Thursday, August 7, 2008

Seeking Advice & Experience

I've been reading other people's cancer stories and it has occurred to me that I'm not doing everything I can with medical treatment. There may be some procedures out there I should be pursuing.

I've been relying on my oncologist to monitor my tumors. We've been focusing on the cancer in my lungs and liver. I haven't been showing any symptoms from the tumors in my brain and bones, so we're not dealing with those yet. We assume the chemotherapy is hitting everything, so if the tumors in the lungs and liver look like they've stabilized, then maybe the same for the ones in the brain and bones. I don't know if that's the right approach.

I've been reading about some surgical procedures for getting rid of tumors in the liver and I wonder if I'm a candidate for such operations. My oncologist wouldn't be able to advise on surgery because she's a medical oncologist. What I need is a surgical oncologist. One of my doctors (a surgeon) told me that there is no surgical oncology field in Singapore. The surgeons who work on cancer patients in this country are just general surgeons rather than specialists with training in oncology.

I wonder if I should go to one of the big cancer centers in the U.S. to get a thorough look at my treatment from a complete team of specialists - medical (chemo), surgical, and radiation oncology. I've read too many stories about patients who finally find their way to the best treatment for them, only to find that it's too late.

One woman I read about was told by her oncologist that she wasn't a candidate for surgery for the tumors in her liver. Two months later, she found a surgeon who would do the surgery but by then, the tumors had grown so big that the surgery wasn't able to get all of them. She had four tumors in her liver; I have seven. That lady's cancer then spread to her lungs and she died two months later. I've had cancer in my lungs since last August - about a year now.

I keep reading and hearing about other patients who died just months after spread to the liver or lungs and I wonder why I'm still alive. I'm on the eighth chemo regimen so far this year, after the first seven either stopped working or caused side-effects that made it unsafe to continue. This current one seems to be working, but like all drugs at this stage of cancer, it can stop working any day now.

Since I've been feeling so great lately, I haven't been looking into other treatments. Maybe I should. Does anybody out there have any experience with or advice about other medical treatments or procedures I should be considering for the cancer in my liver, lungs, brain, and bones? If you have advice about herbal supplements or anything like that, no thanks. I'm already doing a lot in that area. Now, I'm wondering about medical procedures. Thanks.

8 comments:

Anonymous said...

Hey Shin

Re the liver cancer - my dad had 2 tumours in his liver earlier this year and had the most amazing treatment - I will find out what it was and let you know - it wasn't as invasive as surgery - they basically shot 5 daggers into him and obliterated the tumors with radio but nothing else was damaged - I'm pretty horrified I can't even tell you clearly what it was so will find out all the details and let you know! - don't dis count going to HK - he has an awesome oncologist and surgeon.
I am in Thailand until Saturday so will get back to you on Sunday.
Cheers
Rebecca (fish woman)

Anonymous said...

Hiya,
No idea if the treatment mentioned here is any possible help but worth a mention. I know nothing of it bar the news item here and I've a feeling the way they describe it working may not be a help. Still, if a superfluous email is the only end result, it's worth a try.

http://news.bbc.co.uk/1/hi/england/7521723.stm

Shin said...

Dear Anonymous,

Thanks for the link to the BBC story about chemoembolization. I'm looking into it now and from what I've read so far, it's definitely worth talking to my oncologist about. Thanks so much for this information!

Anonymous said...

Probably being controversial here, but I reckon that invasive surgery does more harm because it actually spreads the disease, rather than cures.

That's from a very unscientific view point, but maybe a good one? Don't ask me what the alternative is, cos I don't know.

simone vaz said...

Hi Shin

I am a cancer survivor too. In Nov last year, they found lesions on my lungs and they were certain my cancer had recurred. Of all the medical oncologists I talked to, only one recommended surgery. She is now my oncologist. I am not trying to plug her, but she did spend 15 years at MD Anderson in the US running clinical trials and is really up with all the various protocols out there. She's Dr Yap Whang Hwee Yong at MT Elizabeth. Tel 6737 8000. She might be able to help.

simone vaz said...

Sorry, Shin, I should have added this to my earlier comment. I am recommending Dr Whang because she recommended surgery rather than the immediate chemo every other oncologist I went to for second, third, fourth and fifth opinions recommended.

In the end, it turned out I had an infection and the chemo would have given it free reign across my lungs when my immunity went down. Dr Whang listened to me, called colleagues in the US to seek their advice about various treatment protocols and in the end, aupported me when I said I wanted the most aggressive treatment possible, something alot of Singapore oncologists seemed unwilling, in my case, to provide.In the end, the surgery found non-cancerous legions, saving me from what would have been a debilitating chemo journey. If you have not already talked to her, another opinion could be useful.

Shin said...

Dear Simone,

Thanks so much for your input. Dr. Whang is my oncologist too. I feel very lucky to have found her after going to two others. As you've found, what makes her stand out among other doctors here is that she listens to her patients. I find that a very necessary but rare trait among doctors.

It's very scary that if you had listened to the other four oncologists, you would be getting chemo that you didn't need.

In my case, Dr. Whang thought the white stuff on my lungs was an infection at first, but it turned out to be cancer. I wish it had been the other way around, like you.

What phase of treatment are you in now? I'd love to know more about your case and compare notes. If you'd like, you can e-mail me privately at shinna66@gmail.com

lisacc said...

I have been paying extra attention to all the Miracle Cancer Cures!! stories recently, and there do seem to be new treatments coming up all the time, though you have to cut through a lot of journalism hype and misreporting.

I wondered about the Patrick Swayze cyberknife thing for my mother, but she told me that you cannot do radiotherapy on the liver because it collapses or something.

The one thing that does seem to recur in all the stories one reads of people who "beat the odds" (for want of a non-journalese expression) is that they kept going for second, third, fourth opinions, and that they travelled, often overseas, and did their own research. And they never took no for an answer, and they never had just the basic treatment offered to them by their local doctors.

There is a surgeon called David Lloyd in Leicestershire who has pioneered a microwave treatment for pancreatic and liver tumours, he claims to have success with people deemed inoperable by other patients. See: http://www.nuffieldhospitals.org.uk/az_showconathosp.asp?cid=4936&hid=17&sid=931&backto=cons - we plan to look into this guy for my mother.

A relative also mentioned a treatment used in Yorkshire(?) which involves killing tumours though alcohol or something, presumably medical grade stuff applied directly, not just drinking it ;)

Regarding chemo: my mother says there is some amazingly effective new liver cancer drug that they use in France, only the UK's National Health Service won't pay for it. I am not sure what it is called but a friend of her friend had great success taking it for her (myeloma-something?) tumours in the liver.