DCIS - waiting for results

Hi there

I am new to this site and have spent some time reading through posts (mainly in tears)

I am 38 years old with a gorgeous 9 month old baby boy. I found a lump three weeks ago, saw my GP the following day, and was referred to my local hospital last Thursday. I had an exam, 3 mammograms, an ultrasound and a biopsy. I only had to wait half an hour for the preliminary results. Husband and best friend had convinced me that the lump was nothing to worry about, so I was devastated when the consultant told me the preliminary tests showed I had DCIS (had never heard of it before). I had a Wide Local Excision on Monday (still sore and so, so tired) and have to go back on Wednesday for the full results.

The consultant has mentioned the possibility of further surgery, or radiotherapy or hormone treatment if the cancerous cells are shown to be oestrogen-reactive. My mum was diagnosed with ovarian cancer aged 41 (two years after having me) and died from lung cancer.

I am struggling to cope with how I feel. My husband and family and friends have all been so supportive, but I feel in limbo. It really hasn’t sunk in yet. I am struggling to hold my baby as he is such a strong little boy, and doesn’t understand what’s wrong with his mummy.

I keep trying to hold the tears back, but it’s so hard.

Grateful for any help …

Thank you, and good luck to each and every one of you brave ladies

She xx

Hi there,

i’m sorry to hear of your recent diagnosis. It is tough and you’re inevitably very anxious but there are loads of people here to help you through the twists and turns your journey will bring.

Your story struck a chord with me as we seem to have many ysimilarities.

After a long complicated diagnosis pathway I was finally diagnosed with DCIS three months ago.I had a lumpectomy and was warned I may need more surgery. They didn’t get the elusive clear margins so I had to have another op. Unfortunately they still haven’t got it all so now I must have a mastectomy. I have chosen to have immediate reconstruction so I’m awaiting all that.

I lost my mum to BC and secondaries in 1994.For me,my diagnosis brought it all back. I also have two young children aged 4 and a half and 20 months.my feeling is,if the mastectomy will get rid of it then bring it on!

A diagnosis of DCIS is weird as it is pre invasive so in some ways we could feel lucky that it has been found early.I have been told repeatedly that the prognosis is excellent. I think it is quite hard to get the info we need about it though. There are a few threads on here about DCIS which are interesting and informative.I also found an american website very helpful too. I can PM you if you need it.

Sorry if I’ve gone on a bit, but I wanted you to know that I’m here for you and if I can be of any help I will,

Love Freddie xxxxxxxxxxxxxxxxx

Hi

Also meant to say, don’t expect too much of yourself too soon. You will be sore if you’ve only just had the op- I know it’s very hard with a baby but try to enlist help if you can.I was also extremely tired- so tired that I could hardly function-even harder with young ones isn’t it?! I was also even more emotional after my op’s- a few others have said that too!

So sorry to hear of your Mum.

Hang on in there- you are well on your way to getting this sorted,

Love Freddie xxxxxxxxxxxx

Hi She I can understand how you are feeling as i have had the same operation and I know you want to hide away and think it is all a bad dream. I had DCIS operation in Jan this year and had my lymph nodes out as well. I was terrified I couldn’t even look at the books I was given till it was over with I am sure your little baby doesn’t want to see his mummy upset you hang on in there and just to let you know I am thinking of you Take care Lindalou

hi all
im also just ben diagnosed with dcis and have 5 yr old and an 11 mth old baby. its so frightning! but comin on this site has shown me there are others out there too. im 27 and at the moment im feeling a bit like - why me? but il get through this i have the hosp this week to find out what surgery and treatment i am having!

Hi, I have just posted above, but just to say hi. I have just been diagnosed with dcis last week. I am waiting for a mammogram in just over 3 weeks, then possibly more surgery and/or radiotherapy after that. I will find out in 5 weeks what treatment I will need.

Hope your results are what you are hoping for. I will look out for your news.

J

Hi All

Just wanted to say to all of you waiting for results or post ops that it does get easier …promise …but you have to let yourselves get over the shock and the ops and then face whatever comes next and it’s no surprise that all of us have times when we just want the world to stop so we can get off…so have a good cry if you want to it does help.

I was dignosed with (microcalcification) DCIS in left breast in October last year I had three ops to get clear margins and was then told I would need rad treatment as well. I had the rad treatment in March but i don’t have to take any hormone treatment as my DCIS wasn’t hormone receptive. Rad treatment is tiring and can make your skin sore but other than that it is bearable.

I am now back at work and although it has been an awful journey I have come out the other side and all of you will do to.

Have faith and keep positive, I know it’s hard but its half the battle sometimes.

Phillippa x

hi all
been told today i will be having a mastectomy. i dont know the full ins and outs yet as i will meet with my surgeon in a few days.
i feel quite positive just now but knowing i will lose my breast is terrifying me. i know all these feelings are normal but crying one minute and laughing the next confuses me - never mind my family!!!

Hi All,
I had widespread high grade dcis and there was never an alternative for me, went straight for a mastectomy and lymph nodes within 2 weeks. Because i wasnt having rads i was able to have reconstruction at the same time which made it easier to get my head round. I have cried and cried but now, nearly 3 months on im returning to work and i can actually get dressed to go out without panicking over which bra will look ok - you WILL get there, its just sllloowww baby steps and deal with emotions as and when they arrive and try not to fight them - they are ALL totally normal.

good luck to you all

deed
x

OMG what a fright i got reading this She… i thought you had found another tumour… i though old threads like this were archived.

deed quite surprised you had nodes removed for DCIS as its not invasive and wont have spread to nodes… only heard of one person who had positive nodes after DCIS and they are writing papers about her cause it was soooo unusual.

i know there is a risk that there may be a bit of invasive cancer when they remove the DCIS and normally at this stage they would do a node sample… seems a wee bit extreme to remove nodes otherwise.

once you have the DCIS out there isnt risk of spread so although right now its a horrible place your in and very drastic surgery, in time hopefully you will get a bit of peace of mind that the DCIS cant spread.

JHS seems strange that they would leave the mammo so long after your USS… usually a week would be enough for the swelling to have gone down after the biopsy… good luck with it too… if you havent had one before it can be a bit of a shock as its uncomfy… but only takes a couple of mins and its all over.

mamadee… hope your appt with your surgeon goes well.

Lx

Lulu
I assumed that some of the nodes were taken because the dcis was really high. The pathology report also shows that i had pagets disease in the nipple. Im really not happy cause my insurance company wouldnt pay out for dcis and now they are saying that the pagets isnt malignant and invasive so wont pay out for that either - makes you wonder why you take these insurances out?!!
is it true that now that ive had my mx and because it hadnt gone to my lymph nodes then there is no chance of it spreading and appearing somewhere else in my body? I think im starting to become paranoid!!!
thanks for any advise from anybody!!!

deed
xx

Hi, just wanted to say that I also had some nodes removed when I had my bilateral mastectomies in March for DCIS in my left breast. My surgeon did this as a precaution, I think, and it has definately made me feel better knowing that it has not spread. As far as I know, Deed, it is true that having the mastectomy and clear nodes means it cannot spread - I hope it is anyway!
Samm x

Deed your right… DCIS is confined to the ducts and has not become invasive within the breast and therefore cannot spread to the nodes or elsewhere in the body… once the DCIS is removed you are effectively cured… although you could theoretically get a further episode of dcis or an invasive tumour in the future, but then theoretically you could have a heart attack or get run over by a bus in the future too.

as for your insurance pagets disease is associated with invasive tumours in the majority of cases and when they did your mastectomy the pathologist will have look thoroughly at the tissue to see if there is any evidence of invasion… sometimes its not apparent at the time of biopsy but obviously there was no evidence of invasive though.

so although its not good insurance wise, health wise its good news.

up here they dont remove nodes at time of DCIS surgery but if like i mentioned up there they find there is some invasion they will take you back to theatre and get a node sample at that point… and depending on the grade of dcis you may or may not get further treatment.

Lx

Hi this is my first post here, though I’ve been reading since I was diagnosed with DCIS in May. I’m 49 and went for my first mammogram in April, then got the recall letter and that’s when the worry started and I got a knot in my stomch which hasn’t gone away yet.
After the second mammogram came the biopsy and then the confirmation that there was DCIS that needed to be taken out. I’m ‘lucky’ in that it is only tiny, and I actually had the Wire localisation and WLE yesterday. That was not as bad as I thought it might be, even though the wire wasn’t in quite the right place first time.
Next Thursday I get the results. I know from reading lots of posts on these forums that I may or may not get clear margins. Also they said I may need to have radiotherapy. That doesn’t sound very pleasant at all!
The knock-on effects from having DCIS which is hormone-induced also bother me. I’ve had to have my Mirena coil removed, which I loved! And I’m probably going to be recommended to take tamoxifen which I’m told may give me hot flushes, weight gain and other menopausal sympoms. It’s all a bit much really when I felt perfectly well and had no lump or symptoms.
I guess this is just a bit of a moan as I’m feeling sorry for myself, and I don’t mean to belittle the terrible outcome that many of you with DCIS have had, of having a mastectomy. And my kids are grown up and my husband very supportive.
Thanks for there being a place for me to write this down. It does help. And best wishes to all who read this. Sussex Girl.

hi Sussex girl,
sorry to hear of your diagnosis. I have the mirena coil in and although im ER+ they said it could stay in, which was a huge relief cause i love it!
The waiting for the results is the hardest. Some of the ladies on here have been fine with tamoxifan so pls done believe all that you read. I had to have a mastectomy so havent needed rads or tamoxifan. I hope the margins are clear for you but if you have any questions at all then this is the place to come.

Lulu, thanks for your advice. I feel so much better after reading it. I had my first counselling session today to try and get my head round the fact of losing a breast - I didnt stop crying…and that was before i got into the building !!! lol

deed
x

Hi Sussex Girl,

I was diagnosed with widespread DCIS back in Sept 09 from my first screening mammogram. I had a mastectomy and immediate diep recon. I have been “lucky” in that I haven’t had to have rads or start on tamoxifen. Like you I have a Mirena coil in situ and my docs said that it would be far worse to fall pregnant (not started the menopause yet) and have many more hormones going round my body than the small amount from the coil. I am under the Royal Marsden so feel confident in what they advise.
I also understand totally where you are coming from as I also did not feel ill when diagnosed but now having had 3 ops I do feel different and sorry for myself at times, but given time and support it does get better. I am looking forward to returning to work and the sense of normality. (I have already been back to work after the first op and am off again for the 2nd and 3rd ops)
Hope your results are good for you on thurs, please let us know how you get on.

Marjay xxx

sussex girl sorry you had to have you mirena out… i only got mine put in after i had hormonal cancer and im keeping it lol

there really isnt enough research either way and some docs just dont want you to have any extra hormones where as others see that the amount of hormone released is minimal.

i think these are the type of things women should be given all the up to date info on so they can decide for themselves.

deed glad you are feeling a little more positive even though youve had a good cry… but tears help you heal hun xxx

Lxx

Deed, Marjay and Lulu, thanks for your support. I’ll let you know how it goes on Thursday. Am feeling rather bruised today, but have rubbed on some arnica cream and am hoping it will settle down a bit.
Good luck with your treatments. Deed, I do help the counselling helps. You can’t always show your family how much you are hurting inside but getting it all out to someone who is there to listen really does make a difference. Wish you all well. Sussex Girl.x

lulu thanx
app with surgeon went well i have the choice of either back flap or implant but have to have a meeting with the plastics team before decision is made… i have my sentinal node removal op on fri so feeling very nervous about it all now - its hitting me that yeah its really happening now! especially with all the appointments to attend - pre op assesment, xray, dye injection, consultations!!!
as for all the discussion of the coil - i had a implanon contraceptive implant in and have just had it removed. i wasnt advised to and was told the hormones were minimal but i just had this horrible feeling that an artifical hormone was in me and hormones are more likely what caused all this so i decided to have it removed myself - think my doctor thought i was mental!!! she kept sayin but your 27 and i was like - eh yeah tell me bout it and i have dcis!!!
anyone one alse been in this frame of mind on the hormone front or am i really just mental?? haha!

Hi ladies
Just to let you know I went for my results yesterday and they had not come back from histology so I have to go back next Thursday to find out what happens next! I’m getting better at being stoical as getting upset isn’t going to help anything. Still a bit frustrating though.
I’m a bit mad they were so insistent I had the mirena out, but maybe they are just being ultra cautious. I do get what mamadee says though, about not wanting artificial hormones inside you. We just have to make the best decisions we can with the bits of info that we find out and how we feel at the time.
Hope you all get to relax this weekend
Sussex Girl.