Devastation again :(

Oh so sorry, I'm new to all these words, what does this actually mean? Have you had treatment? I know my sentinel node biopsy was clear. I'm undergoing chemo at the moment, lumpectomy after that then radiotherapy .

Mary

Hi Mary!
He did the sentinel node just as a precaution because they were all set to give me a diep immediate reconstruction then hormone therapy, with a question over chemo and radiation because the lump was so small- 1cm and grade 1/2. This now changes everything - longer treatment, and nastier side effects. He has to have a new case conference with the the team, because the results only came back this morn and he is now having to readdress the situation!!
Just so peed off now

Hi Neadi
So sorry for you. I had the exact same scenario. And I agree it was worse the day getting the news about the nodes. I also had the date set for the surgery and immediate recon. The surgeon was very surprised in my case too. All changed to no immediate recon and add in chemo and rads. It's an awful lot to take in when you are just getting your head around the first bad news.
I know it's just awful now and all you will be able to do is cry but eventually you will take it all in your stride and not feel so bad. I just finished chemo last week and now it feels like it went by in a blink.
You know we are all here to support you. Keep posting.
Jo xx

Thanks J

I honestly feel like I've been hit by a bus! And now I'm so so scared that it could be somewhere else they could have missed. At this stage now I'm just sick of meetings and talking . When on earth are they gonna blitz this thing???
I just want to throw something big and breakable at a wall, but not sure that's going to help either......
Xx

Sorry what's a diep? I need to get to know these words. Do I take it you were going to have a mastectomy and reconstruction and no chemo or radiotherapy and now because its in the node you have to have treatment as well? It's all complicated but they are brilliant at what they do and you'll come out the other end of this and you'll be fine and you have all us here to support you.

Hi Mary!
A diep flap is where they do the reconstruction using skin and muscle from your stomach and often they offer it as an immediate while you're having the mastectomy. Seeing as my ultrasound, MRI and ct didn't show anything sinister, I was all set for this- even meeting plastics last week. They would have held off on chemo and rads depending on what they found in surgery. Now this changes everything. I'll probably be facing recon this time next year which will have me lopsided - not to mention chemo - bald. Adding on a good ol dose of radio just as a bonus!!!!
Really on everybodys wishlist eh?? Especially at 37!!
Sorry if I'm moaning. This bloody tunnel just seems longer and darker than ever.......

Oh neadi don't despair. I was told chemo straight away, lose hair two weeks after first treatment. I loved my hair but just got my husband to shave it off when it started coming out in clumps it was too distressing but once it's gone that's it you don't think about it anymore. I'm saving 85 euro every six weeks for cut and colour. I will have lumpectomy in jan and then radiotherapy . I had first chemo on 10th sept and I was 50 on the 14th, nothing to celebrate but I will celebrate my 51st, most definitely. I have been overwhelmed by the kindness of people . I haven't cried too much but a lot if time was when people were being so kind. Where are you attending?

Everybody has been so so kind......., but it's just on days like this it just gets too much.
I'm attending st vincents in Dublin and I have to honestly say that they are just fantastic! But I scream in my head- there has to be a kinder way than this..... It's all too cruel

You have to stay positive, seriously. Take one day at a time. I was going to be 50 had a lovely 3week med cruise booked with my husband and life was good. Then this!! cancelled cruise and postponed my 50th celebrations and just got on with beating this darn thing so I can get on with my life again. They are fantastic in Vincent's they make you feel special and cared for. What surgeon and oncologist are you under?

I have mr McDermott. I think he's ace, but mind you I just kept crying at him today.....I wasn't given an oncologist- but I dare say I'll be meeting one in the non too distant future......

Life has a funny way of kicking you in the ass....one minute you're thinking about starting a family, the next breast cancer and lymph nodes take over every waking moment.
It's just shit.......

I have Jane rothwell surgeon and Janice walshe oncologist they are two fantastic women. What age are you? You will be able to have a family when this is all over. I just feel that I meet people in the hospital who are an awful lot worse than me. Some are getting chemo every week indefinitely at least I have a finish date on mine and can move on please God. When will you find out exactly what is going to happen.

I'm 37 and only married 2 years. Not on the game plan at all.....
We have to go back in on Monday afternoon because plastic surgeon wasn't there today to be consulted today after the shock!!! I just wish the talking would stop and the action would begin at this stage....

A friend of mine has just given birth at 47 so there is plenty of time, don't think about that for the moment. We've no children and life is going to be good in 2013. They won't delay they like to get going straight away. I was only diagnosed on 17th August and ill be finished six sessions of chemo before Christmas all going well.

Hi Neadi
Sorry all didnt go well today.I was diagnosed with a 1cm lump and told that within 3 weeks it would be sorted with lumpectomy then rads and all done.But it wasnt to be and at the 3 week mark was told at home on my own that the mri had found a second 2cm tumor and dcis for good measure!!My world fell apart that day.Once you get your plan and treatment starts it does get better,as you will switch into fight mode.My sil also went through this at 34 and now has a beautiful little girl whos 3 and shes only 6 years clear now!
Consentrate on getting rid of this damn curse and you will come out the other side stronger,healthier and even happier as you do see life diferently after.
And we are all here to help you along

xx

Thanks guys!!!
I know I have to get myself right before anything else, but today has been a real knockback, and a right kick in the mouth.

It just has to get better from here yeah?
Hopefully Monday will bring some answers...

Keep us posted and chin up it'll all work out I promise you xxx

It will,it does and after you will forget most of it,something i didnt think would ever happen but it does.They will move fairly fast once they have plan of action.

xx

That's good to know!!!!!
Onwards and upwards eh???

Yes they don't waste anytime, this time next week you'll have your plan and you'll see light at the end of the tunnel and you'll look back on it all and smile

Thanks Mary
I really do hope so!!!
Xx

Hi Neadi

Just logged in to see if you had let us know your results. Really sorry to hear that it wasnt what you thought same happened me and its shit - lets face it!!!

So okay you are allowed to cry all weekend ok!! Then Monday its up and at it again. As someone else said it will go quick from here on in. I got my news on a Friday met Oncologist on Thursday (had to do a heart scan) then they rang me to say starting Chemo the following Thursday - not sure in your case which way they will do it but do be assured that it will move quickly. Totally agree with you about you just want to something rather than talk.

I like Mary (Hi Mary!!) have Janice Walshe as my Oncologist she is my sort of woman kick ass and straight talking!!

This is a big set back for you Neadi however there is nothing you can do about it so look at the positives its still a grade 1/2 which is GREAT okay you will look like Sinead OConnor for a while (i just bought loads of hats and stuff online get mine shaved Monday), you will have to do chemo and have a mascetomy. You WILL GET THROUGH IT thats the main thing I always focus on the fact that I WILL GET THROUGH THIS and this time next year I will be a better person from it!

I had my last baby at 41 best mistake I ever made!

Am in Vincents on Thursday for my next nuking let me know if your around could meet for a cuppa!!

Chin up Girl and remember Monday its up and at em and start beating the crap out of this!!

Go Girl!!

XX

Deefed is so right there will be no delay. Monday is the start of a new phase and onwards and upwards and positivity all the way. Yes Janice is a breath of fresh air feel very confident under her. I'm in Vincent's private on Monday week if anyone is around. I'm so going to enjoy this week as I feel ok haven't been good since last chemo nearly two weeks ago.

Hi there guys!!!
Needless to say after my news I've been talking and hugging all day, as my loyal and faithful family and friends came to offer support- am si so lucky to have them!!
So now knackered!!!
And trying to get a little perspective on things. Not the best news in the world.......but nor it is the end of the world is it???
I just keep holding on to the words "we are treating you to cure you" said by doc. That's good odds isn't it??? It may not be the way I wanted it, but I know I have the support here and my army to help me through this........
Dee if I'm in and around next thursday I'll message you and we can gave a cuppa, if not, I'm sure we'll be sharing one later on and perhaps a bottle of vino when we're all done.....
Time to dry the eyes ......

Good on you neadi that's the spirit, Monday is the start of your recovery and your cure. Xxxx I'm sorry I'm not a Thursday chemo!!!

Thanks Mary
Xx
We'll all get there x

Good stuff girl take all the love and hugs that can all be quite draining too telling the story over and over again!!

Hopefully you will get some sort of plan tomorrow from them -who are you meeting tomorrow?

Cheers
Dee

Mary looks like I will be on the hot seat on my own again!!

Hi Dee!

I think mr mac is meeting the team in the morning. So it's then him and Maeve meeting us at 4.30 tomorrow.
I'm still struggling coming up with questions for them as I'm still so confused....how come somebody can have a 6 cm aggressive tumour and little node involvement, and then here's me with a 1cm tumour apparently slow moving and micromets found on 3 nodes taken out??? Just so confused!!!!
So if anyone is reading this what questions should I now ask???? Confused.com!!!!!!!

You should jot down the questions you want to ask, exactly as you've just asked us. They will explain it all and things will be more clear tomorrow evening and a plan in place. I woke up this morning with a mark on my shoulder looks like a bruise but doesn't feel like one, not sore . There's always something, and you worry when you see something strange.

I was out just for a few drinks and a meal last night and when I got in to bed I got really upset just fed up having to put a wig on when I go out, it's most uncomfortable and it's not my hair and just hated been like I am, going through treatment, no hair, feeling off sorts, arranging your life around treatment I just couldn't stop crying but a big hug from my husband who reassured me I was half way through and that very soon I'd be feeling normal again. Just sometimes it gets to you but I was fine this morning.

Thanks Mary!!
You are so right!! I'm asking you guys questions, so surely the men with the know how should be able to answer too??

I'm sending you a big cyber hug too!!! I'm sorry you were feeling rough last night. I was at a wedding last weekend, and cried the whole way home because of people's reactions to me, and I haven't started chemo yet- that joy awaits after surgery.

I know everyone says focus on the positive - but you are almost on the homestraight of what seems to be the scariest leg of the journey, says one who won't get her starting blocks til tomorrow!??
You're going out and about- I don't know if I'll even want to do that after things get chopped/ fall off. So that in itself is a plus and a strength!! Keep going girl! You can do it!!!!

Xx

Oh yes they will tell you everything so you can understand Janice explained it while writing it down as well and gave us the sheet of paper so we could take it in when we got home.

Oh thanks I need all the hugs. My friends brought me out for my 50th the week after I was diagnosed and my husband collected me and I had a fair few drinks I sobbed all the way home, God help him, I kept whaling 'I'm terrified ' 'I'm so afraid' but I was ok next at, think we need to do that it helps get it out of our system.

Oh God yes I think it's vitally important not to get housebound. I always lived going out for meals and weekends away. I've a weekend booked in the Slieve Russell with our friends at end of November, weekend before I go for my second last chemo. I've booked myself into the spa as they do treatments for people on chemo. It keeps you going otherwise you'd get depressed.

Oh I know!! And fair play to you!!
Just keep thinking, the chemo is not only blitzing the gunk, but eliminating all your fears. Have you had your surgery yet?? You're in the middle of my fear. Ive told everybody I'd take any amount of surgery, but just so fearful of the uncertainty of chemo and all the publicised side effects, so hearing that you are maintaining a semi normal social routine is very heartening.

We are all really scared, I wailed at my auntie
"am I gonna die....."
She winked at me and said
"yeah one day, but not just yet"

Says it all really???

Thanks for support we'll get through the wobbles and fears together
Xx

Oh I try to be a 'glass half full' type of person but sometimes I do bawl, only to my husband he's a gem. My mam is 80 in feb and my dad is 78 and I'm their only child so I can't let them know when I'm upset I wouldn't do it to them, it was enough telling them I had breast cancer my mother cried for four days.

Chemo isn't that bad, as they say its no walk in the park but its doable and it passes and like you say it's part of the healing purpose and where would we be only for it. I have been out for lunch with my friends, did a bit of housework when good, been out for meals and attended my real good friends wedding the thursday after my second chemo. I am having a lumpectomy in January when I hope I will then be 'cancer free' please God. Then a course of radiotherapy.

Oh what a good answer from your aunty so positive, instead of crying with you.

Yes the support is great and we will get through this together ask any questions, anytime. Bovril is great when your mouth feels like saw dust!!!

Well I'll know for sure when my mastectomy is. I really wish they could save it, but he's explained his reasons and they make sense.

It really does seem so cruel doesn't it??

I get what you're saying about parents....
My dad lost my mum when we were young, and I'm just putting a brave face on it in front of him- I really don't want to upset him, although he says we'll soldier it together......

Soldier on...... That's what we're gonna do missus!!! God think of me tomorrow.....here we go head on....

I certainly will be thinking of you tomorrow and will be watching for your post tomorrow evening if you're up to it. Yes I'm lucky that its a lumpectomy I know I am, but if a mastectomy is the way to making you cancer free it's a no brainier and apparently reconstruction is marvellous.

Yes we will soldier on together we are now members of the elite club I always think when I go for chemo, people are chatting to each other, telling each other how well they look, and saying 'where is your cancer'? 'How many treatments are you having ' 'how often' etc., its like a little world we have now been plunged into while we get poison pumped in to us!!

The very best of luck tomorrow, things will start moving from then

Ah Neadi
I'm so sorry it's not the result you wanted am my heart goes out to you to see how devastated you are over it.
It's a big change in the game plan for you for sure, I had chosen an LD flap for my immediate reconstruction. My surgeon only did a sentinel node biopsy as a precaution (she didn't expect to have any nodes positives) but guess what?!?! My results came back node positive too! Funny enough, it didn't surprise me but my husband was so gutted and took it very bad the day of the node results. However, I went ahead with the immediate reconstruction and luckily everything has worked out (maybe not as fine and dandy as we had hoped, I had a bit of encapsulation but we are hoping to have it tweaked next year).
Hopefully you will be able to accept all of this and be able to find your mojo in preparing yourself for the possibilities of treatment.
I didn't meet my oncologist until after I had my surgery. I don't know if that applies to everyone.
Wishing you the best of luck x

Hi encee
God it's been a whirlwind of a few days....

But you're right- I just have to accept this now and get going with it. I only hop it's SOON!!!!

It will be xxxx

I will post up what will be the final verdict tomorrow!!!

Foreman please stand up.......

What a cliffhanger.....

It'll be 'not guilty' free to go!!! Maybe a little 'community service'

Here's hoping!

Awake at silly o'clock again!!!!! God, what I wouldn't give fir a decent nights sleep.......

Xx

Hi Neadi,

A note to say that I am thinking of you and hoping you get a plan today and reassurance. Once you feel that you are on the road to recovery it gets easier to deal with - one step at a time. The waiting time is so, so hard.

While the waiting does seem long, your doctors sound just amazing - they are leaving absolutely no stone unturned in getting a precise diagnosis and a treatment plan in place for you.

Hugs

Kathleen

Yes you will have a clearer picture today and you will sleep better. Don't forget you are attending one of the best cancer hospitals in Europe . Bet of luck will be thinking of you

Thinking of you and hope you are feeling more positive after your hospital visit today. Really hope you are feeling better xxx

Hiya gang!!!!
Only home now- the breast clinic was v v busy and we had a bit of a wait, but we STILL have no date for surgery!! And we have to go back again on Wednesday to hopefully find out....

However things are a little clearer thanks to you guys helping me to clear my head and sort out some questions:

The operation will be either next Thursday or Friday. Surgeon is good to go anytime- they have to pin down the plastics.

Defo NO reconstruction (bummer), but they are willing to offer me the temp skin expander - anyone ever had that????

I asked specific questions about my node involvement- it turns out that I only had what they would describe as one positive node - the other two had microscopic mets and technically that doesn't mean it's positive - they're there none the less

Great to hear from you. Well having surgery Thursday or Friday is great, best to have it than have it hanging over you. I don't know anything about reconstruction as I'm really very new to all this. That's really good you had one positive node I know people that have had 30 nodes removed. You feeling more positive?

Yeah! A little! The nodes have to come out, and it is the full works, but my head is adapting to it! I was asking my nurse about the cold cap thingy , but my hubbie doesn't want me to have it as he's afraid the chemo will miss my brain( bless!!) I'm keeping my options open..... I know it's a but down the road, but I was in mega question asking form!! Doc was very impressed with my "girly looking notebook"!! He is so sound- really get the impression that he really cares about all his patients.

It's not an ideal situation for any of us, but we take the positives and good things where we can eh???

So back to work tomorrow to my munchkins. Leaving my class will be tough- it's only when things like this happen that you realise that you love your job......but want to be back by September!! And hopefully I will!

We're in to meet plastics tomorrow and we're not leaving there without a date......

Maybe it's a not guilty with community service eh?????

I know it's ok for me to say but best they get rid of all chances of cancer coming back so get rid of the nodes. Reading up on it the cold cap doesn't sound pleasant and I'm not sure that its 100% successful . Janice my oncologist said it wouldn't work on me because my hair was too thick. If I can be really honest I don't mind that my hair is gone I've got used to it and its saving me €85 every five weeks in colour and cut!! . It's one less thing to stress yourself over as when it's gone it's gone. I got a lovely wig but I tend to wear turban type bandanas that I ordered from the Internet from wigs4you. I don't care whether people are comfortable with it or not , I am. The wig can be quite uncomfortable but I do wear it when going out with my husband as he feels people are noticing me more without the wig. Don't stress yourself over having no hair it honestly isn't as bad as you think, and I loved my hair with a passion. I didn't look too bad bald, quite Sinead O'Connor like Hair falls out two weeks after first chemo, and when it starts to fall out you so have to get it shaved off, too distressing falling out in lumps .

Fair play for asking all the questions you're dead right. I think they all care so much for their patients you can feel it and its so reassuring .

It was very emotional the day I left work and they had tea and cakes and presented me with lovely flowers and said they wished me the best and they would miss me, surreal it was. You will be back I hope to be back after I finish her-ceptin in September but I'm going to enjoy my year off when this chemo is finished.

Yes it's not guilty with a little community service. You'll be free this time next year.

Hi Neadi and Mary

Wow there I was harping on about what a great day I had and I never checked your post - sorreeeee

Neadi I think what you got done today was FANTASTIC you have a date for surgery (one node positive) sounds like me think (I should bloody know) they took out three but one positive and I will get mine out too. As Mary said better to get them out then risk having cancer again!

You will be flying soon girl. As you know I went bald tody and like Mary I am actually really comfortable with it a bit Sinead O'Connor (wish I had those lovely big eyes as in the Nothing Compares to You Video!) Honestly I really mean that - the only thing I regret is I left it so long to get shaved. It started falling out last Monday and I only got it done today and the last few days was distressing should have got it done earlier)

Must be horrible to leave the kids and your job - but look on the bright side - hopefully you will get paid? I am self-employed so I Get Diddly Squat for paying my PRSI (only .5% less than an employed person) so I have to keep up some sort of work to get paid.

Seriously what you got achieved today was great and hope your feeling more positive about it. Lets look at it one way there is feck all we can do about it so lets make it as fun and bearable as possible.

Cheers
Dee xx

Absolutely please come along and join our 'baldy' Sinead O'Connor lookalike girls. Thankfully I'm a low paid public sector worker (and I know I could get shot for that) but I've worked for 32 years so I don't feel so bad and I'm lucky as that's one more thing I don't have to stress over and my husband is working and there is only he two if us so I count myself very lucky.

Yes there is feck all and we are lucky to have such brilliant cancer specialists here in Ireland and we must make the most of it, and we will come across some lovely people we would never have met if we hadn't got this dreaded disease and that's not a bad thing

Yeah, finally being a teacher brings some benefit! I know sick pay laws are changing, but it's the least of my priorities at the mo. I know with the treatments that there is no way I could be in a classroom of coughs and colds- jeepers I caught enough when I was 100%!!!!

I asked to be given dr Walsh as my oncologist. I've heard a lot of good things about her.... So hopefully that will happen...

Golly Mary and dee, thank you so much for all the support, I genuinely don't know how I would have gotten through the past 3 days without you guys, I can see us forming a little support group right here, but now because of the delayed recon, I prob won't be fully done until this time next year

I suppose I'll know when I meet mr plastic surgeon tomorrow......

Thanks again

Xx