Hi all,
I’m Sue and I had an appointment at the breastcare clinic last Tues after weeks/months of trying to work out if I had problems or not. I have ‘lumpy’ breasts anyway and couldn’t decide whether I had a lump or not. I also had pain in my shoulder last Aug which may or may not be connected bit it was what made me regularly check my shoulder/armpit area for changes. Just after xmas 2009 an indentation appeared in my left breast and my nipples became very itchy. I went to the doc in Feb and consequently was referred to breast unit at hospital last week. Had consultation, mammogram (which was done on a brand new machine and I was first in so it took longer to do than usual.
After that I had ultrasound on both sides and was told I needed biopsies on both sides as there were calcium deposits on my right side. I had ten biopsies done - 3 on left 4 on right and 3 on left lymph nodes.
I got the results Tues this week and it’s not good…a 3cm invasive in left breast and invsive in lymph nodes also invasive on right side but no measurements given.
Now I have to have CT Scan, bone scan and chest x-ray to decide if it’s spread anywhere else.
I have found an amazing strength over the past two weeks regarding dealing with this but I am very scared and everyone else is talking mm and my measurements are in cm. There are many abbreviations in the posts on here that I don’t follow yet.
Anyway that’s my story so far!
Sue
Whilst you wait for the other forum users to reply with their support and experience you may find it useful to order the newly diagnosed resources pack. It has information to help you better understand your diagnosis, test results and the various treatments available. If you would like a copy just follow this link:-
Sue - so sorry that you have had to join us but welcome… x
The first few weeks are scary and surreal whilst you wait for results and find out what is happening… I was diagnosed in May 2008 and my tumour was 5.5cm at diagnosis and like you had to have CT scan, bone scan and chest xray to see if there was any spread… fortunatly there wasn’t…
Please keep posting and ask as many questions as you need - it seems impossible now but it really does become a bit easier once you know what the treatment plan is as you can start to feel that you are fighting back… The one piece of advice i would give is not to read too far ahead as you might just scare yourself about things that will never affect you…
Just wanted to point you to our abbreviations list, which we put together to help people new to the forum. It should cover most of the ones you see, but if there are any we’ve missed, just let us know and we’ll add them.
So sorry you are having to join us here. Having scans and tests and then having to wait for results is just about the worst thing. I guess you must have a BCN (Breast Care Nurse), and I’m sure she won’t mind you ringing her if you need to talk about your tests, I think they are all aware of how scared and confused we are when we first get this diagnosis.
This is also a great place to find support, I have found the people here so caring. My lump was 4.6cm and I had chemo first to shrink it as it was so close to chest wall. It shrank to 9mm! I then had a MX (mastectomy)followed by rads. Everyone is different though and when they have all your results they will tailor your treatment to suit you. Try to take things a bit at a time, as it all just feels too huge otherwise.
It’s surpriing how quickly you pick up the terminolgy on the site, but there is a glossary of words and abbreviations which is helpful.
I do hope your test results come back clear. In the meantime you will find lots of lovely people here, so keep in touch.
Love Esme x
There are many women on the forum who have cancer which has spread and yet are doing fine many years later. My tumour was 2 cm with node involvement, spread beyond the nodes, and vascular invasion (you get use to the terms!) and I am ok 6 years later.
Keep posting and raising your fears here, your will finds loads of help and support
Like the others I had a large tumour to begin with. It was over 12cm and the oncologist asked for my breast to be photographed rather than measure the tumour to track response to treatment at first. It had also spread to the skin on my breast. I had a good response to chemo and the tumour was reduced to 1.5cm by the time I had surgery. A year on I’ve had no further spread.
It is very hard waiting to find out what will happen to you but as the others have said it gets less frightening once you begin treatment. Things will move quickly now that you’ve had your diagnosis.
Hi Sue, and welcome to a very special forum - we none of us want to belong, but we all get so much support from each other…
you are in a tough place just now, knowing you have cancer but not the extent etc, and it WILL get better as a plan is developed and you know that you and the hospital team are dealing with it.
I hope your scan results are all OK and that you’ll bring any questions you have to this forum. The abbreviations etc are a bit confusing at first but its amazing how soon you get used to them.
will be thinking of you - let us know how you get on
love, monica xx
A big huge thank you to all of you - Monica, Jan, Sarah, Leah, Esme, Sam and Theresa (hope I didn’t leave anyone out!) for all your welcoming and supportive comments. I feel a little better now knowing that cm’s are ‘acceptible’ and not just mm! I was paniking a bit thinking I had a larger problem but thank goodnees this is not the case!
So it’s just waiting for to be sent for the scans then find out the whole picture…gingers and everything else crossed that the scans will come back clear…gotta keep positive.
Thabks again
Sue xxx
Sorry you had to join us. I believe it is medically conventional to speak in mm’s not cm’s. Like the others, mine was large, 35 mm or 3.5 cm. It was in one lymph node too. It is scary going for further tests, I found this the scariest bit, but you will get through it and you know that us gals on here have all been there and will help you all we can.
You’re in the scariest place just now and I remember it well. It’s now two years since I was told that I had a 3.5 cms IDC lump with 3 nodes positive. I was in a really black hole. Looked at my favourite bush in the garden which only flowers in May, thinking ‘will I see this again?’. Of course I’m still here 2 years on after surgery, chemo and rads and am now on hormone therapy. Life is good again.
As others have said, once you have your treatment plan you will feel as though ‘you’re fighting back’.
Good luck. It’s a very short time until you’re on the other side.
Hi,
Thanks Julia and Mal, yes it is a scary place. I have only known a short time but it seems like I have been trying to sort it out in my head for ages now…very weird as it takes over everything at first in your thoughts.I have imagined all sorts both good and bad my poor brain is on overtime i think. However by some miracle I am in very good spirits (i even find that bit scary cos i never thought i could be this strong in my wildest dreams) my BC nurse said it will hit home and I am still in shock but for now I am doing ok and feel fine. I am glad to be able to come here and get more support and appreciate that very much, as you alll already know how important it is to have good support.
Today i was told that my bone scan won’t be till 30th March which is when i was due to go back to hosp to get all my results and my treatment plan, now it looks like it will be longer and i dunno if that is good or bad. It feels bad as I feel i should be acting quickly and yet have to go with the system and that is really moving fairly fast it just feels longet because of the time bomb factor!! I am probably being paranoid and am going to look into getting a private bone scan done to keep things on track or is that just a desperate measure?? I dunno, I just want to be doing something and moving forward.
Okay that’s my ramble for today
Hugs to all
Sue xx
I can understand your frustration at having everything being held up now when you expected results, treatment plan etc. to be happening on 30th March, and now the bone scan not even scheduled till then. Why not have a word with your breast care nurse and tell her how anxious that delay is making you. I guess she will come back with the fact that that is the earliest they can do with the bone scan. Perhaps then tell her you are thinking of getting the bone scan done privately so as to keep everything on schedule.
I remember when I was diagnosed 20 years ago having it said to me that I was in shock and it would hit me later. I am still waiting :). I find that initial strength I seemed to find just kept me going throughout. I hope that is how you find it too, but whichever way just remember we are all different. You will be so glad you have found this site because you can come with all your questions and there will always be someone who has experienced what you are experiencing. When I was diagnosed all that time ago this sort of thing did not exist. I sometimes wonder how I got through it all.
Wishing you the best of luck with the scans etc. and that they will all be clear for you.
Hi Dawn,
Thank you for the message which was very encouraging and well done on being ok after so long, it shows what positive outlooks can do.
I have chatted with my bc nurse and she was brilliant and tried to bring my appointment forward, unfortunately it wasn’t possible but she did get me placed on the cancellation list. It was just another whim about the privte treatment and I did discuss that with her also. She suggested i contact my gp which i have done and am going to make enquiries in the morning under her advice.
Not saying that that is a route i will take but no harm in finding out, like i say it feels better to think you are doing something. I do appreciate the nhs system and I know thay are doing a brilliant job and things are stil moving very quickly even with the delays.
If I have to wait so be it its not that far away.
Thanks again Sue xx
Hi All,
Sorry not been back for ages, been stuckin the whirlwind that is now become my life, I’m sure you know what I mean. I managed to get my chest x-ray, bone scan and ct scan all rearranged so that it all coincided with my next consultation. It took some doing but all hospitals and staff concerned were great thankfully.
I had my consultatin last tues by which time i had already been provisionally been booked in hospital for WLE on both sides and node clearance on left and sentinel node biopsy on right.
I will be admitted tomorrow and of course am extremely apprehensive at the moment. I know many have been before me and I will be fine.
Yesterday we took friends and family to heathrow airport to go on a holiday to Canada which was originally just booked for me and my partner so that has also been difficult.
Next week two days after I come out of hospital my daughter will be leaving home with my grandson to begin a new life in the south of England (I am in the north so it is more than a stones throw away), she will also be 18 the day after she leaves, so it is an extremely testing and emotional time.
However, my chin is still just about up (somehow)and am sure all will sort itself out.
Well, there’s my update.
Love and hugs to all of you out there
will be back in touch as soon as i can
Sue xxxx
wishing you well for your treatment plan, must say it sounds a little like my journey last year, i had recon chemo and the rest but along side this, my last child went to uni, so the house rattled, we also had a big family hol booked , which we had to postpone, hair went gained weight, and missed going to work so much, it rearlly felt like I had been picked for torture, but im here a year later and regaining most of which was lost, its a true bu**er to be put on this track…
Hi all,
I’m here! WLE on both breasts, axillary clearance on left and SNB on right, drain removed days ago and dressings removed today.
Everything went very well abd was texting friends and family an hour after coming back from theatre. Consultant is very pleased with progress and my ‘wounds’ are healing well. Its all gone better than I was imagining, still wish I wasn’t here on this path at all but which one of us doesn’t feel like that.
Today I got results that 3 out of 34 nodes removed were involved but the rest were clear and the lump removed showed a wide margin of clear cells so that news was very good. I have to wait till next week for the right side as the results are not completed yet, I have everything crossed that these results will be similar to todays.
Still sced about the next steps but still taking one day at a time.
I am rattling around my house now that my youngest has left but my friends and neighbours have been brilliant doing cleaning and shopping and getting my own furniture back to where it was before my daughter came to live here with her new baby. Miss the baby so much and its been an emotional week to say the least but as I said before, my chin is still up even though I feel like I have been chosen for punishment sometimes.
Anyways still keeeping positive most of the time, be back when I have more news.
In the meantime hugs to all
{{{{{Sue}}}}} xx
Sue - glad to see that you are home safely and all is going well… I hope that the results are also good for the other side… Sorry that it is so hard without your daughter and the little one though… {{{hugs}}}
I hope that the results are also good for the other side… Sorry that it is so hard without your daughter and the little one though… {{{hugs}}}