Frustrated with my Doctors

Attygirl
Attygirl Member Posts: 121
in Breast Cancer #1
Hello,
I am newly diagnosed with Stage 1 Invasive Ductal Carcinoma, ER/PR +, Her2 -. Had a lumpectomy 4 weeks ago. Waiting for my oncotype score in order to determine need for chemo or not. Someone on my team screwed up and didn't send my sample to the lab right after surgery. So now I am in a holding pattern waiting weeks longer than I should have to for results. Drs don't want to start radiation until they know whether I will need chemo or not, as they want to do the chemo first if score merits it. Some days I am calm and take the delay in stride, pretty much how I have approached this diagnosis since the start. But today I am very frustrated and upset.
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Comments

  • mwallace1325
    mwallace1325 Member Posts: 806
    #2
    So sorry
    So sorry that there was a mix up. Waiting is always one of the awful parts of this whole thing. It may make you feel better to know that there is a healing time between a lumpectomy and the start of chemo, if needed. My onc scheduled my first chemo after three weeks and then had to let me know it had to be pushed back one week. I still feel sorry for the clinical trial nurse that delivered the message to me.

    Will keep you in prayer that chemo isn't needed and that no one causes any further delays.

    marge
  • Attygirl
    Attygirl Member Posts: 121
    #3
    mwallace1325 said:

    So sorry
    So sorry that there was a mix up. Waiting is always one of the awful parts of this whole thing. It may make you feel better to know that there is a healing time between a lumpectomy and the start of chemo, if needed. My onc scheduled my first chemo after three weeks and then had to let me know it had to be pushed back one week. I still feel sorry for the clinical trial nurse that delivered the message to me.

    Will keep you in prayer that chemo isn't needed and that no one causes any further delays.

    marge

    Thanks, Marge
    I appreciate knowing that delays happen...and I appreciate the prayers!
  • ladyg
    ladyg Member Posts: 1,577
    #4
    So sorry
    to hear that you are having to wait for the next step. Time passes so slowly when this happens. I am hoping your results are good and you can skip the chemo and go right to rads. Either way I will keep you in my thoughts as you continue on your journey.

    Hugs,
    Georgia
  • sdukowitz
    sdukowitz Member Posts: 250
    #5
    Waiting is always the worst
    Waiting is always the worst part Ive been there after my lumpectomy and never did have the Oncotype done ...... had to wait longer for the estrogen pos or neg results too .....praying that you will know soon! Hang in there! Sue D
  • rallendorfer
    rallendorfer Member Posts: 244
    #6
    First, welcome to a fantastic support site
    You will get valuable advise here from the sisters in pink. I am hoping the chemo will not be needed for you...it soooo stinks. Maybe you should call your doctor for a prescription of Ativan to help with the anxiety. Many of the sister in pink have taken it and it does take the edge off. Also the call would alert them that the mistake has to be dealt with as a priority! We are all pulling for you. Let us know how this progresses, ok?

    Rebecca
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #7
    so frustrating...sorry to
    so frustrating...sorry to hear of your issues...i'll check back for up



    denise
  • salls41
    salls41 Member Posts: 340
    #8
    It's tough
    Waiting is so hard. I was dx in November 2011 and could not start any treatment until January 2012 because of Insurance and Holidays. I was so frustrated! Hang in there and vent to this great group when the need arises!!
    Prayers for you!
    Sandy
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #9
    salls41 said:

    It's tough
    Waiting is so hard. I was dx in November 2011 and could not start any treatment until January 2012 because of Insurance and Holidays. I was so frustrated! Hang in there and vent to this great group when the need arises!!
    Prayers for you!
    Sandy

    "They" just don't get as uptight as we do!
    I remember being a basket case worrying about getting started on chemo, but no one else did (or at least didn't seem to). I didn't start chemo for 2 1/2 months after my surgery because I had a hysterectomy to deal with in between. I was so concerned that too much time would have gone by but no one else seemed the least bit concerned. I do believe there is an optimal time period (? within 12 weeks) between surgery and chemo and/or radiation, but don't know where I'm getting this number. While it's stressful waiting, try to remember this: if they were rushing to get you started that's more to worry about than taking the extra time to make sure you need it.

    Hugs,
    Suzanne
  • Attygirl
    Attygirl Member Posts: 121
    #10
    ladyg said:

    So sorry
    to hear that you are having to wait for the next step. Time passes so slowly when this happens. I am hoping your results are good and you can skip the chemo and go right to rads. Either way I will keep you in my thoughts as you continue on your journey.

    Hugs,
    Georgia

    Thanks, Georgia
    Usually time flies for me...not any more!
  • Attygirl
    Attygirl Member Posts: 121
    #11
    sdukowitz said:

    Waiting is always the worst
    Waiting is always the worst part Ive been there after my lumpectomy and never did have the Oncotype done ...... had to wait longer for the estrogen pos or neg results too .....praying that you will know soon! Hang in there! Sue D

    Thanks, Sue D
    You know what I'm going through...appreciate the prayer!
  • Attygirl
    Attygirl Member Posts: 121
    #12
    rallendorfer said:

    First, welcome to a fantastic support site
    You will get valuable advise here from the sisters in pink. I am hoping the chemo will not be needed for you...it soooo stinks. Maybe you should call your doctor for a prescription of Ativan to help with the anxiety. Many of the sister in pink have taken it and it does take the edge off. Also the call would alert them that the mistake has to be dealt with as a priority! We are all pulling for you. Let us know how this progresses, ok?

    Rebecca

    Great Advice, Rebecca!
    I never thought to take something for the anxiety. But I stayed home in my bed today because I just couldn't get it together.
    You are right about this site...the support is fantastic, indeed! Thanks!
  • Attygirl
    Attygirl Member Posts: 121
    #13
    disneyfan2008 said:

    so frustrating...sorry to
    so frustrating...sorry to hear of your issues...i'll check back for up



    denise

    Thanks, Denise
    Hope I have a good update SOON!
  • Attygirl
    Attygirl Member Posts: 121
    #14
    salls41 said:

    It's tough
    Waiting is so hard. I was dx in November 2011 and could not start any treatment until January 2012 because of Insurance and Holidays. I was so frustrated! Hang in there and vent to this great group when the need arises!!
    Prayers for you!
    Sandy

    Tough, indeed, Sandy
    You know about some waiting, don't you! That must have been so tough. Were you able to actually enjoy the holidays? Hope so...
    Thanks for the prayers.
  • Attygirl
    Attygirl Member Posts: 121
    #15
    Double Whammy said:

    "They" just don't get as uptight as we do!
    I remember being a basket case worrying about getting started on chemo, but no one else did (or at least didn't seem to). I didn't start chemo for 2 1/2 months after my surgery because I had a hysterectomy to deal with in between. I was so concerned that too much time would have gone by but no one else seemed the least bit concerned. I do believe there is an optimal time period (? within 12 weeks) between surgery and chemo and/or radiation, but don't know where I'm getting this number. While it's stressful waiting, try to remember this: if they were rushing to get you started that's more to worry about than taking the extra time to make sure you need it.

    Hugs,
    Suzanne

    Oh Suzanne
    I saw a bit of what you were going through on another thread. Thank you so much for taking the time to reach out to me. You are in inspiration. Everyone here is so supportive and kind and encouraging. I am a generally positive person with an optimistic outlook, but that part of me is definitely being challenged this week!
    Thank you all for sharing. I'm going to call the social worker now and ask about that Atvian.
  • crselby
    crselby Member Posts: 441 Member
    #16
    Attygirl said:

    Great Advice, Rebecca!
    I never thought to take something for the anxiety. But I stayed home in my bed today because I just couldn't get it together.
    You are right about this site...the support is fantastic, indeed! Thanks!

    anxiety + stress = lower immune system response
    I am sorry you have these frustrations at a time when fast answers and actions would make you feel better. Like you, I usually am pretty laid back when it comes to having answers. But during my cancer journey there were so many screw ups in getting the tests needed and getting my records to the correct people and in a timely fashion that I started carrying ALL results and images with me to each appt and even to the hospital on the day of surgery. Good thing I did... I was filled with anxiety and had a hard time staying asleep at night. I only took Ativan once, just prior to the MRI biopsies because the surgeon described it as "quite a procedure."

    I am 3 years past diagnosis and the lumpectomy and radiation treatments, so I see this from a different perspective.

    About a year after my diagnosis I started having failing immune system issues where usually benign viral infections could not be controlled. I started using the blender to mix green drinks instead of the berry drinks I had been having for breakfast AND I started focusing my thoughts in a positive direction, sometimes through guided meditations on my MP3 player, before bed and upon rising.

    I can happily report that those infections never got worse and are now gone!!!

    So please do what you have to to reduce your anxiety while you harass those people to get moving ASAP !! You don't need any more health problems piled on at a time like this. Be your own advocate (or get someone to be your advocate) toward maintaining the good health that you DO have. Good luck on your journey.
    ~~Connie~~
  • MsGebby
    MsGebby Member Posts: 659
    #17
    It's not easy having to
    It's not easy having to wait. Trust me, I KNOW. Been there done that and been there again and doing it again. I believe Nancy mentioned a 3 month window to get things rolling. My docs said that too. I had a lumpectomy in September 2011 and re incision November 2011. Radiation treatments began in mind January. I did not want chemo. My doc wanted to get me started the very first time I met with her. My dx is Stage IIa, IDC, papillary and cribriform invasive cancer, microcalcifications, ER/PR+, Her2-. I was very concerned that things took so long to get moving.

    Try to focus on something else while waiting for results. I know there was a mess up and I know waiting is stressful. I think you should put some pressure on everyone to get off their **** and get those results. It is something I have had to learn myself. My husband always says "Make them do their jobs!" Well said if you ask me.

    Be your own advocate. Be proactive. You may not want to hear what they say (or quite the opposite) but at least you will know something.

    Hugs and strength going your way.

    Mary
  • Attygirl
    Attygirl Member Posts: 121
    #18
    crselby said:

    anxiety + stress = lower immune system response
    I am sorry you have these frustrations at a time when fast answers and actions would make you feel better. Like you, I usually am pretty laid back when it comes to having answers. But during my cancer journey there were so many screw ups in getting the tests needed and getting my records to the correct people and in a timely fashion that I started carrying ALL results and images with me to each appt and even to the hospital on the day of surgery. Good thing I did... I was filled with anxiety and had a hard time staying asleep at night. I only took Ativan once, just prior to the MRI biopsies because the surgeon described it as "quite a procedure."

    I am 3 years past diagnosis and the lumpectomy and radiation treatments, so I see this from a different perspective.

    About a year after my diagnosis I started having failing immune system issues where usually benign viral infections could not be controlled. I started using the blender to mix green drinks instead of the berry drinks I had been having for breakfast AND I started focusing my thoughts in a positive direction, sometimes through guided meditations on my MP3 player, before bed and upon rising.

    I can happily report that those infections never got worse and are now gone!!!

    So please do what you have to to reduce your anxiety while you harass those people to get moving ASAP !! You don't need any more health problems piled on at a time like this. Be your own advocate (or get someone to be your advocate) toward maintaining the good health that you DO have. Good luck on your journey.
    ~~Connie~~

    Wonderful perspective, Crselby!
    Very helpful and encouraging! Green drinks and meditation sounds good! Thank you!
  • Attygirl
    Attygirl Member Posts: 121
    #19
    MsGebby said:

    It's not easy having to
    It's not easy having to wait. Trust me, I KNOW. Been there done that and been there again and doing it again. I believe Nancy mentioned a 3 month window to get things rolling. My docs said that too. I had a lumpectomy in September 2011 and re incision November 2011. Radiation treatments began in mind January. I did not want chemo. My doc wanted to get me started the very first time I met with her. My dx is Stage IIa, IDC, papillary and cribriform invasive cancer, microcalcifications, ER/PR+, Her2-. I was very concerned that things took so long to get moving.

    Try to focus on something else while waiting for results. I know there was a mess up and I know waiting is stressful. I think you should put some pressure on everyone to get off their **** and get those results. It is something I have had to learn myself. My husband always says "Make them do their jobs!" Well said if you ask me.

    Be your own advocate. Be proactive. You may not want to hear what they say (or quite the opposite) but at least you will know something.

    Hugs and strength going your way.

    Mary

    Yes! Focus on something else!
    Trying to do that now...relaxing in my backyard, but here I am online! LOL
    I'll keep trying! Thanks, MsGebby/Mary
  • jnl
    jnl Member Posts: 3,869 Member
    #20
    mwallace1325 said:

    So sorry
    So sorry that there was a mix up. Waiting is always one of the awful parts of this whole thing. It may make you feel better to know that there is a healing time between a lumpectomy and the start of chemo, if needed. My onc scheduled my first chemo after three weeks and then had to let me know it had to be pushed back one week. I still feel sorry for the clinical trial nurse that delivered the message to me.

    Will keep you in prayer that chemo isn't needed and that no one causes any further delays.

    marge

    I would be frustrated and
    I would be frustrated and upset also, but, mistakes do happen unfortunately. Having to wait to start your treatment is hard, I know, but, hopefully soon, your doctors will have all of the information they need to get you going.

    Good luck to you in your treatments.

    Hugs, Leeza
  • Bar_B
    Bar_B Member Posts: 27
    #21
    Understanding...
    You have a tough situation. Hang in there. In my humble opinion, the waiting is one of the most difficult parts of cancer. I don't have much patience and everyone kept telling me to be patient - but it's my LIFE!!- I want to scream at them.

    My experiences were all in November and December... all the staff taking time off for holidays, no one knowing what the other person had done... human error. Prayer helped me often, even praying for someone to get a kick in the b--- to get stuff done that wasn't happening as fast as I wanted it to happen.

    I don't have any great words of wisdom, just hang in there... keep busy. Volunteer somewhere for an hour or so... helps keep my mind off my troubles and is productive.

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