confused and lost

hi everyone im new to the site but have already found some comments helpful was diagnosed two weeks ago with dcis had a excisional biopsy which has now shown higher grade all margins involved doc said only option is to have a mastectomy cos most of my right breast is affected now going for sentinel node lymph biopsy i went to my doc in january so has been long and drawn out was originally discharged but brought back cos fnac showed suspicion im feeling confused and lost about everything and not sure how to cope with it all or what any of it means

sweetheart, can’t help with medical information, useless on that front… But - there are so many of us out here…we can virtually hold your hand and, hopefully, give you a bit of a boost. All of us have been where you are now, and we can sympathise…I am sending you hugs down the internet cable! xxxx

Hi
Sorry to hear of your dx, you have come to the right place on the forum there sre lots of very knowledgeable ladies on here who im sure will post soon, I am 2 weeks post op had w/e and node clearance for grade 3 invasive bc with 3/20 nodes involved, to be honest i too am still confused as everything happened so quickly, but if you are worried about anything call your bcn or the help line here they are the best ! once you see the surgeon he/she will explain everything and the process to you, I was fortunate to have a lumpectomy as my lump was very close to the edge of breast and I am large boobed ! so mx not necessary, I think there are many reasons for choice of op so try not to drive yourself crazy …im sure your team will do whats best/right for you

Take care let us know how you are doing

i too was diagnosed with widespread high grade dcis and had no choice but to have a mastectomy. I had an immediate ld flap reconstruction and thankfully no nodes were infected. Its a VERY scary place when you start all this treatment but my surgeon put thinks into perspective when he said “give me a year of your life and i will give you your life back” and that was true. I was consumed in the “cancer bubble” for nearly a year but within that time i returned to work, which is a very physical job and i have continued to live my life to the max. the only reminders i get now are when i have my annual mammogram and check up - you WILL get there, i promise!!!

big hugs

deed
xx

thanks for all the comments it has seemed a long drawn out process its three months since i went to see my doctor and just got diagnosis sentinal biopsy tomorrow plastic surgeon on monday so it seems to be moving quicker now ive realised by coming on here that this is more common than i would have thought helps reading other peoples experiences and advise given

Hi Babes…saw your post…I was diagnosed with DCIS in January this year and went on to have a WLE and SNB which were done together on the same day. Unfortunately the margins weren’t clear and as I had high grade DCIS was urgently recommended to have a simple mastectomy(luckily there was no lymph node involvement. They did not recommend a reconstruction straightaway but this will be an option down the line but not sure whether or not I will have one. I am now 5 weeks post op and am slowly getting there though I did have problems post op with infection and seroma but these have now resolved thank goodness.
It is such a scary process to go through but you will get through it…there is so much support on this forum and I have found it a real life saver and a tonic because here there are people who understand exactly what you are going through. So, wishing you all the best for your SNB, thinking of you, xx

I’m so sorry it’s been a hard new year period. In a way you’ve fine through the worst…the initial bombshell, all the worst fears when you know so little… In a way it’s helpful that this has drawn out a bit as I think some of us are bounced into things far too quickly.

I was dx with widespread high grade DCIS out of the blue in August…I had a stand alone snb like you, and lots of other tests because of the risks being high grade. I was recommended a mx because the DCIS was in two different areas…and I opted for an immediate recon…while you’re having an op, I thought it worth getting it over with in one go. I had to wait on the list of a really good plastic surgeon, but at least I had a plan by then and everything else had been tested and found to be ok.

I was SO scared, honestly, if I can cope you can so so! I was able to have a diep flap recon, which has given me a lovely flat tum and very shapely navel, better than before! The op wasn’t nearly as long as the leaflets say, mine was six hours. Having any of the surgeries is tough, and the diep involves an additonal area of your body, but once done, it doesn’t need upkeep. The results are very good and despite my fears, once the scars are faded there will be little sign. And the cancer cells are gone.

All the best for your appointments…hope all is well with the snb. The op itself isn’t bad, just give yourself time for the recovery though. Best wishes, Lynette

Sending you lots of hugs and support. I felt hopless yesterday and today, I actually feel a bit more normal, this site is great and the phone helpline are marvellous, I owe my sanity to them as they really helped me out of a black place last week xxx

sorry i have not been for a while found it hard to get my head around everything had the snb which is clear plastic surgeon told me that cos there is no clear margins that they have no idea if any other treatment it needed i’m told cos im not ample that silver lining is i will get a boob job on the nhs i’m not seeing this as a silver lining not sure if maybe i should in a place right now where i’m not sure who i am any more which is hard for me i’m an active 39 year old who gets on with life normally but finding it hard three locals and two generals restricted to what i can do and totally lost probably for the first time in my life

Hi Babes367
I know only too well how scary it is but you will come out the other side. Diagnosed last July and similar to you after having had two lumpectomies without clear margins I too had to have a mastectomy at the end of September as I had a high grade cancer but thankfully no lymph involvement. I was given the option of having chemo (6 FEC) which I went for and am now half way through 15 rads. All the surgery completely floored me as did 3 lots of general anasthetic and waiting two weeks for results each time as well. It does get better I promise. Send me a pm if you want to talk anytime.

went to see gp at weekend know got infection so on antibiotics so back to sitting and doing nothing for a few days go in for mx on 19th april plastic surgeon says best option for me cos they don’t know till two weeks after op if im going to need rads that they fit chest expander to be on safe side will have rest of recon when they know more so yet again gonna be waiting decided to talk to my family and tell them how i’ve been feeling feel a little bit better for that think kids have handled it better than i have has anyone else been down the chest expander root

Hi, everyone.
Help me.
Was diagnosed with DCIS high grade last Friday. Waiting for second operation to check the margin- no date yet.Feel lost, hopeless; have 7y.o. daughter,frightened,thinking all the time about her; foreign, no close relatives, only husband and older son,trying to hold it all together,can not sleep, can not concentrate on my course.Lost about 4kg in one month…
Was thinking of asking my doctor for mastectomy as oppose to the second operation- once for all. Can the patient ask for it or it is only the doctor who can suggest the way the treatment progresses?
And I do not know whether it is possible to check the whole body for cancer as I do not what coursed this weight lost- my anxiety or something else…
The seriousness of all it started to sink in, seems no way out. Suddenly feeling stupid for not talking to my bc( breast consultant?)properly, just accepting what he was telling me.
Thank you in advance for your time, whoever will answer, and sorry for my grammar.

Hi mommy47 and welcome to the BCC forums

In addition to the support and information here I am posting a link to the section of the website about diagnosis and you will find some information about DCIS which you may find helpful:

breastcancercare.org.uk/diagnosis

Our helpliners are here to offer further support and a listening ear on 0808 800 6000 lines open at 9-5 weekdays and 9-2 Sat

Take care
Lucy

hi mommy47 im not sure if you can request a mastectomy or not mine was suggested as after 4 different biopsy’s i still had no clear margins but it is worth asking if that is what you would prefer for them to do, try ringing your breast clinic and speaking to one of their nurses they are generally lovely and can answer most questions, i am really sorry to hear you are having such a bad time at moment but everyone on here are lovely and help each other through let us know how you get on i go in on thursday for my mx

xx hugs to you and your family

Thank you very much for the support. Good luck with your mx.Thinking of you xx

Hi Mommy47

you can ask to have a mastectomy but they may not recommend this but if you feel strongly about it do discuss it with your doc.

as for needing scans DCIS is ductal carcinoma in situ which means its contained within the ducts and therefore doesnt have the ability to spread elsewhere in your body.

here is the bcc booklet on DCIS which will give you more info…
www2.breastcancercare.org.uk/sites/default/files/Ductal%20carcinoma%20in%20situ%20(DCIS).pdf

good luck with your next op.
lulu x

HI MOMMY, I HAD DCIS INTERMEDIATE GRADE WAS TOLD I HAD CLEAR MARGINE. TRY NOT WORRY HUN. I DIDNT HAVE MX MY BOOB IS SMALLER THAN OTHER NOW BUT HEY WHO CARES. IM GOING THROUGH EMOTIONS LIKE I DONT KNOW WHAT. BUT HAVE FOUND MY BREAST CANCER NURSE AT MACMILLANS UNIT GREAT YOU CAN PHONE THEM ANYTIME. DONT ACT STRAUGHT AWAY WAIT AND SEE WHAT SURG ADVICES, THEY DEAL WITH CASES LIKE THIS EVERY DAY, AND ALTHOUGH ITS SCARY THEY WILL DO BEST FOR YOU. IM CHATTING WITH A LADY NOW WHO HAD SAME GRADE AS YOU AND HER SCARING NOTHING AS BAD AS MINE SO REALLY THINK ABOUT WHAT YOU WANT. TAKE CARE TRACY.XX

Hi Mommy,
Once you get the diagnosis of a form of cancer it’s hard not to worry about spread into other areas. After my dx of DCIS I was put through MRI, CT and ultra sound scans sorts in case the cells had mutated and spread. Fortunately the other tests were clear, but I was really worried for a time. Maybe the same tests will be suggested to you if there is any cause for concern.

It sounds as though your weight loss might be stress related though.
You could telephone the help desk here as they are very helpful.

Best wishes

Thank you everyone.You are all so kind.
Sleepless night again. Hence to occupie myself with something I am planning my visit to the doctor. And this is despite the fact that we-my daughter and I- are seeing pediatric gastroenterologist tomorrow and a good night sleep and a clear head is required…

Can one see the doctor whenever one needs? Or does it have to be through the nurse? It seems that to arrange any appointment with the doctor is very difficult ( long waiting time), and everyone suggests to go through the BCN ( my first use of the forum’s abbreviation))? But the nurse will not be able to make a decision regarding the scans, MX or else. Or does she passes the information on to the consultant?