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Hi all,
feel very fortunate to have great hospitals in our area, but wonder if anyone has experience with the Cleveland Clinic or University Hospitals in relation to CC? My brother's been seeing a surgeon at Clinic, but has an appt next week to meet the counterpart at University...any shared experiences would be great..
candy
Candy,
I know some people that have been treated at both and I think University has been given the highest rating. THese people weren't going for CC though. My husband goes to OSU and we have been very pleased and I've spoken to others that have left the Cleveland Clinic for OSU and were happier. At this point because of where we live if my husband has any recurrence I think we will go to the UPMC in Pittsburgh. They actually have a very highly regarded liver cancer center and are probably one of the best in the area as far as research and new treatment techniques. IN general where I live 40 miles south of Canton everyone seems to be of the opinion that you should go east or west but not north. The lady that runs the health food store we go to says people live longer in her opinion if they get treatment in Columbus or Pittsburgh. I don't know but I do know that you should get several different opinions and not accept the opinion of just one DR and not look further. THey really don't know a lot about this cancer and treatment seems to vary depending on who you talk to. Good luck and best wishes. Mary
Mary,
thanks for the feedback and advice! really appreciate it.
My experience with the cleveland clinic was not cancer related. However, my brother in law was ill for many years and was in both places. My sister in law's main complaint against the Cleveland Clinic was what she called "the giblet approach". Because it is a huge teaching hospital there are many teams that deal with different parts of you and you rarely have that overall picture that is so important. I would just encourage you to ask if you will be in the CC who will be in charge of your care, pre-op and post-op if you are in for surgery and for the oncology if you have follow up needs. Its important not to be dragged into the system without being in one dr's immediate care.
Good luck, Belle.
Well, we are kind of talking about giblets with cc, aren't we? The liver, the bile ducts, the stomach, the small intestine.... 
Ha Ha what I meant by the giblet approach was that they took each body part for its own problem instead of looking a the patient as a whole... but I had a laugh so thats worth
thanks, I think i know what you mean. Good advice.. my brother and I seemed to get the runaround he was in for a week at the Clinic. Nobody seemed to communicate outside of their own department. The nurses had no idea what the doctors were doing and neither of them knew what the radiologists were doing. Felt like you had to be so proactive to find out what they were planning for you, or not planning.
Yes that is exactly what I meant when I was describing the frustration we had in the Cleveland Clinic. Now I'm not knocking them- it's a first class hospital.. but their team system leaves the patient often uninformed if not downright confused.
I remember my sister in law joking with each person so are you from the blue team? the red team? Which team are we on? Oh no the guy says we're the orange team, the teams change on the first of the month. She was joking and the poor resident was talking seriously...
Well good luck and all the best wherever you are.
Thanks, Belle...wherever we are seems like it will be University. Met with one of their top guys today and really liked him and his more aggressive, positive approach. His team seems to work very cohesively together too. Here's hoping brighter things ahead!
Hi Candy,
My husband is seeing the surgeons currently at Cleveland Clinic specifically for cc. We are fairly new there at the moment. We've met with an oncologist, Dr. Shirpiro and two surgeons, Dr. Miller and Dr. Aucejo. Is your brother still being seen at the Clinic? How has his experience been thus far? I"ll keep him and your family in my prayers....
Karen
Hi Karen,
My brother actually switched from the Clinic to University Hospitals in Feb 2008, and we are very happy that he did. While I'm sure the doctor he was seeing at the Clinic was very accomplished and knowledgeable, we found him to be too accepting of the finality of the disease. He was "willing" to procede with a surgical effort, but was very clear that he did not expect it to be successful, and that there was little chance of fighting this disease. We found a doctor at University who never thought twice about doing the surgery, Dr Christopher Siegel, chief of the liver transplant team. Surgery went well, and after a course of chemo/radiation, today, one year later, my brother is considered "cancer free" after his last scan. The statistics still aren't great for the future, but if we hadn't switched he might not have had the same outcome. I think if he had had a younger doctor at the Clinic, things would have been better, so if your doctors are younger, that's great. Just make sure you are comfortable with the team....that means a lot. We weren't comfortable at the clinic, but that was just our experience.
Best wishes...if you would like to talk offline, send me an e-mail to candyandmarkz@aol.com and I'll give you a call. I'm happy to share any info I can.
Candy
Hi Candy,
I appreciate your sharing. My husband had a biopsy this past Thursday to see if the cancer had spread to his abdominal wall. Results...negative...YIPPIE! That was what we were hoping for as the surgeons stated that if the results were negative...surgery would be an option. We have yet to schedule a follow up appointment...will do that tomorrow and go from there. We will see what the surgeons have to say. In our first consult with the surgeons I do know that my husband asked how much time does he have with this disease...the surgeon stated he was not getting into thinking "time lines" at this point (prior to the last biopsy) and he was very optimistic. He informed us to go home and enjoy each day. However, when I questioned him on something else, can't remember what, he did cop a bit of an "I AM A SURGEON" attitude. You know the kind...a patient for goodness sake asking detailed questions to clarify information that he has provided...I think he felt insulted but what the heck! He did answer the questions though...time will tell. Where is University Hospital? We live in Akron...I see your from Cleveland?
Will e-mail you sometime. Mine is sillyet@aol.com. Prayers for you, your brother, and your family.
Karen
Candy,
Hi there, just wanted to put in my two cents about OSU Medical Center. I was sent there the day my blood work came back to my local family practice DR and I am very thankful. Within 10 days they figured out what was going on and had me in the operating room. Dr. Melvin did my surgery. It was very aggressive as it should have been. They are top of the line for this kind of surgery. My only complaint about the hospital is the same as some others. They look at each piece on it's own and the teams don't readily share information. I had to be my own advocate and be willing to stand up to the different team 'leaders' to get answers and what I felt was best for me. I will say the nursing staff is fantastic and went to bat for me on several occasions. Hope this helps a bit, J
My dad's surgery was also performed by Dr. Siegel almost a year ago. He seemed very confident that he got everything but wanted my dad to have radiation and chemo as a precaution. I can't really remember everything. I did go to his follow-up after surgery. They couldn't really stage his cancer. At the time it was no where else. He went through radiation and a couple of doses of xeloda (he had to stop -- he couldn't tolerate it) and then twelve weeks of gemzar. He was off for three months and just recently a PET scan showed he had it in his liver. After the biopsy they said they couldn't operate. He is now supposed to start chemo -- cisplatin -- next week. His oncologist gave him nine months. When my dad asked if chemo might extend his life, the doctor just shrugged and said possilbly. I have been researching the Clinic and UH. I know UH is supposed to be the best, but it seems like they have written my dad off. Candy, who was the top guy your brother is seeing? I really want to my dad to think about a second opinion. I have heard good things about Dr. Robert Pelley at Taussig. Now, I am not so sure about even pursuing that??? I was also told that Richard KIM at CCF Taussig is also supposed to have seen a large number of patients with pancreatic, bile duct and gall bladder cancers. At UH, the names I was given were Smitha Krishnamurthi and Joseph Gibbons. It would certainly be easier to get a second opion at UH vs. having to transfer medical records to CCF. Also, has anyone heard of Cancer Treatment Centers of America? They seem to have really good outcomes.
Belle, you cracked me up because I am in the middle of making chicken soup. In relation to the giblet approach...I have discovered after all these years, that when I would make it with cut up chicken I NEVER got as much flavor as with a whole chicken which I use now. Translation, albeit stretching, to use the whole body is better than in parts!!! Sorry, couldn't help it.
Rook13, that is such great news about your husband. We had so much good news over the holidays on our site and apparently it is still coming...excellent!
We are definitely entitled to other opinions and no one wants to deal with a depressing doctor, we have enough of that in our lives, yes?
Candy...Aggressive and positive, perfect combo! We do not listen to statistics as they change too fast and we are NOT a statistic.
Dad's Daughter..No time frames! We were not born with an expiration date stamped on the bottom of our feet. As for Cancer Treatments Centers? If you type that in to our search button you will see what others have said. I have heard pros and cons but then you can hear that anywhere.
For all you wonderful ladies: I practice my own kind of medicine...GUT feelings. They are usually right. Get opinions until you are totally satisfied. And to all of you....don't forget to take care of yourselves as well.
Hi dads daughter,
I can give first hand information regarding Dr. Pelley of the CCF. I was sent to him by my surgeon, Dr. John Fung. Dr. Fung feels he is one of the best for colangiocarcinoma. He did not recommend chemo treatments because Dr. Fung was able to remove the entire tumor. Be prepared, he has a very dry sense of humor. I also had to wait almost 2 hours to see him. Overall, I love the CCF and have had excellent care there.
Betsy
Dads Daughter,
Everyone's experience with this is different and there are so many, many variables but I have very few positive things to say about the Cleveland hospitals and especially about CCF. We could not get straight answers from either facility other than there was no hope and the care at CCF left A LOT to be desired. I do believe that there are still some very good physicians at CCF but the entire experience was very difficult. We ultimately got a third opinion at UPMC through Dr. Gamblin and, although we did not get the answers we hoped for, we did have a much better experience there and felt that we were finally given an explanation that made sense. UPMC did more for my father within the first 24 hours than CCF and UH combined did over 2+ months.
To Dad's Daughter-
I am currently being treated at Cancer Treatment Centers of America (Chicago location). I live in Stow, OH and got opinions at Akron City (Summit Oncology) and Dr. Krishnamurthia at Univ. Hosp. Although I am sure they are good - they were all pretty negative and wanted to put a timeline on my life which I will just not accept! I did have my surgery at Akron City by Dr. Brian Jones (amazing doctor) - but after being so let down in Ohio that is when I figured I had nothing to lose by calling Cancer Trmt. Centers of America! I have to tell you - they are awesome and the patient is Number 1!! I felt so at peace there and had my first chemo treatment in the beginning of October without hesitation! They are SO full of hope and all have such a positive attitude, unlike here in Ohio! I would most definitely recommend calling them for an opinion! They fly (or reimburse you for mileage) when you come there and they feed you and house you too! It was a wonderful experience and I am SO happy and blessed to be treated by these professionals!! My e-mail address is srpaul58@aol.com if you have any questions! Call them - you won't be sorry!!
Sharon Paul
I have had excellent care at the Cleveland Clinic. My surgeon is Dr. John Fung and he is a great surgeon and a very kind and gentle man. My radiologist is Dr. Stephan's and he just performed steriotactic radiation on my two new tumors. My oncologist is Dr. Estfan and he is wonderful too. I am going to MD Anderson for a second opinion because I just want to make sure that we are being aggressive enough. Lisa
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