Introducing myself

I had a receptor positive breast cancer diagnosed 4½ years ago and had been fine. Then mammogram in February showed a new cancer in the same breast.  Was told it was receptor positive and given a stronger aromatase inhibitor to get me through until Covid situation improved and I could have surgery. Two months later was told is been given the wrong results and new cancer was receptor negative. 
had urgent mastectomy done and started chemo last Monday.  
Was due to have docetaxel and cyclophosphamide at 80% of dose because of my age (72). However, consultant reviewed notes and changed docetaxel to abraxane, but went on leave without sending over new prescription.  Eventually drugs were prescribed and I had first chemo. 
Very ill the bext day with vomiting and dehydration so admitted. Discovered I'd actually been given 100% of the dose of cyclophosphamide instead if 80%.
camr home, improving then developed tachycardia. If it weren't for the fact a friend is a retired oncologist and my GP is wonderful I wonder what would have happened. 
On the point if declining further chemo. I am seriously allergic to several antibiotics and the appalling treatment I received in A&E this week has left me terrified of needing iv antibiotics. I already have coronary heart disease and the tachycardia is very worrying. 
 

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    Hi Cathy,

    Welcome to our forum. It sounds as if you have had some very shabby treatment from your hospital. I am the same age as you and can imagine just how worried you were about the tachycardia. It is fortunate that your friend is a retired oncologist and that you have a wonderful GP, but is this enough?

    I have had 2 bouts of breast cancer in the past 11 years. I received very poor treatment for the first year, but was then transferred to another surgeon in a different hospital. He was willing to take over my care and, I've not looked back since. Perhaps this is what you need to do?

    Attending this new hospital adds 3 hours on to my journey, whereas my original hospital was only 10 minutes away from home, but it is still well worth the extra journey. I have discovered just how important it is to have faith in your care team. Second time around I had a double mastectomy and have been doing well since then.

    Do please let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

  • Thanks for your support!  I used to work at the hospital where I'm being treated and it was first class but seems things have changed for the worse since I retired.  Front line clinical staff have all been fine, apart from nurse in A&E but the admin side has been appalling. 
    Once I'm over this round of chemo I'll reassess whether further chemo seems appropriate as the risks are beginning to outweigh the benefits. 
    I was given Nivestim to reduce the risk of neutropenic sepsis and have my 4th injection yesterday- and have spent the night in agony with back pain which pain killers have barely touched.  Waiting for the unit to ring me back with advice about pain relief.  I need the drug as I have multiple antibiotic allergies and needing iv antibiotics for sepsis is a big risk.  
    I knew chemo wasn't going to be a walk in the park but this seems a bit much. 

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    HI Cathy,

    You're at the sharp end of hospital treatment now! I think that nearly all hospital treatment has declined over the past few years and, will possibly decline even further as a result of the current pandemic.

    I'm sorry to hear that you had so much pain last night and, hope that the unit will phone you back soon and suggest something that is effective. Can you arrange to see your oncologist again to discuss the problems that you're having with chemo? Perhaps another type of chemo wouldn't cause so many problems? Itmightalso be helpful for you to ask what percentage benefit you're likely to get with chemo.Having multiple antibiotic allergies must be a big concern for you too.

    I hope that you reach a decision that is the right one for you.

    Kind regards,

    Jolamine xx