Help - Any One Guide Me?

[wcr]

I'm not sure what I should do.

I had colon cancer and had a tumor removed last November. It was staged a stage 2B, low risk. I was advised by an Oncologist at Chonburi Cancer centre that I didn't need Chemo. I decided for peace of mind that I should have it.

I have had 2 cycles and last month felt very sick and tired. So I've been considering stopping it so I can have a quality of life back. Today I tell the doctor of my thought and why I think I should stop. He says, "I explained to you the side effects and you said you still wanted to go ahead. Why you change now? It is not good to stop as these problems are in your head. I give this treatment to 80 year olds and they are fine. If you stop and then you have a reoccurance later you will not forgive yourself for stopping".

OK, I accept his argument. However can anyone tell me if physically there is a problem stopping Chemo after just 2 cycles, and would there be a problem in restarting later should it come back in 1,2 5 years?

Any advice personal experiences are welcomed.

[Sheryl]

The best advice I can give you is to come to Bangkok and consult a Western-trained, wetsrn board-certified oncologist who is more oriented to patients making their own decisions, and ask that question of him/her as well as asking the obvious question of what percentage chance you have of 5 year survival with and without chemo, so you can quantify for yourself what the potential gain is and then weigh that against the cost in terms of quality of life. One variable that cannot be predicted with any certainty is that a few years down the line there might be altogether new drugs used than the ones now available.

Another point to look at -- if you decide it is worth considering continued chemo --is whether your chemo side effects were optimally managed. There are new drugs which are highly effective in dealing with the associated nausea (Zofran, Kytrel) and also newer drugs which can prevent or reverse precipitous drops in red or white blood cell count.

Even if you do decide to continue chemo, I wouldn't recommend doing so with the same doctor. Treating cancer, with or without chemo, is a long term process in which the patient has to be substantially involved in decision-making and in which the decisions often require a weighing of pros and cons that only the patient themself can do since some of the factors to consider, like quality of life, and how much you are willing to go through for how much of a greater statistical chance of living a little bit longer, are totally subjective.

If any readers on this board can personally recommend an oncologist willing to listen and give weight to the patient's concerns -- and help the patient decide for themselves -- please post details, thanks!

Keep in mind that no one can tell you with certainty what is going to happen in your particular case regardless. But any competent oncologist can, upon reviewing your records, tell you what the statistical odds are in general under different treatment scenarios.

And, of course, regardless of what you do regarding chemo, regular check-ups including colonoscopy are a must, so that any recurrence is more likely to be caught early on.

Good luck to you. I don't think any of us really know what we would do until we are actually faced with such a decision.

[Tammi]

If any readers on this board can personally recommend an oncologist willing to listen and give weight to the patient's concerns -- and help the patient decide for themselves -- please post details, thanks!

Try Dr. Narin Voravud at Bumrungrad - he is at the Horizon Cancer Clinic twice a week. Be very honest with him by telling him that, as Sheryl says, you need him to listen and give weight to your concerns. I had dealings with Dr. Narin for several years and right from the start I had lists of questions and concerns and he always listened. And the nurses there are the best!!!!

[wcr]

Thanks to you two.

Tammi I am not BKK based and don't know the Horizon Cancer Clinic. Where is it?

[wcr]

And, of course, regardless of what you do regarding chemo, regular check-ups including colonoscopy are a must, so that any recurrence is more likely to be caught early on.

Interesting point as another Oncologist I went to see said I didn't need to have another colonoscopy now, even though I thought I ought to 6 months after the operation? He said have a PET Scan one year after finishing Chemo. That is all you need, no further colonosopies.

Right or wrong?

[Tammi]

And, of course, regardless of what you do regarding chemo, regular check-ups including colonoscopy are a must, so that any recurrence is more likely to be caught early on.

Interesting point as another Oncologist I went to see said I didn't need to have another colonoscopy now, even though I thought I ought to 6 months after the operation? He said have a PET Scan one year after finishing Chemo. That is all you need, no further colonosopies.

Right or wrong?

I would have both initially because PET sometimes does not show the cancer because some tumours do not take up the radio-active glucose. If the PET does show the cancer then I personally would continue with PETs because I don't like tube up my bum. But colonoscopy is a lot cheaper than PET.

[Tammi]

Thanks to you two.

Tammi I am not BKK based and don't know the Horizon Cancer Clinic. Where is it?

Horizon Clinic is in Bumrungrad Hospital.

[jackoneilone]

PET scan is an option. CT scan is another option that you can combine and ct can give you "virtual colonscopy". Mri can be done as well.

as for chemotheraphy you made a wise choice. the usual course i think is 12 cycles every 2 weeks atleast in the folfox regiment and the doctors point is legitmate in so far that you would hate yourself but maybe could have been more understanding of your feelings then again he may have expressed it differently but having started your chemo session if its folfox then you have 10 more sessions to go and you want to quit after only 2. not a wise move. if it were me i would stick it out and try and control or alleviate the sides as much as possible but id rather get it over with once and not have any chance of it coming back than hate myself later etc.

[wcr]

I'm not on folfox 4 as that is NOT recommended for stage 2 (Drakes) colon cancer as trails have proved not difference in having or not having. Stage 3 is a must.

I'm on 5FU/LUV? Or similar letters via an injection. 6 seesions 5 days per week.

[Sheryl]

That would be 5FU plus either levamisole or leucovorin. Probably leucovorin (FULV). And I think you mean Dukes Stage B.

I did a bit of research on this. Seems that there is indeed a dearth of evidence on the benefit of chemo for Stage IIB, although there are trials ongoing at present on this. What is apparent from the trials done so far is that, if there is any benefit, it is of very small magnitude, i.e. an improvement in 5 year survival rate of only 2-4% at most. It has been definitely shown that chemo does not produce a change of 5% or more. Much larger studies are underway to see if theer is in fact even a 2-4% benefit (it takes very large samples to detect a benefit that small with statistical significance). the 5 year survival rate with surgery alone is 75-80%. So at most, you are looking at the difference between 75 and 78%, maybe not even that much difference.

Now, only you can decide if the side effects etc of chemo are worth a possible but unproven increase in odds of a few percentage points. Certainly, you will not be acting irresponsibly if you stop chemo, since most experts would have recommeneded against starting it in the first place. Of course, if you develop a recurrence you may wonder if continuing the chemo would have a made a difference...although the statistical odds are that it wouldn't.

In terms of your concern that stopping after an incomplete course may make you less likely to benefit from chemo at a later time, this is a possible risk of that with respect to the 2 drugs you were given, and these are the drugs most often used at present for say Stage III ca of the colon. On the other hand, only a minority of tumors respond to these drugs to begin with -- about 20%, enough to make it worth trying in Stage III but still by no means helping every one. In other words, there is no guarnatee that chemo would be able to help you in the future even if you do complete the course now.

You don't mention exactly what effects of the chemo you found hardest. If it was nausae/vomiting, you can probably obtain better relief friom better management. However if it was the generally wiped out, achy feeling and this wasn't related to a deprerssed white count, there's not as much that can be done for that. I must say that I find your doctors response very unhelpful and unsupportive, as well as inaccurate...it is not all in your head. And it is not uncommon for people to find chemo so difficult that they discontinue it. Speaking as a former chemotherapy nurse, chemo can be hel_l to go through, and patients need all the support and sympathy they can get.

I still think it would be worth your while to discuss this with another oncologist. You've gotten a personal recommendation from Tammi. It will mean a trip into Bangkok, but may well be worth it in helping you feel comfortable with whatever choice you make.

Ultimately, though, you'll have to decide. Unfortunately the data just aren't there to point you towards the best choice. If it were me, and I felt confident of the staging (IIB), I don't think I would go through chemo for the sake of possibly a few percentage point better odds. But it's not me, it's you, and only you can decide. The important thing is to be at peace with yourself and whatever you choose to do, and promise yourself not to look backwards and torment yourself with " what ifs" and " if onlys" regardless of how things turn out. There are no guarantees either way.

All the best

[Prakanong]

Thanks to you two.

Tammi I am not BKK based and don't know the Horizon Cancer Clinic. Where is it?

Horizon Clinic is in Bumrungrad Hospital.

My friend who had stage 4 went there - he was very well treated and survived longer than the prognosis given in the UK.

I think it was Avastin he was on and it was not cheap

[wcr]

Thanks Sheryl for your detailed reply.

Well after a long think I eventually turned up at the Chonburi Cancer Centre today and started my 3rd session. I received a phone call from my mother telling me her "gut feeling" was I shouldn't stop and my partner informing of the same! I know ultimately it is not their decision but mine. I'm going to see how this session goes and take other advice as suggested above.

Your comments about support are very pertinent regards Thailand. There isn't any basically!!! I am at a government hospital as my insurance won't cover me for chemo. Any private hospital I guess maybe better, but they'll only be thinking of the money (my personal experience) and will support you at a cost, and not maybe in the best way either.