Diagnosis today

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Hi, I had my diagnosis today, grade 3 aggressive so full mastectomy & lymph node strip on 11 June followed by chemo & radio.  Naturally my head is spinning but I have a lovely support network so am going to knuckle down to the practicalities once I have head space.  

Understand it is going to be a rough old journey, but only thing that stuck in my head was the consultant advising ‘one in ten chance of permanent arm swelling’ Is this correct? 

Lovely to meet you all over the forthcoming months Slight smile

  • FormerMember
    FormerMember

    Hi  can i first welcome you to the community none of us want to be a member of but under the circumstances its the best community to be part of.

    Are you having all your lymph nodes removed? I had a mastectomy in April and have had 4 lymph nodes removed all together. I was given exercises but the physio to start as soon as i could after the op, they were to keep movement in my arm and also so prevent swelling. I was told there was a chance i could end up with lymphedema but so far so good. 

    I guess its the luck of the draw whether it will happen or not. Try to think of it this way, it might not happen, so why worry about something that may never happen, worry about it IF it does xxx

    It sounds like you're coping really well but please keep talking to us, rant, cry and scream and on occasions we have been known to laugh. 

    Best Wishes 

  • Hi Thescriptfan, Were they from the sentinel sampling (with an injection into the breast of a radioactive liquid and/or blue dye?) If the nodes look clear they do that and you have between 1 and 4 sentinel nodes.   Only if there's obviously something on the nodes on the u/s do they take more. I was told a clearance would lead to about 30% of women getting lymphodema. More likely for those overweight or smokers, and others slightly less at risk. I've had my mastectomy and they found one positive node so I'll be having another surgery (2.5 hours again) to remove them all around the end of the month:(  I wish they'd seen it so it could have all have been over,  without cancer still in my nodes an extra month. 

    It's a terrible shock to be diagnosed, and it's early days for you.  It sounds like they are moving quickly which is good though:) Good luck,  and let its know how things go.  X

    “Remember to look up at the stars and not down at your feet.  Stephen Hawking,
  • Hi - I have had mastectomy and lymph nodes removed and was warned of swelling. Nearly a year on, I have no issues but have slightly reduced movement and, due to generally doing little exercise during treatment, have noticed I am much weaker....I got advice from physio on this website about what exercises to do to improve overall strength and movement. I still feel tightness across my pectoral muscle when I move arm, my armpit is numb and I have lost some sensation on the back of my arms but nothing that bothers me day to day.....although it weird that you can’t feel when you have sprayed deodorant! 

    Good luck!

    GGx
  • Hi I had 3 lymph nodes removed when I had my first WLE but they were thankfully ok. I was warned about the risk of lymphodema and that was what played on my mind! Felt I could cope with everything else but not the big fat arm (there was a dinner lady in my primary school with the same condition) and I think that was what I was concerned about although it was 40 years ago and things have come on no end since then. Think it’s important to do the exercises they show you, no heavy lifting etc, and generally just follow the guidelines! I’ve had no issues at all and have full range of movement even after mx and reconstruction xx

  • FormerMember
    FormerMember in reply to Londonmumof2

    Hiya not early days for me (see profile) i was diagnosed a year ago and was given the all clear last Tuesday. Long road but got there in the end and well worth all the crap to know its all gone. 

    I had 3 lymph nodes removed with my first lumpectomy, when they did the radioactive dye thing, but they were all clear. I'd had chemotherapy last year that cleared it. Then when i eventually had a mastectomy they removed another lymph nodes that had developed cancer in it.

    But all gone now, still doing exercises and had no problems with my arm.