Hi Jo!
I had my drains out on day 6 before I went home. Had I gone home the nurse would’ve come (despite me protesting that I was quite capeable of emptying and measuring drainage and assessing my wound. i did demure at taking my drains out myself though; they kept offering me a uniform in hospital as I was quite busy. It wasn’t until the last day that I replied ‘no thanks - I have a navy blue one already at home’ ) I think it depends on your community services as to whether you do it yourself or not.
At home I have been dressed in my normal clothes. I’ve had a ‘big’ op so have had to go for the surgical bra - for you anything unwired that does’t press on sore bits should be ok. I have worn ‘secret support’ type cami tops with the best effect. I had wide excision of my nodes so have a 3 inch incision about 1.5 inches from my armpit. It’s sore, but I can dress ok and I’m doing my exercises as extending my arm up is difficult.
WLE & lumpectomy are the same thing - they take the lump and what they consider to be a good margin around it. Sometimes the histology comes back and says they didn’t get a good enough margin and a plan will be made around that. Sometimes the sentinel node comes back as affected and you need a wider clearance.
Re your plan, that will depend on the histology too and the grade of your IBC. Where I am, if under 50 all IBC is offered chemo. If it’s grade 3 you have chemo. Radiotherapy is also widely used ( infact everyone I know has had it!) If there is ‘spread’ you have a different chemo plan than if not. Clear as mud to me… Got good info on this site re; grades and also on BACUP site.
And it’s true. It’s not as bad as childbirth. And I actually found that quite easy too!!!
Love up!
Td x
Hey Archie!!!
Debi - I was so caught up in reading Jo’s post the other day I didn’t even notice you were back!!
How did it go? How are you? I’ve been asking other people if they’d seen you and here you are on my thread!!
I’m ok, but very battered. I look like I’ve been severely beaten around the back area, but it’s resolving slowly… May go for seroma aspiration tomorrow if I can summon up the energy!
Love Td xxx
Hi Td
That’s interesting - you a good source of knowledge regarding treatment.
I am presuming that IBC is Invasive breat cancer?? What is the norm if it is DCIS? Do you know anything about pagets?
(Sorry, I get my results on Wednesday, and have gone back to self-diagnosing and checking all my possibilities!! You know how it is!).
Glad you are feeling better each day.
I have just spoken to a lady who had a mast on the same day as me. We were able to cross check our pains and drains up until I left hospital (2 days earlier than her).
One thing we both have found not very nice, is that if we drink a v. cold drink or v. hot drink, I can feel it going down my left side where my breast used to be!
It’s wierd!
lisa
Evening Lisa!
Nice to hear from you today - I was thinking about you!
With my DCIS (and in Bristol) I would not have needed chemo as it is not invasive (the 'IN SITU ’ bit of DCIS - it doesn’t travel) but for me I would have needed rads as it was to the fromt on the breast and they couldn’t get a clear margin at the skin, so rads ‘just in case’. As it was, they found that other lump after MRI so I knew that I had invasive BC (IBC) before my mastectomy - so no suprises for me. Hence the chemo.
I don’t know anything about pagats. Every time I think of you I thin - I’ll look that up - I know it’s covered in one of the available leaflets on this site. Remember I told you that my Aunt had pagets 30 years ago? She’s moaning about the cold weather as she had to keep remoulding her implant - the same one that she had put in 30 years ago - as it goes hard in the cold!!
Hope you’re well and not regretting going back to work so early!!
Big love Td x
Hi Td
Yep, agree with the bruised and battered bit. Still have drains in 10 days post op (back ones, on free drainage) and still draining around 80 - 100 mls over a 24 hr period. One blocked overnight last night and was very uncomfortable this morning so I changed it and left the vacuum on for a while and it did the trick. I’m hoping it will be more comfortable once they are out. If I had the odd cylinder of Entonox hanging around the place, I would have ripped the buggers out by now!
I must admit, although uncomfortable, it is far better than i imagined it would be. In one of your messages you mention Bristol, where abouts are you and where did you have your treatment?
One thing I have noticed since i have been one these forums is that we all seem to be given different advice and treatment. My sister and cousin both had invasive ductal ca and were only offered WLE and RT. They both live in Sussex and had their treatment at Brighton hosp. A lady i spoke to the other day had her mast in Taunton last year and was now having LD recon in Exeter. She wasn’t even offered immediate recon. I’m glad i did. Better to get it all out of the way!
Debi x
Morning Debi
I’m at BRI with surgeon Miss Zoe Winters. Treatment does differ everywhere - I guess surgeons must use their own stats etc when making decisons and also do what they are most practiced in for best results. I agree about getting it all over and done with - I will still need implant in after rads - about this time next year, but will make do with half prosthesis until then - I still have my cleavage!!
Where are you???
love Td x
Morning girlies
Sorry to butt in but… I’m seeing my consultant tomorrow to find out if I need a full mast. or a lumpectomy and recon after having an MRI last week. I will have my surgery on Saturday. I cant beleive how well you all sound! I’m terrified and want it to happen but dont want it to happen at the same time if you know what I mean!
I need to go get jammies and stuff. What are MRSA jammies? I get the front opening ones but MRSA - don’t get that!
Is there anything I should buy from the chemist for when I come home? Any other tips?
Oh and how do I get through the next 3 days?
Sorry I’m rambling on!
Take care
Ali x
Ali x
Good Morning Td
Thank you so much for your very detailed info. Sorry I wanted to reply last night but OH & son were hogging the PC & laptop.
I feel sooooooooo much better for knowing what happens. Are you a nurse then? (Hope I don’t offend if dark blue means matron or something?) I only have tiny tits anyway and if they are going to hack bits off I don’t think I will need a bra so support camies probably a good idea. I hope my arm mobility will be OK as I don’t know how many nodes they are taking. I keep thinking of all the things I may not be able to do with it. Don’t know the grade yet - probably tell me after surgery - but they keep saying they have caught it early (probably tell everyone that). As it is a bit unusual (papillary - not ductal/lobular etc.) can’t find much info on it but know it is invasive so a bit scared - don’t want chemo it sounds so severe! Just a big baby compared to all you brave ladies on here who are so inspiring.
Love Jo xx
Hey Ali
- nice to hear from you! Hope yr BH w/e was full of fun!
Last time we spoke you were low & giving your partner a hard time - hope that’s passed now and that yr both ok! She’s probably feeling as bad as you in a different way… my OH is… he worries about me constantly - think he’s been phoning folk today to make sure I get visited now he’s back at work - gonna take phone off hook in a min so I can have a bath 
I didn’t but MRSA jammies - they have silver in them as a preventitive measure, but my thuoghts were ‘HOW can a bit of cloth stop u getting MRSA?’ - a nurse washing her hands properly before she changes your dressings can and wearing gloves can (the nurse, not u) and not smeezing on yr wound can, but fabric… dunno…
take yr fave pillow, not with white pillow case as it’ll get mixed up.
I also took little blanket for legs in day, but I was there a week…
polos great for bog breath and incase you vomit
- make sure toothbrush & paste to front of locker so you can get it if needed!
pen, notebook for questions
mobile phone - I could use mine in hosp I went to!!!
Money for TV card/phone/internet thingy that is above bed (radio free)
they should send u home with medication - just make sure u’ve got paracetamol in the house.
I think we are all probably very well - it’s suprising how LITTLE it hurts. Huge upheaval to body though - it really is exhausting - although I did have BIG op with LOTS of blood loss!! I’ve taken pain killers just because if i don’t I ache and feel crap! only taken one lot in past 15 hours though so doing better! (day 15 today!)
Re the next 3 days … once you know what’s happening it’ll get easier… plan something big and celebratory for Thurs night if you can - maybe don’t go to the extent that I did - that was quite stressful!! (had 100+ women around in decorated bras for a party!!) but maybe get friends around to bring food and decorate bosoms - it’s all about being a woman after all!
And having people around both takes your mind off it and gets them ready as willing helpers for afterwards!!
Keeping it crossed for tomorrow
Td xxxx
Hi Jo - glad to be of help!!
Navy blue means Sister. Was a nurse years ago, now practicing as a community midwife . Good that my knowledge level is high though - very helpful, and I’m not scared of hospitals!
I’ve had very little reduction in arm movement - I can’t lift it straight above my head yet - I haave something called ‘cording’ under my arm - it’s just like a tight cord running down my armpit to elbow - I have exercises to do to loosen it… I can knit (sorry for the images this may conjure - I’m only 44 though and knit Debbie Bliss lovely knits for my littlest!) even… but more pertenant, I can dress myself (even cami tops, but easier on than off) do my hair (inc. drying it, arm over head) and could probably actually iron as it’s my left arm, but not letting that on yet!!
i’m worried about the chemo too - mine starts sometime in the next 3 weeks. Also because I’m a bit of a baby when it comes to sickness!! Lots of help on other threads about this though if you get there… Chemo gets the stragglers. thin of it like that.Don’t worry. You will be fine.
Keep the love up!!
Td xx
Thanks so much Td! It’s good to hear from you and I’m so glad you are on the mend. I take it you now have your results? hence the chemo etc… I’ scared about that waiting as well… worried sick that it’s gone elsewhere! There’s just so much to worry about isn’t there? You take care
ali x
Hi all
Td… I’m not far from you, in Yeovil but had my surgery at Exeter as Yeovil didn’t do immediate recon.
Ali… I had some MRSA preventative pj’s that a friend got me. I have had MRSA before and would willingly try any preventative measures but I agree that it is no substitute for proper hand washing. I can email you the address in a private message if you want as not allowed to post it on here. I also had a shower with Hibiscrub (anti bacterial wash) prior to going to theatre. I was on a plastics ward at Exeter and they had some in each of the bathrooms. Smells nice as well.
I took in one of the V pillows and found it teally comfy, still using it now as I can position myself so my drain sites are free from pressure.
That seems to be the most uncomfortable area now, where the drains are sutured and where the tip lies under the skin. With that in mind I am anticipating that I will be realtively pain free once I loose them. I’m pleasantly suprised as i expected more pain…not that I’m complaining. The emotional highs and lows are kicking in now but as i expected them I feel able to deal with them. reading through these forums help and makes me realise just how lucky i am.
I would have found the whole experience much harder without this site.
Td… good luck with the chemo and Ali, will be thinking of you on Sat…where are you having your op?
Debi x
Thanks for the tips… I get my results from my MRI today - actually in 2 hours!. That will let me know whether I can have lumpectomy and recon or if I will need full mast. I feel sick, my stomach is churning!. Surgery is on Saturday at Ross Hall in Glasgow under Mr Douglas Hansell.
Hope you are all well today.
I’ll let you know how I get on.
Love
Ali x
Hello all -
just having the most awful day - yesterday was fantastic - I was up cleaning and showering and hairwashing and exercising - OH was knocked out by how tidy it was… and boy am I paying for it today . I’ve had a 'jammie day - stayed in jammies all day, spent about 5 hours in bed and just got up to watch ‘Nancy’ (but only cos I knew Lee Mead was coming on… though I did vote for Jessie. 3 times. Not like me atall!)
Ali - I’m trying to find your MRI results… hope you’re ok… you’re having your surgery today. I’m thinking of you
Td xx
Oh Td, what have you been telling us all. Take it easy and look after yourself and what do you do!!!
OMG i sound just like my mother!!!
take it easy girl
love and hugs
Bridie
I am!!!
Hi All!
The jammie day did me good and yesterday i was able to attend a Christening service and am now proud to be godmother to my good friend’s 3 year old. It was a long day though and I had to go for a lay down after lunch! (see… I do take my own advice!)
Today I’m expecting fall out, so have made the most of the morning adrenalin rush and have hoovered (sick of waiting for someone else to do it…) and got dressed and put on makeup and therefore look less ‘pale & interesting’ !!
Only 2 visitors planned for today… and I may try to put my dad off - we are having the same converstions over & over he is here so much!!
ALI - ANY NEWS??? WHERE ARE YOU!
Td xxx
Td
I have also been waiting foe Ali to update us. If she had her surgery Sat, she is probably still a resident of the NHS. So hopefully we shall hear from her soon.
Know what you mean about doing too much and then knocking yourself out. You initially feel like you could take on the world but it doesn’t take long for your poor old battered body to remind you of what it’s all been through!
OH went back to work today so “home alone” went a bit mad dusting. Afterall, what harm can a little light dusting do! WRONG! Will leave it a few more days before attempting that again.
Had my first post op ck yesterday and good news. Clear margins and no need for any further treatment. My heart felt thoughts go out to all of you who have to undergo more treatment.
Chat soon
Debi x
hi ladies
had onc appt today. Bit of ‘bad’ news - I was given the wrong result when told I had no lymph node involvement; I had 4/14 affected, so that changes lots of things. Like type of chemo & 10year survival prognosis. The chemo starts fortnight tomorrow and will be TAC … hard going, but isn’t it all… the prognosis for 10 year survival is 68%. Generally I’m a cup half full person, and I’m sure that I will be once I’v digested it and rearranged my life! It’s a bugger, but I had 2 happy weeks of thinking I was virtually cured!!
It’s rediculous isn’t it? One day you’re fine and stressed about making the kids lunch boxex at 10pm and the next you’ve got cancer…
BUT …WE WILL OVERCOME!!!
Big love, positive vibes
Td xxxxxx
Oh Td
What a bugger indeed! So sorry!! How the hell can they cock-up like that when they know what it means to you? B*****tards, I’m glad that you haven’t gone completely to pieces I am sure I would. But I suppose 68% is definitely glass half-full territory or even three-quarters.
We WILL overcome!!
Love Jo xx
That’s true, more than half full!
I have been inspired by you all through Td! Your party was a show of strength of character, courage and determination.
While I was falling apart inside, you were doing a lot for cancer research and for all of us.
I admire you, and I am sure you are going to fight this thing off …
Lisa x