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Choosing between a local hospital and a cancer center

Helen321's picture
Helen321
Posts: 1427
Joined: May 2012

I realize I am very lucky to have this option. My insurance company added Sloan Kettering, a cancer hospital this past January as an in network provider and so I won't have to pay 50% of the hospital bill if I choose them. Except copays, it will be free. It's about an hour and a half from my house.

My current surgeon is a reputable surgeon with 23 years experience working at a local hospital with a fairly large cancer departement. Sloan is very slow in getting appointments and it took me over a month just to get the tests required before they would even see me. Now I have to wait until the 18th for the initial appt. and I have to have the surgery by July 3 to avoid a 5 day penalty by my disability insurance. I would lose 5 days pay which I simply can't afford. I've already lost 7 days pay so far.

My family is angry that I am even considering the local hospital for this surgery (which is Northshore of Long Island, which has an excellent reputation). Several people have gone as far as to say I'm sorry but you are just being stupid. That the first surgery didn't work and now I'm willing to go back to the same surgeon. The surgeon did warn me that the surgery only works 90% of the time. It's also 90% of the time at Sloan so how is that logical? The same thing could have happened at Sloan.

My sister feels by not choosing Sloan I'm gambling with my life. She says I'm putting money before my health. I am still 100% going for my second opinion at Sloan but then I want to the do the surgery locally. If Sloan recommends any treatment other than surgery, I'd 100% go to Sloan. Putting money aside, does anyone have a strong opinion about going local versus waiting for a cancer hospital?

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 508
Joined: May 2012

Helen -
I think you have to feel comfortable with the surgeon. Things happen at every hospital and just because you are at Sloan doesn't mean things can't go wrong. If you feel comfortable where you are you should stay there.
Good luck, my surgery is the 19th also.
Sandy

abrub's picture
abrub
Posts: 2158
Joined: Mar 2010

If there are any oddities or special consideration, go with a Cancer Center, where they can deal better with any "curves" thrown at them.

Yes, I'm very pro-MSK. I go there, and it's a 4 hour drive for me. My surgeon there was able to resect my colon in 3 places, and put the pieces back together so that everything works perfectly. Being treated by colorectal surgical specialists (and colorectal oncologists) has definite advantages.

That being said, colon cancer is common enough that you can get excellent care for "standard" cases elsewhere. It's a tough decision. See what they say at MSK; they might even be able to get you in for surgery quickly.

Good luck,
Alice

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

I can totally relate to your dilemma,
I live in Jersey and everyone wonders why I am not going to Sloan and choosing a local hospital..
Well.. at my local hospital all my docters were trained at Sloan or put in many many years there.
My surgeon are all NY surgeons.. just working in Jersey now as they discover the suburbs are a nice place to live.
I believe I am getting the same treatment I would be getting at Sloan but less than 1 hr+ away..
It is a hard decission to make. isn't it..
We have to go with our gut and not regret our choice..
Prayers and Huggs for successful surgery.

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

I was fortunate to be able to have surgery at SK. I had been having consultation with them (SK) but going to a NJ hospital that was in network. They were good, I've found Sloan to be better. My insurance situation changed so I was able to do everything at SK

I've also found them to be fairly easy to work with. Have you explained your situation to them and the deadline (Opps! Bad choice of words...Time constraints) with having surgery?

I don't know if I'd say you were gambling with your life, but they are the best (IMO) and what you do first makes a huge difference. That being said, screwups can happen anywhere at anytime and there are no guarantees but even if I'd miss a weeks pay (which I DON'T have $$$ to spare) I'd go to SK for peace of mind.

BTW: I'm 50 miles North of NYC and don't mind heading into the city every other week.
Hell, I'm worth it!
Good luck
-phil

Helen321's picture
Helen321
Posts: 1427
Joined: May 2012

Good play on wording. That's what my sister said Phil. It's a hard one because my job won't split the pay among more than two paychecks, so this month I lost 7 days pay in just two checks. Then I'd lose another 5 in July which they will only take out of one check, not even two because they only do that when it's unexpected and this one would be expected. Add the copays that I didn't budget for this year for me and the kids and I'm screwed. I wish I had gone to Sloan to begin with but my cousin who is a nurse said a surgeon is surgeon (he's a colorectal oncology specialist) and that time was of the essence. She was wrong. I had time. I would have been registered. Once I did the surgery somewhere else, sloan wouldn't touch me until I had all my follow up tests completed which took time. I explained the situation to Sloan but the doctors are completely booked. I'm going to try to call each day and see if anyone cancels and if I can fill the slot. If you don't mind me asking, who do you see at SK. I'm being assigned to Jose Guilleme. I can switch to Weiser but I wasn't able to find enough info on him.

abrub's picture
abrub
Posts: 2158
Joined: Mar 2010

I have a friend who went to him, and is doing very well. I know he's excellent.

My MSK surgeon is Philip Paty, and I'm in love with him (don't tell my husband!)

I've gotten mixed feedback on Weiser - some people adore him, another friend of mine wasn't thrilled with him. However, none of the drs is without his detractors, so that really doesn't mean much.

RickMurtagh's picture
RickMurtagh
Posts: 586
Joined: Feb 2010

My surgeon is also Philip Paty, and I too am in love with him (don't tell my wife).

Having been in a few hospitals now I can say I favor MSKCC over the others. The others were good, Sloan was better in every way.

abrub's picture
abrub
Posts: 2158
Joined: Mar 2010

My husband and I went out to dinner with the Patys, and had a most wonderful evening. (We learned after I met him that we have several other "small world" connections.) His wife is aware of the effect her husband has on his patients. I think that there is a long line of us, all in love with him!

Sloan is excellent, largely because it is a focused medical center. I love that they are in the forefront with research. Questions I asked about things that appeared current on the internet, were responded to with more current, as yet unpublished information. I felt that I was in the best hands, never had a second thought.

Do you think we should start a Philip Paty fan club, charge membership and donate all fees to his research!

Alice

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

My surgeon was Dr (Bud) Weiser < sorry, can't help it >. I liked him. My colon wasn't a real big issue though. My bigger concern was my liver, I had Dr Jarnigan for that part and the HAI pump installation. Dr Nancy Kemeny is my oncologist. I haven't see Dr's Weiser or Jarnigan since Sept 2004 with the exception of running into Dr Jarnigan a few times in the main hospital. He did remember me too.

Your health comes first, you can't make money to pay bills if you're not around!
best of luck to you.
-phil

neons356
Posts: 58
Joined: Dec 2010

I live in an area where several large teaching institutions and many local hospitals were available to me. The cancer docs and surgeons at my local hospital are top notch, I trusted them explicitly, and got the best of treatment and care. All treatment basically follows the same protocol wherever you go. I personally feel that the local hospital gives a higher quality of care. In the bigger places you tend to get lost in the crowd. In my case I went thru 4 years of blockages and other problems, and I was 20 minutes away from getting help when it was needed. The staff knew me, understood my case, and started me on whatever treatment was necessary without any wait. So if you trust your care team at the local hospital I'd go with that.
Carl

Helen321's picture
Helen321
Posts: 1427
Joined: May 2012

Thanks Carl. I thought that since this surgery is very routine.

geotina's picture
geotina
Posts: 2123
Joined: Oct 2009

Trust your gut. This is your cancer, your treatment and your decision. We live in Michigan and are only about 20-30 minutes from the University of Michigan and the Karmanos Cancer Institute. Both outstanding. George is not being treated at either one. He is being treated at Oakwood Hospital in Dearborn, MI. Our board certified colorectal surgeon was excellent. Out oncologist is outstanding and named one of the top 10 docs in oncology in Michigan. We have received excellent care. To be honest I wanted George to go to Karmanos or U of M but he said he felt very comfortable where he was so that is where we stayed.

Family does try to be helpful because they care and if they are butting in a little too much and making you uncomfortable give them a hug and thank them for their concern and gently ask for the subject to be changed.

Bigger is not always better. Go with whatever makes you comfortable and with docs that you are comfortable with.

Take care - Tina

omrhill
Posts: 125
Joined: May 2012

This is tough and i have considered the same issues. In the end it came down to going with my instinct. I started at a local hospital and immediately trusted my oncologist, surgeon,and radiologist. I feel like i am receiving individual attention and ive done enough research (and read lots of stories here) to know that my treatment is following standard protocols. The other thing that helped was that each of my doctors told me not to be afraid to tell them if i wanted to seek a second opninion. I do wonder if i might be missing on cutting edge treatments or experimental options that may not be available outside a cancer center. But i keep coming back to my instinct and comfort level. Ive got the numbers for the cancer center in case i change but right now im happy. Not sure if this helps, just know that youre not alone in these doubts. Just something else we get to worry about!

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

I would choose local for the most part. If the local center is good then sometimes the convience of travel is worth it. If things get to complex then maybe another center would make sense. You are fortunate with your insurance paying for either. Jeff

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

I would choose local for the most part. If the local center is good then sometimes the convience of travel is worth it. If things get to complex then maybe another center would make sense. You are fortunate with your insurance paying for either. Jeff

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

I would choose local for the most part. If the local center is good then sometimes the convience of travel is worth it. If things get to complex then maybe another center would make sense. You are fortunate with your insurance paying for either. Jeff

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

When it came to my surgery, I wanted it done at the big boys hospital and not the local. That's why I was happy my oncologist although affiliated with the local hospital and surgeons in our small town actually referred me to Stanford. The local surgeons wouldn't touch me anyway, so I was stuck with Stanford if I wanted the surgery. I like the fact at the big hospital with a large cancer center that all the surgeons only work in their department. My liver surgeon, only does cancer liver surgery, my colon surgeon only does colon cancer surgeries and the same with my urologist surgeon, each one has their own specialty and that gave me a lot of confidence in the surgery. While I like my little hospital for chemotherapy, and they sure did a great job putting a stent in and keeping my life going. But when it comes to my cancer surgery, I felt and still feel better about everyone having their specialty in surgeries.
Just my thoughts,
Winter Marie

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

Had my perm colostomy done local & surgeon did a fine job, no problems.
Now mets to lungs have been getting 2nd opinion work done at MD Anderson and they will be doing both surgeries there since they are so far advanced on this type of surgery compared to local team here. Fortunate not to far a drive from here for us & ins paying 100% as have met out of pocket ded expense.

Helen321's picture
Helen321
Posts: 1427
Joined: May 2012

So glad your insurance is covering 100% at this point! One less thing to think about!

Helen321's picture
Helen321
Posts: 1427
Joined: May 2012

Yes that's it. My original surgeon is also a colorectal specialist. That's all he does. He works in the cancer department (which is semi large). I wish there was a way to look up people's track records.

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

They should start Oncology Trading Cards that could be similar to baseball cards with the oncologists "stats" on them.
How many No-Hitters, Strikeouts, Walks, and most important, How many SAVES!
;-)

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

Agree 100%

Phil64's picture
Phil64
Posts: 838
Joined: Apr 2012

I love that idea!

Helen321's picture
Helen321
Posts: 1427
Joined: May 2012

That's a good idea! lol

WhatsA_Mom2Do's picture
WhatsA_Mom2Do
Posts: 46
Joined: Sep 2010

Hi Helen, not sure if you've made a decision but I will share my opinion. Personally, I think you should meet with the doctors at both facilities and have all your questions answered and determine your comfort level with you health care providers. For my son, we chose a local hospital but I worked with his oncologist at Temple University Hospital and Fox Chase Cancer Center so I knew of his abilities. I would say the downside of a local hospital vs. a cancer center (specifically an NCI designated cancer center) has to do with, like you mentioned, the wait times for an appointment and for treatment while your are there. The upside is that you will get a VERY comprehensive experience in terms of ancillary services offered. For example, where my son treated, they did not have an oncology social worker...the social worker was clueless as to the WIDE range of help (financial, transportation, help with meals, grants for medications, etc) available to cancer patients. I'm lucky to have worked with some dynamic oncology social workers who would handle much of those things for us.

Also, an oncologist at a local hospital may or may not be as plugged into the newest and latest in the field of oncology. Nursing care is also another consideration...I was amazed at the lack of knowledge some of the nurses exhibited at the local hospital/cancer center. I believe only ONE of them was oncology certified, whereas you will find in a NCI designated cancer center a very high percentage of the nurses are certified or working towards their certification.

At the end of the day, no matter what choice you make...remember, it's YOUR choice and you have to feel comfortable and convicted in your treatment decisions. All the best to you and God Bless! Dee

Helen321's picture
Helen321
Posts: 1427
Joined: May 2012

Hi Dee Yes I did, I ended up at Sloan. The local hospital went with surgery, no chemo/rad. Dr. Guillem told me that he would never go that route. Take the less risky route, have the chemo/rad while I'm in the this good position because after this if this doesn't work, I'll be in a permanent bag category. Logical. He made the choice easy. I'm starting next week and I'm already dreading the travel portion (appts. are at 9 so I have to leave the house at 7:30 then go to work after appts., luckily no preps this week) but I'd dread a lot more if I didn't get this done. I've traveled an hour and a half to and from work each day for 19 years and a lot of times I work a 10+ hour day so it takes its toll.

I went with Dr. Guillem because I realized Weiser was the new guy. Guillem was the next available appt. so I took it. The only thing I didn't like about him was that he was confusing. I was comfortable with the conversation while I was there but after I left I thought well what did he mean by he will restage/rediagnose me after the surgery because he thinks this has been misdiagnosed. I have slides, a disk, reports from the first surgery. Why can't he just stage me now, tell me if it's aggressive based on the slides? I'm going back there this week so I will get answers. The answer will be the same this week as three weeks ago so I gave my brain a break, wrote out my questions and I'll ask them in person.

The nurse situation is on the money. At the local hospital the nurse gave me food I wasn't supposed to have right after surgery, sent me home with no instructions (she couldn't find them) and then let me walk out of the hospital. I was steady to walk so I was fine but protocol says a wheelchair. I also went home with a medication I was allergic to even though I had on the bracelet. She never asked and I was still feeling the morphine so I was loopy and took it. At Sloan, the doctor I'm dealing with does everything through his nurse Stephanie and she knows her stuff. I don't know if she's oncologist certified, I didn't realize such a thing existed, I'll ask her out of curiosity now when I go in.

I'm not confident in any choice I'm making yet. Mostly because everything went instantly on hold to wait for the appts. and I wasn't given much info as to what we're doing. That in itself is nerve racking. You begin to think, okay but what if today was the day it went to . . .and they're making me wait. I think once I get started, I'll feel much more confident. I have 3 appts. next week so I'm finally in and I have all my questions ready. Helen

abrub's picture
abrub
Posts: 2158
Joined: Mar 2010

However, don't plan to be anywhere else on an MSK appointment day. They often (usually) run very late, tho I've had the rare appointment that has been on time or (dare I say!) early. Chemo - you see the dr first, and then they mix your chemo, which takes a couple more hours. The chemo nurses are great, and they try to make it as "pleasant" as possible.

Even great hospitals can make mistakes. If you can keep someone with you a lot of the time you will be better off. I know that nurses were often slow to respond to the call button. My last time at MSK, I caught some medication errors, where they were using my med records from my prior surgery there (in 2007) rather than all the updates that had occurred and been recorded with my drs and at my pre-op for my 2010 surgery. Ask questions whenever you are able, make sure you know what you are being given. Overall, however, the care I received at MSK was superb.

Your cheering squad is here for you!
Alice

Helen321's picture
Helen321
Posts: 1427
Joined: May 2012

Thanks for the cheering squad! I quickly learned yesterday that one appt. which should have been an hour turned into 2 hours 45 mins and then they wanted another test to be added in the afternoon. I'm trying to make everything first or last appt. of the day. This way I can take off 1/2 days at work which is on 50th and 8th. Three short train stops from the 53th street annex.

abrub's picture
abrub
Posts: 2158
Joined: Mar 2010

You can always call in to see when they'll see you. I've had first appointments run over an hour late! However, if you're sure you're the first appointment (not the second) it may be worth a try.

The rest of NYC runs on Eastern Time; MSK has its own time zone (and Dr. Paty has his own sub-time zone.) However, the care is worth the wait.

And I think that once I had a dr's appointment actually run on time! (Let's see, I've been to 53rd St how many times? Probably 30+ times.)

Bring a good book, and be prepared to settle in for a while....

Alice

Phil64's picture
Phil64
Posts: 838
Joined: Apr 2012

I used the local surgeon and our local "small town" hospital for the resection. I have to say that I was assured and relieved that every doctor I talked to said they would use that surgeon if it was them. He received good reviews from many people and that helped me feel confident in his ability.

Regarding the oncologist. I'm pretty sure I'm going to switch oncologists and use one from U of M Cancer Center. I know its' probably not fair but my understanding is that the oncologist is supposed to be like the quarterback in your overall cancer care and I told this small town oncologist about blood in stool and bowel issues back in November 2011, when being treated for testicular cancer. His response was to not worry, it was probably hemroids, and I should do a follow-up with my family doctor after the testicular cancer treatment, if the symptoms continued. Also, this is a small town and I know two of his former patients (worked with them). They were both in their 40's and they were not saves.

So my feeling is that I've received pretty good care for my three surgeries however, I can't trust this small town oncologist. Besides, my wife and oldest sister (head of our close family) went with me to see him and both of them left with an uncomfortable feeling (so it's not just me).

Helen321's picture
Helen321
Posts: 1427
Joined: May 2012

I've had that uncomfortable feeling with both docs so far. That's interesting. I got the feeling from both of them they're guessing! I guess to a large degree it is all wait and see but it doesn't build much confidence.

I'm being told the same thing about this constant bleeding and large clotting. I'm going to press the issue. This just doesn't seem right at all. Like maybe something simple has been missed. Something happened during a colonoscopy or something and the bleeding is from somewhere else. I don't want to end up with something complicated because it was missed when it was something simple that can be fixed.

steved
Posts: 835
Joined: Apr 2004

When I had my first diagnosis and needed resection we had the same dilemma and found there was a lot to weigh up. There is a lot to be said obout the personal relatioship with the doctors and your team- they are likely to be working withyou for some time and you need a feeling of trust and confidence in them that only you can judge. For some this is the most important factor.
Then there is the issue of how complex your situation is. Straight forward resections are done regulalry by most colorectal surgeons and most are competent. But if you have an 'unusual' component to your disease then specialists may be better.
My own medical approach was to base my decision on what I could find out of stats. Different doctors do have different success rates- 5 year survival and recurrence rates. I am not sure if tehse are available to you but they do matter and they do vary between centres and surgeons. In the end the priority is to get cured and if that meant for me I had to face a rude surgeon who I hated but was more likely to cure me, I decided I would go for it.
As it turned out the best surgeons in England were a lovely bunch, who did their best and left a few cells behind. So I tried to weight everything in my favour and still lost the gamble.

Not sure what the message is to you here and feel I am sadly rambling about myself. Hope you find something useful to take away- if not put it down to my own head being a bit all over the place today.

steve

Helen321's picture
Helen321
Posts: 1427
Joined: May 2012

Thanks Steve, I'm with you on the head all over the place. I'm working 12 hours to make up money I'm losing at work and I'm mentally shot to hell today. I finally slept through the night last night from sheer exhaustion. If I could go back in time (don't we all wish that), I'd go straight to Sloan. Wouldn't have even considered the local hospital. It might be very factory like and a bit eerie at Sloan but no one person makes decisions and the team throws all their thoughts out at meetings. I like that. I wonder if my surgery wouldn't have failed but there is no way of knowing if it was the surgeon or my body so all I can do now is move forward and hope this round works better. I'm not looking forward to 5-1/2 weeks of travelling for radiation and then getting to work but it is what it is and 5-1/2 weeks beats 5-1/2 years of worrying and fighting so you do what you have to do.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I would factor in some down time during your radiation treatments....

You're going to get about 3-weeks or 15 treatments in and start to feel the effects of it...you will begin to slow down...and you may stop altogether, depending on how you take it.

But, I would not be considering full work days...you'll understand when you get there. Even if you want to, you may not be able to.

Radiation is cumulative and you will be extremely fatigued...toxicity builds up quickly...and it doesn't just go away.

In fact, the effects can last for several weeks AFTER the rad treatments have ended.

I've done 55 treatments of radiation....first tim I was at my local center and lived about 15-minutes away...I was bedridden towards the end...it was all I could do to get dressed, drive over, do the treatment...and drive back home and go right back to bed.

The last time on my lungs, I did 30 of those with 5fu pack 24/7 during the whole six weeks...I drove myself to the treatments, did the treatments and drove myself home...it was about 30-miles worth of driving each way - in a crowded metropolis.

At the time, I was sending out magazines to the group here and mailing out my Santa Craig cd's for the holidays...if I had not cared for the folks here, I would have driven myself straight home...don't know what kept me propped up waiting an hour or so in line to mail out some packages...

It was hard to do.....I'd then get home, try and heat something up to eat...and then promptly go and take about a 4-hour nap. At the end of the treatments, I was done.

Just set yourself some realistic goals...and if you can work, then work as long as you can...that's what I did...until I started to miss more time and then whole days...

As always, when you have not done something, it is hard to prepare for what may or may not happen...don't beat yourself up if you get sick from this - it's to be expected. I hope you do much better than I have with it.

I wish you the best.

-Craig

Brenda Bricco
Posts: 579
Joined: Aug 2011

When my husband was first dx we saw the locals that gave him a very grim prognosis. We then sought out a second opinion which by the time we got there they saw that he had wonderful results from chemo. We opted to go with the big dogs for the surgeries i.e. rfa, colon resection and liver resection. Now that he is scanning clean the UW Hospital communicates what they want and the local doc prescribes his preventative chemo and monitors his labs. If we need something done we will go back to the UW for their cutting edge knowledge/desire to go for the cure and feel really good about being in the right place. I just don't think it has to be one or the other but I have to say that I think you should definately go see what SK has to say.
GOD's blessings to you.
Brenda

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