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Some thoughts on treatment options... (IMHO)

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

Not trying to re-open a can of worms, but I’m well aware that there are 2 primary schools of thought here on treatments: Western vs TCM.

Both have their plusses and minuses; each will work for some, and not for others, and unfortunately, we can’t always know which is our personal best option. I tend to lean towards complementary treatments – balance the treatments out with each other. But I’m not starting that discussion here.

However, one thing I’ve noticed, particularly with my specific, rare cancer (Appendix cancer) is that of the 2 Western treatments, more people go for the more aggressive treatment (HIPEC) than the slightly less aggressive format of debulking followed by multiple cycles of IntraPeritoneal (EPIC)chemo (non-heated.) In many cases, the research hasn’t shown that one is better than the other; more drs are doing HIPEC than EPIC. My specialist, an Appendix Cancer expert at Memorial Sloan Kettering (where they don’t do heated IP), stated that for my type of cancer, the heated chemo carried no advantages, but did carry higher risks. (By the way, he refers out if he feels HIPEC is warranted.)

I provide a lot of support to fellow appendix cancer patients, and am finding for the most part, that while they may meet with drs at MSK, and discuss EPIC, they’ll opt to go elsewhere and have HIPEC, under the assumption that more aggressive treatment is better. (And that is the treatment that the support groups state is the only options – I’ve been put down as “just lucky” for having opted not to have HIPEC in my successful treatment for my Stage IV cancer.)

Yet, we do know that most cancer treatments, HIPEC/EPIC included, damage healthy cells and tissue as well as diseased tissue. For an unknown chance of more cancer fighting, patients are opting for a treatment with much higher complications. I’m almost 5 years out from EPIC, and functioning perfectly normally. My local onc had 2 other appendix ca patients after me, both of whom opted for HIPEC after their meetings at MSK. In one, her cancer was not treatable (and she probably would have succumbed regardless of the treatment chosen.) The other is ostensibly “cured” – NED (as am I). However, the damage done to her internal organs leave her with constant significant digestive problems, obstructions, and a requirement to be near the bathroom at all times. I think it is important for people to understand that treatment has consequences, and we must weigh “cure” vs quality of life. (Side note – my dr thinks I may be cured, and I have excellent “normal” quality of life.)

I guess what I’m saying is to think before jumping for the “big guns”; know what you are getting into, and what you are willing to sacrifice. The immediate response to being told you have cancer is to do anything to blast the beast out – KILL, KILL, KILL. However, it is important to step back and decided what consequences are worth the level of treatment you are selecting. I know I’m very happy with my choices.

Just my opinion….

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

This hits home for me. This is the decision I am facing right now. Who to see and how aggressive should we be with my signet ring cell cancer. I have been in contact with the "top" HIPEC Dr's office - Dr Sugarbaker here in DC. I also have the name - sort of a referral from my oncologist - "well if you want to get a second opinion - I would recommend Dr Bartlett(I think it was) at Georgetown". My current oncologist is of the party line that they think that they got everything in my initial surgery back in June. But they have not done any further testing since then....he wants to wait until after I am finishied with 6 months of FOLFOX.... I want to know sooner....if there is something else going on or progressing.

I am not sure if I just need a more experienced oncologist with this type of cancer or if I need to throw the big guns at it and go see a HIPEC Dr. I am not even sure that my cancer is progressing and that I need HIPEC or EPIC. Your Dr - Dr Paty is on my short list of doctors as is Dr Sardi in Baltimore (another HIPEC Dr). At the moment I am having to battle with the insurance company to get things taken care of.

Some days I feel as if my Dr just treats me like well...it is what it is ... and the systemic chemo is my only option right now. The disease will run its course. Other days he tells me that this systemic chemo is simply a "mop up" from my surgery.

I guess what I am saying is that I feel like I need to treat this aggressively...but I am not ready yet to comitt to the invasiveness of the HIPEC surgery. I am still trying to weigh my options and find someone who will treat my cancer (my current onc thinks I just need a medical oncologists and does not believe that I might need the services of a surgeon) - not just someone who will throw the toughest treatment at me even if there is something else out there that might be equally as effective. I just got the Georgetown Dr's name on Friday - so I will be doing a little research. I might very well end up at MSK for a consult - it seems like they are not an all or nothing treatment center - that they do have other options. When I talked to Dr S's office they indicated that he would look at my scans (which with this current Dr - I really have nothing from after the surgery) and my pathology and then they would let me know if Dr S was willing to perform the HIPEC surgery. But I am not even sure that I need the surgery just yet.

So how do we know when we are being too aggressive in going after treatment for ourselves??? I need to get to a point where I know what is happening with my cancer and we are treating it so that I can go for years with NED. I have a young family that I need to raise - and if it takes the HIPEC or the EPIC to be able to do it then I will.

Alex (so sorry if this was long and confusing...that is where my mind is at right now)

Ruffy7
Posts: 126
Joined: Sep 2011

This is so new to you.... it takes time to process. I was told also that they think they got it all. Now just watch and wait.... that was sooooo hard for me to do in the beginning - I did get several expert dr opinions - then decided for myself. What helped me was time and feeling that's all I can do right now with what info we have on my case at this time. Then I figured that best case scenario is that we all get to the point (hopefully) of watching and waiting. No matter what treatment we go with; if all goes well we still end up at "active survelliance". Like Alice said everyones case is different and we all have to decide the course that we can live with. Watching and waiting; I think is harder than treatment because at least than you feel you are fighting it. Did Dr say yours is slow growing? You're not alone; we've all been where you are and sometimes still there. You'll feel better once you've decided what course to take. Ruffy

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

Alex, Dr. Bartlett is at U. Pitt MC, and I know that Dr. Paty thinks very highly of him (and in fact, indicated that if he, Paty, felt at some time in the future that I'd need HIPEC, he'd probably push me towards Bartlett.)

One of the things I like about Dr. Paty is that he considers options other than HIPEC. Yes, he's a colorectal onc surgeon, but he does not jump to the knife. It took me 2 years to get him to repair my incisional hernia! I'd recommend meeting with him. If he feels systemic chemo is the way to go, he would recommend a specialist (colorectal medical oncologist) to work with. Mine has since left MSK, but I trust Dr. Paty.

Yes, you need to treat the cancer aggressively. But I do know that Dr. Paty has very successfully treated signet cell cancer with surgery and IP chemo, such as I had. And I know that the process I had does not risk impacting the quality of life as much as HIPEC. (Of note, I had a problem-ridden recovery from surgery and issues with the IP. However, I'm absolutely fine by anyone's standards now.

Drs Sardi and Sugarbaker, while both brilliant, have staked their reputations on their HIPEC expertise. Personally, I feel concerned when a dr has determined that only his method works.

Just some rambling thoughts....

Alice

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

I have the same concerns about the HIPEC only approach. I have a call into NIH...just to see if there is some current research going on...or more info on specialists. Both Bartlett and Paty are on my short list....i am still only 2 months out from my initial surgery...i have an appt with my onc on Friday...will probably have another CT scan in about a week or so...after chemo infusion #4. I have been having some abdominal pain and now collar bone and shoulder pain. I am having an issue with getting my medical records from my current oncologist's office...i am going to have them make me a copy of everything on Friday...it is supposed to be available online...but i can't get it to work onnmy computer. As soon as i get this info...i will he picking my specialist for a second opinion.

Alex

Lovekitties's picture
Lovekitties
Posts: 2893
Joined: Jan 2010

See if it is possible to get your medical docs on a CD...take some blank ones with you. That way you can make easy low cost copies and give them to as many docs as you need to.

So sorry that you are having pains.

Wish you the best in finding a doc who shows promise of working his best on your case and getting the best results.

Hugs,

Marie who loves kitties

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

thanks for the info. i have been told hipec would be good for me but after reading your post i want to check out other options. i have awhile as i will complete 12 tx of folfiri & avastin & i am only going on tx #4. any more info in the future will be appreciated!
judy

PhillieG's picture
PhillieG
Posts: 4659
Joined: May 2005

I think there are also subsets of those choices you mention.
Dietary changes can be used under Western and Eastern medicine.
Also, some have surgery first, then choose from the Eastern/Western
options while others need to choose their path prior to surgery.

Tough choices need to be made all around
Just more (organic) food for thought...
Thoughtful post Abrub.
-p

RickMurtagh's picture
RickMurtagh
Posts: 530
Joined: Feb 2010

(organic) food for thought!

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

you goto read my happy tree story post. its relevant kind off.

what wrong with kill , kill, kill. ???????????

I know !

you are actually killing someone you love, yourself.

great post. but feel free to go hard if you want, but its good to make considered decisions, often the after the therapy damages is hidden in the small print.

hugs,
Pete

ps so now east is west and west is east. this debate will never ever be simple again.

RickMurtagh's picture
RickMurtagh
Posts: 530
Joined: Feb 2010

"I know I’m very happy with my choices." That is the key to it all isn't it?

OFC having a brilliant doctor to help you sort things out helps. Every time I hear more about Dr Paty the more I like him. I am so glad he is my doctor.

However he is not going to be pleased with me when I go to see him next. I missed my appointment with him last month and I have not rescheduled yet. It has been more than 6 months since I have had any blood work done.

I like your opinion Alice. This site should have a like button instead of the "report as offensive link."

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