Just read....there are over 250,000 of us!!!

KathiM
KathiM Member Posts: 8,028 Member
edited March 2014 in Breast Cancer #1
Yup, over a quarter of a million people have been diagnosed with breast cancer all told....whew! And with better 'early detection techniques', more and more are surviving...Yea!

So my question, and one posed by the article as well, who should follow we long-term survivors, since the oncologists are getting more and more newly-diagnosed everyday, and only have 24 hours in their day? What do you all think? Our primary care docs (I personally know that my friend's missed her BC completely....)? Nurse Practicioners (we have a nursing shortage)?
What do you think?

Hugs, Kathi

Comments

  • KathiM
    KathiM Member Posts: 8,028 Member
    #2
    For me, it looks like I will need to remain vigilant on my own behalf. I have requested a copy of all of my charts (both rectal and breast...this is happening on my rectal as well). I will need to be strong with my primary, when I think something is wrong, and demand a consult with an oncologist...but, otherwise, if everything is fine...well, let my primary care order the blood tests, and the mammo's, and the colonoscopies....make room for one more newly diagnosed to fill my onc's schedule.

    Hugs, Kathi
  • jackiemanz
    jackiemanz Member Posts: 85
    #3
    Wow. I new the number would be up there but not that high.

    You have a very good question. I have a better relationship with my primary Doc than I did with the Onc I saw when I was first diagnosed. So if I had a chose I would go with primary.
  • cabbott
    cabbott Member Posts: 1,039 Member
    #4
    I had a bit of a crazy idea, but sometimes off the wall ideas have some merit. Think about this: how about group meetings with breast cancer folks? I've heard that doctors working with diabetics have sometimes been able to meet with more folks and get more done by combining like patients and work with them in groups rather than meet with them individually. Much of the stuff we need to know about various breast cancer treatments could be done in groups.The doctors and nurses could group newbies about to have lumpectomies and newbies planning mastectomies, and newbies planning reconstruction. They could group folks who have just had surgery by cancer type and see those who probably just need hormone treatments in one group and those who need chemo in another. Groups would make it so that the doctor could go over side effects and statistics more efficiently. It would also help patients see how to cope with the problems of cancer in a supportive atmosphere. A medical social worker or nurse or nurse practioner could run the groups and let the doctors do breast exams, read tests, and order meds individually. (No, I'm not into group breast exams!!!) But think of the possibilities. Did we each need to hear the side effects of tamoxifen in our own private 15 minute lecture? What if someone else gave us the lecture and time to discuss it and the doctor just gave us a 10 minute exam? Would that really be less for us or maybe more? Wouldn't you have liked to talk to another survivor if you had the chance?
  • Unknown
    Unknown
    #5
    cabbott said:

    I had a bit of a crazy idea, but sometimes off the wall ideas have some merit. Think about this: how about group meetings with breast cancer folks? I've heard that doctors working with diabetics have sometimes been able to meet with more folks and get more done by combining like patients and work with them in groups rather than meet with them individually. Much of the stuff we need to know about various breast cancer treatments could be done in groups.The doctors and nurses could group newbies about to have lumpectomies and newbies planning mastectomies, and newbies planning reconstruction. They could group folks who have just had surgery by cancer type and see those who probably just need hormone treatments in one group and those who need chemo in another. Groups would make it so that the doctor could go over side effects and statistics more efficiently. It would also help patients see how to cope with the problems of cancer in a supportive atmosphere. A medical social worker or nurse or nurse practioner could run the groups and let the doctors do breast exams, read tests, and order meds individually. (No, I'm not into group breast exams!!!) But think of the possibilities. Did we each need to hear the side effects of tamoxifen in our own private 15 minute lecture? What if someone else gave us the lecture and time to discuss it and the doctor just gave us a 10 minute exam? Would that really be less for us or maybe more? Wouldn't you have liked to talk to another survivor if you had the chance?

    Great idea! And then, when there are a lot of us listening, the doc could take the time to explain it really well, thoroughly. I did have a group chemo initiation, but unfortunately the nurse giving it was not good.
    And yes, sitting in a group of sisters would help the medicine go down.
    love and lets keep thinking!
    Joyce
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #6
    For long term survivors and not newly diagnosed, I think our primary can look after initiating the tests and blood work. I personally don't find them very knowledgeable about cancer and it's tx's and long term effects and followup, but I know when I need to do this or that and will let her know. If anything comes up that concerns me/her then I can make an app't with the onc.
  • RE
    RE Member Posts: 4,591 Member
    #7
    Well posted concern Kathi. In my opinion the farther we get from our diagnosis date the more likely it is that it will be our primary doc who cares for us. For me this has been an issue. I was sick and went back for 2 months being told I had flu, etc. I had to make a stubborn stance that they were wrong and cancer needed to be looked for. Once I clearly voiced my needs they moved on it and found that indeed it had returned after some 8 years. For me I feel ultimately it falls on my shoulders to push the buttons needed to get the tests I need. Hopefully they will come up with that cure we are all yearning for.

    Rena
  • seof
    seof Member Posts: 819 Member
    #8
    I haven't gotten that far along as a survivor yet, but it is an excellent question. My Sister's primary missed her recurrence, though the symptoms were identical to the 1st. She had to make her own appointment with the Oncologist to confirm her suspicions. My husband's job is one that will likely mean continuing to move every few years, so I may not continue with the same team indefinitely anyway. I intend to stick with them to finish the current plan (finish chemo this month, then radiation, then reconstruction several months after that). I am thinking I will get all my records from the team I am currently being treated by, then, if and when we find we are moving, I will find out where and try to get references from my current team in the new location. I guess I'm saying that I expect to be my own best advocate, though I do like the idea of group info, if the person giving the info is good and good at explaining things.

    Good Question!!! Best wishes, seof

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