Forum Discussion

Sam09's avatar
Sam09
Member
9 years ago

Sorry what did you say Doctor- please say again!

Those of you who have followed my posts will know I am anti drugs and yes in my circumstances this makes life a little difficult as I need them to live. Yesterday in a jovial mood due to my recent test results I saw my doctor before the infusion. Somehow the conversation turned to me saying when I stop treatment and then came the bombshell comment. A comment I am still reeling from. I am sorry finish treatment - you will never finish treatment whilst it is working.  This was a OMG moment for me and a comment that cost me my sleep all night last night. I am shocked to say the least and I feel numb. Have herceptin and perjeta infusions for the rest of my life. I must be on a tight life line or I am sure who pays for this exremely expensive drugs for a long time.  So I feel numb really. How long now seems on my thoughts and also how dumb am I to believe my recent test results mean't I could one day be NDE but when I asked that she informed me no cure .I am so back to square one now... I feel like I did when first diagnosed ....... 

14 Replies

  • Oh @Sam09
    that is a horrible thought process for you to have been rolling around in your head all night. I hope you can gain some clarity and peace as you work thru this. 
    Hugs
    Alice 

  • Sam - it is a constant roller coaster for you, I am teary writing this as I can feel the hurt, my heart goes out to you!  I hope you don't spiral after your conversation with your doctor - yes you have every right to be cranky, peed off et cetera!  @nelliejs she referred to them as the 'you beaut' drugs - that is a positive! It would seem you are getting the best possible treatment. 

    Sam I am not in your predicament I know, but hopefully you can find a ray of sunshine within to help you get on with your everyday routine!  Wishing you many years of comfort and enjoyment ahead and remember when it is getting to you think of your favourite song and start singing!

    Take care and sending you a virtual hug xx<3
  • I can relate to what you are saying, Sam09. I was diagnosed with mets in the spine in April last year. Initial diagnosis was September 2012 (left breast and lymph nodes). Initial biopsy concluded I was Her2 negative however, after mastectomy, pathology stated there was enough evidence to say I was Her2 positive. Had chemo, mastectomy and radiation and one year of three weekly Herceptin. Chose to have other breast removed six months later to increase my chances of the cancer not returning. 
    When diagnosed last year with bone mets, my world changed forever. My oncologist told me right from the start that, now that the cancer had metastasized,  I would never be 'cured'. The aim is to keep it stable and she said that she had a number of patients she has been seeing for years who had an initial diagnosis similar to me. So, since April last year I have had radiation, chemo (Taxol), three weekely Herceptin/Perjeta infusions, monthly Xgeva injections and daily Letrozole tablet.  I have also been told that the Herceptin/ Perjeta will continue indefinitely.  They are regarded as the latest 'you beaut' drugs for Her2 breast cancer and my oncologist said that, if the cancer returns,  these drugs slow its growth significantly.  
    Like you, I'm still getting my head around having to live with this. I see myself as someone who lives with a chronic illness that needs to be managed (similar to someone living with diabetes, for example). I do not want to be defined by the cancer yet I know some people think this.  Also, things happen now and then which rock my boat. For example, yesterday I was looking at a cruise I would like to go on later in the year and then found that it will be very difficult for me to get any type of travel insurance because my cancer is metastatic. It's like I've entered another dimension in the world where there is no going back. 
    The only thing I try to hang on to is that I am grateful that treatments seem to be discovered all the time so that, the longer I can remain stable, the more chance I have to live for a long time. 
    Good luck with everything. 
  • How often do you have to have the Herceptin and Perjeta infusions? Weekly for the rest of your life is a bit tough. My dad has a couple of injections for his bone cancer and one is 6 weeks and the other is 3 months. He can sort of forget about it for a little while then. We all have worry when touched by cancer. Even those of us as survivors still have the life long worry of will it come back or not. At least you are being closely monitored so no rampant cancer run unbeknownst to you.