hello, 36 and diagnosed early March 2010

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1

Hi everyone,

I was diagnosed with invasive ductal breast cancer earlier this month. It feels like I am living through hell and have had the sh** kicked out of me. I have cried a lot. I feel like my friends are the luckiest people on earth as they are still living the carefree life I was living up til 4 weeks ago when I found my lump. Thats the new me, jealous of my own best friends.

I found a lump in my left breast when I was examining myself on a Saturday night, and was given an appointment at the local breast clinic the following monday. I cannot fault my GP and the breast clinic staff so far.Supportive and lots of information. That day I had a mammogram, an ultra sound, a fine needle biopsy and then got the results the same day and was told “it is cancer”. My husband was with me . I had to lie down on the bed as i nearly fainted. I had to go home and tell my mum and sister. They were minding my two little boys who are just 2 and 4. Seeing my mum and sister’s faces crumple when they saw my face was awful. thank God for my husband being with me. Suddenly I totally depended on him, having whinged about him for years like we all do. I think I quite like him again now!

That night I was beyond shock. The absolute worst bit was when I went to bed. Previously I had always looked forward to bedtime, especially as sleep is at a premium with young children. But the second the light went off I started panicking and breathing too fast and had to have all the windows open. My lips and fingers went tingly and it took my husband ages to calm me down. there wasn’t much sleep to be had that night.

The next morning I was back at hospital and sobbed silently through the ultra sound guided core needle biopsy, although I was still aware enough not to move whilst sobbing in case she slipped and hurt me! The sound of the needle thing clicking was awful and I certainly couldnt watch ( though my husband did), and I hummed throughout to keep calm, so must have seemed mad. But it really didn’t hurt as the local was great.My breast was black and blue after though. The thing that really got me was that the last ultra sounds I had had were to see my little babies when I was pregnant and now it was because apparently I have breast cancer. And after a year of my persuading and convincing, my husband and I had finally been trying for a new baby and I had been expecting to have ultra sounds at this time for pregnancy again, not for this bag of rubbish. Thank god that I didn’t get pregnant though, it is hard enough wiht just my body to take into account.

I saw my breast cancer nurse again after the core needle biopsy and totally collapsed. I was convinced that this was cancer from somewhere else which had spread to my breast, so my body was already riddled. She reassured me this was extremely unlikely but who believes statistics now as we all know that someone has to fall foul of them, and as has already been proved, I am already on the sh** unlucky list…

Waiting for my biopsy results was horrific. The wait in the clinic waiting room was genuine torture. The tumour ( which is a word I really really really cannot believe applies to me) seems 15 by 11mm, and the results indicate its a grade 2, but only “vaguely” oestrogen positive ( 4 out of 8 if that means anything?).There “is no reason to believe that it has spread to the lymph nodes” but who knows? And when did lymph nodes become so important in my life? I don#t think I had ever even said the term a month ago.

So now I am waiting. I have my lumpectomy on Monday. When i first heard that I had the dreaded cancer, I told them to take the top half of my body off. At the next appointment I downscaled to a double mastectomy, then a mastectomy and finally have agreed that a lumpectomy is the way to go. I have to have a wire put in via ultrasound to mark the place before the op, and am having sentinel node biposy so need to go to the nuclear medicine department at a different hospital first. Nuclear medicine! Wow, am going to be glowing from that, with a blue breast, blue wee, blue poo and blue contact lenses from the dye! I will be like an avatar, if only they could stretch me to make me taller and skinnier too! although I did lose half a stone in a week through total inability to eat at first.

So onward and upward. I am terrified about getting worse news after the op, as i am slightly more able to cope with the status quo now than I was before. I feel that this is totally unfair, I am a good girl , never smoked, never ever taken drugs, hardly drink , not overweight, breast fed both babies for 7 or 8 months until they got top and bottom teeth they could bite with.

Have just realised how much I have written, hope I haven’t sent anyone to sleep and well done for reading this long if you have! Think I feel a bit better for telling people what has happened to me, although feel as though am preaching to to the converted, coals to newcastle etc!

xxx

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Tors sorry you have to join us here but you will get a lot of support from all of us here. It was a shock to all of us when first diagnosed but once treatment plan is set in action you should feel a bit better knowing something is getting done. There are a lot of people on here who can give you advice if you have any questions, there is always someone who has been through it and can be of help. Take care of yourself and as I was told “take all the help that is offered to you” especially with a young family to look after. Joyce.xx

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Hi tors and welcome to the BCC forums.

I have posted a link below to our new resource pack which you may find helpful, it has been designed for those newly diagnosed, just click on the link to access the order form. You can also order more information publications on the same page by clicking on the links on the same page under the ‘quick order list’.

breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/82/

I have also posted a link to our booklet, ‘Talking with your children about breast cancer’ which you can order, as your children are only little you may also want to order the ‘Mummys lump’ book, you can check them both out here:

breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/18/

breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/21/

If you would like to speak to someone in confidence please do call our helpline on 0808 800 6000, the line is open weekdays 9-5 and Sat 9-2, our team of specialist nurses and trained helpliners can offer you further support and information. Hope this helps.

Best wishes
Lucy

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Hi Tors,

You#ve had me in tears reading what you have wrote. Its bought it all back. i was dx dec 07 aged 34 with 3 kids aged 18mnths, 3 and 7. Two years on two ops later told grade 1 but spread to lymp nodes so 6 months of chemo and 4 weeks of radio.

Its hard and at the time you dont realise you go into auto pilot to fight for your life but somehow somewhere you find strenght you didnt even realise you have. i avoided telling too much to the kids until events take place - why worry them.

Cancer never leaves you but you learn to deal with the fact at such at a young age you’ve had this crap to deal with. two years and 3 months later, i’ve learnt to live again and live a better life MY life!. I’ve always ran around other people and now i dont i live for me. I spend more and enjoy life more including booking 2 holidays a year.

Just take things one step and break in down to make it easier to cope. I hope all is okay for you with your results and sending you cyber hugs

sukes

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Hello there,

I’m so sorry you’ve found yourself here. Reading your post it was immediately obvious to me you’ve got a great ability to express your feelings and a very high degree of self awareness - both these qualities are going to serve you really well while fighting this b… disease.

You’ve found the right place here. Your world has become a surreal place that you live in but don’t see, but everyone on here “gets it” and will help in any way they can. It does get easier - but not for a wee while. I’m 3 months ahead of you and starting to see the wood from the trees. Its a struggle at times, but you will get there.

Kindest regards

Lynnx.

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Hi Tors,

My heart and hugs go out to you…yeah this brings it all back and we too feel your pain having gone through that same day of tests and finding out…

you will feel all kinds of emotions; numbness, shock, run over by a truck, crying without knowing you are, angry, so so tired, living on overdrive, loss of concentration…

the consolation from all of us is we are here and giving whatever support you need - I’m 10 years since diagnosis, brca1 gene carrier and so forth with treatment and operations but I can tell you that I could only cope with one thing at a time…

and i agree with sukes, you do find the strength from somewhere inside and I too have found that more times than not are about living a more fulfilling life than I ever did before as it does change you and for me the better in a strange way…hard as that may seem right now

so for the here and now, we are here for you…you will also find your friends that will really help you and you’ll be surprised there will also be people that you would never think of too that will pull it out of the bag support-wise…

make a list of questions that you want to know as sometimes in front of the consultant or breast care nurse you’re still pretty shook up and at times you will forget everything so writing everything down helped me as my concentration levels were shot too plus sometimes questions come into your head at any time so have a notepad and pen handy to write down things or ask your husband/friends too…

keep in touch and let us know how you are doing.

Purdie x

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Hi Tors,

I’m so sorry you’ve found yourself in this situation but glad you have found these forums as you will find an enormous amount of support and understanding here.

I was diagnosed in November and like you have children who were 2 and 4 at the time of my diagnosis. It is so hard facing this disease when you have small children, all my worries are not for myself but for what the future may hold for my boys. However at the same time my children give me a reason to fight and to get up each morning and do my best to live a normal life as far as treatment will allow.

My lump was large (15cm!!) so I had chemo immediately after diagnosis which caused it to shrink to 4cm, unfortunately my current chemo isn’t working and the tumour has grown slightly in the last few weeks so I’ve now stopped chemo and will be having a mastectomy and node clearance on tuesday. I totally get where you are coming from with the contrast between antenatal ultrasound and the ultrasound for breast cancer as the thing that is bothering me most about the mastectomy is that I will be in hopital for my son’s 3rd birthday - I am very concious that the last time I underwent surgery was when he was delivered by c-section and now almost 3 years to the day later I will be having more surgery to remove the breast that fed him immediately after his birth. Talk about bad timing!! Still I am grateful that he is too young to know when his birthday is so we can delay celebrating until I am home again which hopefully will be just a day or two later.

Like you I did everything ‘right’ - don’t smoke, drink very little, healthy diet, breastfed 2 children - but I still find myself dealing with this horrible situation, just unlucky I guess. On the bright side I haven’t found treatment to be too bad so far, chemo was nowhere near as bad as I feared and I still feel fit and well - I even still have a good amount of hair thanks to the cold cap!

Things do get easier once you have a treatment plan and start treatment so it will get better for you after these first few dark weeks. Hold on to that thought and take comfort and support from your family.

Linda
xx

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Thankyou everybody for your replies to my post, it helps to have people understand. I felt nervous about telling my eldest boy, and having read “mummys lump” myself and being reduced to tears, I couldn’t imagine reading it to him. I did drop copies off at school for the class teacher and headmistress to read, and they cried too! But the book has good ideas for explaining things so I think I will just use it as a resource for now. Thanks for the advice about telling the boys as and when it happens.The literature I have read seems to suggest a front loaded approach but my gut feeling is that that would overwhelm and worry them. Am not looking forward to telling them this weekend but just another of those jobs I have to do.

Some things that are worrying me and I would really appreciate advice on:-

  1. Will I feel well enough to cook tea, do the school run, go the pictures or out for a meal, go for a walk, play with my boys?

  2. I have a weeks family holiday booked to Cornwall in May half term and need to pay the balance or lose the deposit. What do I do? Silly and trivial given whats happened, but the boys have been looking forward to it since we went last year. I am apparently very likely to have chemo, so would guess this would coincide with the start of it. Should I just cancel it or risk it? Do i want to be away when my hair starts falling out?

  3. So the cold cap does really work for some people?

  4. Do you ever feel on an even keel again? I am so irritable and snappy and then half an hour later just keep apologising for my behaviour, just because this is happening to me doesn’t mean I can turn into a total cow.

  5. Do people tend to go public and tell people or keep it to themselves?

  6. How can this have been around the corner for me and I didn’t know, and therefore what the hell else is lurking round the corner.

  7. Does everyone else know practically that their surgeon is lovely and will hopefully save their life, but in fact just hate her irrationally because of what she has told her?

  8. Why am I writing life changing stuff that afects my very core whilst at the same time promising to pass my lap top in 3 minutes to my son so he can go on cbeebies. Yes surreal life.

Thanks everyone
xxx

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Hi Tors
It’s my first time on here and when I saw your post I thought your situation seems alot like mine. Am 38 have two children 2 and 5 and was just diagnosed last week. I don’t know what to do half the time. Quite often I just burst into tears. DH is picking up the slack with the kids but I’m sure they are going to notice soon that I am not myself. Sorry to be meeting you in such an awful situation. good luck. Deb

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Hi Midge,

its lovely to hear from you at the same time as being totally horrid to hear from you as it means we are both in this same horrible position.

life is a total fog at the moment and I keep crying too. I also think I am totally self obsessed and will be embarrased when I look back and see these posts, but hey they help me now so thats got to be a positive! But I do feel better than I did the first week and can hold myself together a bit better in front of my boys.

It is wierd as I feel guilty for bringing this into their life, and into my family’s lives.My husband is also helping out a lot more, as is my mum who luckily only lives a few minutes drive away. Its hard to keep on top of anything, and I couldn’t even tell you if we need more milk, bread, loo roll etc. Sounds odd worrying about that but it just highlights how out of control I feel.

I am getting nervous about my operation on Monday now, having managed to block that bit out of my mind until today. I bought new soft bras and pjs from m and s on friday, but the bras feel really wierd on as they are soft and non wired.I also had to sign a form at the till for VAT relief on the post surgery bra I bought. It was only 9 quid but I would have preferred to pay the VAT than have to sign that thing with a queue behind me and my 2 year old screaming in his buggy. I bought the post surgery one as it was softest and didn’t look too bad.

Apparently I should only be in hospital overnight and should have no drains in as i am having the sentinel node biopsy. I am not sure if you have been offered that as many surgeons are still training on it, including my own surgeon. I have insisted that a different surgeon already trained comes into my op to do the sentinel node part, hence having to go to a different hospital first for the radioactive stuff to be injected, but from reading up on it it seems that the SNB is the way to go for less side effects and quicker recovery.

I have just freaked my husband out by putting a headscarf on to cover my hair to see what I will look like bald. I think it looks alright if i manage to keep my eyebrows and eyelashes and put full make up on everyday, otherwise its not my best look…

I am finding it really hard to hold on to any trace of my normal self. I feel I was travelling along one track and then got bunny hopped a few tracks across to this new track, and I am watching everyone else I know happily carrying along on my old track. I just want to know that people have been in my situation and have gone through treatment and come out the other side with no recurrence and a normal ish life again, but I am scared to ask.

The nature of this site, and other support groups, must surely be that people suffering ongoing problems or current treatment are likely to be over represented compared to people who have dealt and moved on, but the threads I glimpse have half scared me to death already! This isn’t a criticism of the site or the people on it, I think I would be lost without this already. I think the advice of dealing with one thing at a time and not looking forward too far is pretty sound, but it feels bloody impossible to follow!

I don’t know where you are up to in your diagnosis, but if you want to message me privately rather on the board then thats fine by me. It is really hard writing on this, though I am glad I did. I suspect I may have to get a blog or a diary going as I seem able to type and talk on here much more easily than in real life, as real life doesn’t seem very real at the moment.

Love to you and your family

xxxxx

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Deb - welcome to the forums, sorry you’ve had to join us here but I hope you will find some support and help here. My boys are a 5 and very nearly 3 now and they keep me fighting and also help to keep life ticking on with some degree of normality.

Tors - it’s very hard to imagine how life will be while you undergo treatment and everyone is different but it might help you to know how it has been for me so far.

I have been having chemo since the end of November, 4xFEC followed by weekly Taxol. The Taxol was easier than the FEC but even with the FEC I was able to cook, shop and do the school run as normal on most days. I felt a little nauseous for the first 2 days of each cycle and tired for the first week but not so bad I couldn’t carry on with normal activities as long as I rested when possible, the second and third week of each cycle I felt completely normal.

I would certainly have been ok to have a week in Cornwall during chemo if the timing was right so that I wasn’t due for a dose of chemo that week. Are you able to delay payment until you know your treatment schedule and ideally see how you react to chemo? I would discuss the holiday with your oncologist before you either cancel or pay.

The cold cap doesn’t work for everyone and some people find it too uncomfortable to use but I decided to give it a go and see what happened, I felt I had nothing to lose by trying it. I found it uncomfortable for about the first 5 minutes while my scalp cooled down but not too bad after that, it discomfort was like a severe ‘ice-cream’ headache and I found it was slightly less bad if I took some paracetamol about an hour before it was put on. I had thick shoulder length hair before treatment and had it cut to mid neck length at the start of chemo. I did lose a good amount of hair especially on the top of my head but I still have enough covering that anyone who didn’t know me well wouldn’t notice anything wrong, there are plenty of people around who naturally have hair as thin as mine currently is.

Although I’m not worried about telling people I have BC I haven’t felt the need (or desire) to tell all and sundry. My friends know, as do my family but other than that I have only told my work collegues, the teacher of my son’s class and four of the Mums at my son’s school who are mothers of friends he sees out of school. I spent a couple of hours on friday afternoon helping run the tuck shop at the school disco, I didn’t wear a scarf or hat and I’m certain that none of the other parents realised that I am unwell in any way.

Try not to be too hard on yourself if you can be snappy and irritable, you are on an emotional roller coaster and anyone who expects you to be reasonable and cheerful at all times is living in cloud cuckoo land!

My biggest piece of advice to try not to think too far ahead, read and ask about the treatment you are currently facing and leave the rest until you get there. Keep to trusted websites like this one and macmillan or you can get some very dodgy and misleading information and try not to scare yourself by reading about situations you may never have to face!

We have elected not to tell the boys much about my diagnosis and treatment and just tell them enough to explain anything that may worry them as we go along. I have been so well during chemo that they are currently unaware that I have been having any treatment at all, now that I am having surgery on tuesday we will obviously have to explain further but we will be keeping it as simple and low key as possible. We have found that they are very accepting as long as we don’t appear worried or concerned.

Remember that you are still very near the start of this journey and things will get easier as you adjust to the unexpected road you find yourself travelling.

Linda
xx

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Linda,

Thankyou so much for your reply. The approach you have taken with your children sounds really good and feels right for our situation too. You come across as really together and brave on your messages, and its good to be in touch with you. In my head, I was basically resigned to 9 months at home, in bed, becoming the poorly relative upstairs, with my boys realising anyone could do what I did and so easily replaceable! The advice about my holiday is great, I have just been worrying about it intermittently but avoiding dealing with it. I haven’t opened the email from the cottage owners as I dont want to read it! I haven’t met my oncologist yet but will ask my breast care nurse about it.

Quick question, does FEC just mean chemotherapy?

thanks again

xxx

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Linda,

and i wish you the very best for your op too, I will be thinking of you and your family, and happy birthday to your little one too, it sounds like he has a fantastic mum to me

xxx

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Hi Tors and Midge

So sorry you had to join us. The problem with this awful disease and its treatment is that it effects all of us differently. I breezed my first chemo but was floored by the second. I told everyone about my bc but thats just me. I didn’t bother with cold cap and shaved hair off. I cant deny that its a living hell but its doable and does get easier.

Take care

Julia xx

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Hi Tors

Yes, you will be able to do the things you list in the above post. If you have chemo, there may be some days each cycle when you can’t do some of them, but it will be days, not weeks or months. I worked throughout (with the odd day off), went out, went on short holidays etc. Explain to the hospital about your holiday, often they can adjust appointments etc to fit round your dates.

At the start it seems completely overwhelming, but the panic does subside and it becomes something that you just have to plod through, one stage at a time.

My tumour was larger than yours, grade 3 and had spread to lymph nodes and I am doing fine 6 years later - there are many others on the forum who have similar stories to tell, and will help and advise you on the journey ahead

Sarah

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Tors

FEC is one of the chemotherapies. It stands for 5FU, epirubicin and cyclophosphamide (I think!). It’s 3 drugs given at the same time. It tends to be a standard chemo but treament differs from person to person.

Julia xx

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Tors - FEC is one type of chemo, there are many different chemo regimes and usually they are known by the initials of their component drugs. FEC is fluorouracil, epirubicin and cyclophosphamide. It’s one of the most commonly used chemo’s for primary breast cancer and is given at 3 week intervals, I had 4 lots of that so it took 12 weeks in total.

As you find out what treatment you will be having I’d advise you to ask questions on here and people who have been there before you will be able to tell you how it was for them and how to cope with any problems that my crop up - I never thought I’d discuss constipation and piles in such detail with complete strangers as I did after starting FEC! :slight_smile:

Linda
xx

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Thanks everyone, am learning all kinds of new stuff! On a positive note, we have more offers of babysitters than ever before so we are taking advantage and are off out to the pictures tonight. Hopefully that will be 2 hours without crying ( we are seeing kick ass so surely is funny not sad!?!) and i am so gonna get the biggest bag of pick and mix that anyone has ever seen. Might even get hagen daaz too, and buy their huge drink rather than sneak in a can of diet coke! Thanks again

xxx

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Lol, we have had lots of baby sitting offers too. Hubby and I have had more meals out alone together in the last 5 months than we have done in the previous 5 years! Got to take advantage while you can milk it I say!

Have a lovely time, you deserve it!

Linda
xxx

20

Hi Tors

I went to buy soft bras on Friday too- how strange. Also had a big cry with my mam today, she could not understand how guilty I feel for putting her and my children through this.

I feel overwhelmed by the children- they are oblivious and I can’t bear the idea that i am going to hurt them. I miss them when they are not with me but I get stressed and irritable when they are around. The hardest part of the day is when my daughter bounces home from school and a wave just hits me.

I am in the just waiting stage- but with added fear that I have found another lump that was not picked up by the mammogram. My diggest concern is that while they investigate that they will delay starting treatment.

Good luck on Monday- I did not realise sentinel node testing was new. Please let us know how you get on. Sorry I don’t know how to PM.

Deb