Waiting for treatment to start

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Hi all

I haven't posted here before. I was recently diagnosed with tnbc as a recurrence of breast cancer from 13 years ago. The cancer is in my lymph nodes in my neck and my neck is huge and getting bigger every day.

I was supposed to start treatment last Wednesday but the result of my PDL1 marker wasn't back and so the oncologist delayed for a week. The result was supposed to be back this week and I am so scared that they will delay again if it isn't back.

It just feels like I am being left to die. I know I sound over dramatic but it feels like the outcome is likely poor so no one is rushing to start. I just want them to start the treatment and I don't know what to say to make them listen to my fears. 

Having said that the oncologist and nurse specialist have been great so far (the nurse in particular) but at this stage in the process I see every bit of no news as bad news.

Has anyone had similar?

X

  • Hi sorry you are having such a rough time and that you haven't had a response from anyone who has been through similar.  If you haven't already I would let your breast care nurse and your oncologist know how this is making you feel and then maybe they can put your mind at ease. 

    If they need your PDL1 marker results to come in before they can commence treatment they probably have a good reason that's in your best interest so it's best to speak to them and tell them everything you have posted above.

    I hope your results come in soon and you can start your treatment, I know how agonising the wait can be.

  • Hi GodWilling

    I finally started treatment yesterday. The PDL-1 marker was negative so the chemo regime was changed to oral chemo - capecitabine. I'm feeling OK at the moment and I hope the side effects stay away.

    Thanks for your support and I hope you keeping as well as you can.

    Xx

  • That's great news  I hope the side effects stay away for you too.  If you need to there is a chemo there in the Breast Cancer forum that might give you more support CLICK HERE

    xx

  • I too have recently been diagnosed with a recurrence of Triple negative after 13 years. Mine was picked up on a mammogram. I have just had a mastectomy and lymph node removal again and am waiting to find out the next stage. 
    It’s all very scary and depressing but I’m sure we’ll get through it. I know treatments are more sophisticated than in 2008 so we need to be positive. 

  • Hi 

    I'm so sorry that yours has recurred too. It's such a shock isn't it. I can honestly say I didn't give my first diagnosis a thought and sometimes I had to remind myself I had cancer. It is scary and depressing and unfortunately today has been a really low day for me. My husband took me for a walk on the beach with our dog and we trudged along on the pebbles and I tried to practise mindfulness and concentrate on the steps I was making to reach our turning point.

    Being in the fresh air helped. Have you found coping mechanisms? 

    Was yours triple negative the first time round? Mine wasn't. I had a lumpectomy and radiotherapy and i have recently finished 10 years of Tamoxifen. Unfortunately my cancer is metastatic in the lymph nodes in my neck. 

    When do you find out about next steps? I wish you strength and positivity. As someone said to me, dig deep - we are stronger than we think.

    Hugs to you xx