Mum with stage 2 invasive ductal breast cancer

Hi I am hoping for some kind of advice please

my mum was diagnosed with breast cancer in feb, which she then went in for a lumpectomy and node testing. We was positive in thinking the cancer was removed and that she would need radio therapy but we was wrong. After seeing the surgeon again this week for her results it's seems that could not get a clear margin and that there is cancer still in the breast and also they had taken 3 nodes which 2 of them has cancer in them. As you can imagine this was really hard for us to take in and understand so please Bare with me if my wording is incorrect. 
so after this I thought they would tell us the next step and  it would be planned out, but no... we have options and desisions to make and we don't no what the best thing is to do. So firstly they have said they can go back in abs try and get a clear margin again but could result into not being sucsessfull and more surgery needed, or they can remove the breast fully. The next desision to make was with the nodes, shall we remove them all abs have treatment or do the treatment first in hope that will clear it all with out removal. Also another option was to opt for a trial which we have already decided against. Can any body shed some sort of light on what avenue sounds best to go down abs I would love to hear of any story's similar. 
She is pretty much set on having the mastectomy but the node removal is something she is struggling with. She's worried if she has the treatment it won't be done for some time until she has recovered from her op, so will it if travrlled further. But then if she removes fully she's obviously really concerned about the lymphodemia. 
Any advice would be extremely appreciated. 
nany thanks xx 

  • Can only speak from my experience.  I've had a mastectomy but could equally have just had a lumpectomy and chose to live flat and have no intention of having a reconstruction. I didn't want to have the whole clear margin issue going on.  I just wanted one surgery and that was it dealt with.  I also have lymphoedema as I had 10 nodes removed, 3 had cancer. I wear a sleeve and glove to keep on top of swelling and only need to use it every third day.  Neither the surgery or lymphedema caused me any sleepless nights.  I've had more issues from long term side effects from chemo etc.  I'm not sure I could risk knowing that cancer can spread via the lymphatics and not just deal with it all at the one time.  However your mum knows her feelings best and there is no right or wrong way to go about it.  It's a very individual road to travel.

  • Thank you so much for replying. It seems as though the path you chosen is the same path she's leaning towards. She's just really struggling to make sense if it all abs at the same time make a decision on something that is potentially life saving. Would you say your lymphodema has changed the way your live your life? Are you still able to do things you enjoy doing? She's worried about getting it abs not being able to work still ect. Xx

  • I do everything I did before.  I did the exercises religiously and can put my arm above my head although not same upright position as other side.  Can put stuff on high shelves, drive, use keyboard, push shopping trolley, knit etc.  Overdoing the exercises isn't a great idea though and can set you back (I was a bit over zealous lol).  Fluid can gather in the "dead space" under the arm (a seroma).  Mine lasted 5 weeks and was drained regularly, didn't hurt at all.  I was left with quite a numb feeling around the axilla area and on underside of arm so don't use a razor there.  However after chemo I didn't really get regrowth there anymore.  Bonus !  No one can say how another person will be affected, I think it's a case of balancing what might be lost over what might be gained.  I'm never going to be the woman I was before my diagnosis but I'm a woman who is six feet above ground and that's a far better option than being six feet below.

  • You are exactly right and this is such a great way of putting things into perspective. I think right now she's just thinking why is this even happening to me why am I having to make these decisions. So how are things for you now? Are you now clear of cancer completely? Thank you so much for taking your time out to reply to me xx

  • I don't know what your mum's treatment plan is, but one thing took me a while to adjust to.  I felt so well before I found my lump, was able to do a half marathon just months before, yet the treatment that is potentially going to help get rid of the cancer is what makes you feel ill.  Especially chemo.  You bounce back though and even if still on treatment 2 and half years later as I am, you adjust to whatever side effects you are facing.  I focus on what the alternative could be.... I'm able to feel my side effects because I'm alive.  I could have no joint pain and be dead.  Hmmm.   Guess I'll learn to love my joint pain then

    This could be the bit where people have strong views, each to their own way of thinking.

    I never think of myself as cancer free.  The scans show no active cancer but since I had lymphatic spread then for me I prefer to think there's cells lying dormant or just too small to be seen on scan.  I'll never have the shock of recurrence because I've never thought it went away and was "cured" if that makes sense.  Once it's been discovered in a lymph node your risk of recurrence will never be zero.  They describe treatment as "with curative intent" depending on your cancer stage, I've always just taken that as they will give treatment to keep sleeping cells sleeping for as long as possible but they just don't know when they will wake up.  I'm very much a realist.  My cancer is grade 3, her2 and oestregen driven so I know there's so many risk levels in early and late recurrence for many years despite having had herceptin and now on neratinib, I'm also on letrozole for probably 10 years in total.  

    Life is great despite all that.  We're blessed to have the NHS and the people working in labs all over the world finding new drugs for the future.  

    You could spend endless days worrying but ever day you do is a day lost to just feeling happy for that one day.  Let's face it there's no one living to be 200.  When you're busy studying a cancer leaflet crossing the road, the bus coming towards you is more likely to kill you lol.