Diagnosed BC Christmas Eve 2010!

Ive been diagnosed with BC only this morning. I’ve been reading the forums mainly to get answers to questions but find myself getting even more concerned when people are talking stages and types and I’m none the wiser.

I went to my GP five weeks ago with what I can only describe as a large red/purplish bruise on my lower left breast. There was no lump although the breast was swollen. My GP diagnosed mastitis and sent me away with a week’s antibiotics. The following week there was no improvement. I returned only to be sent away again with another week’s antibiotics. After much concern and worry I demanded to see another GP who referred me to the hospital with what was thought to be an abcess. They prepared me for surgery but returned later on in the day and instead asked me to report to another local hospital the following Tuesday. Nobody, however, explained why surgery had not taken place even though questions were asked. Following tests and results, received today, I have been told I have BC which has also spread to my lymph nodes. I was advised I will have chemotherapy, radiotherapy and masectomy to commence 4.1.11.

However, I will also be having two CT scans and my concern is that after coming home and doing my own research on what the lymph nodes actually are and the purpose they serve I am now concerned the cancer has spread elsewhere also!! Especially when I read the forums and saw that people already know stages and types. Am I been to presumptious or is this normal practice??? Also, I see there is talk about pathology reports. Am I to presume that I should have been given a copy to take home and read?? The thought of going through a double whammy a couple of weeks down the line after receiving one today is just unbearable!! Could anybody shed any light on this for me please. Oh … and a very merry christmas to you all!!!

Hi Just popped in to try and ease your mind a little, I had 22 nodes removed, 16 infected, this was exactly a year ago!

As to yet no signs of spreading.

Easier said than done, but try to enjoy Christmas, You have a long road ahead of you but doable…

I will contact you again after Christmas, in the meantime, Happy Christmas, Love Teresa x

Dear phoneutria,

Welcome to the Breast Cancer Care forum. You may find it helpful to talk things over with someone on our Helpline when they re- open on Wednesday. The opening hours will be 9.00am- 5.00pm. The number is 0808 800 6000.

Take care and very best wishes

Janet
BCC facilitator

You poor thing. There’s never a good time to be diagnosed but this has to be one of the worst. It’s hard because there’s nobody around to give you the answers you need. Your Breast Care Nurse (BCN) should be able to discuss all these things with you. I’ve been through the same treatment regime you are having and will be happy to help where I can in the meantime. Send me a private message if there’s anything specific you would like help with.

You won’t get a full pathology report until after your surgery. However, if you had a biopsy your medical team should know what type of cancer you have and what grade and stage it is. There are lots of different types such as hormone positive or negative, HER positive or negative. There are different grades which are determined by how different the cancer cells are to normal cells. The stage is determined by whether it has spread or is localised in the breast. Breast Cancer Care have leaflets which explain what all these things mean and I think you can get electronic copies on the website.

I was diagnosed in March 09 and my last herceptin treatment is due on 28th December. I had chemo first, then mastectomy with node removal then radiotherapy and lastly a year of herceptin. As Teresa says it is a long haul but many of us do come out the other side with no evidence of disease. One of the advantages of having chemo first is that when you have your surgery your surgeon will be able to tell how well your cancer responded to the chemo. I had a very large (12cm) tumour which virtually disappeared after chemo.

Please try to relax and enjoy your Christmas then speak to your BCN after the holiday and hopefully she can give you the reassurance and answers you need.

Best wishes Jan xxx

Hi thank you both for your kind replies on Christmas Day and words of wisdom and support. Really pleased to hear that you are both doing well after so much trauma. Well done you must be both so proud!!

I am afraid I am unaware it is even Christmas at the moment I am stuck in some lala land somewhere between denial and the worse possible anxiety and fear I can only ever have imagined. Please excuse my ignorance I havn’t visited a GP in twenty years and never even been inside an hospital!!! Fit and healthy with a family history who have lived well into their 90’s so we do plod on in a state of ignorance until such time ‘it’ lands on our doorstep. A lesson to be learned here!

I had 3 biopsies but they did not advise me of any stage or type. All I know is it has spread to my lymph nodes and is aggressive. I cannot believe you had a 12cm tumour!! Unbelievable!! They haven’t even told me I have a lump/tumour. The Radiographer called it an ‘area’. The word aggressive just put the fear of god into me!! I have sat here since imagining the cancer spreading through to my other organs in a matter of minutes!! I have already resigned myself to the fact I’m not going to be here for much longer! Again, please excuse my ignorance and selfish manner I can see there are people on here far worse than I.

Teresa thank you for advising me that lymph nodes can be infected but it not be assumed it has spread elsewhere and Jan thank you for advising me about the pathology report. I did meet briefly with my BCN but the shock and trauma was so much so I just wanted to exit the building as soon as. And yes Jan they did advise me that I will have chemo first. This is because they need to get the inflammation down that they may proceed with surgery. I need to do further research and will take a look at some of the electronic copies you have suggested. Its just sometimes when you havn’t been given the specifics reading too much so into things that possibly dont apply to me only makes me panic further!!!

Thank you both for your kind words and your offer of future support. It really matters!! Any words of wisdom you can offer me at this moment in time is a god send!! Keep smiling :smiley: x

What a horrid time to get your diagnosis. I’m also just recently joined this forum and have found it very welcoming, but you should also bear in mind that people tend to post when they’re looking for answers and post less frequently when things are going ok, so you will find more worried posts on here than not worried. Not that that’s a slur on the lovely ladies who do post, so I hope nobody takes what I said the wrong way.

Do keep posting about any of your concerns - there are no stupid questions.

I just wanted to add my support to all of you. I just wanted to say that the initial shock will subside into understanding when you are told your treatment plan - terrible timing but its fight or flight and you seem to want knowledge so that means your ready to fight this = a positive move in the right direction - this may mean nothing to you but take a day at a time and already from diagnosis you have made up your mind to fight.

All I suggest is that you get a notepad and pen and jot down the questions that you want answered as no one expects you to ask the important things when hit in the face with this diagnosis. If you know the type (mine was invasive plus DCIS) then search for info about the type and then your questions - if you would like help then ask us on this site and we are here for you. Dont get ahead of yourself and forget the “what ifs” - it only matters now.

Sometimes the doctors want to be very sure of their facts before giving out all.

I wish you all the best and as for christmas - so what - you have to learn to allow yourself to feel whatever you want - you are going through this no one else so if you feel scared thats ok if you feel sad thats ok and if you crack a smile and laugh thats ok too. This is a time for you to think about you for a change.

God bless - the help line on this site is great too for when your in a difficult moment or just want info.

Dear Phoneutria

Your initial diagnosis and treatment plus symtoms sound very familiar to mine when I was diagnosed in March 2009.

I’m now the proud owner of a new left boob, (few adjustments needed but its there!)and will eventually have a better pair than before. I’ve better hair! together with style and colour I would never have chosen before!

The treatment was doable, I’m still on herceptin past the 12month usual dosage but its only every 3 weeks and it only takes 2hrs at home. This is because mine was very agressive and I had a sinister spot on my liver at the start (no sign of it since) so safety net at the mo. I am feeling very well and feel proud of myself for getting where I am now!

I feel for you having this news at Christmas - when is a good time - and remember the strange spaced out feeling I had for awhile!

Please feel free to PM me.

Take care

xx

Thank you so much for all your wonderful support. Your experiences and words of wisdom are lifting me no end!!!

Yes ChoccieMuffin you are so right but I have found that where there have been words of worry there has followed kind words of compassion from kind people such as yourself which as only helped to alleviate the worry I can so relate too.

Thank you daisy!!! I am normally a fighter not one to sit down and take things. I think it is the unknown that is the most frightening. I find myself researching and reading things and thinking oh god I dont want to know this and then oh god yes I do rebounding back and forth like some yoyo!! What I have found most weird is I truely and sincerely believe I am having a bad dream and this is not real! Every morning I awake with a spring in my step and then reality kicks in and I spend a couple of hours crying before daring to venture the world. I walk around in a big hoodie down the back streets that I may not bump into anybody who will ask me “how are you”? Arrghh what will I say?? So few people know!! I have no idea what type/stage I am but I think I need to know. I presume I may phone my BCN after Christmas to enquire?? Can a BCN provide me with this information??

Fudge wellllll done!! You deserve to feel proud! All of you do truely inspiring!! Awh WOW!! Fudge did you have what looked like a bruise? All these words sound familiar to me; sinister, strange, unusual etc. etc. I cannot believe ‘somebody’ in the medical profession mentioning no names asked me if it was a ‘lovebite’!!! Hmmm NO I wish are you having a laugh??? Sorry, I am apt to use humour as a coping strategy when I am feeling low!! No disrespect intended!!! Made me smile about your new boobs and hair!! My thoughts were well I’ll have grey hair grow back and then choose to have it whatever colour I like!! Cool! Interesting about the new boob though because I have had thoughts about this, stupid ones all the same but I have been thinking that I am just going to leave it as I have this stupid notion that putting something synthetic there will only aggravate the risk of future cancer!! Is this stupid?? Actually fudge if you dont mind I think I may email you! I hear so much about lumps but not bruises!!!

Thank you thank you everybody. Please please keep your words of wisdom coming. They are truely an inspiration!!! x

Hi, Glad you have had responses, all the ladies say are true, you will meet some wonderful women on here.
Mine was also aggressive which i forgot to say last night…
We have a saying here, Your Going Through Hell Just Keep Walking!!!
You will come out he other end…

Love Teresa xxx

Hi Phoneutria
No advice but just to send hugs of support.
Alice

Dear Phoneutria

What a rotten time to be going through this!

I think most of us want to know, even if it is bad news, and I have found the waiting part almost more difficult than anything else. Radiographers tend to be cautious in what they tell you, in my experience, because often there is a biopsy to follow and to make things definite. So there is often a wait between mammogram and possibly ultrasound and a clear diagnosis. I have a history of cysts, so it was a shock when I was called back (not unexpected) and after the scan (expected), was told, ‘We’re going to do a biopsy–this area does not look like not a cyst, there are calcifications.’ And it was another bad shock to be told ‘you have cancer’, though it was put more gently than that.

If you were not given a report, which doesn’t always say ‘pathology’ on it–mine don’t-- it may be that they are still determining just what is there and haven’t prepare it yet. But put that on your list of questions. Even these days, some people and places appear to be better at communicating with patients than others.

Don’t resign yourself to dying just yet. Aggressive is not good, but it has a medical meaning which is not always what we poor laywomen understand. It’s not like the way an illness or something like blood poisoning can spread, and the chemotherapy should slow it down or even stop it.

We were all different shades of ignorant before we or someone we know well developed cancer, and you are not being selfish, just human. Your previous good health will help you get through both the less pleasant parts of the treatment and to fight off the cancer. A friend of mine told me that she was advised that part of the emotional distress comes from starting off as a healthy woman, discovering that you are not entirely healthy, and going through treatments which can make you feel distinctly unwell.

Your feelings are absolutely natural. The holiday period and bad weather aren’t helping anything, of course, but do take advantage of the helpline–if nothing else, they may help you to put your list of questions together. I think some people find it helps to have a relative or friend along to ask questions.

Blessings,

Cheryl

Hi, I was diagnosed March 2004, with lymph node spread and an aggressive cancer, and am currently very well. There are many long time survivors on teh forum, they have probably nto responded becuase they are enjoying Christmas with their families.
I think one of there reasons they don’t always give you full pathology details is that its too complicated to understand, especially when you are reeling form the impact of the news. The technical terms are rather scary. About half way through treatment I read my path report - and it scared the life out of me. So although it is good to ask some questions, just take it one step at a time. The doctors know what they are doing and will explain things as and when needed, or when you ask, also the BCN is usually very helpful.
best wishes
Sarah

Dear Phoneutria,
I’m sorry you find yourself here.
I was diagnosed mid Oct - like you, chemo up front, then mastectomy and radio. with lymph nodes affected. Mine too is aggressive, and I start herceptin on the 4 th Jan, with my next 3 chemo sessions, and have 18 doses in all. Have done 3chemo already. It is two and a half months since my diagnosis. I did not think I would lose that feeling of sick shock to begin with. I am so sorry, it is a dreadful time. But it does get easier, in such a short space of time, it is amazing. Try not to get too hung up on the term ‘aggressive,’ I think oncologists and the other professionals involved get so used to the terminology that they forget the impact it has on us. Talk to the BC nurse for reassurance, and the doctors for info only!!
I hope you are not feeling too isolated by this at Christmas. Keep posting- and feel free to private message- I check my emails pretty often,
Tracey

Hello

I was diagnosed 7 years ago and out of 17 nodes removed, 6 were cancerous and it hasn’t gone anywhere else.
I am currently well, and only have to cope with the side effects of Femara. In the beginning it was all a bit of a blur, wasn’t told until after the surgery the grade stage etc, I can’t remember chemo being mentioned until after surgery, although my husband said that my surgeon did mention it that it might be an option,I chose not to remember. Luckily my husband came to every appointment, it would be helpful if you had someone with you to listen to what it is being said.
As it is 7 years ago I don’t post very much but I do visit most days and if I can offer any support I will, I don’t see many posts from people who were posting 7 years ago, they probably are the same as me.

Treatment is improving all the time,these are early days for you so just take one day at a time and you will get there.
Take Care
Hazel

Hi,
I’ve just joined the forums and am on a similar journey too so GOOD LUCK and I shall be thinking of you.
Take Care
Helen

While there is no good time to be told you have cancer, christmas eve is one of the worst times to be told. I do wonder if this disease knows about dates. Our first clinic date was my mum’s birthday, and the forma diagnsis on our wedding anniversary, my wife’s preop checks were on my birthday…

Don’t get too worried about presence in lymph nodes - I understand that is not really classed as having spread if you get what I mean.

The CT scan will tell more about that - fingers crossed that’s OK.

I’ll be blunt - you are in for a crappy year or so, but you have found a good place here for support and information.

Go with what the doctors tell you, and look for details on the info they give.

Basically the grade is how far the cancer cells differ from normal cells, and the stage is the progress - that is based on the size of the tumur, if it is contained, in the lymph nodes or elsewhere.

Do you have any indications of a treatment plan yet?

Paul.

Dear Phoneutria
Waking up thinking everythings fine, and then it hits you? I remember this so well from September when I got my diagnosis! I have had surgery and am waiting for Chemo to start. I had Lymph node involvement too.

The feelings you are having now are completly normal. It does take time but the panic will fade; though I won’t deny it does tend to come back on occasion…
You’ve come to the right place for support, there are so many lovely ladies on here who seem to find just the right words. (I urge you to use the phone line on bad days too, the nurses on here are really great)!

No one person has the exact same journey as any other with this. One thing we all seem to go through is the stepping stone game. Biopsy - wait - results - wait - surgery (or whatever) - wait… be warned, we always seem to be waiting for something!

Do write down questions, and take them with you, note the answers too! If you have trouble sleeping get to your GP for some tablets to help. Just 'cos you’re a fighter ( you sure sound like one!) doesn’t mean you shouldn’t ask for help! It’s a long haul and you’ll need to pace yourself. Do you have someone to lean on at home? and to take with you as emotional support and a second pair of ears?

Very best wishes. Pxx

I’ve just had three weeks of emotional roller coaster when I’d be unable to get to sleep through thinking about breast cancer, then wake up in the middle of the night thinking about breast cancer, and after finally dozing off dreaming about bl**dy breast cancer, then waking up in the morning hoping it was all a bad dream only to remember a millisecond later that I have breast cancer. But in the last couple of days when I’ve got more of an idea of the “plan” - more details on what I’ve got, what type it is, where it is, what surgery is needed, what follow-up is definitely needed, what MIGHT be needed and what would make it necessary, and DATES for surgery, I’ve felt a lot calmer. It really is the shock and not knowing that’s a total head-blast, so once you get a bit more information you will I’m sure feel a lot less out of control.

Yes, you’ll have questions. So ask them - as I said, there are NO stupid questions. Yes, you’ll have bad days when you just want to burst into tears. Go right ahead. Yes, you’ll have days when you’re really angry. You have a right to be. Yes, you’ll feel guilty at putting your family through it. We all do. And if you don’t want to take out your emotions on your nearest and dearest, post on here so we can join in so you don’t feel alone.

There are a few “black humour” threads that you might enjoy - dark, dark woods is one of them, inbetweeners is another (anyone know how to post a link to them?) and you may find other favourite threads that you want to keep in touch with. At the top of a page there’s a link that says something like “add to profile”, which helps you find the threads again.

We’re with you, you are not alone.

Hi,

It’s natural to feel scared and frightened. I was dx in May with heavy lymph node involvement, but no further spread. Treatment is doable, so make sure you accept any help you’re offered. With love and support you will get though this horrible time, and you will receive plenty of encouragement from these forums.

Dotty2 xx