Hi there to all you lovely ladies just wanted to say hi im in the east kent area by the sea, still feeling fab and fifty, mum of three gorgeous boys i adore, and newly diagnosed on the 14th of february, with DCIS high grade, and as my clinician stated active, guess will know more after op, and due to have surgery within the next four weeks.
First time i ever heard of DCIS, as its not widely recognised as cancer, or the early stage and i guess we are all led to believe we should be looking for change in the breast or a lump, so it was by pure coincidence that i had my three year mammogram and thats where it showed up…and to be honest although it was a complete shock, i feel i have been able to deal with it so much better than i thought at the moment anyway!.. purely because of the difficult challenges i have been facing over the last few years and all the self help programmes to heal my life, that i have been using in the last two years, in my daily routines to make changes.
I am not sure if its the calm before the storm, and im not sure if i should question how i feel, but all i know is that there are so many things, and people in my life that i am so grateful for and that this is just another challenge to go through and i will come out the other side an even better person because of it…the strangest thing is i have not cried yet and im a very emotional person!!
Im sure ive gone into shutdown mode and to see my 23 year old autistic son cry this morning was the worst thing to deal with…now i know im not superwoman!!
Does anyone else feel the same way?
with love to all of you and heres to beating this awful disease…
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Hi Liz,
Welcome to this forum, Being an internet junkie, I found it straight away after diagnosis and it has been very helpful. Feeling that you are not alone and being encouraged by total strangers who are in the same situation is absolutely wonderful.
In the past 6 weeks, I have gone from, “the lump you think you have is just a bit of fat but there is another one we need to do a little test on”, to “Your mammogram is clear, the scan is clear, nothing to worry about” to “Well 95% sure that it is all begnin, but for your peace of mind we can remove the lumps if you want”, to “a small op to remove the lumps” to “We did not quite like what we found, you need a mastectomy and will have chemo”, to having the mastectomy, and Wednesday this week the full results and Thursday meeting with the oncologist…
I am a very emotional person and since the news was broken to me I am surprised how little I cried. I am shedding tears everytime I receive a text or an email from my family. My brothers and sisters have been absolutely fab; and their demonstration of love and support is overwhelming.
I haven’t cried (yet) over my lost breast, I found myself calm, far too calm almost detached. This is surreal.
It is funny how we react differently to big crisis. You come accross as a real fighter, you will beat this terrible disease.
How have your kids reacted?
You will find a lot of useful tips on this forum. Eventhough it could technically be much better. you can’t tag your thread, the bookmarks don’t work as such. ( I would suggest to actually use your browser bookmark in order to keep a quick links to your favorites discussions). Use the search facility you will be amazed at the amount of tips you can find from everyone else.
I have started a list of things to prepare from my chemo, taken from different posts.
Anyway enough about me.
Good luck and take care
Sophie
Hi
I am also from Kent although not by the coast. I was diagnosed with high grade DCIS last summer following my !st mammogram screening. I’ve also got boys but only 2 age 11 and 13.
I had to have a mastectomy in Sep 07 but luckily could have immediate reconstruction. We are the lucky ones or at least thats what I always tell myself. We have been picked up early. With high grade cancer cells that story could have been very different.
You may well find that your emotions change as you progress through this journey… However you feel its ok and this site is brilliant for venting your feelings because we have all been there.
I was so strong in the early days, once I had got over the shock, but everybody said I was too good and they were right I did have a down period about 6 weeks after surgery. Where I felt low and I comfort ate to the tune of another 8lb. However I’m fine now back at work, back at the gym and I’ve lost that extra 8lb!!
One thing I would say be kind to yourself, take your time and don’t rush back to work.
Its so encouraging to hear from you and how you feel,…and how you have come on since I’ve learnt more from reading and researching and on this site, than from anywhere else and its good to prepare you,you think you know everything there is to know.
could i ask you? did you know that you were going to have a mastecomy before surgery or after?..is it a matter of how high the grading is?..or how active?
or where it may have moved to?
Thankyou so much too Sophie you too are an inspiration what turmoil you have dealt,and yet you do sound so strong and positive too and have the love and support of a great family around you, that is so important, and it is actually times like this im really glad to have my boys and the friends i chose as my family, as they are supporting me tenfold…i only really have my mum, and family scattered and i havent told all of them yet!..i suppose im afraid of telling the ones i know will not take it too well and treat me differently. my boys are great and i believe are doing the best they can, as long as i can be strong they need me they lost their dad 3 years ago to cancer so its a real battle for them inside as they sill greive for their dad but lots of fun laughter and great times can only help to strengthen their resolve, and help them through difficult times that they will we need to deal with when they become adults.
Im just finding my way around the site so although not a tekkie hope im doing ok!!
Hi Liz, you sound like you are being incredibly brave and strong, well done you - this is not easy.
I find it hard to tell people too, and have coped by just talking to the people I can at any time, with as much or little detail as I can handle with that person. I’m getting there with that now though - probably giving people far too much information now.
I had high grade DCIS, picked up on a routine mammogram 2 January. I was told at the first appointment that I would need a mastectomy, because it wasn’t just in one place in the breast but in different places throughout it. Everyone is different though. Mine was a “skin sparing” mastectomy, but the nipple had to go. I had a reconstruction at the same time as the mastectomy. Have you got another appointment when they could be planning to discuss the surgery in more detail, or have they said they will make their mind up on the day?
Morning Liz
I had multi focal DCIS some sitting right behind the nipple so I was told straight away I would lose the nipple and have a full mastectomy. As I understand it if you only have one area of DCIS they can do a wide lump excision and then radiotherapy but if it’s in too many areas the whole lot has to go.
At the time I just felt cut it off if it’s gone bad I want rid of it. It was only much later that I woke up one morning and it finally hit home to me that I’d lost my poor left breast and I shed a tear for it.
But when my poor breast was cut up for histology it was even more extensive than they first thought and they found Pagets disease of the breast which is like a different type of cancer cell that sits under the nipple. Luckily it was still caught before it became invasive though. So definetly the right decision to have a mastectomy.
Let us know how you get on. When is your next appointment and where are you having it done?
Thankyou too so much for sharing that with me and your kind words and yes strong i guess we have to be!..as i know if i crumble so will my boys
They have said they are going too see on the day of surgery i believe, and the clinician that i saw was not sure if it had gone anywhere else in the breast but her words were as far as we can see. so…i guess that could mean anything.
Wow Sandra… what a story thankyou for sharing that with me seems that it was the best thing under those circumstances, thats the thing we just never know do we?
Im waiting for my next appointment should be any day now and surgery within four weeks at either QEQM hospital in Margate or Canterbury
Hi Liz, it’s hard to go into it without knowing what to expect at all, so maybe at your next appointment if they don’'t volunteer the information you could ask about the possible likely outcomes? Like Sandra it turned out in my case to be a good thing that they had done the mastectomy.
I do need to ask dont you agree that sometimes you feel a bit bogged down by all the medical terms that some doctors use? and then you get lost in the turmoil…
The last appointment last week was supposed to be the surgeon but she was unavailable and the doctor did say that the cancer although in one place as far as they can see from the ultrasound etc 2 weeks ago, it is active and at this stage they dont know how fast it will grow and will know more when they do surgery.
I like to think of the worse senario in a positive way then if its not good i can cope better…does that make sense?
I have been reading your comments and can’t believe how vague some of the comments are from the so called professionals and the length of time people are waiting for appointments,results,and surgery.
last year I had my first mammogram they found calcification’s on the same day I had a magnified xray, ultra sound the consultant said it looked very much like dcis so they did a biopsy. 7 days later results showed low grade dcis had a WLE no further treatment required just an annual mammogram. All that took 3 weeks.
Had the annual mammogram 15th Feb, they found calcification’s in the other breast, they didn’t do any other checks but booked me in for a surgical biopsy because the calcification’s are deep. I went to see my consultant yesterday he has said they are just going to remove the tissue as before then I will have to wait to get the results for 7 days, my op is this Thursday the waiting is awful and I know waiting for the results will be the same.
I feel sorry for those of you who seem to have to wait for any sort of treatment do these people not know how agonising it is.
Move to Chesterfield in Derbyshire girls I have found the care and speed excellent and couldn’t have asked for any more (other not having to go through it at all).
Just one other thing I have implants which I had done 3 years ago, I was worried that they me treat me differently because of this but they have been great and have said that the implants have nothing to do with my problems (just the luck of the draw I suppose.
Hi Liz, yes I know exactlty what you mean - I get bogged down in all the jargon and feel at a disadvantage when trying to ask questions if I don’t know the proper words. Sometimes it is just easier to go with what they say without trying to ask too much. We are all different - some people want to know everything, and some just enough to get them through the next step. You must use the approach that is right for you. Is there a friend you could take with you? It sometimes helps to have two people listening and making sense of it, and you can compare notes afterwards.
Hi Sue, yes, the waiting is the very worst thing. Good luck for Thursday and for the waiting afterwards.
Thankyou for sharing that we us Sue and i amazed with everything going so fast, not like that down here im afraid… You have been lucky if that is the right word, to have such a great service there good luck with everything let us know the results if you can.
Thankyou too cryst… i will let you know. will fill my waiting weeks with many activities and things that i have always wanted to do and always put off…well ok within reason!!!..sending lots of good thoughts and hugs to you all
