could give you more than a pep talk.  Hope to see you on site again, I'm sure there is plenty more advice to be shared.
Wish You and JJ the best!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

4 (edited by marions Sat, 16 Jun 2007 16:17:17)

Re: Anticipating first visit to oncologist - advice?

Nn.
I agree with Sarah and Jeff. Opinions vary widely when it comes to treatment for this cancer.  You might also want to contact a few other physicians such as liver transplant surgeons, possibly someone, who is also specializing in bile duct surgery, in order to verify the current position of non-resection. In some instances, a CT scan plus a copy of the reports is all that is needed for another evaluation however, many times a personal visit is required. 

It will be highly unlikely for any physician in this country to recommend Dentritic Cell Therapy although, when my husband was battling this disease and he was not responding to the current treatment, I did notice some change of mind.  I consider Dendritic Cell Therapy a viable option in the treatment of CC. 

More then anything, do not give up hope since many people respond favorably to various treatments. 

Wishing the very best for J.J. und you

Marions

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Anticipating first visit to oncologist - advice?

Dear all, thank you for your kind and helpful advice and your warm wishes.  I anticipate that the oncologist visit will be the start of a process, and so will ensure J.J. is able to ask questions about the treatments you suggest.  After the first visit, we'll be better able to assess whether the care she's getting is adequate and where we might go for second opinions and at that point I imagine we'll consult members here.

Please excuse the brevity of my reply.  I very much appreciate your kind and detailed responses (and those of others who might come after you), but right now I'm overwhelmed having spent the last 2 days sifting through information on this site.  I need to get away from the computer.

Best wishes to all of you.
Nn

6 (edited by jules Sun, 17 Jun 2007 15:39:55)

Re: Anticipating first visit to oncologist - advice?

Nn

I am very sorry to hear about your friend.  I thought you might find it helpful if I add to the above info..

I feel quite strongly that chemo should not be pushed as the only option.  chemo induces side effects, although well tolerated in some patients generally I think it is fair to say that in general it restricts quality of life.  My Dad has been treated in Germany for many months now with dendritic cell therapy, his disease is stable and the side effects are nothing more then mild flu like symptoms on the evening of treatment.  It has enabled him to have a good quality of life - nothing like the chemo sledgehammer approach, I believe that more people should be open to this treatment and its benefits - I hope that this treatment can become more widely available. 

Of course it must be borne in mind that every patient responds differently and what works for one may not work for another.. I just know that when you begin researching this disease all the info can seem overwhelming.  I think it helps to hear what is actually working and try to find some hope out there.  I wish your friend all the best and once again I'm sorry that you have to find yourself here.

Have hope,
Jules

Re: Anticipating first visit to oncologist - advice?

I would also like to add that you may not hear what you want to hear (reason my oncologist is nicknamed the Hope Snatcher). Listen to what they have to say, but do not take it as gospel. I have spoken to several doctors (pathologists, surgons, liver experts and ocologists). The differences in what I have been told such as I am a good candidate for a liver transplant, no transplant for you, you will have chemo, no no chemo for you...the list goes on and on and can drive you nuts. But I am pointing this out because there is always more than one opinion and maybe you will need to find a second opinion. I dont believe in giving only pallative care or doing nothing. FIGHT FIGHT FIGHT.

I am personally very frustrated with my oncologist and am looking for a new one. Cholangiocarcinoma is not your run of the mill cancer. My current thoughts on the oncologist front is that I dont want someone who plays it safe. There is no current protocol that seems to be highly successful statistically. If that is the case, and it seems to be from what i have read, then seeing an oncologist who only follows standard practices for this disease may be a mistake. Ideally, I would love to get a new onc who knew about alternative therapies and new treatments in the cancer world in general-not just cholangio protocal. I want an onc who instead of saying "There is no evidence that works for cholangiocarcinoma" says "there is no evidence that it hurts". Following standard practice with this disease (from my point of view) is often not that beneficial. We are a small group with very little research. Just look at medical trials...over 900 for breast cancer, less than 20 for cholangiocarcinoma. With such a small base of information, it seems (to me) wise to gain as much as we can from other cancers and if things seem to help them, why not give it a try.

The point of this long post is that much of your friends hope lies in her hands. Cholangiocarcinoma is a devasting diagnosis. But there is hope. My best friend is a pediatric oncologist and she stresses STOP LOOKING AT THE STATISTICS. These statistics are compiled over ten to twenty years. The advances in treatment over the past couple years have altered the numbers. If you look at the statistics and listen to some oncologists, you might want to bury your head in the sand. Dont. Go to the meeting with a list of questions. Read the forums here for ideas on what is the current practices and what is on trials. Point these out at your first meeting. Keep in contact with everyone who has ever handled your case-a different doctor friend pointed out that doctor's have big egos and dont want to get caught making a mistake by another doctor so if they know other doctors are following your case they are more diligent, plus different doctors have different research interests so overall you will get more information.

As it is the first meeting with the oncologist, the tendency is to be nice. Everyone has this idea that it is rude to question the doctor. Rude, hell. This is your friends life and fighting for new treatments and questioning doctors may be neccesary. Manners are nice, but surviving is better.

I saw a tshirt that said "If i had known how much work it would be, I never would have got cancer"  That is the truth in regards to cholangiocarcinoma. It is so rare and it is likely that your doctor may not be as current on research as one would like. It becomes your responsibility to read up and know the research. Check www.pubmed.com. It will only give you the abstracts to the research papers, but from them you can usually find out which new treatments and therapies are working. Make a note of the auther, title of journal, and title of article and conclusions and take it with you to the oncologist. Many doctors pooh pooh information found on the net, but these are academic journals so they will be more inclined to listen.

I am wishing the best for your friend and I am sorry she had to join this club. But never give up hope. You can get angry, depressed, or scared...but dont stop fighting. You never know what is around the corner in a way of treatment. Pass on my thoughts and prayers to your friend.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

8 (edited by LaineyA Mon, 18 Jun 2007 16:02:15)

Re: Anticipating first visit to oncologist - advice?

Nn, you know what I learned really early in my cancer treatment?   Don't ask questions that you don't really want the answer to...  this is really helpful advice and I learned it the very hard way!    (Someone really frightened me--for no real reason--I didn't even have that type of cancer!)    It seems like not asking everything would be counter to what cancer is all about...but I fight my cancer every single day without knowing a whole lot of specific information...all the time.   Things like statistics (don't apply to me, anyway!)  and what exact measurement my largest tumor is currently, and my personal favorite, "What is my prognosis?!"   (How do they know?  I've never had CC before!) 

Knowing every single detail about everything doesn't make my fight any better (or worse!) In fact, working on goals keeps me focused on what I have to do every single day to beat this terrible disease.   Believe me, in my life I am the major info. junkie, communicator, etc. & I am married to an engineer.  (They just want to "fix" things!)   Cancer has taught me that I don't always need to know everything.   : )   My oncologist (whom I love and trust!!)   takes care of those details for me...and lets me know when I need to know.   We work on "goals" together and celebrate successes.   You can't tackle the entire disease all at once, although that is so tempting.  You have to take steps and focus on parts.   I have to get rid of my mets before we work on other things.  Then we'll work on the main tumor and then remission.   From there, I can become a "maintenace" case--where they scan for follow-ups.   I have an "outline"  --now I have to do battle with the day-to-day.   Get plans and goals for treatment.   Get what you all want in there...things that are important to you. 

I am not advocating being a stupid sheep...just pick what is really important to know and work with that...then learn some more.   This site is really helpful in finding out what you might want to know...  Also, if you have any control over the situation, make sure your friend has an oncologist that they "jive" with.   I don't care if you go to the #1 person in the world--if they don't get you and you don't work well with them...your treatment may be successful; but miserable.   Who wants to be miserable?

Good luck to you and your friend!  Hope to see you in the "good news" section, soon!

Re: Anticipating first visit to oncologist - advice?

Thank you all for your kind and helpful responses.  This is such a great community to have, and I appreciate your thoughts very much.  Best wishes to all of you.