Finally after a 3month wait of being told not to worry I am now diagnosed

Hi Ladies

Awww where do I start my head in full of spinning thoughts and I feel sick angry scared and sad.

I first found a smallish lump in my right breast back in late sept/early Oct, saw GP got referred to consultant at local hospital who did a FNA, ultrasound and mammogram on that same day. Nothing to worry about is showing up they said but we want you to come back in a few weeks for a core biopsy. 19th Oct I go in and have 3 trigger loaded needles into lump and told to come back for results in 2 weeks. Due to my holidays I wasn’t able to see them until 3 weeks, so 9th Nov( my birthday ) I go back and consultant tells me they did not get enough tissue from core biopsy to diagnose what this lump was.
I had noticed the lump had got bigger and even saw my gp who confirmed this lump had grown in size. The consultant said it was most likely due to the core biopsy and mumbled of saying he wants to take the lump out as it seems that is the only way to diagnose it. So I got in for surgery 12th Decemeber. They were not sure in they would perform an excisional or incisional biopsy so the lady surgeon comes to chat to me beforehand explaining that if the lump is encapsulated then she will take it all out but if it is attached to the wall or muscle she will do a partial biopsy. She said she would come and see my husband afterwards to tell him what she did.
I come out of surgery to hear the news from my hubby that she has taken it all out and is 90% CERTAIN THAT IT IS A BENIGN LUMP.
So then due to 2 week to grow cultures as they say and the christmas holidays I have an appointment to see consultant on Jan 4th.
Its then I get the kick I had not expected. Sorry to tell you the lump we took out does have cancer cells and they are active grade 3. I was and still am so shocked and when my husband asks them why it has taken so long they said we had no reason to believe it was cancer as all the tests so far had shown benign but of course we didn’t know what this lump was thats why we took it out and it would not have made any difference to the end result if we had acted sooner.
How do they know that if all the tests had shown no cancerous cells??
so the outcome is I am going in for more surgery as they want to take the marginal tissue that had surrounded the lump out and about 4 nodes then I will start my chemo and radiotherapy.
After my news I then had to wait an hour to have an armpit ultrasound to see if they could detect and lymph nodes affected. I have one enlarged node and the doctor took some fluid from it and then I saw the consultant again who said even though the results are monday (7th) I have to wait till friday and get them.
I had spent the last 48hours trying to take this is, I have been awake wondering if I will see my 14mnth baby and 6yr old girl grow up. I am full of fear and tears and my head is just spinning.
Sorry for the long post but its just soooooooooo unexpected and I feel cheated being given these “not to worry remarks” for the last 3 months. With hindsight I feel I should have gone private…??? sorry for any grammar mistakes…!!

Hi Paula

So sorry you have had to join the cancer babes on this site but you will find alot of friends and strength from babes that have gone through and are going through exactly the same as you, we can truefully say we know what you are going through.

You have had a rough time of it but are now activily doing something to get rid of the little b…ds.

Keep positive (sorry) everyone says that to you, wish I new a better word

Sending you a cyber hug hon (((((((( x ))))))

GillMc

Hi Paula

Know where youre at - My lump was diagnosed as benign but ‘we’ll keep an eye on it’ Next visit I had decided I wanted it removed and lo and behold it was cancerous - but ‘dont worry dear, we’re sure all the cancer is in the lump and thats now gone’ - one excision/lymph node removal later - ‘oops it has spread a bit but youre margins are fine’.

I’m very pleased to report that I have finished all treatment and am totally in the clear and hope you will see the same light at the end of this tunnel. I have come to the conclusion, eventually, that there is so much good stuff happening on our behalf in the NHS that - for me- it outweighed the bad stuff.

Keep posting - the gals on here are superb and will help you every step of the way. Rant and rave, cry, ask questions about absolutely anything - someone will know the answer, probably in 57 varieties! I found out loads from here.

My daughter asked me at diagnosis if I was going to die - now I am fitter than her and can whip her at most sports - except texting…

Take care

Al

Hi Paula

No wonder you are in tears and so frustrated, after being told not to worry by specialists and then being given diagnosis is alot to take especially with young children and the fear of not being around.

My story is pretty similar to yours, found small lump and went immed to GP 10.10.05, who was adamant harmless but just to follow guidelines arranged urgent referral to BC, was seen 18.10.05 by BC consultant, registrar and student who all prodded and discussed in great detail and all 99% sure harmless, all clear on the mammo but inconclusive on FNA and ultrasound, was told to return 4 weeks later (to be on the safe side) and in that time the lump easily doubled in size, this time I had 3 core biopsies and results 13.12.05 confirmed my worst fears + the lump was still growing at an alarming rate, by the time I had surgery 21.12.05 it measured 8cm.

I had very dark days to start with, my kids were 8 and 6 and I went through the same fears as you, it will get easier, take each day and stage as it comes, personally I know my kids helped me through this so much, you still have to be their mum and their routine doesn’t stop for BC and their cuddles are priceless especially when on a down day.

Lets hope your next surgery has better results,

Debbie x

Thank you do much for your kind words its so nice (if thats what I can call it ) to hear other peoples similar experiences.
the BC nurse told me it is not hormone thingymejig so drugs wont respond to it. I just find it so hard to understand how all the tests have come back benign and then wham bam no the lump had cancer cells grade 3 and of course I am worried sick it has spread.

gillmc-thanks I will definately keep on posting on this site and seeing how strong these babes are give me some good light

So Debsy what treatment are you having?

Al- what treatment did you have?and for how long?

I am going to call my BC nurse tomorrow with some questions can anyone think as my brain is unactive with all the mad stuff possible questions to ask?

Going off for another cry…!!

Hi Paula

I am so sorry you have had to join this site. I too was told by Consultant that he felt it was nothing as lump so small and the fact that my arm hurt and ache was not related. Following wle and snb found i had grade 3 idc and dcis (no clear margins form dcis) so had mastectomy with immediate LD reconstruction and 12 out of 28 lymph nodes affected. All the way along surgeon kept saying it was ok - results from mast. found another 10mm area of idc that would of got missed if I had not had mastectomy. I am currently on chemo (had 4, 2 to go) and also have young children 3 and 5. I often feel like I might not see them grow up but determined to do everything I can to. I too am youngish - 40! I personally feel my kids have really helped me through this. As debbie said “their rountine continues”

All I can say is this site is fab and take support from all the people on here - who I could not have got this far throughout.
Your feelings are totally normal but will settle down - but you will have good and bad days. Good luck for Friday - hope all goes well.

I was terrified of having chemo - but I can honestly say it has not been as bad as I imagined. It is doable - I certainly have more good days than bad. Although it can be tough. But you will get through it. Please keep posting and we will support you.

Please take cae, love

Anne x

Paula, I virtually had every treatment going for primary, I was 37 back in 05 when diagnosed and + on everything, as I had node involment and a bit of a mother of a lump, 1st was emergency mastectomy 21.12.05 with full node clearance, followed with 4x FEC chemo then switched to 4xTaxotere chemo + 18 herceptin + 25 rads to chest wall, armpit and collar bone + 5 years of tamoxifen - finished chemo july 06, rads oct 06 and herceptin june 07 and currently now only on tamoxifen for another 3.5 years. have also just had loads of scans on spine, liver and chest and all show no evidence.

My her2 results took a while to come through and I actually got herceptin and taxotere 6 months prior to NICE approval so I am sure your consultants will be looking out for you too, have just had my recon using my tummy and very happy with results, I promise it does get better.

Debbie x

Thanks Debbie you certainly have been through alot, I am so chuffed for you there is no evidence in liver, spine and chest. Excellent news.

Well I do feel comfort ( again if thats ok to say ) from reading your experiences.

I know it will get better and I expect to have those down days. My BC nurse said to me you have just got on board a rollercoaster and now you have to stick with it.

Is this rollercoaster phrase a famous one in BC?

Thanks all

xx

Dear Paula

I am sorry to read of your diagnosis Paula. You may find our helpline useful to call, it is run by specialist breast care nurses who can help you through this difficult time, listen to your concerns and offer information, advice and support. They are on 0808 800 6000 and open Monday - Friday, 9am - 5pm, Saturday, 9am - 2pm.

In addition, Breast Cancer Care have published a Resources Pack 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

I do hope you find this information of some help.

Best wishes
Lucy

Hi there - I know its hard but try to keep your chin up. I was diagnosed on 21st with grade 1 ductal and had a lumpectomy and lymp nodes cleared on 3rd Jan. Need to wait for two weeks b4 i get the full results. I have 3 children aged 18 mnths 4 yrs and 7 yrs. I’m only 34 and also feel very angry cross and cheated. I’m trying to take evey day as it comes and pray to god we ALL get through this.

don’t give up hope.
Sukes

Hi Paula

Hope you’re doing ok - yeah, I would say rollercoaster is a pretty common phrase in our ‘club’…but remember - it implies good times as well as the not so good…

i had the two ops i mentioned before and was offered chemo, but didnt take it as it wasnt going to make a huge difference to me as mine was est-receptive and hormone treatment worked best. I have had radiotherapy - 37 doses, and Tamoxifen. Im so pleased I didnt have chemo, but I would have if I felt it was the best thing for me - take on board everything your encologist advises. They want whats best for you too.

Good luck - you can do this

Al

I’m new on here but am heartened by all you ladies for the courage that you show…I wish you all well…Thialoz x

Hi, my story is a bit like this too. I was told in Sept 2006 I had a benign fibroid but as it was 46mm I elected to have it removed. It was quite deep in the breast and could not be seen. Had it taken out as a day case 3 weeks later and when I went for a check up with the surgeon the following week he told me there was a 33mm cancerous tumour under the fibroid which was spreading aggressively. Just to add to my bad luck the oncologists confirmed a few weeks later I was Her2+. However, I managed to keep my head down and get on with it (the doctors and nurses who have treated me have all remarked I am very focused and never complain to them about my lot). I was asked to volunteer for a stress management programme being trialled by my breast clinic and found it was immensely beneficial.

I started a new job today and have only 5 more Herceptins to go. We had started a small business 6 weeks before I was diagnosed and that’s started ticking along nicely too. A chain of circumstances leading up to my diagnosis had made me lose my confidence, but I found having to deal with this brought it back.

Hi Paula

I was dx with bc on 16 July and then told 10 days later that had already spread to my liver. I am 39 years old and have a 1 yr old son and 4 yr old daughter. My whole world fell apart when I was told and then first thought was that wouldnt see my little boys first birthday which was November. But as you can, still fighting, although missed his birthday as was hospitalised after 2nd taxotere.

Know exactly what you mean with regards to seeing your babies grow up, that is my worst fears and the thing that breaks me the most. Had a really bad run up to New Year, as was in a really big black whole, but pleased to say got out of that again now.

I have finished my chemo and am now on herceptin, got the 2nd on Thursday. It is all doable I promise you and you do become more positive and focused. I found once my treatment started, which was pretty much immediately, i became more positive about everything and then got my life back to some normality and started to go out again, as had been a hermit for about 2 weeks in shock i think.

You will get through it all. I have not had an op, due to liver mets, but sure lots will tell you about it. But as I said chemo is doable and you WILL get through it all. Take each day as it comes and most importantly, once on treatment, listen to your body and rest when you can. Easy said I know, with the little ones, I don’t often get to rest, but take any offers of help from friends and family to take them out etc. Does work I promise.

Anyway, let us know how you are and hope your treatment goes OK.

Take care
Love
Dawn
xxx

PS. Put a smile on my face, planning a trip to Flordia in march and onc given it the all clear to go … yippeee

Hi Cherub and Dawn

Thank you so much for your “experiences” as I said before it does give me alot of hope and comfort. I know I am not the only one and you girls are already giving me support that I know I will need. I don’t know anyone who has BC and I am the first in my family with it and I am the youngest daughter of 3.

My mum has been brilliant bless her but my 2 older sisters are just awful. I know people react in different ways but they have both so far been very negative and making very sad comments about me having a 50% chance of surviving this. You know its like scaremongering stuff they listen to rather than educating themselves with websites or books or even asking me.!!! Anyway my mum is going to be giving them a few choice words about either being positive and helping or basically staying away.
My best friend was very strange and acted like I told her I had a cold and so far hasn’t bothered to call me. My dear friend who calls me and certainly texts me everyday has been a real brick. She knows people who have had BC and tells me some great things these other women have found since having BC, mainly a new outlook on like.!!

Dawn…excellent news about Florida. We went last Oct to Disneyworld it was brilliant, my 6yr old was in her glory and my 1 yr old wasn’t too fussed by all the goings on. I had just had core biopsy day before we flew so I had a nice multicoloured boob in my swimming cossy !!!

Is the chemo/rads very tiring? my hubby was trying to get his head round how tired I might get??bless

Take care
Love P xxxx

Hi Paula

I don’t know anyone with bc either, apart from all my cyber buddies on here and the other forum. And people react so differently. My “mummy” friends, that I met when my daughter born, I have to say have been absolutely fantastic and been there to help and support me and help with the children throughout. My mum, sadly, died nearly 4 years ago of a sudden brain tumour, only found out about 3 days before she died, so don’t have her to support me, and I so wish I did, as she would have been wonderful. My dad lives in France but when first dx last year he literally moved in for about 8 weeks (which ended up being too long for all of us), but he was just trying to help and obviously wanted to be near. My sister lives in Hastings about an hour away.

Don’t blame you and your mum having word with your sisters though, as that is the last thing you need we all think about it ourselves and know what is what, but don’t need people ramming it down our throats. Maybe your best friend doesn’t know how to deal with it or what to say, but see what happens, she may come round. I hope so, as it is sad when friends react badly to things like this.

I found chemo quite tiring, not so much with my FEC, the taxotere was the one I found the hardest and knocked me for six, and yes, the first week or so after was very hard work, tiring, aching etc. But everyone does react differently to the different chemos, so you need to see how you are with the chemo you get. If you suffer in any way though, tell your chemo nurses and they can prescribe you anything to help, and again, if that doesn’t work tell them again, till the drugs they give you work to stop side effects. But I mean what I said before, rest when you can after a bout of chemo, listen to your body and take up any offers of help with the children. Does make your life a little easier and helps you to relax a bit. But don’t worry about any of it, cos you will get through it, you will deal with it, and believe me, it will go so quick. When I first started in the august on chemo, the 18 weeks seemed to sound forever, but boy, did it come round so quickly.

Can’t help with rads as not having it. But am sure others will advise you, don’t think rads is tiring though but don’t listen to me.

Where did you stay when you went to disneyworld. We are looking at a villa either in formosa gardens or solano. Both about 10 mins from disneyworld. Think easier if we have “home from home” in case I get too tired etc.

Anyway hope you are ok and try to stay positive.

Love
Dawn
x

Hi Dawn

Sorry to hear you don’t have your mum, and bless your dad for doing what he did. I had a good chat to another BC nurse at my hospital today and she has given me more info on chemo etc.

Typical eh, my little man has just woken. Will try to write more later when I get a mo…

I stayed at Disneyworld Port Orleans but reckon you are wise getting a villa, sorry don’t know formosa or solano. Is it your first time over?

Staying positive chick…thanks to you and others.

Are you a Sussex /kent lady?

P xx

Hi Paula

I am from Essex, next to Lakeside shopping centre, but was born Maidstone, Kent. Not been to disneyworld florida before went to Eurodisney last March before all this crap happened. We looked at the villas onsite, but would want 2 beds and think the price is very expensive.

Glad you are doing OK, you will have ups and downs though it is such a roller coaster of a journey, but I have more good days than bad I promise. Do you know what chemo you will be on yet?

Gotta take my 4 yr old for her jabs - oh my god … she is gonna scream the place down, although loves watching me have blood tests and little bro have his jabs.

Speak to you later
Love
Dawn
xxx

Hi Paula,
glad to hear you have an apptment on friday - like everyone says the waiting is the worst bit. Have the BC nurses told you about the ‘newly diagnosed’ support group that meets at Cuckfield? It’s quite a good way to find out about the treatments offered loaclly and meet others going through the same thing - scarily most of the women i met were younger than me (i’m 49). Personally i prefer this web site as it’s a bit more anonymous if you want to discuss intimate stuff but the group is definatly worth a try.
cheers
caroline

Hi Caroline

Yes appointment is to discuss surgery and also I had fluid taken from an enlarged lymph node ( which they reckon is enlarged due to the surgery I had on 12/12) . Yes I was told about the healing room for newly diagnosed so thought I would give it a go on Monday. I am 43 and I feel I would like to meet others just to see how I go.
Anyway best go get dinner…take care and thank you

P