1 (edited by Frogspawn Wed, 03 Sep 2008 04:40:31)

Topic: Is surgery always the answer?

Hi All

It is good to see so many positive people on this website. Good attitude has got to be half the battle hasn't it?

My father and brother both died of Cc (Dad 4 years ago, brother a year ago) both with cancer in the biliary tree.

Having seen some of your comments about treatment i think CC presents some really difficult choices about what to do for the best. The main point of my note is the choice of whether to have invasive surgery or not.

My father (69) decided not to have any surgery having been persuaded by doctors that it wasn't worth it... their argument being that because of the location of the cancer, trying to do a resection or transplant is not often possible or even successful. As my father had already had two colon resections (one in each of the previous decades) i can understand that he was fed up with the whole idea of more surgery...and he decided to call it a day. He lasted 18months to 2 years after that having had a couple of stents put in during that time to aleviate the jaundice, itching etc etc.

Can't say i blame him too much for this...after all he had to put up with more than most in his lifetime...though i am kind of sad that he never got to see my three children and  to be honset i did harbour a little bitterness with the decision he made at the time.

My brother told me about his CC on the day of my fathers funeral (he had CC in exactly the same place) though he was aged 49 at the time. He decided to opt for surgery (which was a bit of a punt) given that he was fairly young and still had teenage daughters and maybe had more to lose than my dad.

Problem with my brothers decision was that they found they couldn't do anything for him  (after they had opened him up)by way of resection or transplant and, i think this is my point, it set him back in a lot of ways. It reduced life expectancy, his quality of life and exposed him to a good deal of pain and suffering that my father avoided (more exposure to infection, pain from surgery etc etc).

All i would say is that some times no intervention is the best treatment. I know this may not sound very positive to some of you...and a few years ago i felt very differently... don't be afraid to say enough is enough.

Good luck and God Bless to all of you suffering from this very nasty illness.

Frogspawn

Re: Is surgery always the answer?

All the literature says that for now, surgery is the only cure for cc. 

Many, if not most of us on this board have not been able to have surgery, or have had unsuccessful attempts at resection. 

However, some of us have had a good response to chemo/radiation therapy. 

This type of cancer really attacks people in different ways.  Some people succumb within months of diagnosis, while others of us last years.  You just don't know.  I am one of the fortunate ones.  My Gemzar/Xeloda regimen has been successful at shrinking the tumor and preventing metanasties.  We will continue with this until it is no longer effective, then try something new.

I hope and pray that I, and the others with this terrible disease, can hang in there until a cure or more effective treatments can conquer this disease.

Re: Is surgery always the answer?

From reading the literature it seems that it is very difficult for the surgeons to know how far progressed things are without doing some kind of invasive intervention....and as you say surgery is the only option for a cure.

One thing i forgot to mention about my brothers surgery was that it impacted how quickly he was able to re-commence chemotherapy...he had to wait at least a couple of months after th4e attempted surgery before he could start again... at the time my brother (a qualified Pharmacist so not a lay person in any respect) reckoned that it would have a negative impact on his survival time.

I don't know whether you have experienced this with Chemo...but he seemed to suffer terribly from post operative infection...and when he was allowed to recommence Chemo that only seemed to get worse beacause of the "Carpet Bomb" effect on his immune system. I'm glad you are having a better experience!

I suppose, at the end of the day, my Dad and brother had two different perspectives. One decided not to opt for surgery, the other threw everything at it.

I should say that my 2nd hand experience and perspective is coloured by the state funded UK NHS system... Make of that what you will!!! This website is fantastic...so many shared experiences... i wish i had seen something like this a year ago!

4 (edited by marions Thu, 04 Sep 2008 12:10:18)

Re: Is surgery always the answer?

Dear Frogspawn...I am so sad to hear of your losses.
Although, on both sides of the spectrum, your Brother and your Dad chose to proceed with and without treatment respectively, they had made their decision based on their personal reasoning and therefore are, in my opinion, highly admirable people.  At times, we have a tendency to forget to honor those decisions of our loved ones when dealing with their illness.
I agree with you in re: to the invasive invention in order to detect the true progression of the disease.  Also, I would like to add that imaging such as MRI and CT cannot detect any nodule less then 1 cm in size as imaging plates are in the thickness of

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: Is surgery always the answer?

Frogspawn... Sorry for your losses.  I would also like to thank you for adding your valuable perspective on the subject matter of should I or should I not. I kind feel like I've tried both after 9 1/2 years, an dstill trying to figure out which way to go ,as so many option and interventions do exsist.  A real good friend of mine just passed away from cancer in England last week.  Her Cancer was so far advanced that she lived only four days in the hospital.  It goes to show you how long someone can go on living by not knowing or having a positive mind ,maybe an equal of not knowing they even have cancer.

God Bless,
Jeff G.

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

Re: Is surgery always the answer?

Well, Frogspawn, I have been on this board for a while and I thought I had seen and heard it all but after reading your story I see that the limits of cruelty of this disease are unknowable.

My mother used to tell a story about the people in the village complaining to the priest about their troubles so the priest suggests they all meet in the village square to trade troubles but after hearing everyone else's troubles they all decide to go back home with their own. I think of this story all the time when I read the many sad tales here, though we lost my mother at 66 I feel lucky we had eight months with her since I know some don't even get eight weeks.

Patty

Re: Is surgery always the answer?

Thank you all for your kind words ... they are of tremendous comfort to me even a year on... i know you all have your own scars and losses because of cc. It is a nasty disease, no doubt.  I think i read somewhere that there are 500-600 cases of cc in the UK every year (Medline i think).

I have mentioned elsewhere on this site that i think my father (and possibly my brother though i don't know for sure) had Torre Muir syndrome... an association of skin cancers and internal malignancies caused by a fault in one of the DNA mismatch repair genes (the genes that repair cells in the body that are faulty).

The main internal cancer that this "Causes" is colon cancer but, as you have read, my brother and father both got cc as a result which is a lot less treatable than colon cancer (and the survival rates are so much more depressing).

Torre muir syndrome is said to be quite rare but the literature implies that it is under reported (being far more common than the figures would suggest). I also notice that on the cc sites and info on the general press they don't often mention genetic factors as a primary "cause" of cc... which may be the main determinant in my family.

It is worth anyone who has had sebaceous adenoma, sebaceous epithileoma melanoma, keratacanthoma or anything similar before or after getting cc investigating possible geentic links...this could help family engage in genetic screening and detective interventions long before they have any actual manifestations of cancer.

Re: Is surgery always the answer?

Good Point tiapatty. I had never thought of it quite like that before. The time i had with my dad and brother was actually quite long compared to some of the sad stories you read about on this site. 8 months... 8 weeks doesn't seem like long does it but we try to get the best out of what we're given, yes?

Good on Jeff G...9 1/2 years is fantastic! Reviewing my comments they now seem a bit morbid. Choices are difficult aren't they. Marions point about respecting them is a good one...though as i said before i don't know whether i immediately appreciated that at the time of my fathers diagnosis.

With Torre Muir syndrome (which has links with lots of different cancers including cc) you can really see the difference in the level of research and comment between the different cancers it causes. Colon cancer has massess of literature and research devoted to it (and there is lots of related comment on Torre Muir Syndrome)...but cholangiocarcinoma hardly gets any comment at all even though it is sometimes associated with the same genetic predisposition.

Makes me think that in publicisizing cc and its impacts and in trying to attract funding for research that, for those of you with genetic/familial conditions (and to benefit everyone else with cc), it might be worth the foundation making more of a noise from that angle.

Re: Is surgery always the answer?

Frogspawn,
Just to comment on the genetic side...I truly believe there is a connection.  My husband has cc and after his diagnosis I questioned my Mother-In-Law.  Her father, Rob's grandfather, died of inoperable liver cancer (they all lived in Wales at the time).  Apparently the doctors told him he had about four years to live (no clue how they knew that) and the family kind of forgot about it because he was feeling so well and sure enough he died at 62, four years later.  My Mom-in-law does not remember any other specifics (she is 86), but I see too much of a connection and therefore have warned my daughter to stay on top of this with periodic screening and also when she has childern to make sure they are scanned as they mature.
Karen

Wishing all God's blessings!

Re: Is surgery always the answer?

Another thing to do is to do a family tree and to identify people who have had cancer, the nature of it etc etc. The further back you can go the better (some Doctors use the Amsterdam criteria, based on family history, to determine eligibility for genetic testing). In my limited experience it tends to help get engagement with Physicians and makes them more likely to put you on screening programmes.

Re: Is surgery always the answer?

Hi,
Wanted to add my own two cents on this very interesting topic.

I have struggled with the issue of surgery -- currently it is scheduled for next week. Because of location it will be extremely technicaly difficult, and the recovery nothing short of nightmarish. Like all of us, I also face the possibility that the surgery gets aborted in-process if they find that the tumor cannot be removed or that the cancer has spread.

I am one of the few who is absolutely asymptomatic (with the exception of a prlonged deep fatigue) and whose liver function, etc remains perfectly normal.

I have a very strong inclination to leave well enough alone, and do absolutely nothing -- no surgery, no chemo -- until I get hit with symptoms. This is, of course, the most awful kind of lottery. I know that even in the best outcome with surgery my life as I know it will effectively end.

However, i also realize that surgery is not even an option for most people by the time of diagnosis, and if I decline that rare opportunity I am, you might say, rejecting a chance at long life.  But it could also be that the tumor -- which is very lazy, it seems -- could just hand out and do nothing for 20 years. I will never know.

It seems like these days, some providers are recommending a "do nothing" approach when people have reccurrence but no symptoms, with a "leave well enough alone" approach. I wonder if, in a few years, this will become the approach even for first-line, newly caught, asymptomatic tumors.

Irene

Re: Is surgery always the answer?

I think you have far more eloquently captured the difficulty involved with this decision than i ever could. It definitely has the feel of a lottery doesn't it and in your situation is made all the more confusing when you don't have all of the regular associated symptoms.

The more we can get people to research this horrible disease the better. More research should provide more options.

I suppose i am always a little sceptical when a "do nothing" approach is recommended by providers...money and medicine are not particularly good bedfellows (especially in an insurance funded environment). Though (as we have discussed before) do nothing for some people will be the "right" option on occasion.

I will be thinking of and praying for you and your well being throughout and after your surgery Irene!

Re: Is surgery always the answer?

Frogspawn,

My sincere condolensces for your losses.  I too lost my Dad at the too young age of 69 after only 2 months of diagnosis. When he was diagnosed the CC had spread to his bones and it was only after four weeks of knowing he had secondary cancer that they found the primary.  He had no other options than palliative care.

Having surgery or not is a personal decision and a torturous one at that, expecially knowing how difficult CC surgeries are.  However, having that option is having an opportunity to do something about this disease if you want to.  For us, the decision was not ours to make... having walked the difficult journey with my Dad I am left with the hope that for others who are diagnosed with this illness, that they will have options.

Brightest Blessings,
Missing U

Re: Is surgery always the answer?

I am sorry for your loss too.

You rightly point out that choice is sometimes a luxury that not everyone has with this horrible disease. I suppose choice gives one the feeling of control in a situation where control is not commonly withi one's grasp...

15 (edited by rs_shadow0000 Sat, 12 Dec 2009 01:07:58)

Re: Is surgery always the answer?

Treatment of chronic anovulation resistant to clomiphene citrate or CC by using an oral contraceptive ovarian suppression followed by repeat CC treatment. So, it means, it is only for a woman? That is why I don't understand if why your brother told you something about CC treatment after your father's funeral?


_________________
Citizen Insurance

Re: Is surgery always the answer?

I think -how brave Frogspawns observation because it is difficult to present a more moderate point of view,treatmentwise-yes it is actually-and I think some may refrain from saying anything so heres to a wide variety of opinions being expressed               Janet

Re: Is surgery always the answer?

Frogspawn,
I would love to see the genetic link more fully explored. Any idea which gene is represented by your phrase, "a fault in one of the DNA mismatch repair genes (the genes that repair cells in the body that are faulty)"?
My mom was diagnosed at the age of 85 in Nov. 2006, chose not to have active chemo, radiation, or surgery, and was only referred to hospice a couple of weeks ago. She was on low-dose (pills at home) chemo, but those have stopped as they really don't have short-term benefits.
My own diagnosis was in May 2007 when exploratory surgery and pathology confirmed the cc diagnosis. I have had a full roller-coaster with surgeries, chemo, stents, radiation, metastasis, and I'm in my second period of remission, wondering if the monster is back.
When my mom saw her oncologist 2 weeks ago, he strongly recommended genetic testing because for mother-daughter to both have such a rare cancer suggests there could be a genetic link. He suggested specifically looking for a mutation of gene marker 53. I'm wondering if this is the same gene you mentioned? Have you had genetic testing?
I appreciate your sharing, as I had never heard of any other family connections but I have a large family (7 brothers and sisters; my 6 kids; numerous cousins, nieces and nephews..). Mom and I had each had gall bladder problems and surgery to remove gall bladder. One of my sisters has gall bladder issues and has delayed having surgery.
Your emotions are certainly understandable. Makes me wonder how my brothers, sisters, and kids are doing. Do they put on a good face, or are they experiencing many of the same doubts and angst without wanting me to know?
Again, thanks for sharing.
Louise smile

Re: Is surgery always the answer?

Thanks for resurrecting this thread.  I had not seen it before & it has given me a lot to think about.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Is surgery always the answer?

to surgery or not to surgery that is the question.  Having had my last lot only 8 weeks ago I don't think I am ready to make this decision again, so soon.  I am just viewing all the posts on this site so when I do see the oncologist next week I will have some info to assist me in making a decision.  Wouldnt it be nice if someone else could make those decisions for us and they were always the right ones for us?

peace, love and good vibes  Wendy

Re: Is surgery always the answer?

Although they say, the only cure of CC is surgery, I wish my mom would have never had it.  She went in for the Whipple on April 8th and after a rare leak wound up in the hospital in bad shape until July 1st.  Her body could never recover to get the chemo that she needed and by then the cancer was back.  We got 5 months with my mom, but she was recovering from surgery the whole time. It was an awful experience, but I guess at the time when you think surgery is your only way to cure it...you do it.  I would think long and hard though.

Re: Is surgery always the answer?

kctasty2004

Nobody has all the answers.  We can never even be sure if we have made the correct decision.  It feels as if you are beating yourself up because you gave your opinion on treatment at the time it was required.  Nobody can do better, not even the experts.  You can only be guided by the best information you have available.

I have had 2 episodes of surgery to try to cure this cancer but both "failed".  Or, put it another way, they were not complete successes.  Were my decisions wrong?  I don't think so because without the surgeries I may not be here.

Your mother has had a shorter, possibly harder, time.  Was the surgery wrong?  Nobody knows what the alternative would have been like.

Best wishes

Ron

Re: Is surgery always the answer?

My father is facing the surgery or no surgery now. His heart doc said he did good on stress test. My father was almost hoping the doc would say no surgery but now decision time is coming closer. All of your insights are helpful. Thank you.

Re: Is surgery always the answer?

Adam

If it is any help then I can say that my surgeries went very well and I recovered quickly.  There again, I am a lot younger than your father and my other health problems did not surface until after the surgery.  After the 2nd one I was more reticent about the possibility of a 3rd, but ended up almost begging the surgeon, but to no avail.

Remember, everyone else can offer advice, but it is only your father who can decide what he should do.  Listen to him.  I have certainly found the chemo to be the harder option.

Good luck with whatever road is chosen.

Ron

Re: Is surgery always the answer?

Adam, Ron is so right. This is the biggest surgery of one's life and yet it is a very personal decision. Teddy was 73 when he had his Whipple and is still with us. The surgery bought him a good 4 years so far. Honestly we had no time to think. We were out of town, he jaundiced and go extremely sick almost over night. We lucked out on the surgeon and our decision. Many good thoughts going your father's way! What ever he decides will be the right decision.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Is surgery always the answer?

Ron & anyone who has had experience of surgery.
I was recently diagnosed with CC and I am now facing the decision on whether to proceed with surgery or not.  I seek your advice/experience of surgery.  How effective is it?  how long does it take to recover? how is quality of life effected? and any other information you believe would be relevant to help me make this decision.

Thanks...........Gerry