What should I do ?

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21

Wow I can’t believe there are so many posts on here.I am new to this I was diagnosed on 7th April.
I am a 32 year old mother of 3 who supposedly ticks no boxes other than taking the pill.
Sorry haven’t a clue exactly what it is I have apart from that it’s grade 3 er+ with lymph gland involvement in 3/10.
I had my first stint of surgery on 22nd April and had a partial mastectomy. The initial thoughts were that the tumour was 1.5cm in size.
I came through the op brilliantly and like most mum’s got back into normal mummy mode very quickly. I got my results from the first op less than a week later only to be told my margins weren’t good, apparently the cancer was right to the limits of the tissue, the tumour was 2,5cm. So I was back in a fortnight after my first op to have more “healthy” tissue removed from the breast.

When I was told I needed more surgery I discussed with my consultant the possibility of having a full mastectomy but he adviced me that a partial with good margins and radiotherapy was of as much benefit. He also commented that he was reluctant to do it because of my age, what that has to with I don’t know.
I don’t think that he adviced me on this because it is his preferred procedure as he carried out a full mastectomy the same day I had my inital operation.

I have been fundraising for Cancer Research for about 6 years now and I chair the committe who organises the local ‘Relay for Life’, this event is a bit unique ait is all about hope and cure. Every relay has survivors opening the event and they get treated on the day by the committee. Being involved in this helped me to tell my 2 older kids. Kyle is 11 and Luke is 8. Kyle’s words were “Oh Mum you can wear your survivors t-shirt this year”. A survivor is anyone who has had a diagnosis. I also have 2 neighbours who have had full mastectomy’s on one side with reconstruction and are healthy happy ladies. They are both in remission and doing brilliantly and yes they have been an inspiration and help to me and the boys. My breast care nurse also gave me a booklet on telling my kids which was a help. Everyone else seems to be taking it worse than me or my kids.

I had my WLE 3 weeks ago yesterday and I am still not driving, too be honest everyone has been offering to take me everywhere and at the moment I love the company. I have had a couple of short drives but nothing long. I have been off work since 16th April. I am a science teacher in a secondary school and I just couldn’t face it really. My arm is quite sore still and have little sensation of feeling at the joint on my back, they say it may never come back. My wound under my arm has healed really well and is a very small thin line for a scar. I do my exercises most days but try to use my arm as much as possible without strainging it.

Wow I do know how to rant don’t I. I hope this is of some help in your decision, probably not though. I am glad I didn’t force the full mastectomy and if I have to have more surgery then we can discuss it again.

Take care
L
xoxo

22

Hi leeloo

I don’t think you rant at all. I emjoyed ready your post albeit sorry you too have been dx with bc. Excellent on the fundraising you do.

I am thinking about trying to do something for the Strawberry Tea fundraising they mention on this site. Need to get my chemo brain into action.

Right I had better get my kids up for brekky…

Take care

P xxxx

23

Hi Anne

Just as Cathy59 says Rads isnt that bad at all. I had 5 sessions a week for 6 weeks, i dont know what i was expecting but the scaiest part for me was the first time as i didnt know what to expect, being honest im a scardy anyway haha, the only problem i had was my nipple was very tender but they gave me cream and that worked. When i had my op i was back driving 2 weeks later i wasnt told not too but as i said in a previous thread it seems that in England you are given more advice and explanations about things, im from Scotland. I found Rads tiring so i went back to work 4 weeks after i finished. Everyone is different Ann as you have read, take it one day at a time and go with the flow. Good luck in telling your kids i found that the hardest part my boys were 13 and 10 and wow what do you say to them!!.

Sending My Best To You And Your Family
Allison xx

24

Hi Ally

My in laws are back off holiday tonight and we are going over to tell them tomorrow night, once they know and the boys know I can tell everyone else. It will be a relief to get it over with. Have decided as I have quite a large group of girls that I see regularly. Old mother and baby group, mums from school, husbands friends wives. That I am going to let them know by text, I know it sounds a bit heartless but I can’t cope with explaining it time and time again, and them getting upset and having to reassure them. Then trying to get each group together at the same time so the don’t learn second hand would be a nightmare. Am also going to tell them my test results are a couple of days later as I remember all of the phone calls I got when I told everyone the day I was going to be induced. Do you think this is ok or have you any better ideas.

Love

Ann

25

Hi Ann

I think your texting idea is a good one. I told a lot of people by e mail, partly because I wanted everyone to know at once and I wanted them to know the truth rather than hear half a version. You have to change your mind-set and look after you first, at least that’s what I’ve found.

Good luck!

Kinden x

26

Hi Kinden

Nice to hear from you. How are you feeling after your op? are you coping ok?.

It’s my day off today and i’m meeting the mums from school for lunch ( once a month thing ) it’s going to be a bit weird as i’m going to text them on Mon/Tues to let them know. Added to the fact that I don’t feel hungry and am driving so the wine is out!. It seems like a waste of a good afternoon in the garden.

Will keep everything crossed for you on the 20th.

It would be lovely to hear from you and all the other ladies who have been in contact

Love

Ann

27

texting or email is the best idea - or tell the friend with the biggest mouth and she/he will do the rest!! Seriously, having to keep explaining to everyone and then them saying the usual is very very tiring and not what you need. Select a few very close people to tell and then don’t worry too much about the rest. I have only just told my friends (not the closest ones) a week ago cos I couldnt be bothered with all the questions etc. Think of yourself and reserve your energy.

Cathy
xx

28

Hi there Ann

I have been following your thread and thought I would firstly say sorry you had to join us but hello.

I was dx Dec 07 with 1.8cm grade 2 IDC no nodes involved and after surgery the path results came back as margins clear and HER negative. I initially went with a lump that turned out to be a cyst in the left breast and only found out I had cancer in the right because they mammogram both sides. I am 39 and was 100%er + and 80%pr+ so the treatment programme I was given was WLE/SNB 15 sessions of radiotherapy and 5 electron boosters (same as rads but smaller targeted area around where the lump was removed) 2 years of zoladex to shut off my ovaries (will be having them out in 2 years as still pre menopausal) and 5 years of tamoxifen. I had my op on the 9th Jan and was lucky to be able to stay off work for my whole treatment. Finished rads 18th March and went back to work on a phased return 1st April. I have just finished my first full week back.

When I was first dx I wasnt in touch with anyone who had similar treatment programme to me, all the ladies who were dx at the same time were having chemo as their pathology results were coming back as grade 3 etc so I thought it may help to be in touch with someone with similar prognosis. I was lucky in the respect that I was a D cup so they had plenty spare and my breast is the same shape just a cup and a bit smaller but not really noticable.

I hope everything goes well for you and your telling the in laws and friends isnt too difficult for you. I was dx on Christmas eve so you can imagine how bad I felt ruining everyones christmas. I found myself comforting other people and strangely apologising for giving them bad news.

If you have any questions feel free to ask. Good luck with everything. Shonagh x

29

Hi Ann

Thanks for your post. I’m ok most of the time. The wound on my breast is about 9cm and my breast is multi-coloured with the bruising, but that’s fine, it’s the underarn one that’s shorter but much sorer, which apparently is normal. My upper arm is really sore, but there’s nothing to see. I had the drains in for 5 days, so it coudl be that fluid is building up, but I’m not seeing anyone until next Tues.

Although everyone’s treament is different, I do feel that I am a cancer patient first and a person second at the moment, but I guess this is because it’s all so out of control at the mo, with not knowing how bad/good it is.

I’ve been reading other posts on here, and I’ve decided to regard this as a life sentence not a death sentence as some do. It’s a bit daunting being at the beginning of ‘the journey’, but knowing all the girls on here are out there is empowering. I’ve learnt some stuff on here that means I feel better informed as to what to ask on Tues.

Good luck with telling everyone. Let us know how you get on.

Kinden
x

30

Hi Kinden

It’s pretty horrendous really isn’t it. It’s really helpful as sad as it is to know that we are all struggling together. I know there is light at the end of the tunnel but it seems to be so far away at the moment. Amazingly for me I am really positive about it not sure if that will last, I suppose that might change depending on the results from my op.

Just off to bed with a nice cup of tea. Had lunch with the girls today didn’t feel like eating until I got there, and ended up having lunch a shared pudding and a glass of wine. It was nice just being the old me for a while and chatting about girly things. Hopefully after I let them know the conversation won’t change too much.

Will let you know how I get on with the in laws tomorrow afternoon, they are lovely people. They are Christians so I know there will be lots of praying going on for me shortly.

Hope the soreness doesn’t last too long and Tuesday goes well.

Thank you

Ann
xx

31

Hi Kinden and Ann,
Kinden I know what you mean hunny. My arm is still sore 3 weeks later, it feels like I have bad sunburn and keep getting sharp pains every so often. It is better than at first so hopefully it will improve. I’ve been doing my exercises but still can’t raise my arm above shoulder height.

Ann I told my closest friends face to face and they kept it quiet until I was ready for others to be told. Then I sent a mass e-mail/text to everyone. Everyone has been so supportive and yes there have been loads of candles lit and prayers said for me too. its their way of coping.

I too have been very positive and am in contact with people who have come out the other side and are fine and dandy.

I hate the fact that we are going through the same thing but at least we understand and can talk without worrying about upsetting someone.

Oh and hi to all the other lovely ladies on here too.

L
xoxo

32

Hi All

Woke up early this morning, breast is feeling quite sore where they did the biopsy. It feels a bit like mastitis, strange really as that was two weeks ago and it’s only bothering me now. Have never been a good sleeper and get a bit grumpy when Im tired. I can hear the birds singing outside so hopefully it might be a lovely sunny day, that should hold the grumpiness off!!

Hi Leelo

I noticed that your two oldest children are about the same age as my boys James is nearly 11 and Thomas is nearly 9. How did they react when you told them?. James is a lovely boy hugs me and tells me he loves quite often, so Im a bit worried he might get upset. Thomas on the other hand is very willful and stubborn so I really don’t know how he will take it. Am a bit annoyed at myself really. My mum and dad both died from smoking related cancer they were both in their 70s (late 30s when they had me the accident!), and I have drummed into the boys that if you smoke you will get cancer and probably die. Obviously now I’m going to have to do some backtracking. Once I’ve told them I intend to not really mention it again and go on as normal, and just let them know if any more ops are needed.

Have an appointment for Monday afternoon to get the results of the cyst they drained (next to the lump had some blood in it). Also to discuss some other stuff that was mentioned when they told me what the lump was. Obviously at that point I wasn’t really listening anymore once mastectomy and reconstruction were mentioned I sort of went into meltdown, but I’m ready for it now. Have definitely decided to go for the lumpectomy as I can always go back and have the other if the results are bad.

Off to the open day at James new senior school this morning, don’t they grow up fast!. Then off to the in laws for tea and bad news.

Lovely hearing from all of you out there. Let me know how you are getting through your days, good and bad.

Keep in touch

Ann

xxx

33

Morning Ann,

I asked my husband if he would be with me when I told them but he wasn’t. We have been having problems before I was dx and they obviously don’t go away just because you’ve got cancer. They were at my mum’s house up in their bedroom playing the xbox so I bit the bullet as they weren’t arguing etc. I jus went upstairs and told them that I had found a lump and that it was cancer and that I had to go into hospital to have it removed and might have to have some other stuff after. I didn’t want to overload them. Luke (8) asked what cancer was, so Kyle (11) told him it was the most common disease that kills people. I just laughed but didn’t say I wasn’t going to die, harsh as it sounds I don’t know that and I didn’t want to lie. I just explained about our 2 neighbours who had the same as what I got and that they had to get the lumps removed and they are still fine and healthy. Also Kyle just thought about the Relay and said I could wear my survivors t-shirt this year, I just hugged them and kissed them and told them we would fight this.

3 days later Kyle met my mate picking her daughter up from school and asked her if she knew. She said yes and that I was going to be alright and Kyle very quickly replied. " I know she is my mum is strong and she can fight this", when she told me I almost cried my eyes out.

The fuuniest thing though was when they came to visit me after the surgery and we leaving I asked Kyle for a kiss and he asked if he was going to get cancer, I just laughed and explained it doesn’t work like that. It’s funny how their minds work, he had kissed me loads at home up until he saw me in hospital.

I know there have been a couple of incidents in school where some boys have said I’ll die etc but Kyle just tells them to F**** off probably although he doesn’t tell me that he has and gets on with it.

Luke on the other hand has never mentioned it again. He is a very deep thinker and sometimes just bursts into tears weeks after an event and blurts all his worries out but he has said nothing and seems to be fine. I’m not sure he really understands.

My 2 year old daughter Abby is different she doesn’t know what’s going on, apart from the fact I have dressings on my boob and it’s a bit blue. But that’s a different story, it’s from the dye they used to locate my lymph nodes, very funny going to the loo and everything is bright blue, but it will make you look like a corpse straight after the op, if you have the same dye. My mum was worried but didn’t want to say anything and I had forgotten to tell her about it till later and she was so relieved.

Here I am rant rant rant again. Can you tell I’m not out much LOL and just talk to kids all the time.

Breast cancer care have a booklet called ‘Talking with your children about breast cancer’, the breast care nurse gave me a copy of it at the hospital. It doesn’t tell you what or how to say things but tells you what other people have done and what they think is a good approach.

After knowing the boys have been great, Kyle keeps forgetting my left arm hurts and hugs me dead tight there until I wince and he lets go and goes for the other side. On the only really bad day I had I was getting them ready for bed and apologised for crying but explained there might be more days like that, Kyle just said it’s OK mum you have nothing to worry about you are going to be fine. I just cried a bit more.

Be open and honest and they should be OK, let them know you are still there mum but don’t ignore them when you are upset as they will get scared.

I hope this helps
Lisa
xoxo

PS I hope everything went well at your inlaws today but I bet they will be as supportive as mine are if not more so.

34

Hi

As Lisa has said in her post, Breast cancer care have a booklet called ‘Talking to your children about breast cancer’ which may be helpful to some of you. If you would like to look at this booklet just use the following link:-

breastcancercare.org.uk//docs/talking_to_your_children_about_breast_cancer_0.pdf

I hope you find this helpful, thanks Lisa

Best wishes
Lucy

35

Hi Lisa

Your boys sound very much like mine. I was going to tell them this afternoon but I think I will put it off until tomorrow. Told the inlaws yesterday, had to sit through the football first. It was harder than I thought (for me). His mum gave me a massive hug and didn’t let go of me for about ten minutes bless her. It must have really sunk in yesterday as I started quietly crying in the car on the way home last night, had to go straight to bed so the boys didn’t notice. Cried for what seemed like ages before my husband came up with some tea and tried to get me to talk about it.

Feel really delicate this morning, still very teary and lethargic, I don’t really know what’s wrong. I think Im just feeling a bit sorry for myself It’s all a bit of a roller coaster ride of emotions up and down, and the uncertainty of what’s going to happen next. Not something we have had to deal with before.

It’s reassuring to know that your boys took it well. I think it’s the way you handled it. How are you and your husband now is he any support to you?.

It would be lovely to keep hearing from you.

Love

Ann

36

Dear Ann - Just replying incase anyone else isn’t up yet!! Sorry you have had a bad night. You do know what’s wrong Ann, you have been told that you have breast cancer. This is entirely devastating and life changing. Reading through your postings you have been so fantastic thinking how to tell your family and friends, and working out the best way to approach everything. You will be fine Ann, I promise, but sometimes you just need a really good cry, and to talk about your fears and how very very hard this all is. You are so right, this whole thing is a roller coaster, with no getting off in the middle. But I can promise you that you will have lots of support and care from everyone here. One of the great things is that everyone is at different stages, so there is always someone who knows what you are going through, or who is a little further ahead and can share their experiences with you.

I was diagnosed in November, had a wide local excision (and am so thankful that I was able to keep my breast), then had six chemotherapies, and now have had 4 out of 30 radiotherapy treatments. Not a lot of fun, but all very “do-able” (as we seem to say!). I think with children if you are OK, they will be OK. If you are able to just tell them basically the facts, but without showing your fear, then they won’t be frightened either. Good luck with everything, and please do keep posting here. Sarah x

37

Hi Ann
Well done on starting to tell people, it is such a difficult thing to do. My sisters knew frrom the start and came with me for DX cos OH was working away but telling my children [albeit 17 and 18 so not young children] was the hardest thing i have ever done in my life, I thought my heart would break but they came with me to tell my dad, my auntie [I lost my mum 16 years ago] and my in-laws. Fortunately OH was with me when we told his family cos I’m not that close to them.

I’m not telling you what to do and if you are feeling a bit fragile today maybe it would be better to put it off till tomorrow but the longer you leave it the harder it may get and the more people around them who know the more chance of them overhearing something or something accidently slipping out. It wont be any easier telling them tomorrow than it will be today but see how you go [I don’t want to seem forthright, no one has the right or wrong way of doing stuff].

I had the same idea as Cathy for telling The Masses, I told someone I thought would spread the news and, bless her, she was so shocked and upset about it she didn’t tell a soul so that back fired!

I have finished all my treatment and life is slowly getting back to normal but the whole experience is indented in my mind. I was in such a state of denial at the start that I went back to work for 2 or 3 hours a day 10 days after my op, absolutely ridiculous. I could hardly move my arm let alone operate a keyboard but no one at the hospital mentioned going on the club, the district nurse never said I needed to be on the club, I didn’t see or hear from my GP from being dx on May 2nd till I had started chemo in mid July so he didn’t advise me on anything really so I just announced that I was “fine” and getting on with life as normal. We live and learn dont we.

Good luck with telling your children, its not so bad once its all out in the open.

Lots of Love
AJxxx

38

Hi Sarah

Typing through tears! I know you are right as women we try to be so strong and look after everyone else and we always come so low on our own priority list. I have spent the last week thinking of everyone else how to explain and reassure. Have even been trying to plan food shopping and getting the washing done and all the other everyday jobs that (probably) won’t get done while Im recovering from my op.

Thank you for thinking about me so early on a Sunday. I know there will be many more out there crying today and Im thinking about them too.

My husband is great in a lot of ways but is not and never has been a big discusser of problems, sometimes I (hopefully) mistake this for disinterest. I have been jabbering on to him for the last week and although I know it is bothering him ( I found him at home on Friday sat in the garden in his suit and had been there since 2pm on a work day) I know the most I would get is one serious discussion and then back to normal. Thats why being able to talk like this is a real godsend, and I will keep on doing it as I am sure that I will be on and off the roller coaster for a long time to come.

Thank you so so much for your comments. I will go and have a shower and try to perk myself up as back to work tomorrow so don’t want to waste a Sunday moping around.

Please please please keep posting me, even if it’s just to comment on the weather. I can’t stand the thought of feeling alone.

Lots and lots of love

Ann

39

Hi AJ

Thanks for making me laugh!! the thought of your gossipy friend being speechless was really funny, aren’t people strange!

I was only thinking yesterday about how I was going to apply my make up (mask) and dry my hair with my other hand, and how I would probably end up looking like Co Co the clown!!

Can’t believe you went to work so soon, we do try to be super heros don’t we. I’m glad to hear that your treatment has finished. I suppose they have that much information to give us choices and options that they must sometimes forget the obvious ones ( you have had a serious operation and you need to take time to recover ) keep well.

Lovely to hear from you

love

Ann

40

Hi Ann

Your comment about doing your hair just brought back a memory of being post-op. My OH dried my hair for me but I wanted to use my straighteners so it would look “normal”, because I was “fine” of course. Anyway you’ve never seen such a sight, I had to get my head practically in my lap to be able to reach the top of my head but I did it.

I had my beautiful long blond [bleached] hair cut very short to try the cold cap which made me cry, the cold cap didn’t work so had hair shaved off which made me sob. Its growing back in a very unruly manner, OH keeps saying I need gravity to kick in to get it to come downwards instead of up and out but its getting there slowly. I put wax on it every day otherwise I look like an ever expanding cotton bud.

Just had to stop writing to pour olive oil into daughters ear for syringing tomorrow, ahh life goes on!!!

AJxxx