newly diagnosed and stunned

Hello,
I have read a few entries and this seems like such a great place to get support. I was diagnosed on monday and am waiting to see whether my mastectomy will be next week or week after. I am mostly, incredulous. I tick ‘no’ to all the high risk categories for breast cancer. I breast fed my three children, all under 10, for a year each. I am a fitness instructor who leads a very healthy life. At 40 I cannot believe this has happened to me. I am a small B cup and foolishly have not checked myself regularly. It was pure chance that led me to the lump. Do you think numbing the shock with wine is good idea!!!
Liane

Hi Liane

Welcome to our forums, I am sure you will find them a great help and get lots of support here. I’m just posting now to let you know of a few things you might find useful.
breastcancercare.org.uk/docs/bcu06_web_0.pdf

is a booklet for people who are just diagnosed and will give you some idea of what to expect.

You will also find the details for our telephone helpline in there. this service is run by expert nurses and can help you talk through any worries you have at the moment.

All the best

Louise

Moderator

Breast Cancer Care

Hi Liane

It’s one huge shock to the system when you are diagnosed. Everything seems so unreal, too much to take in and you really don’t want to take it in. As time goes by though you will find you adjust. There is plenty of information on this site - and do order the publications, they really are useful. Support wise there are a lot of lovely people that use the forums and will be there to listen. Most are people that know exactly how you feel, they have been there too.
have a hug

x x x

Hi Liane

Sorry you have had to join us, and you will get heaps of support. I like you thought I was pretty healthy and lived quite a good life, but alas did not check myself, it was only by chance that I did and was even then going to ignore, but thankfully didnt. Am 39 with 2 children under 4 and was completely shocked and my life turned upside down when i was dx’d. Not what we want.

I am not having masectomy though, as when dx on july 16 was then told 10 days later had already spread to liver, so straight onto chemo for me, and have just had number 5 yesterday, and one more to go. When/if you start chemo, it is doable and not painful, just remember if you suffer sickness or anything do tell them.

Let us know how you are and remember we are all here to support you and help you through this.

Take care
Love
Dawn
x

Dawn you have been an inspiration to me for several weeks now. Although I have (thank God) not get the dreaded bc I was very worried that I might have. I think you are absolutely wonderful to cope as you do. How on earth do you do it?

Dear Liane

I am so sorry to hear of your diagnosis, but as mentioned above you will receive a lot of support from this website and a lot of advice from everyone going through this.

Although we are told that all kinds of things “cause” BC I do not think it’s that specific, as you say you are fit and healthy and do not tick any of the boxes so perhaps it is just pure bad luck.

Either way, as Dawn says chemo is bearable, I suffered very little with side effects, a bit more so when switched from FEC to Taxotere but at times I have found the mental anguish a little harder to take. So just drop into the forum when you need advice, a rant or anything, and chat to us lot, I have found it a great comfort.

Cecelia. x

Dear Liane,
I was dx on 27th sept, like you fit and healthy, do not tick any of the boxes for high risk, breast fed etc…myself, family, work coll and friends all found it hard to believe (still do) because I eat a healthy diet, always kept myself fit and I am never ill.

I know how you feel!!!

It still hasn’t sunk in yet, even tho started chemo, I have had 1 cycle so far, I am having chemo first as I just couldn’t get my head around having a mastectomy…I know I will have to but not for another 6 months yet.

This is a brillant forum and has been a real source of help.
I wish you luck.
Have a hug, you deserve it.
Love Jackie.
Picked up my wig today and my 12 yr old boy looks better in it than me!!! Like a rock star.

Hi Liane, welcome to the club no-one wants to join. I am yet another ‘low risk’ person who was diagnosed just over a year ago. At the time, I felt the way I am sure you are feeling. It is horrible and scary I know, but one year on, I often forget it ever happened. I had a mastectomy and re construction. Luckily for me I didn’t need chemo or rads.
You have a bit of a roller coaster ride ahead of you, but keep positive, take all the support you can on this site, and although I know everyone’s case is different, there will come a time when it is all just a memory.
Love Heidicat

Hi Liane,

So sorry you’ve had to join us. Like you, I ticked none of the boxes, also breastfed three children, and never checked myself due to being barely a AA. How can you have breast cancer in a AA? Well, you can. I was 44 at dx in February, and have had a mastectomy, chemo & now doing rads.

You will be in a state of shock just now, it takes a long time to really sink in. However, we are all here to support you through whatever comes next. It’s not pleasant, but you will manage as we all do. The brilliant thing about this site is that we all know what you are going through. However sympathetic family and friends are there’s nothing like a bit of support from someone who’s been there.

Just make sure your (small glass) of wine is red - it contains anti-cancer chemicals.

Best wishes
xx

Hi Liane
I think we must be a part of a new group of “WE DONT COME IN TO ANY OF THE TICKED BOXES” i have 4 children all breast fed,i live a very healthy active life ,i walk my 6 Dobermanns at least 3 and a quater miles each day,i show them and my youngest is only 6 years old .
I start my chemo on monday then after they all finish its lump out then mor theropy of what ever they decide and i have not long moved house.
I found this happy joyfull bunch after i was d/x last week and wow what a great bunch of inspiration they have been lready to me ,and when i cant sleep at nights worring about how my life has been turned upside down i just pop on the computer have a read through the forums join in a few of the word games and it really helps to take your mind off of it.
Guess we will all get to know and help one another over the coming monthes so i hope we can help you as they have helped me.
anne

wow! how amazing to think there are so many of you out there who also should be ‘invincible’ against BC. I suppose we all fall into that category really. Thank you so much for all your kind words and tips. I can see I will be visiting this forum a lot because I do feel completely isolated as no-one around me has experienced this (fortunately). My husband suprised me with a new laptop today so I can stay in touch with everyone wherever I may be! I don’t think even he realised how comforting this would be.
Thank you all. How nice to know you are all there!
Liane xx

Hey Liane
Isn’t it a shame that we have found this forum because of an illness,maybe when we are done and dusted(positive thought look) we should still make time to visit the forums and be positive for the all that are to be stunned with this in the future’s i to am isolated like you,even my father said to me "that he wants to be the first member of our family at 81 to go up the burial ground " how did i feel about that the day after i was dx,ABSOLUTLEY GUTTED.
It seems we among good friends on here.
Anne

Hi Anne,
you are right! My dad’s response to my news was similar! Good luck for your chemo on Monday Why do some of us get given a mastectomy straight after diagnosis and others have chemo first?
Liane x

Hi Liane,

I am another “low risk factor” person. Not quite up to your standards on breast feeding front but breast fed both my children for 3 months. I have always been active, and spent the last 5 years teaching Pilates, and doing a gentle hour a day excercise. I also eat a heathly diet and have no family history of breat cancer in my family and I am 41.

Despite all this I discovered a lump at the beginning of May which I was assured was nothing to worry about. When it was unchanged a month later I asked to be referred to a breast clinic, despite my GP’s doubts. I had a clear mammogram and ultrasound scan, so when the fine needle aspiration results came back as abnormal I was stunned and devastated.

My journey was then to have an immediate mastectomy with the removal of my Sentinal lymp node ( the first ones) They were then found to have cancer cells in them so i had the rest removed a month later, and started a course of Chem at the beginning of September, and once this is over I will have radiotherapy.

None of this is easy, but I agree with the others that it is all very “doable” . Once your diagnosis sinks in and yoyr treatment begins you will find your own way of coping. I am still able to lead an active life and look after my children, I just need a bit more help with things around chemo time.

I bought a stunning wig which I wear all day every day, it is comfy and warm.

This site is full of wonderful and uplifting support, great tips on how to cope with each stage of treatment, so dip in to what you need.

Finally best of luck, and if you need any help we are all here to support each other.

Tracey x

Hi Liane
Actually i was given 2 choices either Mastectomy or Chemo the lump removal then either chemo or rads,and i just went for the second choice cause i thought as i am a large chested lady i would be very lopsided and somebody said that i wouldn’t be able to run as it would affect my balance don’t know so that’s why i chose to go down the road iam going.
Hey and Tracey join the club we are all in our 40’s in this club all have the same stats but hey we still have it and all have to get rid of-it what ever way we seem best.
All the best in how you go its just a inconveinece in our day to day running.
Anne

Hi Tracey,
It is good in a morbid way to hear your story. Do you think you will go back to teaching pilates? Thank you so much for responding. I may have to seek more info on your wig ‘shop’. I’m glad you are happy and that’s its comfortable.

Thankyou Anne, I can see we will be sharing many chats and it is so reassuring to know you are all out there.
As I am small chested, some people may not even notice I’ve lost one!! Will this be the first time in my life that I thank God I struggle to fit into a bra!!
Liane x

Hi Liane

Welcome to our exclusive club - sorry you’ve had to join us, but you’re amongst friends here and will find so much support, advice, encouragement and even laughs (our sense of humour keeps us going!)

I was 41 when diagnosed and was also stunned as I thought I was low risk, although must admit I didn’t breast feed either of my two kids - so I suppose I’ll have to blame that then ! I was diagnosed on 4th April this year and had my chemo first as my tumour was quite large, followed by a mastectomy and node removal on 3rd October. I start radiotherapy soon, then it’ll be a year of herceptin for me.

The first couple of weeks are the worst and I remember feeling very very scared, but as time went on I started to feel so much more positive. The chemo was hard but do-able, and the main thing was it worked, and shrunk my tumour competely away. Due to me also having small boobs (36B), my Surgeon still recommended the mastectomy. The good thing is, I’ll be having my reconstruction early next year and I’m going up a cup size which I’m very excited about (every cloud and all that - lol !).

Anyway Liane, I wish you all the very best for your forthcoming op - please stay in touch and let us know how you’re doing, and remember we’re all here for you if you need us.

Lots of love

Julie xxx

Hi Liane,

You will probably find that you can get a wig on the NHS. At my hospital they have a wig department, and the wigs cost something like £55 - it’s a prescription charge, so if you are eligible for free prescriptions (as I am due to a thyroid problem) the wig will be free.

I don’t really know why some people have mast first and others chemo - often I think it is just down to the onc’s individual preference.

A lot of the information you will read will go on about how tiring chemo is and how you will not be able to do anything. Don’t be disheartened by all this. As you are fit I imagine you will be able to carry on with exercise to a certain extent. Everyone told me I would not be able to run on chemo, but I did. I was out running three weeks after my mastectomy and then during chemo I only missed the bad days. Never went more than 10 days without running, and often it was less than a week.

I had taxotere which anyone will tell you leaves you very weak, but even so I have recovered very well, without the ongoing weakness which so many experience. I have put this down to continuing with exercise all the way through. Now I am on rads I am swimming twice a week and running three times, and feeling better all the time.

Best of luck
xx

Hi Liane

I was diagnosed at end of July and soooooo shocked, it was unbelievable. I found a lump under my arm when my baby was 2 weeks old and only had a feel about as there wasn’t much milk on that side, so I really thought I’d be wasting everyone’s time going to breast clinic as probably a blocked duct etc. But thank god I did go there!

So, a big big shock as I was breastfed and I breastfed my older boy too. Also I have never had any major health problems and am such a healthy person, eat so healthily etc etc. Anyway, its there and it looks to me that there are a lot of us younger women with no significant risks -there’s a study called POSH that you can get involved in as would be good to find out why.

This site is brilliant and has been such a support for me -everyone is so lovely and helpful. You can ask any questions at all and always get so much helpful answers.

So, this is a big journey your embarking on but we don’t have any choice but to do it -good luck for your surgery. I’m due to have surgery on 19th December (crap timing!!) -nearly finished 8 cycles of chemo and am feeling crap and can’t wait for it to be over, unbelievably hard to keep turning up there each time -but hey ho.

As for the wine -…its got me through some rocky moments and my oncologist says have whatever you want!!

Lots of love

Hxx

Hi Liane

Bit late in responding but just want to echo what everyone else has said. Sorry that you’ve had to join ‘the club’ but this is the most wonderful site where you will find lots of support and hints and tips.
Sounds like you have loads of support from a thoughtful husband - not many men would think of doing what he did in buying you a laptop so you can ‘keep in touch’.
I wish you all the luck with your treatment. I was dx mid July - have one more chemo treatment to go on Tuesday, then surgery then rads. It sure is a rollercoaster ride but one which we have no real choice in riding!!

Sending love and hugs
Fiona
x