No mans land

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Diagnosed her2 triple positive 2020 21 lymph nodes cancer  after surgury in April 2021 so stopped herceptin put on rdm1 august started 20 rounds radiotherapy to include spuraclavicular as her2 spread there ..in October fin radiotherapy by nov 14 only bad reaction in collarbone just itchy a bit. Now they told me metastatic bc but had ct etc two weeks ago and said seems clear but oncologist felt hard mass on my supraclabicular area couldn’t r wouldn’t give me straight ans .I’ve been running to loo and sore back and odd headache but thinking just reaction to TDM1 and radiotherapy just scarring why do I have to guess can they not tell for sure what mass is after ct contrast was looking forward to a breather from worry now don’t know whether I’m fine r what can’t find anyone who had this spread type …first diagnosed stage 3c …advice really welcome r maybe I’m just paranoid at this stage 

  • Hi there,  I'm sorry to hear that you're having such a hard time, and I think that feeling paranoid is something we all  can relate to. Could they give to a nuclear bone scan to check? It checks for spread in the bones by looking at faster growth which shows as hot spots,  and often picks up other areas like vital organs etc. too.   I had one after my mastectomy when a sentinel node was unexpectedly positive and my mastectomy area showed up like a bright rectangle! I think that in these covid times you might need to be a bit more pushy in getting answers from the team, who may be stretched thinly.

    Fingers crossed it's ok and just scaring.  xxx

    “Remember to look up at the stars and not down at your feet.  Stephen Hawking,
  • Thanks so much I do feel it definitely a situation of stretched staff etc but they r booking an mri of spine and ct of brain so when is a good question prob in jan but TDM1 being a right pain at min bladder went nuts a couple hours after infusion ..my fifth loo every time I drink r move just feel like stopping it I just felt like oncologist thought I just a whiner which I most definitely am not as two young children to care for and an extra child aka my husband and three grown up children ..I’m 49 but lovely family really just ever get that feeling from them u looking for issues etc anyway I hope u doing well and have a good Christmas I was so good last year but this year a cheeky glass r two and no apologies haha