October 10, 2009 at 4:45 am #21353ron-smithMember
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.
RonOctober 10, 2009 at 3:35 am #21352kctasty2004Member
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.October 3, 2009 at 10:35 pm #21351wendyvpParticipant
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?August 19, 2009 at 12:06 pm #21350darlaParticipant
Thanks for resurrecting this thread. I had not seen it before & it has given me a lot to think about.
DarlaJuly 28, 2009 at 12:10 pm #21349louiseParticipant
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.
LouiseJuly 28, 2009 at 10:44 am #21348magicParticipant
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 JanetJuly 28, 2009 at 7:16 am #21347rs_shadow0000Member
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 InsuranceSeptember 5, 2008 at 9:12 am #21346
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…September 5, 2008 at 4:17 am #21345missing-uParticipant
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.
Missing USeptember 4, 2008 at 8:12 am #21344
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!September 4, 2008 at 3:03 am #21343ireneaMember
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.
IreneSeptember 3, 2008 at 3:22 pm #21342
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.September 3, 2008 at 1:08 pm #21341karenParticipant
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.
KarenSeptember 3, 2008 at 11:38 am #21340
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.September 3, 2008 at 8:26 am #21339
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.
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