Choosing between a local hospital and a cancer center

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Comments

  • Phil64
    Phil64 Member Posts: 838 Member
    PhillieG said:

    Track Records
    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!
    ;-)

    I love that idea!

    I love that idea!
  • Phil64
    Phil64 Member Posts: 838 Member
    Surgeons vs. Oncologist
    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).
  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    abrub said:

    Guillem has a superb rep
    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.

    My surgeon
    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.
  • WhatsA_Mom2Do
    WhatsA_Mom2Do Member Posts: 46
    Helen321 said:

    Yes that's it. My original
    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.

    Hi Helen, not sure if you've
    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
    Helen321 Member Posts: 1,459 Member
    PhillieG said:

    Track Records
    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!
    ;-)

    That's a good idea! lol

    That's a good idea! lol
  • Helen321
    Helen321 Member Posts: 1,459 Member

    Hi Helen, not sure if you've
    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

    Hi Dee Yes I did, I ended up
    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
  • Helen321
    Helen321 Member Posts: 1,459 Member
    Phil64 said:

    Surgeons vs. Oncologist
    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).

    I've had that uncomfortable
    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.
  • abrub
    abrub Member Posts: 2,174 Member
    Helen321 said:

    Hi Dee Yes I did, I ended up
    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

    Guillem is great
    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
  • abrub
    abrub Member Posts: 2,174 Member

    My surgeon
    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.

    Your secret is safe with me!
    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
  • steved
    steved Member Posts: 834 Member
    A doctor's approach
    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
    Helen321 Member Posts: 1,459 Member
    steved said:

    A doctor's approach
    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

    Thanks Steve, I'm with you
    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
    Sundanceh Member Posts: 4,392 Member
    Helen321 said:

    Thanks Steve, I'm with you
    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.

    Helen
    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
  • Helen321
    Helen321 Member Posts: 1,459 Member
    abrub said:

    Guillem is great
    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

    Thanks for the cheering
    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.
  • Brenda Bricco
    Brenda Bricco Member Posts: 579 Member
    Why not both?
    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
  • abrub
    abrub Member Posts: 2,174 Member
    Helen321 said:

    Thanks for the cheering
    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.

    Then probably best to go for the last appointment
    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