Phesgo treatment // mastectomy advice

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Hello everyone,

I was diagnosed with primary BC (ER & HER2 positive) in August and finished 6 rounds of neoadjuvant chemo in Dec. I'm waiting for a mastectomy end of Jan but just discovered my oncologist has stopped my phesgo (herceptin) injections until I meet with him in February (which is only over the phone anyway). I have no idea why, no one told me. I don't understand why such an important part of my treatment would be stopped for 2 months? 

I'm guessing it's until they have the pathology report from surgery? But why stop the treatment just to put me back on it? I'm starting to panic now that my tumour can start growing again without that part of my treatment. Has anyone else had this stopped? 

Also, I've been pretending I'm fine with a mastectomy, but now that it's rapidly approaching I'm getting worried. Any advice would be really helpful. How long until you were up and about ... I have two young kids so worried about parenting. How manageable was the pain? 

Nothing has been mentioned about reconstruction yet, assuming I'm getting radiotherapy. How long did you wait for radiotherapy after surgery?

Thanks so much in advance. Everything still feels so unknown and it really makes me worried.

LX

  • Hi, I just noticed your post hasn't had any replies yet. Have you talked to your breast care nurse, or perhaps tried to get an earlier appointment with the oncologist. Perhaps this would help put your mind at ease.

    I had my surgery in early August and started radiotherapy in October, there was a bit of a delay as a I had a seroma and this needed to reduce in size so I had to wait for the swelling to go,down.  Best wishes 

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  • Hi I was on Docetaxel and Phesgo but after 2 rounds of Docetaxel I was rushed to hospital very poorly my magnesium was 0.4 couldnt keep anything in my system after 10 days in hospital they stopped the Docetaxel and just have Phesgo. I'm down for mastectomy  on 10th Feb.My next Phesgo is tomorrow and I will also be put on Letrozole(Femara), I would ask your doctor why they have stopped your Phesgo though. All the best.

  • Hi there, 

    I can’t quite relate to having to care for children as I am 22 with no responsibilities but I am about 12 days post mastectomy. I was up and about waking around the house the day after surgery. I’m not sure if this is the same for every mastectomy but I had the nerve removed so pain is minimal - as in paracetamol is enough for me. Seromas (fluid build up) is common but completely harmless and will go away on its own. These can be uncomfortable and I find most uncomfortable when I turn in my sleep, not unbearable though. General sitting on the sofa etc I don’t tend to notice. Day to day activities have been fine for me, showering (though I had to get someone to dry my hair), getting dressed and cooking have all been fine. 

    i hope everything goes smoothly for you - a heart shaped pillow under the armpit is also good for comfort ! X