Is surgery always the answer? (Page 1 of 2)

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!

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.

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.

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

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

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

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

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

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?

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

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