Ovarian Cancer Conference in Boston

khsherwood
khsherwood Member Posts: 33 Member
in Ovarian Cancer #1

Hi, I am going to the conference in Boston this weekend put on by the Foundation for Women's Cancer at the Wyndham Hotel on Saturday. Is anyone else going? Kelly

Comments

  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #2
    From one Kelly to another Kelly

    I wish I could go too but I'm way over on the west coast in California.  Please report back to us after the conference.

    Kelly

  • khsherwood
    khsherwood Member Posts: 33 Member
    #3
    lovesanimals said:

    From one Kelly to another Kelly

    I wish I could go too but I'm way over on the west coast in California.  Please report back to us after the conference.

    Kelly

    Boston conference

    Hi Kelly, I am sitting in the train station waiting to go home to Maine. I thought I would tell you about the conference.  First of all, it was free for survivors. They provided very nice snacks and a lunch, all for free. This was good.

    Second. The speakers were all doctors from Mass General Hospital. They constantly kept reminding us about what a great hospital it was, number 2 according to US News and World report. Ok, that's fine but by the tenth time I heard them say it I was really put off. I am a patient at Dana-Farber in Boston, which is the number one hospital for Cancer in New England. There are a lot of good hospitals all over the country. This push to sell their hospital was a little much.

    Number three. I learned a couple of very interesting things. The one  that stuck out in my mind the most was that according to new research in the UK the CA-125 test doesn't improve the outcome for survivors. You know how most of us get tested every three or six months in hopes of catching a recurrence earlier than we would if we just waited for obvious symptoms? Apparently it doesn't really make a difference in survival rates. The UK is going to abandon these tests but here in the US we are reluctant to get rid of them right now. Stay tuned.

    During a question and answer period I asked them to comment on the new test that the student at Johns Hopkins came up with (See a previous post about it on this site). They just laughed. They said IF it has any validity it will take at least another ten  years of testing before it can be proven. Darn!

    On the other hand they were trying to encourage everyone with Ovarian Cancer to volunteer to be part of a clinical trial. They discussed in length all of the trials that are being done at Mass General. It here are too many to list here. If you are interested you can go to clinical trials.gov to see what they are.

    Finally, I left before it was over. A nurse who works in oncology spoke about all of the side effects that can happen with chemo and what to do to help relieve them. She was merely reading it straight off of the printed materials that were handed out. She was a terrible speaker. I had the printed materials and could read it for myself so I left ( to go downstairs and swim in the outdoor pool -very nice).

    if you go to any of these conferences run by the Foundation for Women's Cancers, take it all in with a grain of salt. 

    Have a good summer, I usually never say anything but I do read the posts on this site about once a week. The other Kelly

  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #4
    khsherwood said:

    Boston conference

    Hi Kelly, I am sitting in the train station waiting to go home to Maine. I thought I would tell you about the conference.  First of all, it was free for survivors. They provided very nice snacks and a lunch, all for free. This was good.

    Second. The speakers were all doctors from Mass General Hospital. They constantly kept reminding us about what a great hospital it was, number 2 according to US News and World report. Ok, that's fine but by the tenth time I heard them say it I was really put off. I am a patient at Dana-Farber in Boston, which is the number one hospital for Cancer in New England. There are a lot of good hospitals all over the country. This push to sell their hospital was a little much.

    Number three. I learned a couple of very interesting things. The one  that stuck out in my mind the most was that according to new research in the UK the CA-125 test doesn't improve the outcome for survivors. You know how most of us get tested every three or six months in hopes of catching a recurrence earlier than we would if we just waited for obvious symptoms? Apparently it doesn't really make a difference in survival rates. The UK is going to abandon these tests but here in the US we are reluctant to get rid of them right now. Stay tuned.

    During a question and answer period I asked them to comment on the new test that the student at Johns Hopkins came up with (See a previous post about it on this site). They just laughed. They said IF it has any validity it will take at least another ten  years of testing before it can be proven. Darn!

    On the other hand they were trying to encourage everyone with Ovarian Cancer to volunteer to be part of a clinical trial. They discussed in length all of the trials that are being done at Mass General. It here are too many to list here. If you are interested you can go to clinical trials.gov to see what they are.

    Finally, I left before it was over. A nurse who works in oncology spoke about all of the side effects that can happen with chemo and what to do to help relieve them. She was merely reading it straight off of the printed materials that were handed out. She was a terrible speaker. I had the printed materials and could read it for myself so I left ( to go downstairs and swim in the outdoor pool -very nice).

    if you go to any of these conferences run by the Foundation for Women's Cancers, take it all in with a grain of salt. 

    Have a good summer, I usually never say anything but I do read the posts on this site about once a week. The other Kelly

    Hi Kelly

    Thanks so much for the detailed report.  I can tell from what you wrote that some of the conference clearly was good, like learning that the UK will be abandoning the CA 125 for recurrence, and some of it not good.  If the Foundation for Women's Cancers provide conferences in my neck of the woods, I will probably try to attend but as you said, take it all with a grain of salt.

    I hope you and the other ladies have a good summer too.

    "Kelly from California"

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