Looking for some help for aunt about to have mastectomy and node removal....

...but first, hello and hugs to old friends MK and Joyce, and special hello to Mia-whom-I-almost-met!  And anyone else who might remember me from the old iVillage bb a few years ago.

My own aunt (by marriage) recently underwent a lumpectomy and rads, and now my DH's lovely lovely aunt has been diagnosed with BC too.  She is having her op on the 26th (full mastectomy, I think the tumour is too large for anything else to be an option - though thankfully, all her scans are clear at this time).  She has been told that up to a third of her nodes on that side will be removed, but I can't get any more detailed info than that from her - she says she's squeamish and would rather not ask too many questions (opposite from me!).

Her main concerns now are practical - how to cope, what to wear, how much pain/discomfort to expect etc.  She will be in hospital for about five days, probably - allowed home when the drains run clear.  I imagine the drains will go with her - but she hasn't been told that: is that likely?  And if so, any tips for coping with them?

She is the last of dh's relatives from that generation (he's lost both parents, a brother, an uncle and an aunt in the last ten years - hard for me to imagine, my granny is still thriving at 99) and a darling, and I really want to support her as much as I can.  She has a husband with chronic heart disease to care for (to some extent) and is about 75 years old.

My thoughts turned to you lovely women straight away....can anyone help with tips, suggestions, their own experiences?

Love and best wishes, Claire xxx ps MK, you won't believe this (I didn't!), I'm expecting a second daughter in November

Hi Joyce!

And thanks so much...yes, we're still in shock, albeit the best sort.  Poor girls are going to have ancient parents, but at least our PM's wife had her last at the same age as me....has probably made it a touch more socially acceptable (if that matters)!  Here's hoping I have the same genes as my 99 yr old grandmother...

Thanks too for the tips re fanny pack (alias bumbag, as they're known here - think Aunt Helen would faint if I suggested a fanny pack, lol) excellent idea.  I bet she will have drains in on return home, I know my own aunt did after her lumpectomy.

Yes, we have the same protocol here with chemo for ultra large tumours before surgery...but I think hers is within accepted limits for surgery first, just not appropriate for lumpectomy for some reason.  I wish I knew why, but as I said...she is not the sort to ask many questions.

Hope alls well with you and yours, its nice to 'see' you again!

love, Claire xx

Hello Claire, and welcome back! Congratulations on expecting another baby! Yes, life is still full of blessings, even after bc.

However, I am so sorry about your aunts dx. I had 4 drains, 2 on each side, and yes they came home with me, and honestly, they were not fun. Just becuase they were cumbersome...ie. i had to wear a robe with pockets to put them in, and when I took my robe off to go to the bathroom I had to put the drains in my pants pockets, etc. Here's a tip... TRUST ME she does NOT want to get them caught on a kitchen drawer knob, IT HURTS LIKE H*LL ! Those drains are stitched in and will not come out without them removing the stitch, so if you pull on them, it WILL hurt. so beware of that. besides having to empty them and measure the fluid 3x a day, they were ok, didn't hurt when i wasn't messing with them. ;-) I can remember the day I got the last one out though (about 4 weeks post-op) I was SOOOOOOOOOO HAPPY!!! I remember whining and complaining on the ivillage board quite a bit about it. ;-)

goos luck, and many hugs- Stefanie

Hi, Claire, I don't have anything to add, lumpectomy gal here. But I did have a drain for a few weeks that I pinned up underneath an oversized shirt and went back to work. I have heard others recommend the "fanny pack" approach, and it sounds like a workable solution. I do remember you from the iVillage board (where I still post), and am glad to see you here. Sorry about your aunt. Hope she does well with surgery and treatment. Others who have had mastectomies seem to have not had much pain, so let's hope your aunt tolerates the surgery well. Of course, everyone has a different tolerance for pain. Congratulations on the pending birth of the baby girl. You must be so excited. Hugs, Lauri

Hi Claire

My Mum had a lumpectomy and node removal in March. Her drain fell out next day (some would say lucky!) and it was not a problem and has not been a problem. The other women on the ward did vary with their drains but most of them had them taken out before leaving hospital (5 days) so I am amazed that people seem to have had them in so long. Guess everyone is different.

The main thing with my Mum was her positivity. She made a very fast recovery because she was not going to let it beat her. She made sure that she stayed active socially (retired so did not have to return to work) and did things she enjoyed. She was very concious of doing the lymph fluid exercises so the lymph drained from her arm properly (can't remember what they are called). She had a course of radiotherapy and then went off on holiday. She has decided not to take chemo (they said she could decide, take it the stats on do and don't must have been similar). As for pain, again there was some but she kept a smiley face on it and didn't let it bother her.

It is very hard to support someone going through this but I just remembered to be normal and make her smile and laugh to help the healing. I am lucky that my Mum was so positive in herself. Make sure your Aunt uses the support people on the ward - some have previous patients that pop in and do massages, manicures etc.

Through my work I have a good insight into the NHS and knew that to get answers you have to fight a bit. Make sure that you push people to get the best treatment available, don't be afraid to ask. (I attended most of my Mum's appointments so I could ask questions that she may not think of).

Thanks some more.....this is all making more sense to me now!  Sounds as though in the UK we keep women in for five days (average) and therefore can take drains out much of the time before sending them home.  And in the US you let women home faster, but with drains attached!

Aunt Helen was very appreciative when I passed on tips, and has seen her team for pre-op ECG etc today....I haven't yet spoken to her, but know she was going to ask for more info on drains and what to expect.

I imagine once I know her next steps (radiotherapy, chemotherapy, or - unlikely - nothing) I will be back asking for more help!  Meantime, thank you again.......you're stars.

xxclaire

Hi MK, and thanks, and congratulations on your little great grand-daughter!  You don't sound nearly old enough to have one, but in any case your'e right - age irrelevent, daughter, greatgranddauhter, whatever, they're wonderful.

Love the drains on pillow story...will have to tell that one to Helen, she'll enjoy it too.  She had her op yetserday, and was up and chatting away by the afternoon - so far so good.  I suppose the next big step is getting the lab report back.

Hugs back to you from (amazingly) mostly sunny London!

xxClaire