Approach to treatment - any advice appreciated!

[Rock_Robster]

Alright team, there is a lot of experience here, so hoping to ask for your help with a dilemma I’m facing. I’m an Australian, based in Melbourne. Recently diagnosed stage IV rectal with 4+ liver mets. Yet to do full staging, etc.

We have a very good local cancer centre (Peter MacCallum) that provides treatment through an integrated multi-disciplinary team of medical oncologists, radiation oncologists, surgeons, etc. This is a public hospital and I like the approach. It appears to be very thorough, structured, regulated and of consistent quality. By going here, I would have my “team” in one place, and get a high standard of care (which I realise makes me very lucky, under the circumstances). I basically get to put my faith in the hands of one place.

However, there are of course things they do not offer. Just as an example, they don’t offer the HAI pump for liver mets (seems to be an MSK special!), they don’t have a CyberKnife for liver radiation, and so on. So the alternative I guess would be to get a good leading oncologist somewhere privately, and then put together a plan that has me leaving Melbourne (or even Australia) to head to the US or wherever to get the best possible for each of treatments. The lack of integration around this concerns me – I have read many times here the importance of having a thorough, end-to-end plan, which everyone is clear on and agrees on, and being able to review easily if there are problems or things don't work. But I can’t argue with the approach of getting the best possible treatment for each the different areas, and the success rates of places like MSK.

The personal impact (travel, cost, away from family, etc.) is something I would just have to come to terms with I guess and for now let’s not consider that a barrier (i.e. focusing on best medical outcome).

Does anyone have any advice or personal experiences for me on how to approach treatment? (i.e. "one stop shop" or "best of breed"?)

Thanks!

[zephyr]

Please forgive me if this is naive but can’t you do both, at least initially? Would it be possible to meet with the local cancer center and then go to MSK or wherever for a second opinion? That would get you in the door at both places as a patient. It could be that both will tell you to first do X, and then if you need more, do Y. If you can get X locally, maybe do that first and then if you need something that’s not available such as the the pump, you can switch. Again, this may be naive on my part so feel free to ignore.

[Rock_Robster]

Hi Zephyr, not naive at all! In fact it’s a great suggestion and thanks for the response. My plan was indeed to use the local centre as my “base” and then get second opinions from MSK. I guess I’m just pre-empting the situation that I can get different treatments elsewhere, how to make that decision. I see you went to Germany for surgery - how did you find that experience?

[Deb m]

I keep hearing that Dr. Kemeny is the best for liver mets via treatment with the pump. If your going to travel out of the country, that would be my first choice!

[zephyr]

Challenging being away from home for three months and in a country where I don’t speak the language, and then there was the expense ... but so worth it. In my case, it had to happen this way: I needed to go through all the conventional steps, all the standard procedures, before making the decision to leave. Regardless of what ultimately happens, I will never regret it. It was life altering, mentally and physically.

When I was running around talking to doctors and getting 2nd, 3rd ... and 10th opinions about the surgery, a CT surgeon said something I will never forget: you already know what you want to do, so go do it. He was right. When you reach that point, listen to the voice in your head.

[kandj]

Well, I think your first step is to talk to a surgeon locally and see if your mets are resectable. We live down the road from what is frequently ranked the best cancer center in the US and they were not able to help my husband at all. So we sought a second opinion from MSKCC and DH is a patient of Dr. K now. He has had a liver resection we knew was going to be risky, if even possible, and has also had radiation after a liver reoccurrence. He is now getting ready to have a lung met ablated. Dr. K is no nonsense and gets great results. That said, if you become her patient, she insists the FUDR be put in the pump in NYC. So you would most likely need to be there at least once a month for 6 months. And that is only if they do a resection first, place the pump, and then do the 6 months of FOLFIRI or FOLFOX and FUDR. If you need to have those suckers in the liver shrunk first, you are looking at X amount of months (for Dh it was 4) of FUDR after the resect the primary and place the pump, liver resection and then mop up chemo. That would be hard to do, flying back every month. But, if you have the means and ability to come here and live, I would do it in a heartbeat.

[NHMike]

I chat with a Forex trader on Twitter and he has a rare cancer which is in a number of places in his body and he had doctors in Germany and Florida treating him (he doesn't live in either of those places). His prognosis is not good but he's fighting cancer every step of the way and using the best folks in the world to do it. But he has the resources and energy to do this.

Medical Tourism to the United States and other countries is a booming business and there are several anecdotes in these two articles:

https://www.wsj.com/articles/desperate- ... 1409959941
http://usa.chinadaily.com.cn/epaper/201 ... 527300.htm

When I went for my first surgery, I was quite surprised to see so many suitcases in the checkin area for surgery and many different languages spoken by those there. I know that my surgeon has patients from around the US but I wouldn't be surprised if she had a lot of international patients as well. I would guess that MSK is the same way. The hospital that I went to has an office for international patients and I'd guess that MSK and other top hospitals have the same thing. So they may have answers for you if you want to use specialists from around the world.

[mandosquiddy]

I am lucky enough to live about an hour from a top 25 cancer center in the USA but they don't even have everything. My radiation oncologist recommended I get interoperative radiation which they did not offer so I travelled to the Mayo Clinic. The docs at both hospitals were on the same page and communicated well with each other. I still consider my local cancer doctors to be the ones in charge but I would not hesitate to return to Mayo or another hospital. Any good doc would be happy to recommend you for a second opinion or be aware of other options elsewhere.