Feeling very scared

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Hi

I was diagnosed with breast cancer on the 15th of August, i have a large tumour which didnt show up on the mamogram or ultrosound and the fine needle was negative. I was gutted when the core biopsy came back positive.

The consultant has recommended chemo before any surgery and i am seeing the oncologist on Wedensday. I also have a bone scan and heart scan next week and i am still waiting for the cat scan appointment.

I felt well before the disgnosis but now i am paranoid that every little ache means it has spread. There are still so many unknowns i dont know the stage or type and everything feels so overwhelming.

I cry a lot and cant really sleep, i have been up since 5 this morning. I am 42 and have 2 children aged 10 and 7 and a very supportive husband. We told they children yesterday and they both cried for different reasons. My seven year old doesn’t want a bald mum and my 10 year old doesnt want me to die.

At the momment it just seems all to much, i try to be positive but my mind still wonders back. I was calm when i started writing this but i am now once again a soggy wet mess.

How did you all get through this stage?

Thanks

Lesley

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Hi there Lesley
your post isn’t showing yet … but thought you might appreciate a hug. Yes, it can be scary but there are some fantastic people here who will help you through. I won’t say ‘welcome to the club’ because, really, none of us want to be members - but you will find a genuine welcome here and buckets of support, both informative and fun.
hugs
Ruth

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hI lesley I am sorry you have to join us on here but the ladies on here will be a great help to you as they were to me. I was diagnosed in December I had just moved house a week before we moved back to Scotland from Birmingham after 25 years. So it was such a shock for me. Anyway I had to go and get registered with a new doctor and I was worried about that as I had been with my old doctor for 25 years The new doctor was fantastic I was diagnosed and had a masectomy all over with in a month. Then I had to have 8 sessions of chemo and I can say now it did go quick for me. Yes I did lose my hair and yes some days I did feel unwell but now I feel fantastic. I have started to take Arimadex these are tablets which I will take for 5 years but I will take them as I think its a small price to pay for feeling so well. I am hopeing to start a new job in 2 weeks. I just want you to know that there is light at the end of the tunnel. I am living proof. It is a scarey road dont get me wrong I was terrified but looking back now its gone so quick If you have any questions you want to ask them do I do my best to answer you You Keep Your Chin Up Love Linda x

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Dear Lesley
Welcome to the forums where I am sure you will receive valuable support and advice from your fellow users, in addition, Breast Cancer Care have published a Resources Pack specifically for anyone newly diagnosed with breast cancer which can be ordered on line, it is filled with information to help you better understand your diagnosis, test results and the various treatments available. breastcancercare.org.uk//content.php?page_id=7514
You are also welcome to contact our freephone confidential helpline on 0808 800 6000 for further support, advice and information. The helpline is open Monday to Friday 9am-5pm and Saturday 9am-2pm. I do hope you find this information useful.
Best wishes
Lucy
Moderator
Breast Cancer Care

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Hi Lesley

Sorry you had to join us, not a club any of us want to be in, but you will find some fantastic support on here.

I was diagnosed on 16th July and then told 10 days later after various scans it had spread to my liver (but this DOES NOT mean that everyone spreads, there are loads on here that have only bc with no spreads). No surgery now for me, just started my chemo last week and my next one is the 29th August. It was not as bad as I thought, and to date I have not had any side effects to speak off, except probably more tired. No sickness though. Have bought my wig, eyelashes and couple of hats for night and day, so am prepared for when my hair falls out. I felt fine upto diagnoses only found a lump, and to be told it had spread shocked me and the onc, as had no symptoms to report. But like you, any ache, pain or anything starts me off, but think this is normal. I do not know the type or grade of my cancer, and think at present now, I do not want to know, as might knock me for six again.

I am 39 yrs old with a 3 yr old and a 9 month old baby. THey keep me going and keep me focused. I want to see them grow up and go to school etc, and am so scared of what the future holds for us all. But we are now doing everything we can to beat it, so gotta stay as strong and positive as I can. The weeks up to starting my chemo were the worst in my life, as worrying all the time, but now I have started I have calmed down and become more positive. I still worry, and I do still get my sad times when I get emotional, but not as much as I did.

Easy to say, but try to stay positive, have your tearful times and don’t be ashamed it is normal, and then start again. Your children and OH will help you through these tough times, as I found they did, just a little cuddle and smile from my little ones helps me so much and I see how much I have to fight for.

Stay strong and come on here as often as you like for moans, groans, rants, cries whatever you want.

Take care
Love
Dawn
x

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Hi Lesley

Sorry you have had to join us, but you will find this site absolutely invaluable - we all know what you’re going through and will help you every step of the way.

I was diagnosed on 4th April, age 41, married with two girls age 14 and 10. Understandably we all took the news incredibly bad at first - it was a huge shock and telling the children was hard. However, we told them the truth about it all, that the next few months were going to be tough, BUT I was going to get better.

Everyone will tell you the first couple of weeks are the worst, from diagnosis, scan after scan, and so much information that it’s difficult to take it all in. Once you know exactly what you’re deaing with, and get your treatment plan, you will feel you’re getting somewhere. I too spent the first couple of weeks crying every single day, I never thought I would stop, but it does get better I promise you. Because of the size of my tumour, I am having chemo first, followed by a mastectomy (3rd October), radiotherapy, and herceptin for a year. I have just had my seventh out of eight chemos, and dont know where the time has gone to. The chemo is working, my tumour has almost disappeared, and I (and my family) are feeling so much more positive.

Yes, losing your hair is also hard but you do come to terms with it (I wear bandana’s all the time now, and am still putting my make up on!). On a lighter note, showers take no time at all - no hair to wash and condition, and no shaving to do (my husband is pleased about that, as I always pinched his razor to shave my legs !).

I know you feel very scared at the moment Lesley, but before long good days will outnumber the bad - honestly. I can’t remember the last time I cried ! Take all the support you are given, and remember, we’re all here to help you through it too.

Lots of love and a big hug

Julie xx

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Hi Lesley,

I am so sorry you’ve had to join us, but ‘welcome’ to this most wonderful site. I have found it invaluable since I was diagnosed and I’m sure you will too. I was diagnosed in March, age 34. I live with my wonderful boyfriend but as yet we don’t have any children. I had my right mastectomy and total axillary clearance a week after diagnosis. Not a lot of time to get my head round things, but I was glad they weren’t hanging around!!! I knew v.little about bc prior to diagnosis and have found it to be a very steep learning curve. I think I’ve prob got every booklet and leaflet this site has to offer!!

My tumour was found to be grade 3, 4cm, hormone receptive, and I had extensive lymph node involvement. I also have since found out it was HER 2+. I started chemo in May, there are many and I am on E-CMF. This is due to finish in Oct, then its rads, hormones and Herceptin for me!

The first couple of weeks are definately the worst. I felt much more positive and ‘empowered’ once treatment had begun in earnest. Mind you, there were many sleepless nights and tears prior to my op!!! Telling people was very difficult, and I don’t envy you having to tell your children, it must’ve been particularly difficult.

The treatment is tough, mentally and physically, but it is all very doable! We are all going through the same thing and are always here to listen. You will have many ‘down’ days, but also many many more ‘up’ days.

Take care of yourself as you start out on this journey, and be sure to let us know how you are doing,

Kelly
-x-

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Hi Lesley

It does get easier. You learn coping techniques without realising you are doing so. That is not to say that you will not fall to pieces sometimes, I think everyone does. As the others have said, once you have the full story you can move towards accepting that this is your life just now and the treatment plan is what you have to focus on. I have a 2 year old boy and he is wonderful for keeping me in the normal world as well as the breast cancer world. I hope you find that with your kids too.

I have found great help from joining a cancer support group (through local Maggie’s centre), but I would not have been up to that at your stage. The whole experience of stumbling into having cancer struck me in many ways as being similar to going on maternity leave. OK, it is not quite the same, it is harrowing and horrendous, but you are propelled out of your normal world into another where you are not so sure of the rules and it helps to share this new world with people having similar experiences. I would urge you to think about exploring what support is out there, once you are in a place in which you think you could face it. Again and again this experience teaches me how different we all are. Our needs are different, our side effects to drugs are different, the ways in which we need support is different.

All the best with your tests. It is grim - let yourself accept that.

Sinclair

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Hi Lesley

Sorry you are joining us, but everyone on this site are so so wonderful, full of support and no judgemental. Yes it is important to be positive as I’m sure you know but you must allow you to be yourself and let the tears flow if they need to, we are all different and not robots. Accept any support help you can to get you through this. I to am waiting for CT/Bone/MRI scan results and scared as was originally diagnosed ductal invasive grade 2 but is grade 3 and 2 tumours, so worried of spread, start chemo tomorrow and have Sentinal Node Biopsy on Wed. Unusual way around but glad chemo is starting earlier than planned. I have a 3yr old and sure he is going to think it is wierd that mommy will suddenly have gone from having hair to her Bottom to being Bald!! but read on another thread that her young children drew pictures on her head, could be interesting! Your children will get through this with you and they are a great way of keeping some kind of normality during this time. I believe the other wonderful people on this site that it will get easier but I appreciate the waiting is so so so hard. I will need mastectomy and I have only had any breasts since the birth of my son as was fried eggs b4 but atleast had 3yrs of being able to buy a bra. But I have thought of asking if when they do reconstruction could it be a BOGOF offer and have implants in both!!

Anyway enough of me, you look after yourself and the time will go but remember everyone here on site are with you. Good luck with the scans, be yourself.

Lots of love and care,

JulieL

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hi lesley, i am offering support and love and help in anything i can, i was one of the lucky ones i think mine was benign, supposed to be fluid filled they drained it twice the second time it was red blood, no they didnt send it to be tested

i still have larry the lump but i,m trying to ignore him

you will get such wonderful support here sweetie and you vent all you want babe
hugs to all you ladies going through this terrible desease

love
cee

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Hi,

I was the same with the aches - kept thinking everything was spreading. Funnily enough, now I have the diagnosis and am waiting for my WLE, radiotherapy etc I feel better. Besides I am going to Canada on Tuesday and the planning for that has taken my mind off it. I think you need to keep busy. I almost feel normal just now and was surprised how quickly I got over my first op (an excisional biopssy). Have you had confirmation it was benign, Cee? They thought mine was for 2 weeks (see my discussion on papillary cancer).

Lesley, I hope all goes well for you. You are being very brave and we are all thinking of you

Ruith x

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Hi,

Don’t think I can add anything more as everyone seems to have said it very eloquently.

So will just say welcome and the support is always here for you.

Treakle xx

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Hi
Like Treakle has said, everyone seems to have said all that i would have done. I was diagnosed 2 moths ago and have children 13 and 12 ! I’m 40!!! It is so earth shatteringly shocking to start with but it gets gradually better once treatment starts.
One day at a time.
Lots of love and hugs
Julie XX

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hi lesley im same as you but my core biopsy (left side) was clear but gave me the option of excision on 30th july got results on 16th aug they found cancer cells (massive shock!!)
now i have to go back tues 21st aug for more mammograms and biopsy (both sides) they say i should have results by fri before having more surgery (whatever that will be??) i only found my lump end of may so im hoping this is a good sign, all the different scans (heart, bone etc) and chemo and stuff sound so frightening i don’t no yet if i will have to have any of these but the more you read on this site the more you realise you are not the only one going through it and everyone sounds so positive but the thing that frightens me is most is the thought of a mastectomy at the moment i think i would put up with anything other than that ( i am 50 with 2 kids and 8 grandkids but still very much attatched to my boobs ) i think having kids around is a great help you have to be strong for them as they love and need you so much. ***GOOD LUCK*** angie xx

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Hi Angie,

I’ve just had bone and CT scans and, apart from the wait for results where I was in imagination overdrive, the scans were no problem.

You’d need a high powered microscope to see my “war wound” from the bone scan - the young man that did the scan was extremely good and even found foam wedges for the small of my back for ‘extra’ comfort! To get a good picture they do need to give you an injection of something that shows up well, so, for 24 hours you are very mildly radioactive - but, sadly, I discovered I would neither glow in the dark or look like a “ready brek” kid! The scanner is quite open - no worse than lying on a hospital trolley either.

The CT scan again uses a small injection, nothing horrendous at all. With that you lie very still on a table again, and the relevant part of your body goes through an open ended washing machine drum - looks like a white homer simson doughnut! My only real problem with that was that, at times, you need to hold your breath. My scanner had these two cute smiley faces - one smiling happily and the other was holding his breath - and that one looked funny! So i am there, trying to stay very, very still; holding my breath - and desperate NOT to giggle!

As I wore loose fitting clothes with no metal bits there was no need to undress - and the worst scan i have had is a mammogram - everything else so far has been a doddle.

Best of luck!

Lesley, i too am having chemo before surgery - and i understand the no sleep and every ache and pain not only becoming a sign of a met but much more painful that it would’ve been a month ago. It doesn’t matter how illogical or irrational it is intellectually - emotionally it is very, very real and very, very normal. Best of wishes - just take a moment at a time. You’ll get through all this.

hugs

Ruth

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Dear All

Thanks you for the support, i haven’t managed to read the comments until today. yesterday was a depth of despair day where i was convinced the cancer had spread and i was going to die. A kick up the butt form my husband and today is a lot brighter, I have came to work for the first time and my colleagues have been great they even left me a pink afro wig. Humour i can deal with sympathy just sets me off.

I am still having moments where my mind drifts but i am tyring to remain positive. I think things will get better once i know more and exactly what my treatment plan is, although i know it is Chemo the surgery is likely.

i think i will go to a local support group, but not just yet.

Thanks for all you support, everyone is so positive, I’m sure i will have lots of questions once i know more as this is a foreign language to me and one i don’t understand at present.

I do want to go wig shopping before starting chemo, the wig is more for my children than me. Does anyone have any advice on the best way to go about this.

Thanks again

Lesley

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Hi Lesley

The hospital I go to offer discounted wigs, and gave me a catalogue. Maybe check if your hospital offer this service?

However I didn’t anticipate the hair loss so quickly (16 days after first chemo) so did not put my order in on time, so went to a shop called Trendco in a wild panic the day it was shedding. It’s Kensington and they are very good. My friends clubbed together with a collection so I could afford 1 relatively expensive one at £170 and one for £69. Both are very good and no one can tell I’m wearing a wig. I usually wear a hairband or narrow scarf tied round for extra security.

It is all a lot to take in at once. It’s all so confusing, I’m still baffled and I have my 4th chemo on Friday! Again pre surgery, so I’m with you on the worries about pains that go with that.

Hope this helps you some.

Cecelia. x

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Hi Lesley

I went out the day after my first chemo and got a wig. Not sure where you are, but I live near Lakeside Shopping Centre in Essex, and went into a wig shop there. Burst into tears and then tried on 5 or 6 wigs til found one so like my hair before had it cut. They take off the VAT and the NHS give £40 refund if give the receipt (apparently, taking receipt in at next chemo session). My wig cost about £230, but if it makes me feel “normal” then didn’t care at what cost. Not had to use yet, as hair still ok, but next session a week on Wednesday.

Also the following website is really good: headcovers.com/ I have ordered some eyelashes and two hats, one for night time and one for day time - both pink, my little girl is a pink fanatic!!! It is american, but ordered my stuff last weekend and came on Saturday. Worth checking out. But you will get loads of advice and tips on here.

Take care
Love
Dawn
x