Phesgo // 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 (for HER2 ) 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? And why this wasnt clear from the start.

My BC nurse has discovered it's because the NHS only funds 6 rounds of phesgo if you do not have lymph node involvement. My biopsy on nodes was negative back in July/August but I've been told until they take out sentinel nodes no one can say for certain its negative.

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.

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

Lorraine058 over 2 years ago

Hi pollylop, i cannot comment on the first part of your story as my journey was different fron yours. However, i can comment on the mastecomy part (i have updated my profile so if you click on my name you can see it if you choose) i understand you feel the way you do, im the worlds worst patient! I have had 2 ops one WLE followed by left side mastectomy a month later with ANC (which was in Nov) i was a day case sent home with x2 drains and visits from the district nurse daily to service them. Pain was fine i only took paracetamol. I was up and about walking the next day was surprisingly good how quick you are up and about, drains are out a wk later they recommend you exercising as soon as your able (they will go through this with you)

But by December i was driving again, my only issue was i had a swelling in my arm 3 days after the op which caused me significant pain and prevented me doing the exercises along with cording i had some amitriptyline from docs about 2 wks after my op but i weened myself off them by mid Dec, my arm is much btr but not 100% other than that it was pretty good (if thats possible) i appreciate we are all individuals and we all have different experiences. But i know the anticipation of surgery along with waiting for results is really stressful. Hope this helps.

A couple of suggestions also if this helps, front opening/post surgery bras (i happened to stumble upon some in Primark very reasonably priced made in association with Breast cancer, i still wear these now they are great) they also have some in M♤S which are really good, front opening tops/ pyjamas. The hospital should give you a drain bag for your drains, i did also purchase a v shape pillow or heart shaped pillow/mastecomy pillow but i have to say i didnt really use it. What i did use was a normal pillow for the car to use with seatbelt.

Hope thats ok, hope all goes wellx

Trentender over 2 years ago

Hello pollypop. I can only help with mastectomy and node clearance - had this in July . Once the anaesthetic hit, that was it. Back on the ward later that day. Lots of tea , lovely nurses - reasonable sleep then checked out next morning- quick blood test, visit from surgeon and home with one drain in a bag hanging around my neck. No pain - bit restricted by drain - have to remember it’s there, not try to walk off without it. Nothing to worry about. Xx

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Phesgo // mastectomy advice