HELP!!!!!

I am so sorry to sound so desperate but I have been reviewing this excellent website for the last few weeks whilst I’ve been agonising over my newly diagnosed breast cancer and I was hoping that somebody out there could perhaps give me the benefit of their experience. Firstly, may I introduce myself as just being diagnosed, approx three weeks ago ( on my fortieth can you believ )??? My fella had found a lump on the side of my left breast, and after having breast augmentation last year from a 32B to a 28G and a very punishing weight training and runing schedule, my consultant first thought that I was tear in my chest wall. A biopsy revealed that it was unfortunatley breast cancer and I was admitted to have a WLE and SNB on 05/09/08. This went relatively ok but I did get a little suspicious when my consultant confirmed that he had taken three nodes ou that day,including the sentinel. I was sent home to recuperate and have been back today to get my results. It was worse than expected and I’m shaking as I type this but my nodes have tested positive and the disc that the surgeon removed around the tumour is also cancerous, EVERYWHERE!!! I need to visit a surgeon tomorrow in Chester who aparrently specialises in mastectomy around my implant and then have node clearance at the same time. My consultant has been nothing short of brilliant but he now needs to refer me to get the op done asap so that he can start the chemo asap as it’s in my nodes. My op is scheduled in approx two weeks and I’m due to start a new job on Monday which unfortunately doesn’t pay me sick pay but only SSP. Due to the natre of my work they have recommended that I don’t continue to work whilst I’m having chemo as its public facing and are worried about my risk of infection.
My head is all over the place, one minute I’m sad, the next angry the next “why me?”. I’m fit, don’t smoke, drink only in moderation, am not overweight and feel totaly cheated.
I’m sure that there are other ladies out there now who may be reading this who have experienced much worst than me and for them I feel for. However, I’m appealing to anybody out there who can perhaps give me some advice if they have gone through or are going through a similar situation as mine, and we can help each other?

Hi Sausage

Welcome to the BCC forums, whilst you are waiting for the other users to reply with their experiences and support you may find BCC’s resource pack helpful, it has been designed for those newly diagnosed. If you would like a copy just follow the link below to order a copy:

breastcancercare.org.uk//content.php?page_id=7514

If you feel you need to talk to someone in confidence then please give the helpline a call, the staff here are all either breast care nurses or people who have personal experience of breast care issues. The number to call is 0808 800 6000 the lines open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm.

I hope this is of some help to you.

Kind regards
Lucy

Oh Sausage you are going through what I think all of us go through when diagnosed. I was in limbo when I was told and even now 22 months later I still feel as if it isn’t real. When I was diagnosed I felt fitter than I had for a long time. I swam walked and I was just geting a bit more time to myself. I can only say you will I am sure deal with it much better when you get a treatment plan. Most of the people on here say the same. The worst time is waiting for everything to start. Life will never be the same for me again. I have just finished herceptin 2 months ago and now feel fine. I had node involvment and a large lump. No one knows what the future holds and there is always the fear of it returning. I was very naive about bc and I had a drip drip of information which was not good. You will learn lots from this site and some of the information I found very scary but somehow you deal with it. Hope you feel better in a couple of weeks when things start moving Love Eileen

Sausage

I’m so sorry you are having to go through this. I remember well the whirlwind of activity and emotions that you experience around this time. Now I’m one year on having had SNB, chemo, mastectomy with node clearance and radiotherapy. What can I say… It can be got through, it is not nice at all, the medics have learnt so much about bc and they do sound like your team is taking firm action. I had 1 out of 29 nodes affected.

wishing you all the best and keeping asking the questions.

Thanks Eileen and Wizzbaby for yor speedy response and kind words and encouragement. I’ve been reading some of the other forums here regarding ms and was wondering why I haven’t been offered having a bi - lat one as a safegurad to going through al of this again in my right breast. Also have you heard of anybody who has a has a ms and saving the implant that’s already there? What an absolute horror this disease is??? It’s not fair for any of us is it? xx

Hi sausage just read your post and had to reply because its now about 8-9 weeks since I was first diagnosed I can still remember those emotions back in the beginning. I had WLE and SNB. They took 5 nodes and 2 were positive. I am just about to have my 2nd chemo tomorrow and feel surprisingly calm! As the others say those first few weeks are the worst - really! You begin to realise that this problem is going to be around for some time and your body cant maintain those levels of fear and panic for that length of time so eventually it subsides once you start your treatment and you just get on with it because you dont have any other choice.
You will find this website absolutely invaluable for support.Even with loads of well meaning family and friends it is not the same as the women on this site. Anything you want to ask ,just ask and someone will reply!! I found personally that the more I found out the better I could deal with it but not everyone is the same.

Jackie

Thanks Jackie, hope all is going okay for you? I think that you’re so right in that it impossible to maintain the feeling of fear for a long period of time as it’s so tiring and not the best thing that we should be doing to our bodies! What I would give though for a good night’s sleep???Everyone here seems really friendly and helpful and its reassuring for me as just diagnosed to hear of other ladies who have gone through similar feelings etc and give me hope that it DOES get better. How are you coping with your chemo?x

Hi Sausage.
I agree with the ladies above.This website is very vital for support and information.It is normal reaction that you are feeling.i had my first BC inNov2005 and had mastectomy on the right breast with lymph node clearance ,taken 21 and 4 were cancerous.Although I dont have any implants like yourself, may I say that as soon as the wheel is in motion of knowing what is it to be treated, and knowing that the treatment is available, you will eventually and slowly get the hubg of the treatments.Im not saying its easy but knowing what we are tackling helps a lot.I found that acceptance of the situation made it easier for me and my constant research for information,terminologies,treatmennts ,scans and everything else makes it bearable.Im a sort of person who wish to know what is being done with me and its consequences ,so that I know where Im leading to.I had mastectomy in Dec2005,chemo from Jan06 to July06 then radiotherapy Aug to sep06.Been offsick for 18months then went back to work for a year until Mar08.Unfortunately,I got another primary on the left to contend with but this time only lumpectomy and node clearance too.Hence,im on chemo again then radiotherapy towards the end of the year.With your strength,acceptance and awareness of your journey ahead,you can do it,survive it.The protocols in the Uk for Breast cancer is so organised that we at least know what is the path ahead although it is a bit difficult.We all are different people and will surely have different reactions to whatever chemo drugs /regime given to us.Just make sure that you communicate all/any side effects you are having so that the oncologist will know what /how to remedy any side effects.

Regards
Veeluz

Hi Sausage!

Just got back from 2nd Chemo and at the moment feeling fine! Im amazed because as I said to you before I was so terrified - see thread terrified but puting on brave face. My worst fear was the chemo more than the cancer and hear I am moulting like a chinchilla cat and sitting smiling in the Chemo suite!!! I have bought 2 wigs and my daughters have been doing sketches from Little Britain in them which has helped to take some of the fear away and I have to say(cant believe Im saying this) I cant wait till my hair has gone!! Ive got some trendy hats and two wigs - one is my sensible one a lot like my own hair short and blonde highlights, the other is called Boogie and is dark burgundy permed long hair. This is going to be my naughty wig!!! Once you know exactly what is going to happen Im sure you will feel better and in the mean time talking on here is one of the best things you can do!!xxxx

Hiya Jackie, glad to hear that your 2nd chemo went well, you are one brave lady!!! Your wigs sound gorgeous, especially the burgundy one, very ABBA like!!! I have had another day from hell! Been to see the surgeon who will do my mx around my implant and node clearance and she was great. Very positive and I was so surprised that she didn’t look at me with two heads when I was really concerned over how my boob would look like after she had taken the tissue away. Everything was goimng fine until when I came out I lost it with my family and fella!!! They just kept saying that it was all okay, only a grade 2 and not life threatening so it was great news. Well… AAAAARRRRGGGHHHHH!!! I told my dad and my fella that I’d arrange for them to lose one bollock, lose their hair, not work for a minimum of six months, look and feel a wreck then take Tamoxifen which will stop them being able to father a child and then turn around and tell them that its okay…its only a stage 2!!! If that’s not bad enough, I then left a voicemail message with my Macmillan nurse telling her that I didn’t want to go ahead with the treatment and don’t try to convince me otherwise!!! OOPS!!! I’m now sitting here feeling totally awful, my mum and dad have been brill throughout all of this and I can’t belive that I told them to f****off!!! I hate myself for feeling this way and for hurting people who love me. It was the “its nothing” statement that made ne lose it!

Hey sausage!

Its understandable you exploding! You’re angry, bloody angry and there is only your family there to take it out on. I would apologise for the outburst but make them understand that Grade 2 is not nothing. If you research on here size of lump, whether your nodes are affected etc. it all affects how serious it is. But at the end of the day they are probably hoping to make you feel better. Inside they are probably more scared than you! Got to go now I’ll try and come on here later. Keep your pecker up and there are some positives out of this. My daughters are not arguing over rubbish any more, we have never laughed so much (believe it or not) as well as cried. The wigs have caused hysterical laughter (they were my worst fear).xxxxx

hi sausage,
I too have lost it with several people over the "you’re so lucky it’s been found/it’s only grade 1/you’ve only got 1 node malignant/think of all the brave children on leukaemia wards comments.
Since when was a diagnosis of BC lucky?! Or not life threatening? I feel like I’m going to my execution every time I have to go to the breast clinic!
I had a WLE with lode clearance in July and re-excision in August - am now starting chemo on 2nd 0ct, 6 months after I was initially referred by my GP.
It’s natural to be angry, don’t worry, your mum and dad will understand that it’s not the usual you telling them to f*** off.
Irina xx

hi sausage
i am waiting to see my cons. tomorrow to get my diagnosis. breast nurse has told me i have malignant in both breasts and told me i will need surgery on both. will get the full picture tomorow. scared and frightened at the moment. on sat night i lost it too. dont usually swear but my daughter copped it. i am sorry and embarrassed now but she understands, bless her, dont know what i would do without her. im sure your family will understand too i think they are just trying to reassure you, although i know it is hard for you and for everyone going through this tough time. good luck with everything
ang

Hi sausage and others. Just wanted to say that I am on a similar journey, diagnosed July this year, so not really an “old hand” at this yet, (hoping and praying that I get to be one though) and reeling with each bit of new information which comes from my ONC.

I also agree with Jacqui 28 that people who love you hang on to any bit of hopeful news to make you and them feel better, which I expect is why they will keep mentioning the grade 2.

When I was very down and desperate recently I posted a topic under the “targeted therapies” section, titled “Herceptin, is it worth it” - and was amazed at how many success stories are out there. Regardless of your HER2 status I would advise you to have a look, as there are people surviving NED many years after a similar diagnosis to yours.

I hope all goes as well as possible for you. Jin

Hi Sausage,
So sorry you have had to join us here, but as the others have said, you will find a great deal of support and info here. I was diagnosed back in May with a grade 3 bc with 2 lymph nodes involved. Have had lumpectomy and have got final chemo (last of 6) in 3 weeks time, then rads and tamoxifen for 5 years. Like you, I was terrified, angry etc when I received the diagnosis, having thought I had looked after myself reasonably well over the years. We all feel terrible shock and sadness when we receive the bad news and all the feelings you are going through are perfectly normal. As others have said, once you get your treatment under way you will start to feel differently - I couldn’t wait to get going as it then felt as if I was giving the cancer “what for”. Try not to be too hard on yourself - I know it is difficult with the things that friends and family often come out with, but usually it is because they are also afraid and don’t know what to say.I hope that all goes well for you

Julie

Hi Sausage

Take a deep breath, life will never be the same again, it has changed forever BUT each day you wake up is a good day. Once you have cancer in your life, unfortunately you can never go back to cancer free days. You have stepped on this hideous rollacoaster and it is taking you on a journey you really don’t want to be on. Take all the support you can get, accept help and keep logging onto these wonderful Forums, you will find the extra info invaluable,

best of luck,
PinkPip

Hi, I am over 2 and half years since diagnosis, I was 37 when it all kicked off. I had a mastectomy, full node clearance, 8 chemos, 5 weeks of radiotherapy, a year on herceptin, and finally ovaries removed. What a ride it was… my worst experience was losing my hair, I found that so hard to deal with. I didnt care about the mastectomy at the time I just wanted the cancer cut out. I am still wearing a false one but maybe one day I will go for reconstruction. I just wanted to say you will experience a whole range of emotions and I hope you have support from friends and family, I was overwhelmed with the support I had at the beginning and was very touched by everyone’s concern. Also, dont be scared of the treatment, none of it was as bad as I feared it would be. I wont be patronising and tell you it was a picnic and try to be positive, but I will say try and keep upbeat and dont let everything get you down.

I feel absolutely fine now, my hair has grown back to how it used to be, and sometimes I think god did I really go through all that. I know your just starting with everything and it will seem like its never going to end but it will and you will get through it.

Anyway, best of luck for the future.

Hi Sausage: Don’t normally post on here – use the Good Buddies on the Chemo thread – but came on here for more info on the DCIS.

My story is almost the same as Julie, I am 61, dx in Feb, WLE and lymph clearance in March, started chemo end of May and will be finishing E-CMF on 25 Nov. My op was v. successful – got all cancer out, good margins, 24 nodes removed 1 cancerous – how when it is DCIS not sure – on list for onc at next meeting. Mine is also Grade 3 – got the path report at home but can’t remember any of the other info – that is Chemo brain for you!

My next treat is rads followed by whatever for 5 years – haven’t decided what it is going to be yet.

I was completely stressed out when diagnosed – I have never been ill apart from silly colds in my life and admitting I have this bloody disease when I felt totally fit and healthy was ghastly. I lost 10lbs in three weeks just down to stress – unfortunately it has come back on! Now I am this far down the road I am more relaxed about it but then I have been very lucky – apart from the hair thing I have had NO side effects – no sickness, poorly mouth, nothing. Every time I go I treat it as the first time and don’t assume that because it has gone well so far, it will continue to be OK.

Once you get your head around it and do the research – some of which is scary – and get a grip on what is happening to you, you WILL feel better. Look on lots of the threads on here – there is so much information that you never get from the professionals – they haven’t had the disease and everyone on here has.

When you get to the wig thing, get the best you can afford. There are some great ones out there – look at the Raquel Welch – I have two to alternate my look.

As we all say, you will get through this and don’t worry if you take your temper out on other people – I have a very short fuse at the moment and unfortunately my poor husband is catching most of it! He will survive!

Take care of yourself.

LOL

Julia

Ignore the refernence to DCIS - got me threads confused - bloody chemo brain!!!

dear sausage,
first of all I send you a big hug !
I was dx in july 2004, a few weeks before my 40th!
I truly remember that awful feeling of pure terror, that I have never experienced. I remember shaking with fear, never thinking that I would come through this.
What helped me in these early days was i used to cut out and keep any press articles which printed positive things about BC- how treatments improved etc. and what was the most inspiring of all were the stories of those who were diagnosed yrs ago, 15, 20, even 30 yrs ago - all still alive and enjoying life. When I had a low moment, I would get out my “positive” stories and read them- if they’ve managed it after all these yrs then maybe I will be able to too! Don’t read the negative ones, just focus on the good ones. There are many actresses etc who are also many yrs down the line- Olivia Newton John (?15 yrs, ) actress from neighbours(cant remember her name!-clear for over 20yrs…)
Remember, these great stories have to give us hope. None of us know what is round the corner but by remembering the happy stories only may help you move foreward
Take care, Anne x