hi everyone
ive just been diagnosed with dcis intermediate grade was offered lumpectomy and radiotherapy i asked about my chances of it returning and was told mastectomy would give me a better chance of it not returning omg what a shock it don’t happen to you this happens to other people I’m going tomorrow to discuss my treatment i am so scared , can i just say it has been a comfort reading about you all i don’t feel so alone
xxx
Hi Lindylou, sorry to hear your news,but you are never alone on here. The ladies will fill you with positive vibes they really helped me. One thing that will be said time and time again is dont read too far down the line. take it one step at a time.
Love and hugs
Bridie
Hi Lindylou,
Welcome to the Breast Cancer Care chat forums, I hope you find it helpful.
Being newly diagnosed I thought you may be interested in BCC’s resource pack, its especially designed for the newly diagnosed and full of useful information to help you through your BC journey. The pack is free and to obtain a copy just follow the link below. Hope this helps.
breastcancercare.org.uk/content.php?page_id=7514
Kind regards,
Jo, Facilitator
Hi Lindylou
So so sorry you have had to join us. It really is hard to get your head around for a while. You will find your emotions all over the place sometimes you are really strong and positive and at other times you won’t be able to stop the tears and wonder how you will cope with it all, but you will. I was only diagnosed a few weeks ago and found it really hard to cope at first but with the help of the ladies on here have somehow managed to get through, although there have been many tears and sleepless nights along the way. We have all been where you are and can understand how you are feeling so don’t feel alone, your not. Ask any questions you need to someone here will be able to give you advice or just a shoulder to cry on.
I was also offered a lumpectmy but am now having a mastectomy with immediate reconstruction ( tomorrow ). I am at peace with this now and look on it as a non essential body part, emotional as it is to loose it I would rather be safe for my children. I have seen lots of pictures of reconstructive surgery and they can look really good I’m going for a skin sparing one. I can give you more info after tomorrow and am back home ( next Mon ) if you are ready. The breast care nurses are very good and the treatment is superb, breast cancer is very common so they know how to deal with it, so don’t be afraid.
I hope this helps, will keep you in my thoughts.
lots of love and a massive hug
Ann
xxxx
Hi Bmt56 , Hi Jo Hi Anndi
i am so glad i came on here and read about you all it really helped me.I see my surgeon today he assured me i don’t have breast cancer but it would almost certainly turn into cancer in a year or so, its Dcis intermediate with a little bit of high grade those were his words, he said the odds of it coming back after a lumpectomy were not the best it could come back the same so we would be at this stage again but it could also come back aggressive great news considering I’ve not got cancer eh,but if i have a mastectomy then obviously the odds of it returning are good , i also asked about the other breast and the odds on getting it were not great either so Ive opted for a double mastectomy with immediate reconstruction with skin sparing surgery on both breasts what the hell do i want to keep them for its like a time bomb waiting to go off i need peace of mind and to get on with my life, Ive got to have the lymph nodes checked before main op so I’m still scared stiff , yes Anndi this last week my emotions have been all over the place but now i have made my decision i am feeling much better its still all very scary still cant believe it’s happening and so quick, Anndi ill be thinking of you hope it all goes well and please let me know how it all goes love and big hugs xxx . Thanks jo for the information pack link xxx
Love to you all
Lindylou
xxx
If I were you I’d get a second opinion as it seems a bit much going for double mastectomy for what is pre-cancer. Where is the surgeon working?
I do wonder
Mole
Hi molennium yes it is quite drastic but its my choice for peace of mind cant be living with that time bomb over my head , every year to go through the worry of has it has,nt it feel like ive been to hell and back this last month
Lindylou
LindyLou i think you have made the right decision hun!
I was diagnosed with bc & dcis in the same breast and have already had a mastectomy and started chemotherapy too! It’s not half as bad as it seems, and you are very right about it being a timebomb waiting to go off…Why would you put yourself through that?? To find out at 25yrs old that i have breast cancer is one thing, to be told i need a mastectomy is another but to be told there’s a massive chance of being totally fine after treatment means more than everything else…I have also asked that when the time comes for my reconstruction if it is an option to have my other breast removed and reconstructed and it’s something i will jump at if given the option. My kids are far more important than 2 lumps of fatty tissue on my chest…You are a very sensible lady and being positive about things is the key…DCIS is something i have read lots about, and the chances of it turning to cancer are very high…In fact i truly believe mine started there…and it surrounded the actual cancer lump which in total measured 7cms!!
Lots of Love to you
If you need a chat at any time give me a shout… 
Lauren.x.x.
Hi Lindylou
I agree entirely with Mole about getting a second opinion. I had DCIS and had a WLE and radiotherapy. Mine was inermediate grade. I discussed mastectomy and was told that happens usually if DCIS is widespread, not because of grade. If removed properly either by WLE or mastectomy, it is unlikely to return and most woman are almost certainly cured. Also, having a second mastectomy because of it may return does seem drastic. Clearly, everyone is individual and there may be lots of different factors in your diagnosis, but a second opinion wouldn’t hurt unless you are absolutely happy and clear this is the way you want to go.
Best wishes whatever you choose
Cathy
x
Hi Lindylou, I’ve been told I have low grade widespread DCIS in my left breast that is too big to remove unless I have a Mastectomy. I went for a 2nd opinion on the advice of my Consultant and the 2nd opinion agreed with her 100%. I was also recommended to have an MRI because of my age and to ascertain if the DCIS had already turned invasive and to check out the other breast. MRI did show something in the other breast which has been biopsied and diagnosed as Atypical Lobulsar Hyperplasia - not cancer, but something that could turn cancerous if left. My Consultant at the Royal Marsden said that ALH is something they really don’t know much about so the decision is mine. As I’ll be having a Mastectomy anyway she feels that bilateral now would give me the best cosmetic outcome, she would happily do the Right breast now using a DIEP flap but feels that if we need to do something else in a few years time it would be difficult to match and I’ll have used the only “spare” flesh I had for autologous reconstruction.
Having researched ALH it’s possible that I’d be 8-10 times more likely to develop an invasive cancer, due to family history, having DCIS, having LCIS, having Radial Scar, having Adenosing Sclerosis…You name it, it’s already there in my Right breast and as the Left breast is already full of cysts like the Right breast who knows what will happen?
I feel also that DCIS is played down a lot by the medical profession. I get copies of all my letters from my Consultant and my diagnosis is there in black and white as pre-invasive CANCER of the right breast so don’t let anybody refer to it as “only” DCIS. When they talk of removing my breasts it doesn’t feel like “only” to me.
Trudie.
Hi LindyLou
I have just been given good news about my breast cancer. I had symptoms of nipple discharge only - no breast lump.
A nipple sample finally diagnosed Pagets - a slow growing cancer which affects the nipple. A mammo had shown microcalcifications behind the nipple.
I had a mastectomy and was broken up by it… I couldnt bear the thought of loosing a breast. I took a shower instead of a bath, so that I didnt have to be naked for long; I couldnt bear to see my poorly nipple, knowing that it was going.
But then, I had a sobering experience. At my pre-med, a mark showed up on my chest x-ray. There was a chance that I had secondaries - my mastectomy was cancelled the night before, ‘to consider if my treatment plan needed to be changed’. They thought it was lung cancer.
Those 36 hours of hell, put loosing a breast into perspective for me. I hoped that I could loose my breast to save my life. Well, the news was good, I didnt have a lung cancer.
I walked into the hospital calmly and in control - I had the mastectomy. It wasnt as bad as I thought it was going to be - nowhere near. Uncomfortable for a while, but 3 weeks on, I feel great. Driving, shopping, gardening.
I received my path report last night. I had pure Pagets with some DCIS behind the nipple. If it hadnt been for the discharge, the first I would have known about it would have been when I felt a lump, when the cancer had invaded the surrounding tissue. I have walked away today advised that I dont need any further treatment and that my surgery has been curative. That feeling today has been worth loosing my breast… I am happy, and ‘at peace’ as they say. I can now look forward to a reconstruction at my leisure.
Hope this helps you
Lisa X
Hi Lindyloo,
I had dx of DCIS 3 years ago, and was horrified to be told I needed a mastectomy. I was given the alternative of lumpectomy and rads, but decided I’d rather go for the clean sweep option, didn’t want to be looking over my shoulder all the time (or should I say down at my boob!). Also, like you, I was told that many women who went for the lumpectomy ended up having further surgery later, so that seemed a waste of time.
Was in hospital 3 days, ten days later was away for the weekend dancing til dawn, and I defy anyone who doesn’t know to tell me which boob is the false one. Back at work pretty quickly… well, I got bored, I’m not good at doing nothing.
Still hang around here, they are a good bunch, and we all get the wobbles every so often.
Good luck with the surgery, let us know how you get on.
Hi Lolly
I’m so sorry to hear you have to deal with this at such a young age and its good to see you are on the way to recovery, like me you have a very positive attitude you are a long time dead, things come along and you have to deal with them then get up and dust yourself down sometimes it’s hard life does throw us some rubbish ,and yes since i found out Ive got dcis i have read lots about it and the chances of it returning are high and i didn’t want to take that chance always looking over my shoulder life is for living not worrying, i have this little prayer a friend told me and i live my life by it
Accept the things you cannot change
Have the courage to change the things you can
And the wisdom to know the difference
Lots of Luv and hugs
Lindylou
xxx
Good for you being so positive…Doesn’t it make you feel better eh!!
There’s always a smile on my face, even now my hair is falling out…Vain little me who carries an A4 size mirror everywhere never expected to have no hair and one boob!!
I’ve shed about 2 tears since my op and don’t plan on shedding anymore for a while! Keep me updated on your progress…
Lot of love to you.x.x.x.x.x.x
Hi Cathy yes i know the treatment for DCIS is WLE and radiotherapy but i have a family history and i always said if it were me i would have it all removed your a long time dead i got a lot of living to do .
Lindylou
xxx
Hi Silversue
fantastic to hear how well you recovered , positive thinking lust for life , cant be doing with the worry of have i haven’t i , Ive still got a way to go yet its all so scary but ill get there , carry on dancing silversue
Lindylou
xxx
Hi Trudie
it sounds like bilateral is the way for you to go like me you have family history and why have the worry of whats around the corner ,
yes DCIS is played down if left it would almost certainly turn nasty so just take it all away scooping a bit away don’t sound like the answer to me just get rid ,let me know how you are doing trudie
Lindylou
Hugzz
xxx
Hi Lisa
what brilliant news yes if you had not gone to check out that discharge it could be a very different story today , mine was found by routine mammogram when i went i couldn’t find the mobile van i walked round and round sainsburys car park and nearly gave up but because i had a lump that had been bothering me i thought no i,d better look again it turned not to be the lump i was worried about but another that i never even noticed
i am so pleased you are happy and getting on with life good luck with your reconstruction .
Lindylou
Hugzz
xxx
Hi Lindylou,
Another DCIS story — I was fineally diagnosed with high grade DCIS after 4 mammo’s 3ultrasounds 1FNA and a core biopsy. As it was widespread (4cm) I was told I was to have a Mx (no choice given…) and that I could have a recon. I then had an MRI which picked up another dodgy area, another core biopsy which showed a 2.6cm lump of invasive bc grade 3. I have duely had the Mx and a partial recon (coldn’t have the implant as I will need rads which hardens an implant) which is fine and am awaiting chemo in 2 weeks time and then rads and possibly herceptin.
DCIS is played down, even by some users on this site - when I was first diagnosed (before the grade 3 bit came to light) I had replies on a thread that ‘DCIS is NOT cancer, it is pre-cancer’ - which is true, but pre cancer means it will BE cancer at some point… and infact, mine had already made that transition…
So good luck with your planning - when do you get your plan? Will you have an MRI first? If it is all DCIS you won’t need any further treatment unless they can’t get a clear margin at the skin - that can be difficult wiht DCIS as it can be to the front of the breast …
Stay positive. I am!!
Big love, Td x
Hi Td
on the move now got date for sentinel nodes 17th June and hoping for bilateral op 4th July having expander cos not got enough tissue , I’m feeling very positive about it all at the moment, no I’m not having MRI, As far as i know its all DCIS until they check nodes and do main op guess they don’t really know, You have been through the mill sounds you are on the right road now keep that positive feeling going
Accept the things you cannot change
Have the courage to change the things you can
And the wisdom to know the difference
Lots of Love
Hugzz xxx
Lindylou