Friday D-Day

Hi kar. I'm going to say what everyone will tell you. Try not to panic. Easier said than done I know

I wouldn't blame you being angry with the surgeon to be honest, but I can't understand why you wernt automatically given an appointment for a tripple assesment. I thought that was standard.

As far as I know you can asked to be moved to a different hospital if you aren't happy, and if you are it's probably best to do it early on!

The only thing is that if it is bad news, the delay will not cause you any extra damage (so I keep being told)

If it is breast cancer (and here's hoping it isn't) it is not the end of the world. It is so treatable, and you took the right steps by going to your
doctor.

I know you are terrified right now. There are a great bunch of girls on here. The support is fantastic. And believe it or not, quite a few are young women. I'm 39, diagnosed in march when I was 38.

Take care, and stay in touch xx

Hi Kar
Oh yes "the waiting" gets to us all honestly. Ok my story in brief. Found a large swelling in my left breast. Saw GP on Tuesday got letter Thursday to see consultant on the Monday. Had triple assessment on Wednesday waited 10 days for results but they were inconclusive, Another biopsy another 10 days results inconclusive. These results were coming back even though the lump not swelling was large 5 cm and both muself and consultant knew it was not good. He brought me in for an overnight and removed a piece of the lump 10 days later the results were back . . . cancer. Had my mastectomy in August followed by 8 cycles of chemo and am feeling great apart from the tiredness sometimes.
Hang in there if you're not happy change consultant and or hospital. It's your body and you deserve the best treatment.
Good luck Friday and keep in touch.
Evelyn x x

Hi Kar,

Sorry to hear the stressful time you are having. The reassuring part of your story is in spite of the surgeons positive approach the radiologist has done biopsies to be safe. This way you will get a diagnosis and hopefully it will be benign changes.

Unfortunately this is not the first time Vincents has got things wrong. In 2008 I was reassured by a surgeon and radiologist St Vincents private my lump was benign and biopsies were not done. After a lot of hassle I got reviewed again 9 months later at St Vincents public and again was reassured the lump was benign by another surgeon and the same radiologist. I was treated like I was neurotic but this time I insisted on biopsy which confirmed cancer. This was at the triple assessment clinic who have the facility to biopsy!! I did not move hospitals as I was afraid of delaying treatment even further. But I find it difficult continuing care there after my trust has been lost. It did not help to find newspaper articles once I completed treatment reporting 2 young women prior to me were not biopsied and later were found to have cancer at other hospitals. If I had known this at the time I would not have continued attending St Vincents.

On a positive note once I was diagnosed treatment was fairly good but I did get a second opinion first. I would advise you if you have any doubts at anytime about any information to get a second opinion for reassurance.

I don't want to alarm you just best to be safe. I hope you get some clear information soon. Try and hang in there and know there are plenty of people here with helpful advice.

All the best
A x

Hi All,

Many thanks for your replies. Your success stories are wonderful. I wanted to post a reply earlier but I just couldn't.........it seemed to make it all too real.

Today has been a really bad day. I'm either on the verge of tears or in tears. My friends/family keep telling me not to worry and be strong but they have no idea of the living hell this waiting is. I can't bear to be around anyone as I feel I have to pretend to be strong. At least on my own I can fall apart to my heart's content. My imagination is in maximum over drive - the pain in my left arm (same side as lumps) is obviously the cancer spreading, the tight feeling in my chest is the cancer in my lung. Irrational (I hope) but I can't stop myself. The thoughts creep into my head even when I'm not thinking about it.

Avalanche - thanks for the heads up on Vincents. It's good to know these things. I'm being treated in St Vincents Private (for now). I was told they were the best cancer facility in the country. I've decided that even if the results are negative I will get a second opinion in another hospital. In saying that, I have read/heard negative reports about all of them. My Dad was treated in Tallaght and the care was terrible. I went to a Dr's appointment with him and was shocked at how unprepared the Dr was for the meeting. She told us the tumour had shrunk but couldn't tell by how much. I asked what type of lung cancer it was - she asked why I wanted to know. Unbelievable - I'd be fired for less, and rightly so.

I'm off to open a bottle of red. I've pretty much abstained for the last week as I wasn't sure my delicate emotional state would be able for it but sod it. I'm going to use the big glasses - you know the ones that are nearly the size of your head.

I will be back tomorrow, or whenever I'm sober enough, to let you know how I get on.

Kar

Hi Kar,

Thinking of you today and hoping your appointment goes as well as it can in the circumstances. Regarding Vincents I think the oncology team are good and they are organised when it comes to chemotherapy e.t.c Problems I'm aware of are mainly in the diagnostic pathway. I discussed this with a breast care nurse specialist when wondering where to move my care to and she advised me none of the hospitals in Ireland were centres of excellence yet as were given titles but not the money, resources or staff to deliver. Also discussed with my Gp who advised no matter where you are seen if any concerns to get a second opinion. So that is what I will continue to do if any concerns. Saying that there are patients on here who have had good care and fairly smooth pathways so it is not all bad. Unfortunately it is not only in Ireland that problems in cancer care occur, it tends to be worldwide so we have to be our own advocates and ask for thorough care and information.

I will get off my hobby horse now! Let us know how you get on. Hope there is a clear plan today.

A x

Hi All,

I've just joined the club. DAMN!!! (I won't write the swear words that are actually on the tip of my tongue).

I'm in total shock. Even though the radiologist pretty much told me it was cancer I secretly clung to the hope that the surgeon was right. I just told my poor Mum - she was great. She cried for a minute then picked herself up and just held my hand. It was the part I was dreading the most.

I feel strangely calm - is that normal. I'm sure the breakdown will come soon.

What I know so far -

Tumour is small - only 10mm (they're surprised it has spread but it's an aggressive form - little fecker)
Nodes affected - don't know how many nodes yet
Grade 3
I'm being admitted on Wednesday for CT, bone scan, x-ray of arm (pain in left arm - same side as lumps), ultrasound to insert guide wire
Surgery on Thursday morning to remove lumph and ALL lymph nodes
I'll start chemo approx 6 weeks after surgery - 6 cycles every 3 weeks with radiotherapy 5 days a week for a month.

All could change if the pain in my arm is the nasty fecker at work.

I read a post on here about what to bring to the hospital with me - need to find it and hit the shops. Seemingly I could be in hospital for a week - not a chance. My first mission is to recover quick and get out of that awful place as soon as possible.

Off to clean my house - need to keep busy.

Kar

Hi Kar,

So sorry about your news. Always a shock even if you try to prepare yourself. The calmness can be normal as you let all the information sink in. Everything is happening very quickly now which is good as waiting increases anxiety.

Glad your Mum is a support.

Will have a look and see if can find the surgery list to bump up for you.

Best Wishes
A x

Hi Kar
So sorry to hear you are joining us,
I know how you are
feeling the shock is terrible, I had a lumpectomy back in April
which was supposed to be a precaution to remove a benign lump as my biopsies came back clear, so I got a shock when
I went back for my checkup expecting to be told all was ok
but instead I heard I had cancer and needed a masectomy
Had my operation 3 weeks ago including lymph nodes, and
am doing ok now, I think emotionally it is a lot worse than the
physical side of things, we get on with that.

Wishing you all the best and I am sure all the other tests will
be ok, it is good that things are moving so quickly, mine was
all quite slow as they didnt rush because they thought all was ok!!!

Keep in touch because the support here is great

Deema

Hi Kar

I am so sorry to hear your news , it's great you are on this mesage board, everyone is very supportive. See list below which was posted by Flo
- get button front PJs (u will prob be too sore to pull something over your head)
- bring a long shoelace so u can hang yr drains around yr neck while showering
- bring some safety pins (to pin your drains to your PJs)
- baby wipes, baby wipes, baby wipes
- bottles of water with sports tops
- make and freeze dinners beforehand
- use extra pillows (or V shape pillow) to support/cushion yrself
- stretchy vests or camis to gently support post op breast(s)*
- walkman, ipod, mp3 player to entertain yourself
- some people like silky or satin PJs cos it makes moving in bed easier
- fruit. veg and high fibre diet and or laxative to prevent constipation post op

* not always possible as some surgeons want u to wear a non wire supportive bra.

Wishing you all good thoughts, keep in touch here , great support and advice.

Petal

Hi Kar

I'm really sorry to hear your news, it's just a horrible time when you just find out. It does get easier though...reading your story reminded me a little of mine..My story briefly:Felt something..not a lump, I felt a bit tender in one spot on my breast last summer, went to Dr in August and he basically told me not to worry, nearly sent me home telling me I was too young (40)!!Said we would schedule a mammogram just to 'reassure me'!Anyway went for my mammo next week, was called back same day for an ultrasound where they spotted cancer. It turned out to be grade 3 like yourself, 2.4cm tumor and in 1 node. Had the rest of my nodes removed which turned out to be clear thank goodness. I had a wire guided lumpctomy too.
This was followed by 8 cycles of chemo and radiotherapy for 6.5 weeks. I feel great now and am getting back to 'normal'...so there really is (as the other girls have said) life beyond the horrible diagnosis. This forum is great for airing your worries. If you want to know anything at all just ask, take care x

Hi Everyone,

I hope you're all keeping well. It's great to hear from all of you - this site makes me feel less alone.

Petal - thanks for the shopping list. I'll get cracking as soon as the great depression lifts.

The last two days have been some of the worst of my life. I thought nothing would ever beat hearing that my Dad had lung cancer or then watching him die - but this has.

My friends and family are wonderful, they really really are, but they just don't know how I (we) feel. I know they mean well but if someone else tells me "you just need to think positive or you're lucky to have it young - you're strong fit and healthy" - I might kill them. Considering it's only 2 days since my (official) diagnosis I think I'm allowed to feel sorry for myself (and terrified) for a few more days. Maybe when I know exactly what I'm dealing with I can start to try thinking positive. I think I'm afraid that if I start to think positive now, before all tests and surgery, and the results show that it has spread, that I won't be able to pick myself up. Where if I prepare myself for the worst, and it's better, fantastic.

Please keep in touch -I really get so much from this site.

Karen

Hi Karen
So sorrry the news was not better but look "the little allien" will be gone soon and believe me you will cry yes but the relief of knowing it's gone from your body is great. Then when the chemo gets zapping you will know "the little allien" is loosing the battle.
We all know exactly where your head is at the moment but it will clear. Remember crying is good for the soul but not too much
we are all here in your corner girl so go on give "the little allien" hell.
Evelyn x x

Hi All,

I hope you're keeping well. The sun is shining here in Kildare - I hope it's the same wherever you are. Seemingly we're in for good weather this week.

I'm starting to feel a little better. Hardly any tears yesterday and none today (so far).

I've gone through so many emotions though -

I can't do this
I don't want to do this - let me die
Leave me alone
Why me - I'm fit and healthy
Why didn't I find it sooner
What could I have done differently

Today's emotion is anger - mostly at my loved ones. I keep hearing them whispering when I walk out of the room. It's my own fault - I told them not to flaff over me and not to keep asking me how I am so I can understand why they need/want to talk to each other. I just feel like I'm not in control - not good for a control freak.

What is going on with the lack of energy? I know it's probably stress, paranoia that the cancer is spreading and not eating taking it's toll - but how can I go from feeling ok a couple of weeks ago to feeling "sick" all of a sudden. I went to Dundrum today to get a few things for the hospital and felt like my legs would give way at any moment. I didn't even want to shop for shoes - an absolute first. (Brown Thomas sale starting tomorrow for anyone interested)

Does anyone know how long I'll be in hospital for after surgery? I'm scheduled for a WLE on Thursday morning. The surgeon said I could be in for a week but I could get out Monday if all well. Looking at some of the UK sites they say the next day - thats a big difference.

Looking forward to hearing from you,

Karen

Hi, Kar,
All you are going through is normal. A year ago i was in your shoes.
I went in on Thursday and out on Sunday. All depends on what they find and also lymph nodes too.
I went through every emotion there is. Once i lost it and flung things. Hubby took a lot from me. I came through, and tonight my hubby is waiting on surgery in Dublin - tomorrow. Why is life so hard for some?
They say God gives it to those strong enough to carry it.

Thinking of you, will say one for you, and let us all know how you are doing, whenever you feel up to it.

Luv,
Gemgee x

Thats bloody rotten Kar. You'll prob find that your language goes deplorable during the treatment, I came out with some great expletives that I didnt know I knew! Re: the WLE, well I was in for quite a while, in my case it all depended on the output from the drain (I know, gross!), well mine didnt reduce quick enough and I had to wait until there was something like 50mls per day so hopefully yours will fly out and you'll be home before you know where you are. I had my chemo first (8 rounds) and following the WLE I had 7 weeks of radiotherapy which I'm just finishing this week yippee. Yes its been a rollercoaster and I wouldn't wish it on my worst enemy but its do-able. Actually it puts things in perspective a little, I'm a little more mean with my time and energy now, I know that sounds mad but I only do things I really want to do and enjoy. Yes I still have to do the mundane crap but I keep it to a minimum and even then only when I feel up to it. Your family dont have a clue what to say to you to be honest. I was so angry, I still am but life goes on..... I'm attending St. James for my surgery and I chose to go to the Hermitage in Lucan for my chemo and radiotherapy so if those treatments are on the cards for you ask to go to the most convenient location-wise for you (hermitage is great). On the surgery front, I took my son's nintendo ds to play with, great for taking your mind off stuff. I'm in Kildare too by the way. Is there a plague or what?
Anyway take care of yourself and if there is anything else you want to ask, fire away.
Garcon

Hi All,

Gemgee - I hope your husband has had his surgery today and is starting to feel better.

Garcon - thanks for the info on the drain output - surgeon never mention anything about it. Feckin men....!!! It's really good to know things like that in advance so I'm not shocked if it happens. I still hope to be out within a few days but I'll pack a few extra things just in case. At this rate I'll have to take a large suitcase with me -it's worse than packing for a holiday. I was in Marks yesterday getting some pj's and things for the hospital and the woman on the till asked me if I was going on holiday - rather than embarrass her I said yes. We ended up having a conversation about when and where I was going, for how long and wasn't I so lucky. If she only knew.....

I am due to have chemo about 5-6 weeks after surgery. I'll have 6 cycles - 1 every 3 weeks with radiotherapy 5 days a week for 4 or 5 weeks. I'm thrilled that you had such an easy time with RT (need to get the lingo right). It makes the journey seem less daunting. At least now you can enjoy the summer. Christmas is my big event to look forward to - all going well my treatments will be over and I might even have some fluffy hair on my head.

There's definitely some kind of plague in Kildare - my friends brother is having surgery on his thyroid this week after lump biopsy was inconclusive. He's the same age as me - 36. Wonder if moving would help - feck all seems to happen in Leitrim.

Have a lovely evening everyone. As this is my last night of freedom before my path to being cancer free starts - I'm going over to my bestest bestest friend EVER for dinner (she reads these posts).

I'll be back as soon as I can to let you know how I got on.

Karen XX

Hi Kar

I wish you the very best of luck tommorrow. I had a WLE too and was only in for 1 night! Wasn't bad at all. At the same procedure they took a couple of nodes for testing..but I went home until the lab analysed the sample. I was admitted the following week for axillary clearance after the node tested positive, and that procedure was the lengthy one..I was kept in for 5 nights (this was the one with the drain) so all in all it wasn't too bad. I hope it's as brief for you. I know what you mean when people keep telling you to be positive!! I would be bursting to say what I really wanted to say at times but couldn't!!!
I know you are wondering about Kildare having the plague!! I'm in the south..and there's plenty of it about down here I can tell you!!
Hang in there Kar, you are on your way to being better xxx

Ps. hope you have a lovely dinner

Hi Kar

Best of luck tomorrow will be thinking of you,
hopefully you wont be in the hosp too long, I was 1 week after
masectomy and node removal but that was because of the
drains as well there was a lot of fluid and I had to wait until it
reduced even though the doc said I could go home with the drains in, it was definatly not an option for me!!!!!!!!!

Good Luck

Deema

Hi Karen,

Well its Thurs morning so I guess you are in having your op as I type this. Hope it all goes well and the additional scans, etc. come back clear.

As others have said, everything you have felt to date is 'normal'. We all just have to get through it however works for each of us. I was very calm wehn I first got my diagnosis and held it together for 2-3 days before I went ballistic, screaming, shouting and smashing things! I survived to tell the tale (4 years out now) but some bowls and plates did not!!!

Glad the site has been of help to you. I always found other patients to be of great support, it helps us feel we are not so alone.

Talk again when you get home.
Hugs,

Flo.

Hi Kar. Just thinking about you today, hope all is going to plan .

Hi All,

I hope you're all well and had a great weekend.

Thank you for thinking of me last Thursday. I got out of hospital on Wednesday - so I ended up being there a full week. I tried to post a reply on Wednesday night but I was so stoned from all the drugs the computer screen seemed to have waves flying across it. Can you imagine the gibberish I could have posted. I'm bad enough drunk.....!!!

Anyway - the surgery went well. I was up and about the next day and out having coffee on Saturday morning. The drain for me was the worst part - it was so uncomfortable. The hospital honestly wasn't too bad - I drew the line at the very cute young male nurse asking me if my "bowels had moved" though. Seriously - enough is enough.

I got all my results on Friday - PET clear, margins clear, 3 nodes affected. It turned out that I had 3 tumors not 1 - the main one was 11mm and the other 2 were tiny - only found in Pathology. It's called multi-focal BC. The surgeon was unable to tell me if they were 3 separate tumors or if the main one was "reproducing". Either way it's out of me. I My family and friends were thrilled at the news - I even had one person phone me to congratulate me on getting the "All Clear". Agghhhhh...!!!! I seem to be so unimpressed each time I get good results. I think my brain goes into self protection mode so I don't have to endure extreme highs to lows.

II'll shut up now. I feel very selfish just talking about myself all the times .

Again, hope you're all well and thanks for your messages.

Write back,

Karen xxx

Hi Kar,

Just a quick note to say thanks for the update. Glad you are home. Rest up now and take really good care of yourself.

Talk soon,
Flo.

Hi Karen, dont worry about 'talking about yourself all the time', because thats what it is all about...you I think we need to be able to come on here and say what we please, and know that no one is going to say 'oh there she goes again'.

I hope youre feeling ok, and its great to hear that your scans are clear.

I know what you mean about saying you got the 'all clear', it frustrates me when I hear that. Its clear margins they got. Someone said the same thing to me and i had to bite my tounge.....i havent got the all clear, i still have chemo and crap to do. People keep saying 'the worst is over'....i wish it was

So whats the next step for you? Ill know on thursday if im going to have chemo or not. On one hand I hope not, on the other i hope i do, just to make sure the little blighters are all gone

Hi Kar, I was 36 diagnosed too (triple neg less than 2cm) had chemo & radiotherapy & out of treatments now for past two months. Just checked in to say to you that you will get there, soldier on, chemo is not bad at all, RT also I found fine - I had no issues with any of treatments so hopefully you won't either. The scariest thing is the C word, try not to focus on all the what ifs as it really isn't healthy for you.. think of all those people who have successfully come through & remained healthy & think why not me ! this is just a blip .. if you wanna have a chat ask anything just pm me & i'll give you my no. Take care, M

Hi Kar
Glad your operation over and you feel ok ish. My mood changed on an hourly basis some days. One wrong word from someone or indeed a song on the radio and I was in tears. it does get easier believe me. The chemo is tough but managable there is a good book on it free from Irish cancer society.
Evelyn

Hi All,

I hope you're well.

Sorry I haven't been on for a while - I swanned off to Marbella for a few days. I only came home today because I have some fluid build up. I have an appointment at the hospital tomorrow to get it sorted so I hope to go back to Spain next week. I have an appointment with both my Oncologist and Radiologist on 22/7 to find out treatment details so I'll be home again for that.

Hugs/Evelyn - I read your recent posts on other topics. Evelyn - I hope you're feeling brighter. I read somewhere that when the momentum of treatment etc is over that the realisation of what you have been through can hit very hard - sometimes worse than first diagnosis. Your feelings seem to be common so try not worry. Tears can be a good thing. Remember - there's alway alcohol....!

Hugs - I'm so glad your first chemo went well. I think you made the right decision about the trial. At the moment I am not worried about the actual chemo but I am terrified about losing my hair. I bought some head scarves in Spain (so I don't have to wear a wig at home) and I nearly cired trying them on. It was such a horrible feeling and it bounced me back to reality with a bang. To be honest I think I'm in denial that I have cancer. I can talk about it like I'm discussing the weather but it's like I'm not relating it to me. I was lying on the sun lounger yesterday talking to myself saying "Karen - you realise you have cancer don't you - you know it's you that has it" but I still don't feel like it me. When my Dad was diagnosed I felt like I had a weight in my chest all the time. I had that for the first week or so but it's gone now. I can't figure out if I'm really well adjusted or having a major case of denial. I guess I'll find out soon enough......!!

Michl - would love to chat. When I figure out how to pm I'll drop you a message.

Take care everyone,

Karen

Hi kar, glad to hear you are doing well. Lucky you swanning off on holliers....lol. I hope youre not too long hanging around waiting to be drained. Ive had to be drained 3 times. I still ahve fluid, but im leaving it, im afraid of infetion setting in.

If you are around on monday morning at 10.30, there is a meeting in arc house in eccles street for young women with BC. It is a great way to meet up with other women going through the same crap. it would be grat if you could get there! Thats if you havent flown away again....lol

Hi Karen
Hope the holidays went well and you enjoyed your time away. I had exactly the same feelings as you in that it was as if someone else had the cancer. it was the only way I could get through the operation/treatment and it worked. Problem is I have fallen apart now but am getting counselling which I know will help
Evelyn