What is the BEST cancer center out there??

kittyhawk
kittyhawk Member Posts: 1
in Uterine/Endometrial Cancer #1
I was diagnosed with endometrial cancer in 2002 and had a total hysterectomy. I almost made it to the 5 year mark but found it had spread to my pelvis. When I asked the doctor why he hadn't done any kind of scans to keep a check on it he said "94.6% of the time when the hysterectomy is done, the cancer doesn't return." Doesn't that make me special :) The things you learn as you go through this struggle. They tried radiation, but it didn't shrink the tumor so I had to have a portion of my pelvis removed. That was 2007-then in 2009 2 spots showed up on my Pet/Cat scan. I went in for surgery and they found 12 spots of which 9 were cancerous. Now in May, 2 spots showed up. My doctor told me he's moving his practice to another state so I should look for a new doctor. Well, yesterday, I had a meeting with a doctor at Vanderbilt-I've been replaying parts of the conversation over in my head and don't like the way the meeting went. Things like "Your lucky to be alive, because most women that have recurrent endometrial cancer don't live this long and that you've survived it 3 times now..." and "so since you're here today tells me you want to continue with treatment, but when your spiritual, emotional, physical tells you you've had enough then you need to tell me that" I was taken back by that statement because I am a vibrant, positive person-in fact, when I told my neighbhor that, she said people that don't know me would never know I had cancer and so many challenges because I don't let it control my life.
So the question I would like to ask is What cancer center/hospital/doctor in the country would you recommend for endometrial cancer? I spent several hours online and I'm leaning towards MD Anderson. Does anyone have any stories to share about their experience there or any other facilities. I've been told it has now spread to the iliac lymph nodes so they can't do surgery, only chemo to slow down the growth. Yet I read studies online where they have removed the lymph nodes. The frustrating part has been who do you believe? When I asked the doctor yesterday about the importance of having an alkalaine body or removing sugar from my diet, she said none of that really matters-if it did she'd be out of a job her words)yet I've read alot about the importance of those 2 things.
I appreciate any input that would help me with a gameplan to keep fighting this. Thank you so much

Comments

  • california_artist
    california_artist Member Posts: 816 Member
    #2
    As to none of that really
    As to non of that really matters, what a load of crap! Of course it matters. Cancer cells have needs and wants and desires, and just like the heart dies a bit for lack of love, cancer cells die for lack of sugar, lack of an acidic diet, lack of an aneorbic -can't spell it but a cell without oxygen, there are things that will keep cancer from establishing new blood vessels, which they need to metastisize.
    Go and get a book called Foods that Fight Cancer, get it today. It explains some on how cancers grow and foods that fight that growth, obviously. Your doctor is ill informed and there should be some major changes in requirements for doctors not only on their chairside manner but on how to actually help their patients.

    I am so sorry you had that experience. M.D. Anderson is a hospital that is in the process of embracing other ways to cure a patient which include not only nutrition therapy, but mental and physical therapy as well. It has my vote hands down.

    Also the book anti cancer a new way of life is very helpful, but rather longer and more involved than the Foods that fight cancer.

    Take a tape recorder to all interviews, would be my advice, and then just smack the doctor upside the head at the end of the visit is she acts like that again.
    Maybe we should all get T-shirts that say Ah? Excuse me, but you are NOT GOD!!!!!! and wear those to all doctor's visits henceforth.

    Love,

    Claudia
  • upsofloating
    upsofloating Member Posts: 466 Member
    #3
    Congrats on your longterm
    Congrats on your longterm success to date! A lot has changed in treatment in the nearly 10 yrs since you were diagnosed. Do you know what type of endo cancer you have?
    I have heard a lot of good things about MD Anderson but have no personal experience. Norma who posts here is treated there. Sorry your recent experience has not been good. Have you had prior chemo treatment? If the cancer cells are in the lymph system it is usually the best route to go as the cells may have traveled farther than the enlarged lymph nodes.
    As for the doctor's comment about your desire for treatment going forward, as a patient new to her she may have been just opening the door for any discussions related to quality vs quantity of life which can be of concern to many, yet not in way suggesting not fighting just that each person can want different things.
    As far as diet, etc, you will find quite a number of ladies here who very engaged with this. I cerainly believe in doing everything in all areas of my life to fight not just that prescribed by medical doctors -- unless it's Dr Servan- schreiber who wrote Anti- Cancer, A New Way of Life.
    Annie
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #4
    upsofloating said:

    Congrats on your longterm
    Congrats on your longterm success to date! A lot has changed in treatment in the nearly 10 yrs since you were diagnosed. Do you know what type of endo cancer you have?
    I have heard a lot of good things about MD Anderson but have no personal experience. Norma who posts here is treated there. Sorry your recent experience has not been good. Have you had prior chemo treatment? If the cancer cells are in the lymph system it is usually the best route to go as the cells may have traveled farther than the enlarged lymph nodes.
    As for the doctor's comment about your desire for treatment going forward, as a patient new to her she may have been just opening the door for any discussions related to quality vs quantity of life which can be of concern to many, yet not in way suggesting not fighting just that each person can want different things.
    As far as diet, etc, you will find quite a number of ladies here who very engaged with this. I cerainly believe in doing everything in all areas of my life to fight not just that prescribed by medical doctors -- unless it's Dr Servan- schreiber who wrote Anti- Cancer, A New Way of Life.
    Annie

    So sorry about your recurrence(s)
    I've often wondered what I would do if I had a recurrence. I'm pretty sure I'd want a second opinion, but where? MD Anderson and Mayo always come to mind. Why? I don't have a clue, but I do know it would not be one of the Cancer Centers of America. Again, no real reason, just my gut.

    I'm in Northern California and within less than 2 hours of 3 NCI Cancer centers (UC Davis, UC San Francisco, and Stanford). MD Anderson and Mayo are also NCI centers. So is Vanderbilt. I always felt if I were ever diagnosed with cancer, I'd want my care at one of those sites and I do. Being a part of a "think tank" where the research is going on and where the physicians actually talk to each other and their basic science colleagues, and collaborate with other researchers outside rather than working in isolation was important to me. On the flip side, they're really busy with other academic activities!

    So what's the best place? I really don't know. There are bad, ok, good, better, and best physicians in every setting, but I like the NCI collaboration designation because of the network. The good news (I think) is that our medical team is not insulted by you wanting another opinion. Afterall, they often do it on their own, we just don't know it. They are life long learners and even with some of their egos, know they don't know everything.

    Hope you find comfort and reassurance and can start a good treatment plan. If you choose MD Anderson, you might want to connect with Norma on this site because she goes there. What was your original stage and grade of endo cancer?

    Oh, and the anti-cancer diet - it just makes sense.

    Suzanne
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #5
    Sorry you have had to go through so much
    Kittyhawk:

    Sorry you have had to go through this. It is bad enough with a cancer diagnosis but to deal with certain doctors is quite another story.

    Even before my hysterectomy, I had asked about getting a scan and I was told "because they knew it wasn't cancer" that the scan would only show the endometriosis scarring that I had. Well I had the hysterectomy and then a month later had staging surgery.

    Long story short, original oncologist retired. New onc didn't want me as a patient (I was NED), then tried to say I had a recurrence. Went to another new doctor. He ends up sending back to the same group. Then I went out of state. Which was the best thing.

    HOWEVER,please, please make sure your insurance will handle it. I was getting PET Scans at the out of state place. Then we decided to switch insurances because we were paying $2,600 a month on a family plan. Big mistake on my part. Just had my 6 months check up (everything is good). But am due for a PET Scan and they wanted to remove my port. New insurance is denying the PET unless they have a good reason. The original reason wasn't good enough and didn't fall into the guidelines.

    I am telling you this because when you finally find a great place (like I did), make sure your insurance will cover it.


    My best to you,

    Kathy
  • california_artist
    california_artist Member Posts: 816 Member
    #6
    Kaleena said:

    Sorry you have had to go through so much
    Kittyhawk:

    Sorry you have had to go through this. It is bad enough with a cancer diagnosis but to deal with certain doctors is quite another story.

    Even before my hysterectomy, I had asked about getting a scan and I was told "because they knew it wasn't cancer" that the scan would only show the endometriosis scarring that I had. Well I had the hysterectomy and then a month later had staging surgery.

    Long story short, original oncologist retired. New onc didn't want me as a patient (I was NED), then tried to say I had a recurrence. Went to another new doctor. He ends up sending back to the same group. Then I went out of state. Which was the best thing.

    HOWEVER,please, please make sure your insurance will handle it. I was getting PET Scans at the out of state place. Then we decided to switch insurances because we were paying $2,600 a month on a family plan. Big mistake on my part. Just had my 6 months check up (everything is good). But am due for a PET Scan and they wanted to remove my port. New insurance is denying the PET unless they have a good reason. The original reason wasn't good enough and didn't fall into the guidelines.

    I am telling you this because when you finally find a great place (like I did), make sure your insurance will cover it.


    My best to you,

    Kathy

    always appeal
    UPSC is a pap serous cancer like ovarian and you do qualify for the PET/CT. YOu certainly don't need all the additional radiation given off by the CT scanner.

    You might check on the ovarian cancer board to see if they have trouble getting the PET scans.

    Just a thought.

    ain't life grand. It is always an adventure

    My best to you too,

    Claudia
  • Fayard
    Fayard Member Posts: 438 Member
    #7
    Besides the hysterectomy,
    Besides the hysterectomy, what kind of treatment did you have? I am curious, because I was diagnosed with uterine cancer, stage 2 because spreed to the cervix. I had a radical hysterectomy, and I am still taking chemo (Taxol and Carbonplatin. I am in treatment #14 of 18. The doctor took out 58 lymph nodes, and fortunately all were clean.

    My doctor mentioned the possibility of having the cancer to comeback, because the cancer cells were strong: clear cells. He also mentioned that even though the lymph nodes were clean, chemo would take care of the possible cancer cells that might be still present, if any. If the cancer came back, it will be in the liver or lungs since have no ovaries, uterus, or fallopian tubes.

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