frustrated

drea
drea Member Posts: 4
in Breast Cancer #1
hi everyone..i have recently been taken off of tamoxifen(for the third time) to detox since the medication is "to toxic for my body" and i am scared. I reported to my new oncology doc that i have been having headaches for the last three wks and that my arm and foot are swelling...the new doctor who quotes stats at me about percentages and likelyhood of reoccurance i felt my problems were dismissed and then at my last visit brought up my depression...i understand depression is a part of this but...i was so upset i started to cry and told him i feel as though i am going crazy...these symptoms i cannot find anyone else who feels these symptoms and to top it all off the swelling that the doc did not believe i had his nurses saw and measured my arms...i dont know if i should change oncology doctors again....just plain frustrated

Comments

  • camul
    camul Member Posts: 2,537
    #2
    I tried tamoxifen twice and
    I tried tamoxifen twice and it was toxic to my system also. Now I am on Evista and it seems to be working without the side effects. It also blocks estrogen. Maybe you can ask him about other options.
  • drea
    drea Member Posts: 4
    #3
    camul said:

    I tried tamoxifen twice and
    I tried tamoxifen twice and it was toxic to my system also. Now I am on Evista and it seems to be working without the side effects. It also blocks estrogen. Maybe you can ask him about other options.

    thank you...i will ask
    thank you...i will ask him....and let you know what he says and what stats he will quote ;0)
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #4
    drea said:

    thank you...i will ask
    thank you...i will ask him....and let you know what he says and what stats he will quote ;0)

    I'm so sorry Drea. I am not
    I'm so sorry Drea. I am not on tamox or any hormone therapy as it was just my choice. But, do ask your oncologist about another drug that you can take if you want to.

    I hope he can help you. Keep us updated.


    Sue :)
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #5
    I have been on tamoxifen
    I have been on tamoxifen since AUG 2008...taken off for 3mths due to post meno bleeding...no help so total hysterctomy in May..and put back on it right away


    Denise
  • poplolly
    poplolly Member Posts: 346
    #6
    The oncology doctor is very
    The oncology doctor is very important in our fight. You need someone you can trust to take you seriously when you have something to report. Incidentally, it is not in our mind. I see a psycharist who gives me my anti-depressant. He is always willing to talk with me about my fears. But, I only go to see him on about every 3 months unless I need more time. You probably need a guy like mine for issues dealing with depression. And people don't understand, nor to many doctors, how debilitating depression. People look at you and you look fine so they don't understand that you are hurting. You need a doctor who will understand. I guess my vote would be to try to find another doctor.

    Hugs

    Judy
  • mamolady
    mamolady Member Posts: 796 Member
    #7
    I totally agree with Judy.
    I totally agree with Judy. You need an oncologist that works with you, not dismisses your concerns. Your symptoms may or may not be related to depression.
    As to the depression, you should find someone to help you with that too. If you didn't have depression before diagnosis, it may be temporary but you don't want it to become debilitating. If it is ongoing for you, it's important not to ignore it. In any case, there are things you can do to treat it.
    All the best,
    Cindy
  • MusicMama
    MusicMama Member Posts: 11
    #8
    drea - I am soooo sorry!
    I
    drea - I am soooo sorry!

    I have been on tamoxifen for a year and it has been a nightmare! I also get the percentages speech and think I must just be a whimp. The side effects are so much worse than the initial problem! Hang in there...you are not alone!

    Diane
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #9
    MusicMama said:

    drea - I am soooo sorry!
    I
    drea - I am soooo sorry!

    I have been on tamoxifen for a year and it has been a nightmare! I also get the percentages speech and think I must just be a whimp. The side effects are so much worse than the initial problem! Hang in there...you are not alone!

    Diane

    Prayers and Strength to all you ... BRAVE WARRIORS
    suffering thru the side efforts of tamoxifen --- !!! I hate this damn cancer.

    Strength, Courage and Hope for a CURE.

    Vicki Sam
  • RE
    RE Member Posts: 4,591 Member
    #10
    Hmmm
    I would revisit your doctor and in a firm but kind manner take charge of the visit, even with tears you can get your point across. Tell him you feel he is being dismissive of your concerns and you would like evidence not percentages that you are okay. It is his job to convince you with knowledge and evidence that you are okay not with numbers. The swelling in your arm could be lymphedema and it should be addressed! If your doctor continues to not listen to you after you tell him you feel he is not listening to you then by all means seek out a second opinion it is not like you have a cold you are dealing with cancer and your concerns should be taken seriously!

    RE
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    #11
    RE said:

    Hmmm
    I would revisit your doctor and in a firm but kind manner take charge of the visit, even with tears you can get your point across. Tell him you feel he is being dismissive of your concerns and you would like evidence not percentages that you are okay. It is his job to convince you with knowledge and evidence that you are okay not with numbers. The swelling in your arm could be lymphedema and it should be addressed! If your doctor continues to not listen to you after you tell him you feel he is not listening to you then by all means seek out a second opinion it is not like you have a cold you are dealing with cancer and your concerns should be taken seriously!

    RE

    I've been on tamoxfin
    I've been on tamoxfin for 2 years Dec. Aside from some slight hair loss and I also seem shaky nothing else.I am stressed to the max but alot going on in my life.It is something I can handle but the cancer is the biggest thing that adds to it.

    My friend who is a 16 year survivor always told me "Your life is never the same after cancer".I now see what she has been saying.It goes for all of us.It is one disease you never want and one that will prey on your mind. Something we must live with.As my doctor said"You have the gene now.You can get it anyhere in your body". Even though mine was non invasive other cancers could develop.

    Talk to your oncologist and if you don't feel comfortable find another one.I am on my 4th doctor in the last almost 2 years so you can understand the stress I am going through.It's hurtful but I need to look after myself. Trust me all my life I've had mistakes made but never left the doctors but cancer can change a person like I mentioned.

    Lynn Smith
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #12
    VickiSam said:

    Prayers and Strength to all you ... BRAVE WARRIORS
    suffering thru the side efforts of tamoxifen --- !!! I hate this damn cancer.

    Strength, Courage and Hope for a CURE.

    Vicki Sam

    I can understand your
    I can understand your frustration. I pray that your side effects will get resolved and soon!


    Hugs,


    Jan
  • poplolly
    poplolly Member Posts: 346
    #13
    you are not crazu
    You aren't crazy. Don't let the doctor make you think you are. This is the most depressing disease I know of; If you aren't taking something to help with that, see a psycharist or counselor and get some help. I see a psycharist and it has helped me a lot. I was crying all the time and I felt miserable. I also couldn't sleep and when that happens you get fatigued and it makes everything worse. So my doc gave me something to help me sleep. I sound like a walking pharmacy, but I will do whatever it takes to get through this. And as hard as it is to do, you might be better off changing doctors if this one makes you feel like he isn't concerned about your welfare.

    I'll shut up now--all of this is my opinion

    hugs, Judy

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