Scared

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21

Hi Ladela
What can I say except ***** on this **** disease.
When I had my mammogram another lady stated that this brought all women to the lowest common denomonator. How true. Even though I was given all clear, I still have thoughts that maybe they made a mistake and it is there. It certainly does appalling things to your mind. The tests and waiting for results I can’t compare to anything else in my life. As unlike when dealing with my son’s major health issues I was unable to put on the brave front and ask the questions I should have.

Please try and stay positive and do whatever you think is best for you regarding the double mastectomy. I will be thinking of you and will keep looking out for your posts. What area do you live in, do you have close family support?

22

Dear Ladela

I am sorry to read of your recent diagnosis. You may find our helpline useful to call, it is run by specialist breast care nurses who can help you through this difficult time, listen to your concerns and offer information, advice and support. They are on 0808 800 6000 and open Monday - Friday, 9am - 5pm, Saturday, 9am - 2pm. In addition, Breast Cancer Care have published a Resource Pack, it has been designed for anyone newly diagnosed with information to help you better understand your diagnosis, test results and various treatments, it is available via the following link or by contating the helpline: breastcancercare.org.uk//content.php?page_id=7514 Also, . I do hope you find this information of some help.

Best wishes
Katie

23

Hi,

Demi, and all the other girls, what can I say but a huge thank you for all the support you give. You don’t know how grateful I am for your support. This is one of the best things I have done since this started, signing up to this forum, thanks. Demi, I live in the New Forest in Hampshire, a very beautiful place to live and I am lucky that I have the support and love from my son, husband and family of whom I am very close. We are just shell shocked at present, as we haven’t had much luck lately, losing my mother 13 years ago, to cancer, my grandmother and my husbands father the same year, that was 1995. Then 2006 I lost my beloved father to lung cancer and just before Christmas last year we lost my husbands mother to a stroke, just coming to terms with all that and wham another body blow. Don’t know how much more we can take. But it’s funny I seem to be able to tell you all exactly how I feel much better than I can talk to anyone at present, perhaps I can explain better how I feel on paper rather than in words.

Thank you all once again for your help and support, I will be logging on regularly.

Best wishes
Ladela. xx

24

so sorry to hear your news. makes me feel even more grateful that my lump is benign. good luck with the treatment. as you say it is caught early so onwards and upwards.

jane

25

Hi Ladela,

Just seen your comments on the thread and thought I would say hello. I have been posting here since my diagnosis on xmas eve. I was 1.8cm ductal invasive grade 2 er/pr + and have had the lumpectomy and node surgery (they usually do them at the same time so make sure you ask your surgeon) I know your head is spinning right now but if you have a quick read down the Newly Diagnosed thread ther is always someone a bit further along the line than you who has good advice, help or even a shoulder. Everyone has been lovely and there are som fantastic ladies I am in touch with in here who have saved my sanity.

Mine was right under the nipple too but they managed to save most of it ,I have lost about 1cm off the left side of my aureola and a cup size off my breast, but my nodes have come back clear so no spread and all the margins around the tumour were clear too. I found my lump on the 10th Dec and the op on the 10th Jan and now its all out of me. I have an appointment with my oncologist on 28th Jan (monday) for my treatment programme. I am definately having hormone therapy and radiotherapy but the jury is out on chemo but like I said those lovely ladies have made me realise even chemo is a good thing and I am now so ready for whatever it throws at me I am just thinking of it eating up anything that could do me harm.

Honestly you will have good days and bad and sometimes peope (mainly well meaning family and friends)will drive you mad. Good luck with everything it may not feel like it right now but you are in the company of some fantastic women with far more strenght than me and I feel enormous pride that they keep in touch with me and have held my hand every step of the way.

Love luck and ((((Hugs)))) Shonagh xx

26

Thanks Shonagh, that means a lot,
Will keep in touch with everyone,
Ladela xx

27

Hi Ladela

So sorry to hear of your diagnosis. You are bound to be concerned and upset at the moment. I was diagnosed in Nov last year - had right mastectomy and full node clearnance. Pathology showed 29mm aggressive grade 3 tumour, with 5 of 11 nodes affected, HER2+ - and quite frankly just didn’t know where to turn. I am 46, with two kids, one 21 (getting married this year) and one of 9, both girls. I, like you, just couldn’t help thinking how much more living I had to do, how much I had to see etc etc and just coudn’t see how I was going to achieve this. I lost my mother to bowel cancer 14 years ago, and the first husband, my eldest daughters father, died when she was 9 from lung cancer, my sis in law also passe away to lung cancer 5 years ago, and another sis in law is currently in remission from cervical cancer. It just all seemed like too much to cope with.

However, once I had been given my treatment regime (which I must confess seemed extremely daunting!) - 4 x fec chemo, 16 x rads, 4 x taxotere chemo, followed by a year of herceptin - I began to think that maybe I could get through this.

I am now just about to have the last of the 4 x fec - and whilst the chemo wasn’t particularly enjoyable lol - it was do-able. You somehow find an inner strength that you didn’t know you possessed that get’s you through the various stages - you will be surprised.

Like you I have the support of my family - but what you say about being able to express yourself better on here is true for me too. I find it far easier to write down my feelings. But also, when you type on here, you know that someone who has been through it will understand what you are saying. No matter how supportive family and friends are I truly believe that, unless they have been there, they will never fully understand either the physical or emotional strain that a diagnosis of cancer brings with it.

Please keep posting and let us know how you get on

take care

Margaret x

28

Hi Margaret

Here I am again, can’t sleep, have work at 7.30 am tomorrow morning, full day tomorrow until 6pm. Just can’t sleep lots of stuff going on in my head, had not too bad a day yesterday but today not so good. Especially tonight, very angry and emotional. You sound like a wonderful person Margaret, and I hope you also find the inner strength to carry on with your treatment, you sound like you have a wonderful family behind you, keep that thought…

My family are great but already (I am only three days into my diagnosis) I am fed up with the words, be strong, you can beat it etc. etc. etc. What the hell do they no, it’s easy to say that stuff when you are not going through it. I know I will get through this, but at the moment I don’t want it, I want the op’s to be over tomorrow, I don’t want to wait another 3.1/2 weeks before I know the outcome of the lymph node test, I want to know now. Also I’m wondering whether it is best to have both breast mastectomy to get rid of the chance of it coming back again, I don’t think I could bear that. Sorry feeling sorry for myself tonight, not so good, usually I am a very strong, bouncy person who everyone thinks is the life and soul of a party, you know what I mean. Well tonight I’m not, just fed up and as I say, feeling sorry for myself. Ho hum.

I feel worn out and I’ve only just started this journey, perhaps I should go to the GP and get some calming down, go to sleep tablets, but then I have work, and I don’t know what to do about that. Anyway, questions, questions.

Thanks Margaret for listening to me dribble on, not a good night, thanks for your valuable input and general kindness, you are all on this site just amazing people. I apologise for being like this tonight, just not good.

Take care and thanks again.
Speak soon,
Ladela xx

29

Hi Ladela

Please don’t apologise - believe me we have all been there - if you were to look for threads with the word ‘apologise’ in them you’d find tons lol

That’s exactly what the site is for - having a good old rant and venting your feelings! We all have some idea of how you feel - and whilst we probably can’t help with everything, at least we can be a ‘sounding board’.

Believe me, before this is over you will have heard many different takes on ’ be positive’, stay strong’ ’ oh aren’t you brave’ - in my case initially I just smiled sweetly and nodded - unfortunately the further I have got through the treatment the less subtle I tend to be! I now usually respond with ‘I’m not brave, I don’t have a choice if I want to survive’ - and ‘How positive do you think you would be in my position’ - not always nice but sometimes you are just at stretching point and something has to give.

I’m just like you - always considered by the rest of the family to be the ‘crazy one’ that everyone wants at their parties - when hubby tells them how he has just listened to me bawl my eyes out for hours on end, and rant at him endlessly - they seem quite perplexed as to why i get like that ???

Funnily enough - re your reference to only just starting this ‘journey’ - I used to call it a journey, until I read another thread on here from JaneRA - and it made so much sense. Cancer is NOT the journey - your life is the journey, cancer is just a small detour on the way that you need to fight before you can continue the journey - makes the whole experience seem much more positive.

I’m also sorry you are having to wait so long for tests results. I was fortunate (if that is the word) in that mammo/ultrasound and biopsy results were all available within 30 mins of tests and lymph results were given to me 6 days after op.

You are entitled to feel fed up - and sorry for yourself - we’ve all done that - and still do. I have many nights where I can’t sleep - like now, where I sit and try and work out what I did wrong - but at the end of the day, it isn’t something I can change, so it doesn’t seem worth dwelling on it - you just have to go forward and hope that the treatment does what it’s supposed to do.

I have never bothered getting anything to help with the sleep - I’ve never been a particularly good sleeper - and I’m not a tablet taker unfortunately - takes a blinding migraine for me to go anywhere near the paracetamol lol. I’ve probably taken more tablets since starting the chemo than I ever have in my entire life lol.
But if it’s becoming a problem, you should maybe seek advice from your GP or your breast nurse to see if they can suggest/prescribe anything. I must admit if I do have anything that requires treatment - i speak to breast nurse first because hospital pharmacy provide tablets/medicines free of charge whereas GP gives me a prescription I have to pay for!!

Hope you manage to have a good night

speak soon
Margaret x

30

Thanks Margaret, take care, speak soon.

I’ll try going back to bed soon!

Ladela xx

31

Hi Ladela,

Just to let you know there is light at the end of the tunnel I got my treatment programme yesterday. Its 19 radiotherapy sessions, 5 years of tamoxifen(tablets every day to stop oestrogen) and 2 years of zoladex (monthy injections from GP to stop my overies)basically its an early menopause but no chemotherapy and with the treatment programme my survival percentages for 10 years + are 94% so thats pretty good odds.

I hope this makes you feel a bit better esecially as your lump is 7mm and in a similar position to where mine was. I was so ready for chemo, had my head shaving party organised and everything so yesterday was a bit of a surprise to say the least (a nice one for a change…remind me I said that when I start complaining about the hot flushes!!!)

I know what you mean about being sick of the “be strong” comments. I personally found the “think positive” line from well meaning relatives really patronising. I find it uplifting when a fellow BC Babe says it because they are there with me but when someone with no concept says it to me it makes me want to scream. Also added to those annoying comments “You look really well” “you’re so strong” and “are’nt you lucky they found it so early”. Grit your teeth honey and dont forget we are always just a click away.

Love and luck Shonagh xx

32

Thanks Shonagh, let me know how you go, good luck.
Ladela xx
PS how big was your tumour? What BC do you have? Thanks x

33

Sorry Shonagh, just read your message you sent above again, you did tell me, sorry. What does er/pr + mean??
Thanks, ladela xx

34

Hi ladela,

No problem i was ( and I mean WAS as its all gone now) 1.8 cm(180mm) grade 2 ductal invasive. I had 5 nodes out which came back clear and all the margins round the tumour were clear too. At first they said i would have to lose the nipple as it was right underneath but in the end they saved it (just lost about 1cm from one side of aureola). my er+ was 100% and my pr+ was 80% my HER2 status (if you are suitable for the herceptin drug or not )was negative (another reason no chemo needed)

The er/pr is the hormone receptor status. Some tumours are almost feeding off our hormones so er is oestrogen and pr is progesteron. If your are + your are hormone positive if - your are hormone negative. That is why they feel the 19 radiotherapy plus the 5 years of tamoxifen and 2 years of zoladex (tamoxifen to give me a fake early menopause…i’m 39… and zoladex to shut down the overies to stop me producing the hormones and stop any future cancer from feeding off it) will be the best chance for me. There is a small increase of 0.8% if I have chemo but as my 10 year survival is already 94% me and my other half had already decided if I was anything over 90% anything else would be a bonus so I am happy to take the chance especially as we ae monitored so carefully and often and it hopefully will mean I can get on with the rest of my life a little quicker than first thought.

When I first went they talked about chemo a lot as pre menopausal women get the most mileage out of it and I was really prepared had organised hair cuts and shaving party the lot so was completely surprised when they came up with my treatment programme. Luckily me and the other half had already discussed the possibility of being given a choice and had a plan in place just in case they did.

Hope you have managed to get some sleep, Margaret is right… I just couldnt sleep at first and caved in and got some tablets from the docs. They helped loads and didnt make me drowsy in the morning like I thought they would but you have to be careful using them…a goods nights sleep becomes a bit of an addiction in itself. Get all the help you need dont feel you are being weak. If you need something just ask this is a steep learning curve but we all have to start somewhere so dont beat yourself up about your fears. You are allowed and you dont have to be superwoman. I didnt stop crying for the first week but once they told me the grade etc I seemed to be fine. Cried loads on New Years Eve and my last day at work before surgery was a bit wobbly but since the op I have been OK . Too busy with appointments and getting better.

Thinking about you. Love, luck and (((Hugs))) Hun. Shonagh xx

35

Thanks Shonagh, that’s a huge help and you have made me feel more positive than I did last night. I didn’t have a great night but hey today is another day. I’ve got an appt with Doc. on Friday am perhaps he’ll give me something in case I am desperate for some sleep by then!!

I have my pre - op assess next Thursday and the op’s on the 12th Feb. I’ll let you know how I go. Hopefully it will all be great news, I am just a bit wobbly about the node tests, but I know they have to be done. The only thing is I have to wait for another week after the op to see if it’s in the nodes or not. Just praying it’s not. Trying to keep cheerful as much as poss for my family, sometimes its a slog though, you know what I mean…

Anyway it was great of you to answer my posting and keep in touch. Good luck also to you and your family,
L O L Ladela xx

36

Hi Ladela

Hope you’re well - you sound much more ‘on the up’ now - though I know it’s not easy. That’s me just had the last of my first 4 cycles fo chemo - three weeks off and then onto radiotherapy for a while. As I’ve said before - it’s not overly pleasant lol - but certainly do-able! Have just been on the internet and booked a wee short break to the lakes for my youngest’s school holidays in April - fortunately it coincides with the end of my radiotherapy and the start of next cycle of chemo - so will give me something to look forward to!

I also had to wait a week after op for node results - though it seems lke a long time, it is surprising how the time passess - once you get ‘recovery’ time out of the way from op and get back to normal (whatever that is - I’ve forgotten lol!) - the week will be almost over.

Good luck with it all - take care - there are some good threads re what you need for hospital etc etc on here - unfortunately with chemo brain kicking in I can’t remember where they are - probably in the ‘Undergoing treatment: Surgery’ thread?

Margaret x

37

Hi everyone,

Not having a good evening, just got myself mentally prepared for the ops next week, and guess what, the b***** hospital has cancelled next week on me. Says the consultant cannot make it. It is now postponed until the 26th, another two weeks. I know that doesn’t sound like a long time, but in my head it’s forever. I just want this damn thing cut out of me and thrown away. To enable me to get the radio therapy out of the way and start to look forward to life again, because I feel suspended in mid air at present, waiting for something to happen. I am so upset, I cannot tell you, I don’t know if I can stand waiting another three weeks, then another week for further results. What’s going on…

I’m sorry girls, just so upset tonight, what happens if they cancel again, can they cancel again, oh I don’t know.

Just sounding off, had enough today.

Thanks for listening to my dribble,

Ladela xx

38

Hi Ladela,

Poor you I was delayed by just one day and it nearly sent me over the edge so god knows how you are feeling. Go into the garden and scream if it helps or just cry your eyes out like I did.
My op was delayed because my surgeon was ill so they booked me in with the other surgeon instead. He was actually better (hope he doesnt read this he is a lovely man but a nipple is a nipple) and managed to save my nipple, which under the original surgeon , was going to go. Perhaps they have more than one consultant at your hopital?. Ring them tomorrow and see if they do have more can you be added to their lists. Its worth a try. They can only say no.

Nothing anyone can say can make you feel better and I know what you mean about just wanting it done now.
((((Hugs)))) Shonagh xx

39

Hi Ladela
I too am very sorry that you have had surgery postponed. I totally understand how worrying it must be/is. I am a few weeks in front of you. My WLE and SNB was on 18th Jan, but will not have the results of the biopsies till this Wednesday and the wait has been insane. I have now got the the stage where I really cannot worry anymore. I have told myself not to worry cos if it was anything too bad they would have seen me sooner!
I hope that you can find as many distractions as possible over the next weeks, I blitzed my classroom, (even went in at w/e) and house during the run-up to my op. Also drank quite a bit more wine in the evenings. Nothing since surgery though! Very sensible.
Yes this site IS very good in terms of letting off steam, sharing your fears, worries.
Thinking of you Alice
xx

40

Hi Ladela

I’m so sorry you hav had your surgery cancelled. Can completely understand you anxiety. I think that is the worst thing about being diagnosed - the complete and absolute feeling of being ‘out of control’ - everything is down to someone else and there is very little you can do about it.

As Alice says - you need to try and stay focussed on getting other things done and out the way - (have to say I agree with the drinking bit lol - in moderation)

If nothing else - you just keep coming on here and letting off steam - we’ll all be here for you - we might not be able to do anything constructive but we’ll listen and you might feel better lol!

take care

Margaret x