rethinking cancer center/Taussig Institute @ Cleveland Clinic

nateandkatesmom · February 2017

I am in counseling w/ a social worker at a satellite branch of Cleveland Clinic.. This began while I was in treatment at the main campus for "pelvic floor dyfunction" physical therapy. I was first seen by a urologist there.

Yesterday I had a session and discussed my upcoming appt. to review biopsy reports and also to discuss our lack of resources that prevent me from going to a larger, specialized facility. Well, my counselor said she could help link me with assistance for short term housing and other support services if I would need to be at the main campus. She also said there was an oncology unit at the Twinsburg branch, which is about 1 hour away. I see her 1-2 times a month on average, and we are able to manage the trip for the most part.

I told her about this message board and the emphasis on using a cancer center. She encouraged me to not just close the door on that option but to get more info. and let her know and she will explore possible options for assistance.

So, overall I found out that Cleveland Clinic is ranked 8th in the US for cancer care. An older article mentioned that at that time Cleveland Clinic was the only institution releasing their outcome studies for specific diagnoses. However, when I looked elsewhere Colon Cancer and Lung Cancer seemed to be the big two at Cleveland Clinic. How do you know which place(s) are best for uterine cancers? It seems our community hospital that is linked w/ CC utilizes their oncologists and follow the same protocols for chemo and radiation. It seems the local hospital has the same specialized equipment for radiation, if I am reading the online info correctly.

However, the main campus has extra stuff incl. art and music therapy, nutrition and wellness specialists, and just tons more stuff. My eyes were opened to what you have all been saying.

My questions are: How do I determine if Taussig Institute is a good place for uterine cancer and what questions should I ask about their partnership w/ our community hospital to see if some or most services would be of equal quality there? (I do know for certain one of their gyn. oncologists will actually perform the hysterectomy, along w/ my gyn. and will not be there just to determine staging.) I also know from reading here that I want to ask about having my pathology reports repeated at Taussig. Which, on a sidenote, my chart has yet to notify me that the report is available. So, for those of you that mentioned a 2nd opinion I am thinking that is what is happening. Whatever the nurse practitioner shared w/me seems to have been from that "preliminary" report.

Thanks for your help.

Dorothy

Kvdyson · February 2017

Dorothy, if it were me, I'd

Dorothy, if it were me, I'd wait for the final results of the biopsy before spending too much energy on this. If the diagnosis is a "garden-variety" cancer (I hate that term but that's what they call it), then your local gyn-onc and community hospital is likely to have everything that you'll need.

If the diagnosis is something other than that, then you'll probably want to do online research on specialists. One of the ways I do that is by typing the name of the cancer type into Google, reading the studies to determine if they're current and relevant, then doing research on the authors of those studies. You can determine whether a certain author has published multiple studies on the same subject by typing their name into Pubmed. You can access Pubmed by typing that word into Google.

I'll be happy to share a list of specialists for carcinosarcoma (aka MMMT) if it ends up being that - hopefully you won't need it. Wishing you peace and comfort, Kim

CheeseQueen57 · February 2017

Here is my opinion. Just mine

It is my humble opinion that you have just one life. I went to Fox Chase Cancer Center which their motto is "it matters where you get treated first". You want the best chance at the outset to survive this. Yes, local hospitals have equipment and the doctors consult with the cancer center doctors but in my opinion it's not the same. You potentially have a life threatening illness. It's not the extras like art therapy and massage I was concerned about but that they are top in their field, all of them. If there's assistance available to you, great! You have one chance at frontline treatment. You want it to be the best you can get. If your insurance will pay, why not get the best care. You might find this article interesting. It's a little old but still relevant Good luck

http://www.newsweek.com/why-top-cancer-center-could-save-your-life-81425

CheeseQueen57 · February 2017

Disagree

Sorry Kim. Disagree on the "garden variety "comment. Can be as deadly as the other types, especially later stage and high grade. Would still recommend major cancer center.

nateandkatesmom · February 2017

CheeseQueen That is the article I was quoting from!

How cool is it that I googled and read the very article you are referencing? That is one of the reasons I ended up starting this thread. To put things in context, I used to work as a clinical counselor and before that as a child life specialist at a children's hospital. So all those add on services say to me that the program is not just nuts and bolts but embracing the whole person. And, my experience has been that when there is that type of approach you attract and retain the best medical staff and the best procedures and equipment. (just what I observed as things grew and evolved and outcomes vastly improved.)

Aside from that, the main question I have is how do I know Cleveland Clinic is best for gynecological cancers? They are ranked 8th overall in the U.S, but when I looked closer it seemed that lung and colon cancer had the most focus. I looked at their clinical trials and publications in a random sort of way. Kvdyson gives a much clearer, understandable way to get a deeper look at things. Please read my response to her, as I am totally confused again about my biopsy reports. Thanks!!!

nateandkatesmom · February 2017

Kvdyson said:
Dorothy, if it were me, I'd
Dorothy, if it were me, I'd wait for the final results of the biopsy before spending too much energy on this. If the diagnosis is a "garden-variety" cancer (I hate that term but that's what they call it), then your local gyn-onc and community hospital is likely to have everything that you'll need.

If the diagnosis is something other than that, then you'll probably want to do online research on specialists. One of the ways I do that is by typing the name of the cancer type into Google, reading the studies to determine if they're current and relevant, then doing research on the authors of those studies. You can determine whether a certain author has published multiple studies on the same subject by typing their name into Pubmed. You can access Pubmed by typing that word into Google.

I'll be happy to share a list of specialists for carcinosarcoma (aka MMMT) if it ends up being that - hopefully you won't need it. Wishing you peace and comfort, Kim

something wonky is going on with my biopsy reports

Kim

Up until yesterday, I was totally in the same mindset. Having been told that there was no definitive diagnosis from the D&C biopsies, and that the next step to determine diagnosis was a hysterectomy, I was comfortable with that happening at our community hospital. I anticipated that if a more aggressive cancer was diagnosed after the hysterectomy we would then explore options, but I needed to stay local. My social worker encouraged me to keep that door to a larger facility open. So all was good and I was calm.

THEN I requested a copy of the report that the nurse practitioner reviewed with me via a phone call on Monday of this week. I was told the doctor wasn't in Mon or Tues but they would get his permission on Wed so I would have it before my counseling appt. Well, on Wed I was told the report wasn't even at the office. ??? I had been checking "my chart" off and on, and as of today there is no notification that the pathology report has been filed. In all other instances, I was able to see when it was completed and when it was uploaded to my chart. I couldn't open it, as the doctor has to do that first. But I could see that it was there . This time, nothing.

So what was the nurse practitioner reading when she spoke with me? Surely it was a report on the computer, which could be printed off in the office. Therefore the report WAS in the office. However, I didn't want to make a fuss in the event that additional testing had been ordered or in the event that they checked with the doctor and he said not to give me the report w/o he, himself talking to me. (as opposed to the nurse practitioner, since I am not her patient.)

And yes, my mind is like a squirrel in a tree jumping everywhere. However, I do know that there is no clear diagnosis available from the D&C, per the phone conversation.

Does any of this make sene?

Thanks,

Dorothy

Kaleena · February 2017

Cleveland Clinic - Main Campus

Dear Dorothy:

I go to the Cleveland Clinic - main campus. My gyne/onc is there and also my urologist. But like every hospital, physicians move so you have to see what fits your circumstances. I had a wonderful gyne/onc at Cleveland Clinic. Then he left for Texas. I tried another physician there who I saw twice but I didn't like. The nurse from the first doctor referred me to a different doctor whom to this day I still see. Also with regard to the urologist, the first one I wouldn't waste my time on but the second urologist is wonderful.

I've been going to Cleveland Clinic since 2010. You can read my story if you would like but since I was first diagnosed in 2005 it is a long (thankfully) story. I am pretty picky now when it comes to doctors.

With regard to Cleveland Clinic, I feel they saved me. (I travel 2 1/2 hours to get there). When I had a recurrence in 2009, I was told I needed chemo, I couldn't have surgery and that I would have a permanent colostomy. I went to Cleveland Clinic and they reviewed everything. The doctor there believed he would be able to remove the tumor with clear margins and he did. Not only did the biopsy positive mass come out negative, they only found one lymph node which had microscopic cells and instead of treatment I decided on a wait and see approach then I also had a hernia repair at the same time. (6 hour surgery total). I hope this helps in your decision.

Kathy

Soup52 · February 2017

I suppose I am out of it or

I suppose I am out of it or just more trusting. I live in a mid size city, but we do have our own cancer center with many additional areas to help us such as nutrition, genetics, massage, exercise classes, therapists etc. I have an excellent gynechological oncologist who came from Texas. So far I have confidence in him. One of my friends has falopian cancer which has reoccurred. He has treated this, but has also referred her to a specialist in Chicago where she received immunotherapy also. Am I out of it or am I ok staying in my own city where my family and friends are here for support. Maybe I will feel different if there is a reoccurrence, but so far I've had about the same treatments of many of the other people on this board.

Lou Ann M · February 2017

Soup52 said:
I suppose I am out of it or
I suppose I am out of it or just more trusting. I live in a mid size city, but we do have our own cancer center with many additional areas to help us such as nutrition, genetics, massage, exercise classes, therapists etc. I have an excellent gynechological oncologist who came from Texas. So far I have confidence in him. One of my friends has falopian cancer which has reoccurred. He has treated this, but has also referred her to a specialist in Chicago where she received immunotherapy also. Am I out of it or am I ok staying in my own city where my family and friends are here for support. Maybe I will feel different if there is a reoccurrence, but so far I've had about the same treatments of many of the other people on this board.

I must be out of it too.

I live in a small town of about 1000 and travel to a city 60 miles away to see my oncologist. I got the best care from my hometown GP when he found a small tumor when I came in for a yeast infection. He came in the day he was leaving for Greece to do more tests and made sure I would get an quick referral. My oncologist is in a city of 43, 000. He is very well educated and unbelievablely caring. He, his PA, and the nurses there are the very best. This is not a large teaching cancer center but it is top notch. He is willing to look at all options. Sometimes he wil leave for a few minutes to,do some quick research when I ask something. He recommended looking into acupuncture. He is fine with me trying essential oils as long as I don't eat it. And was very excited to try the immunotherapy route. i have also had genomic testing and everything else advertised on the CCA comercials. I have the very best and close to home.

i think you can find excellent doctors in every situation and also very bad doctors in both small locales and in,the,larger settings. I have been blessed with excellent caring doctors close by.

Hugs and prayers, Lou Ann

namedropper · February 2017

Hi, I go to the Cleveland

Hi, I go to the Cleveland Clinic and love it. They just opened up a new cancer center in the last few weeks. I had breast cancer and was treated there and in 2012 and then I got MMMT uterine cancer in 2014 and was treated there also. I went for my chemo treatments at their Willoughby location that is close to my home. My breast can cancer came back after 4 1/2 years and I am now taking chemo pills. Call the Doctor's office and ask them to put everything on Mychart for you. The Cleveland clinic doctors are up to date on the latest treatments and talk with other doctors from around the world. I love the cleveland Clinic. Good luck to you in what ever you decide to do. Sue

nateandkatesmom · February 2017

Kaleena said:
Cleveland Clinic - Main Campus
Dear Dorothy:

I go to the Cleveland Clinic - main campus. My gyne/onc is there and also my urologist. But like every hospital, physicians move so you have to see what fits your circumstances. I had a wonderful gyne/onc at Cleveland Clinic. Then he left for Texas. I tried another physician there who I saw twice but I didn't like. The nurse from the first doctor referred me to a different doctor whom to this day I still see. Also with regard to the urologist, the first one I wouldn't waste my time on but the second urologist is wonderful.

I've been going to Cleveland Clinic since 2010. You can read my story if you would like but since I was first diagnosed in 2005 it is a long (thankfully) story. I am pretty picky now when it comes to doctors.

With regard to Cleveland Clinic, I feel they saved me. (I travel 2 1/2 hours to get there). When I had a recurrence in 2009, I was told I needed chemo, I couldn't have surgery and that I would have a permanent colostomy. I went to Cleveland Clinic and they reviewed everything. The doctor there believed he would be able to remove the tumor with clear margins and he did. Not only did the biopsy positive mass come out negative, they only found one lymph node which had microscopic cells and instead of treatment I decided on a wait and see approach then I also had a hernia repair at the same time. (6 hour surgery total). I hope this helps in your decision.

Kathy

thanks, Kaleena!

As i mentioned, I did go to Cleveland Clinic to see a urologist as well as for the pelvic floor physical therapy. I also saw a gyn. specialist there. This was a few years ago. It is an amazing facility, but totally overwhelming to me. Also, the commute is challenging. I do, however, totally agree that they are amazing.

I go to the Twinsburg branch to see my counselor, who is a social worker.

I was referred to C.C. d/t my PCP not being able to figure out what was going on with me. Also, I had no health insurance. Their HCAP program covered everything, even though my husband and I were both working.

Once I was finished w/ physical therapy I continued to see my counselor in Twinsburg. She is amazing. The one hour drive is worth it and I certainly didn't want to change providers after we had worked together so long.

nateandkatesmom · February 2017

Soup52 said:
I suppose I am out of it or
I suppose I am out of it or just more trusting. I live in a mid size city, but we do have our own cancer center with many additional areas to help us such as nutrition, genetics, massage, exercise classes, therapists etc. I have an excellent gynechological oncologist who came from Texas. So far I have confidence in him. One of my friends has falopian cancer which has reoccurred. He has treated this, but has also referred her to a specialist in Chicago where she received immunotherapy also. Am I out of it or am I ok staying in my own city where my family and friends are here for support. Maybe I will feel different if there is a reoccurrence, but so far I've had about the same treatments of many of the other people on this board.

Soup52 I agree

I worked for years at a community children's hospital. Community based care made such a difference for so many of our families. Some of the kiddos ended up at St. Jude's or other facilities but for the most part they remained at our local hospital. The oncologists were always consulting and researching the newest and best for each of the patients. And, whenever new equipment was needed there was a huge push to get it. Having family and friends as well as being able to keep in contact w/ work (for parents) and school (for kiddos) was really helpful. Our specialists came from all over the U.S. and when the hospital closed many went to major teaching hospitals.

I only started this thread b/c my social worker encouraged me to not close the door on the possibility of using Cleveland Clinic just d/t finances. Thankfully my medical expenses (if approved) will be covered. It just seems that being a dedicated cancer center does not in itself make it the best place for every type of cancer, and that is what I was trying to learn more about.

nateandkatesmom · February 2017

namedropper said:
Hi, I go to the Cleveland
Hi, I go to the Cleveland Clinic and love it. They just opened up a new cancer center in the last few weeks. I had breast cancer and was treated there and in 2012 and then I got MMMT uterine cancer in 2014 and was treated there also. I went for my chemo treatments at their Willoughby location that is close to my home. My breast can cancer came back after 4 1/2 years and I am now taking chemo pills. Call the Doctor's office and ask them to put everything on Mychart for you. The Cleveland clinic doctors are up to date on the latest treatments and talk with other doctors from around the world. I love the cleveland Clinic. Good luck to you in what ever you decide to do. Sue

Sue thank you I have mychart

I have been a patient there for a few years, seeing first a urologist and then receiving physical therapy for pelvic floor dysfunction. (all at the main campus) A few months in I started seeing a counselor at the Twinsburg branch. Now I just have the counseling, everything else is finished. The Twinsburg branch also has an oncology unit that offers chemotherapy.

My gyn. works out of Mercy Health St. Elizabeth Hospital here in Youngstown. A gyn. oncologist from Cleveland Clinic will operate alongside my gyn. (not just be there to do the staging) during the hysterectomy. I totally agree that it is an amazing facility. However, in the many months of going for physical therapy it was a huge stressor, both the gas, tolls, parking and the headache of navigating Cleveland. (we don't have a gps or anything like that and each time different roads would be closed) Even with packing drinks and sandwiches we were sometimes unable to go d/t the other costs. I know that sounds trivial when you are getting free health care at a stellar institution, but it is a reality.

My gyn. is the one that first educated me on the importance of a gyn. oncologist being there during the hysterectomy. He emphasized the research and knowledge of their doctors.

I think, as Kim so wisely pointed out in the first response in this thread, I need to wait for my post op appt on Monday to get the actual pathology report.

"Dorothy, if it were me, I'd wait for the final results of the biopsy before spending too much energy on this. If the diagnosis is a "garden-variety" cancer (I hate that term but that's what they call it), then your local gyn-onc and community hospital is likely to have everything that you'll need." Kim's response

Thank you all for your caring responses. I called my PCP yesterday and asked for Valium that I could take multiple times a day. (vs. in the past I have had it on hand to take for things like the dentist or an unexpected panic attack) I must say, it is helping. It has been 10 days since the D&C and sleeping, eating and irrational crying/talking were all problematic. I slept last night. Very weird dreams, but I slept. I took one this morning and was finally able to eat something for lunch. Best of all, I haven't had any irrational crying or circular talking episodes with my husband. So, since he gave me 20 Valium I am thinking that will allow me to next Saturday. Giving me Tuesday -Friday to process the pathology report I will receive on Monday.

Dorothy

Kvdyson · February 2017

CheeseQueen57 said:
Disagree
Sorry Kim. Disagree on the "garden variety "comment. Can be as deadly as the other types, especially later stage and high grade. Would still recommend major cancer center.

That's good! The whole

That's good! The whole purpose of being part of this group is to get all different opinions so that means it's working as designed.

MoeKay · February 2017

CQ, Agree in Concept

Although I wasn't treated at a major cancer center, I made sure that my gyn-onc had extensive experience and was very highly regarded. Before treatment, I sought a second opinion at a major cancer center, where the gyn-onc seemed knowledgeable, but much less experienced than my surgeon. Only when I was opened up on the operating table was my gyn-onc able to observe the enlarged lymph nodes and bulbous swelling involving the upper cervix, which he decided warranted a radical hysterectomy and pelvic and paraaortic lymphadenectomy.

I don't think it's always necessary to be treated at a major cancer center, but I think it's always necessary to be treated by someone highly regarded, not only by patients, but by other medical professionals as well. Things are often not what they initially seem to be, and a less experienced surgeon might not recognize all the potential red flags. Make sure you do your research.

rethinking cancer center/Taussig Institute @ Cleveland Clinic

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