Petrified that it's worse than I have been told.


Noticed nipple changes in Feb, but ultrasound and mammogram clear, . Then in April found a small lump, during the initial ultrasound another small lump identified. Completed triple assessment biopsies in Mid May and told both lumps benign. Had them both removed as a precaution at end of July. I went on holiday for 3 weeks, went for what I thought was a sign off visit only to be found that the 1st lump contained Grade 1 cancer with DCIS in surrounding tissue. The other lump is aU3 lesion. Told the whole breast is unstable so Mastectomy and reconstruction offered, as the cancer is out, which I have agreed to and have pre-assessment on Monday. I am being told I am in a good position, but I am petrified that they have got the diagnosis wrong (as they did before) and that it is much worse. I have realised that I have lost over half a stone in the last month or so, have episodes of really bad heartburn (3 days worth mid holiday). What should I do?

Hi Marathon knees,

I to have dcis, but no lump, and have been told that I have to have a masectomy booked for the 28th Sept, I am really scared, because since they have done the biopsy I have a small tender lump in boob, and am worried that it has spread. But unlike you I have put on a stone and a half, which is rea;lly unusual for me as I have been the same weight for years, and I am not comfort eating!!! Have not seen any change in boob before mamogram or since except for the bruising, so was really gob smacked to be told it dcis in its early stage. Not having a reconstruction as I am only 10 stone, and have no surplus fat on me. My pre op assesment is two days before op. Been told that I should not neeed rads or chemo or any onther treatment.
Keep your chin up we are all with you, these forums are great.


Hi Sweetheart and Marathonknees

So sorry you have both found yourselves on here. But you are in very good company with everyone on here and will receive so much support to help you through all this. Alas, I cannot help with advice re masectomy, as this was not an option for me in the end, and was put straight onto chemo. But you will get replies from people going through or gone through where you are and they will help you.

I wish you both well. Try not to worry too much (easy said I know) but at least you have been given dates and treatment will be soon and hopefully you have both been caught early enough to stop any further spreads. I will be thinking of you and let us know how you both get on.

Take care


I have to just been diagnosed with DCIS and grade 3 invasive ductal. Had a WLE and SNB in August to be told all the invasive has gone but need mast. due to DCIS. To say I am devasted is an understandment. I also need aux. clearance as my SNB came back. I am having surgery 28th Sept with recon. Have already been told will need chemo.
Perhaps we can support each other through this. I am 40 with two young children.

It is not easy not too worry and just being on this site as been of great help to me.

Hi Anne5

It is devastating isn’t it when dx, and no-one can completely understand your emotions. My whole world fell apart when told had bc, then double whammy with being told had already spread to my liver. I have tried to stay positive, harder some days, but since chemo started have been better. I am on an emotional rollercoaster as you probably are too, but you will get through this believe me. And once your treatment and surgery start, at least you know then that you are fighting back. I am 39 with 2 children under 4. But they will also help you through this, as you have so much to fight for and they don’t give you time to sit and dwell on things to much. Well mine don’t anyway.

And just to say, please don’t worry about chemo - it is doable. Not half as frightening or as bad as I thought. Have had my 2nd dose now, am on FEC x 3 and taxotere x 3. Luckily not really had any side effects to talk about, apart from the hair loss, which was very emotional and I got it shaved over a week ago. Slowly getting use to the wig and everyone says how lovely it is!!!

Can’t offer any advice with surgery as not been there, but you will get support on here from so many, although not sure how long you have been on here.

Anyway, good luck with your treatment and let us know how you are.
Take care

Hi Dawn

Tank you so much for your comments and support. You are right this is a huge rollercoster ride. I feel at the moment everytime I go to see the Consultant he has more bad news. I just want to know how far it has spread.
Think I am going to get my wig sorted prior to my surgery as I think this is the wellest I am going to feel for a while.
Perhaps it will give the kids a liitle time to get used to it - although they seem to take eveything in their stride.

As you say not looking forward to chemo - but think the worst is the waiting.

Are you having surgery once you have finished chemo?

You are right about the children they do keep you going.

Hope treatment is going well, and look forward to further chats.

Take care


Hi Anne

Know the feeling about the consult. Every time I see the onc get bad news, got appointment on Wednesday, but can’t be bad news, as think they have told me everything - better that they have. THink it is just routine and prob. to tell me that need another scan etc to see if liver tumour shrinking etc.

I would def. get wig sorted out when you are feeling ok and sort of prepared. I got my wig the day after my first chemo session as didn’t want to have to go out when it was coming out. Was emotional enough anyway that day, and burst into tears in the shop, but would prob. have been worse if I had left and I had to do it, if you know what I mean. My kids are great, baby doesn’t really know as only 9 months, but 3 yr old wanted me to get a pink wig, she came with us. She keeps telling me she likes my new hair and I look beautiful in it … ah bless her. They do help though as you have to keep on going and doing normal stuff don’t you, can’t just sit around, they won’t let you.

I have no idea what happens after chemo, think it is Herceptin for a year, but prob. find out more on wednesday. Got quite a few questions for him. Have been told on another forum that as got secondaries prob. very unlikely to have mascectomy, although I would prefer it all to be cut out and hopefully would be less problems, but we shall see.

Good luck with your surgery though and your chemo, and you will find chemo is not as bad as we all fear, as long as you tell your chemo nurse if you have any side effects.

Take care and have a lovely evening. Got one in bed and the other is about to go then will be bliss, peace and quiet.


Hi Sweetheart , Anne5 & Dawn.

Many thanks for posting replies. It has really helped calm me down a bit. My initial post was the first time I think I had admitted to myself, never mind family or friends, that I am really scared. I am a similar age to you Anne5 & Dawn , I am 42 with 2 children aged 4 & 7, they are keeping me busy during the day, but nights are when it really hits me and at the moment I think I am getting about 4 hours sleep & am having to force myself to eat. I look and feel terrible & know that I need to try and get myself ready for the surgery & recovery. My husband and I are at a bit of a loss as to what to tell the kids. I have told them that I am going to see the doctor on Monday about my breast as there is a concern that it has not healed properly after my 1st operation in July. However I have no idea what to say about the mastectomy to come , nor my cancer diagnosis. Any tips?

Good morning everyone

I think what you tell the kids is upto you and what they understand - you know them best. Keep it in terms they will understand. My daughter calls breast boobs so we have continued with that - so much so that often thats what I say even when talking to Health Care Professionals lol!!!
We give them the information as each treatment is about to happen as mine do not really have a time concept. We have just said that mummy has a poorly boob and the doctor is going to make it better - not sure if or what to say about recon - but kids are so adaptable I think we will cross that bridge when we get to it. We will tell them I will be in hospital for a week but that they can visit. When the time comes for chemo - We I think are going to say that I now have to have special medicine to make me better but it will make mummys hair come out and I will need a wig etc,
We have not mentioned the cancer word as my two would not know what that meant.
As Dawn has said kids just seem to get on with it - love the idea of a pink wig!!!
It is the kids that are going to get us through this.
When are you having surgery?
I am going in end September.
I know it is difficult but please try and take care of yourself - you will have a much better recovery if you are well.
Hope you all have a good Sunday - and lookkforward to further chats. We need to support each other through this - and through this we will get.

Take care


Hi Anne5 & Dawn,

I agree that it is the kids that keep us going I have five, they range in age from 32years to 11years the four eldest have all left home, the youngest a girl has just gone to secondary school. I didnt tell her about my biopsy, but waited for the results, I have now told her everything, and she has been on the internet for information and seems to be taking it in her stride, think she will have a rough day when I have my op which has been brought forward by a week, which is even more scary, I had sorted everything out in my mind and had a list of things to do, now everything has changed and Im on countdown, and it feels like Im in a dream and someone will wake me up and it will al be right, I suppose its a form of denial, I am really scared of needles and have to have radioactive liquid injected into my boob on the morning of the op to have sentinal node biopsy at the same time as my op, have been told that my wee and poo and also my skin will be greenish blue for about twenty four hours, so shall be like frankensteins monster for a while, I have asked for my youngest not to be brought into the hospital whilst I am strange colour, she wont like it, but I think it will be a bit too much for her. Am being super good and eating my five portions of fruit and veg each day to help with the recovery process.

Cyber hugs to you all


Hi everyone,

Looks like we are all well and truly on paths towards action, which is half the battle. For those with imminent surgery or treatments planned, you have my very best wishes & definite support. I had a pre-operative assessment today and I have a few decisions to make by the end of the week about treatment options. I should then be given a date for surgery. Will keep you posted.

I am thinking of you all.



I have my pre-op assessment on 26th Sept and my op on 28th Sept, have to be at hospital by 8 in the morning and be nil by mouth from midnight the day before, so I shan’t have much time to dwell on the enormity of this op. Still really scared of what it will look like, dont know if I will be able to look at scar for ages, and am really scared of what my partner will make of it. Have to see what happens I suppose.


Hello everyone,
I was told I had breast cancer on 7th Sept.small lump and caught early.No experience of breast cancer, no one in either family have history. Having lump removed Monday 17th Sept. going for pre-op to-morrow (13thSept.) Little bit scared not knowing what to expect, all family and friend very supportive, have read most of your comments and all really positive it was good reading them.
Is there any else in the Wolverhampton area, consultant surgeon P Matey does any one know her?
If ok with you I will let you knwo how I get on.
Chins up
Cooking Nanna

Dear All

I just wanted to say that I am thinking of you all, I am a year down the line since my chemo first started and I have to tell you, my little boy helped get me through it. He was the reason I fought this and continue to do so everyday (he’s nearly 5). You have to stay strong and be positive. i remember people telling me to and i thought it was a load of rubbish but looking back it was the best you could do. you are all in good hands. I found this site and everyone on it wonderful. If you ever need to have a moan, ask questions, have any support, everyone is here to give it.

Thinking of you all

Claire x

Hello all,
Had pre op today every one very nice, everything ok, have a good pair of lungs apparently ( I knew shouting at the kids when they were younger would be of benefit one day!) Have to check in at the hospital 7am Monday,- it’s earlier than going to work, no food or drink after midnight, I do have high blood pressure, so will have to watch that.
My “girls” are being very brave and brilliant, they are about to tell their children about Nanna, grand children aged 8/9 and 11, it’s very hard for my eldest daughter, her mother in law has lung caner with secondaries. My hubby finding it a little difficult, will be much better after Monday.
If any one newly diagnosed and at the stage I’m at, let me know, it’s still scary, we could hold hands together!!
I think you are all very brave and wonderful people, and I feel a bit of a “woose” when I read what you have been thru and acheived. Oh dear, getting mourdling now, will go and start dinner for hubby, have a good weekend everyone. See ya
Cooking Nanna.

I am from Shrewsbury not too far from Wolverhampton, and was diagnosed on 7th Sept. My operation is not till 2nd October so a bit of a long wait. Apparantly my consultant wants to do the op with my radiologist and they are not available together till then. I am trying to brave, I have found it hard to tell people. My initial shock has now passed to worry about whether it might have spread. I am wondering how I will manage at home on my own, how long I will be off work. Anyway hope all goes well for you.

Love Maisey

The absolutely best thing about this site is that you quickly realise that you are not alone & that there is lots of information and a whole community of strong women out there who can help pull you through. In the 2 weeks since my diagnosis, I have gone from being very scared to being resolute about what is to come. (mastectomy & reconstruction scheduled for next Wednesday, 19th Sept). I read something on one of the other forums about breaking it all down into little pieces and dealing each decision on a step by step basis, which was really useful for me. I think for those that are newly diagnosed, working out how to deal with the news whilst being asked to make big decisions& face the unknown is really challenging, but somehow we do it, because we have to & because we can. One day at a time is a cliche, but I reckon it is probably true.

Regards to all

Hi Maisey,
I was diagnosed on the 7th Sept also, had my lumpectomy and lymph nodes removed yesterday, just arrived back home.
Just like you I was very scared to tell people, but I found the more you say the dreaded word “cancer” the less intimedating it becomes, have to wait until 28th Sept to find out the results; size, rate, how much radiotherpy and medication, and has it spread?
What I will say is this is the worst part of it all, the waiting for the op,sounds funny but after that is it seems better somehow. I will be thinking of you on the 2nd Oct.
I agree with marathonknees, we deal with it because we can, we are women who can, supporting each other, which I find invaluable, and I thnak you all for writting your thought down, it really helps to know you are NOT alone.
Chins up.

HI all,
Hope everyone feeling ok at this time.
Very stange week, lots of ups and downs, so many emotions all mixed up!! Drain has now been removed, thank goodness, it was starting to become an annoying “friend”, excerises going ok tiring tho. Just waiting for Friday for the final results of op.
Maisey, are are you keeping?, not too long to wait now, thoughts are with you.
Sweetheart, good luck with Friday, will be thinking of you on that day.
Speak later, bye for now.

Hi Maisey & Nanna

Hope your results are good Maisey, and thanks for the information Nanna, how long were you in hospital for? and I hope your results are good.

Will be thinking of you all