Too late for Chemo?

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ColoradoGal
ColoradoGal Member Posts: 15
edited June 2014 in Stage III Breast Cancer

I posted this in the chemo forum and it was suggested that I post here.

I was diagnosed last November and had a double mastectomy and TRAM flap reconstruction at the end of January.  Unfortunately, both flaps died slowly which led to 3 additional surgeries and I have never closed up completely on both breasts. My surgeon wouldn't put the port in for chemo because I was still open and she was worried about infection.

Now, my plastic surgeon told me to get back in touch with my oncologist, even though I'm not completely closed.  When I called that office, the nurse told me that it may be too late for chemo and maybe I'll just be put on drugs!

WTF!  Now I'm all freaked out that I won't get chemo and the chances for cancer coming back is much greater.  I'm stage III, only one lymph node but some skin involvement.

Has anyone heard of this and how do I make it to my appointment with the oncologist on Monday without going crazy?

Many thanks

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Comments

  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited April 2012

    I think I would find another oncologist.

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  • Pessa
    Pessa Member Posts: 519
    edited April 2012

    Would not rely on what the nurse says.  Would want to hear what the doctor has to say.

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  • calamtykel
    calamtykel Member Posts: 1,187
    edited April 2012

    I know it's impossible not to worry until Monday, but take into consideration that this was a nurse, not a doctor,  and a really DUMB nurse in my opinion to say that to a patient!  How can she possibly say something like that liability-wise?  That's NOT her call to make at ALL! 

    I would say your doctor for sure should prescribe chemo - yes, the window if time is recommended 4-6 weeks, but it's not like you had your surgery last year.  Stage III (or any LN involvement stage) I would think they would throw the full arsenal at it!

     I'm sorry you've had to go through so much - it just isn't fair in my opinion that we have to go through having breast cancer and then have complications on top of it.  

    Also, as for the port,they can give you chemo through the arm.  I had my first two in the arm.  I know other women who had ALL their chemos in their arms and their veins have been totally fine.  I know that chemo can cause things not to heal well, so maybe that's why they're waiting, but I'd think if it's just the port issue, that they'd give it a try without it-- if that's all that's holding things up. 

    Hang in there!  Try to wait until you talk to the doctor himself before getting really upset. Is there a way you can page the doctor?

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  • bdavis
    bdavis Member Posts: 6,201
    edited April 2012

    Usually, the doctors like to start chemo 4-6 weeks post surgery (assuming surgery is uneventful). I agree you need to seek a second opinion. Even though 4-6 weeks is optimal, sometime is better than never, IMO...  I think the thinking is 1) remove the tumor 2) heal 3) blast it with chemo before anything more spreads making it more difficult to contain...

    I would insist on talking with the doctor... the nurse should not have said that. You couldn't have had chemo while healing. That would have been dangerous. My MO delayed starting tamoxifen until I had gotten past most of my surgery.... so lumpectomy in Dec 2010, chemo Jan-May 2011, MX w/recon July, stage II Nov 2011 and then tamoxifen Dec 2011.. better late than never,

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  • JadeGirl
    JadeGirl Member Posts: 35
    edited April 2012

    It sounds like everyone has given you some great advice and reasons why you should not freak out at this stage (as easy as that may sound!). 

    On top of this, it wouldn't hurt to start identifying someone suitable for a second opinion in case you want to pursue this path after your Monday appointment - it'll give you something else to focus on in the meantime and it will help knowing you have access to more options if you don't think your primary oncologist is responding the way they should.

    Regarding the port (I have had chemo via my arm and via a port), cross that bridge when you get to it given you don't know what is the recommended chemo treatment yet (i.e. ports tend to be recommended if numerous cycles are prescribed and/or you have difficult to access veins).  If it is, then I am sure your doctor will be able to recommend the best way forward depending on how you're healing.

    Hope this helps and let us know how you get on.  All the best!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2012

    Hi ColoradoGal - I'm sorry you've been thru so much.  I know the painfulness of Tram Flap surgery, and it's too bad it didn't work for you.  I had Free Tram Flap for one breast.  Recovery is tough.  You really need to be communicating with your oncologist. He may not even want to do a port.  Mine didn't.  Even at the Chemo treatment center where I went, the nurses were excellent about doing the IV for chemo infusion. First they put a warm pad on my arm prior to insterting a needle into my vein.  Talk to your onc. Let him be the judge on when you should begin chemo.  That nurse NEVER should have said that to you.  Shame on her.  Take care.

    image

    Barb

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  • ColoradoGal
    ColoradoGal Member Posts: 15
    edited April 2012

    Thanks for all your posts!

    I have very tiny veins and am considered a "hard stick".  That is why they told me to get a port and I agree.  I am a very hard stick and after 4 surgeries, I agree with them.

     However, hard stick or not, maybe using my veins is the best course.

    I'm glad some of you were as outraged by the nurse as I am.  I'm a wreck and will be calling the oncologist's office in the morning and insist on talking to her directly.

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  • bdavis
    bdavis Member Posts: 6,201
    edited April 2012

    The port goes up on your chest above your nipple by about 6 inches,,, so I am confused why they can't put it in?  I have heard of some women getting it in their upper arm too.

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  • Mardibra
    Mardibra Member Posts: 1,111
    edited April 2012

    I'm a hard stick too. I had the option of having my port placed in my arm or my chest. So, a port is still doable.

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  • ColoradoGal
    ColoradoGal Member Posts: 15
    edited April 2012

    They haven't been able to put the port in because I am still open on both breasts.  They are worried about infection.  I'm still open so I'm not sure they will put it in until I'm completely healed.

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  • karen1956
    karen1956 Member Posts: 6,503
    edited April 2012

    ColoradoGal...I agree with the others....talk to the oncologist....btw...where are you in Colorado?  I'm in denver and quite please with my medical oncologist.....he specializes in breast cancer......All the best to  you...

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited April 2012

    Holy cow.  Where does a nurse get off making a statement like that?  If you really like your doc make sure you tell them about this and if they don't take you seriously see who else you can go to. Are you in a rural part of CO or near Denver or another larger city?  There are numerous options in any large city and until you hear from the onc I wouldn't put one plug nickel in to what that nurse told you.  GRRRRR..............I hate hearing stuff like that.

    Keep us posted!

    Sharon 

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  • ColoradoGal
    ColoradoGal Member Posts: 15
    edited April 2012

    Karen, I'm in Denver and my oncologist was recommended by everyone but another name would be helpful.

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