High Grade DCIS

I have been diagnosed with 27mm high grade DCIS with calcification in my right breast.  When I went for my first consultation I was told that they would be doing 'the wire' followed by radiation therapy.  In my head I was saying 'no, no , no I'm not having that'.  but was unable to speak due to the shock I was in. 

I went to my second consultation which was with a different consultant due to my original one being on 'compassionate leave'.  I had written out a couple of A4 sheets of paper explaining how I felt about the whole thing.  Whilst he couldn't bring himself to read everything I had written and after gong over the same ground three or four times, he said if it does come back you can pop back and we can just take a bit more out - OMG really!!   I was totally gobsmacked and said I don't think we are really getting anywhere, he left shortly afterwards!  

In the time between to the consultations I had plenty of time to digest the information I was given and do a bit of research to find out more and I have come to the conclusion seeing as it is High grade DCIS which has more of a chance of reoccurring plus the fact I really couldn't entertain 'the wire', that I would like to go forward with a double mastectomy with immediate reconstruction with the DIEP flap. 

Whilst I appreciate does not totally eradicate the chances of reoccurrence it does greatly reduce it and I can get on with being a wife and bringing up my ten year old son, safe in the knowledge I have done what is right for me and have peace of mind and get on with my life.

I have been to the Doctors about suffering with nausea day and night ever since my biopsy and the marker was put in which is still uncomfortable under a seatbelt.  I also said about my consultation and she is happy to refer me for a second opinion.

My third consultation is Friday @ 11.20am, I am hoping my original consultant will be back and that he can understand how I feel and be agreeable to my wishes.  'The wire' is already pencilled in for 31/1/19 it would be nice if they could change it for the double mastectomy and DIEP flap, I'm sure I'll be waiting a good few weeks until they can sort out a date for that.  Feeling optimistic.x

hi

welcome to the online community, sorry you've had to come and find us

it's a shock isn't it

I felt like a rug had been pulled from under me and I'd fallen into a black hole

once you get a grip and do a bit of research it does make a bit more sense but you're still acting in shock, disbelief and mostly denial mode.

I got stuck in 'denial' and 'disbelief' for ages.

Although I felt I was being proactive and making good decisions for me based on facts it was mostly out of the reaction, the fact I couldn't believe it was happening to me and I had to eradicate it, completely. 

Mind you I was told I'd got a second lesion in the other breast which didn't help. 

My concern would be that DCIS often hides the more sinister invasive components and it's not until after the lumpectomy that you really get to make that decision. 

I'm not sure what you mean by a 'wire' if you already have a marker in place ?

I would expect a marker to be put in and then used to guide the surgeon to what's been seen on the mammogram, ultrasound and MRI reports, DCIS is well differentiated to it's not that dissimilar to regular breast tissue to the naked eye. 

I had a large area of DCIS which only biopsied as DCIS but once they'd got the lump in the lab they found it was littered with patches of IDC  which was Her2+ and I had to have chemo, but the consultant had warned me that was a possibility, it is useful to have a good connection with the team. 

Let's hope you get your preferred consultant this Friday. 

Did they describe this 'wire' procedure  ?

hugs

Carolyn

xxx

I was diagnosed with 10mm intermediate grade DCIS at biopsy .  I had wire guided lumpectomy and radiotherapy.  Biopsy from surgery was high grade DCIS and clear margins.    I have been clear for 3 years now. 

I had to go to two hospitals in same day for sure and surgery.   The procedure for putting in this fine wire was less painful than biopsy.  I had to lie face down on a bed with my boob falling through a hole in bed.  Then they jacked up the bed like a car on a ramp,  yes it’s as funny as it sounds.  Then boob put in mammogram aching and local anesthetic given and wire inserted.  I think I sang a bit too loud to myself - I can switch off from surrounding either by a counting song or just singing a song.  I think it’s in my head but I’m sure I hadn’t as they were a bit smiley with me but if they had spoken to me during procedure I would have been unaware.  Then another quick standing up mammogram to check in right place and they covered with a small dressing and I drive to second hospital for general anesthetic snd surgery.  Honestly couldn’t feel or see wire.  I cane home same day and didn’t need any follow up painkillers after leaving hospital.

A double mastectomy and reconstruction is major surgery with longer recovery but you do avoid the 3 weeks rads and have mire certainty that you will remain cancer free.  I don’t regret my decision but I do get stressed around time of annual check up.

Hi Highgrade

Sorry to hear your diagnosis and subsequent trauma at the thought of the wire. Sorry, can't help you there, but will be interested to see how you get on with the idea of a double mmx with your consultants - are you private or NHS?

I saw my surgeon today and was advised a double mmx would very unlikely be sanctioned on the NHS for my case.    I have been given the option of a single mastectomy,  after 22mm high grade DCIS was removed with good margins whilst going through nipple removal for Pagets. The DCIS was not seen on mammogram or ultrasound prior to the Paget op.   So because they don' t know if there maybe other areas I have the option of a single mastectomy OR annual screening.  Not sure what the point of annual screening is though when they couldn't find it in the first place. In a year anything can happen I convinced myself.

So my thought process since my results last week ended up with me wanting a double mmx, my breasts have no aesthetic value to me, and one is half size and now "nippleless" (is that a word!?) so it seemed a no brainer.  Symmetry choice for me would be to go  flat chested, not a reconstruction!  But today I learnt from 2 x surgeons that this is outside theirs and most surgeons remit to remove ahealthy breast when patient has only been diagnosed with DCIS of other breast.  Even my insurance doesn't cover a prophylactic mmx.  NHS said I could have the single and then appeal later that the lack of symmetry was psychologically disturbing etc. 

So by the end of today my thinking has gone full circle and I am thinking of opting just to do regular screening.  Surgeons seem to have re-assured me somehow that the risk of re occurrence is low and if it does come back it can be successfully treated again, and percentage chance of it only being detected at the point that it is an invasive high gade damaging cancer is low.  They have said they will do MRI on both breasts for my peace of mind, once my lumpectomy breast has healed fully.   I know MRI wont necessarily find DCIS either and may throw up wild goose chases and  have to  endure a few pointless biopsies but mentally it may help in my decision to go for just screening option.   They haven't guided me intentionally  it just seems that is what I am thinking now.

Sorry realise I have rambled, please do let me know what your surgeon's reactions are to your wish for a double, thanks! 

Hi

Sorry to hear you’re going through this. This is certainly not a one size fits all game but happy to share where my thinking is at...

i had 10 high grade dcis. They never offered a mastectomy but as my boobs were large they did an overall reduction, removed the top ‘bad’ half and swung the lower half up to replace it then reduced the other side to match - who knew that was even possible? I had to go back for another op to get clear margins and although I was upset when I heard it was a doddle and I was working the next day. 

Where i’m at now is 2 weeks post radiotherapy and I feel largely back to normal. Looking in the mirror my boobs look great despite huge scars - they sit underneath so not visible. I guess i’m happy to have them as it feels like I can return to normal now pretending this never happened. I do get the fear hearing stories of recurrence so this is a very short term view and I guess may change in years to come but where i’m at now.

Good luck deciding, I think it’s easiest when they decide for you. Xx

Hi Rosie

I wonder if youd be kind enough to talk me through your recovery? I will be having similar surgery on 29th may and I'm dreading the recovery element. 

Thanks 

Nicola 

Hi

im really sorry that you are in this position. I had high grade DCIS and would have loved to have had a lumpectomy but mine was 4.8cm high grade and they said I had to have a mastectomy. I had a mastectomy with immediate reconstruction by DEIP which is a big operation and long recovery. Have you thought about reconstruction at all if you decide to go down route as it's good to get it all done in one surgery. If you chose just to have a mastectomy from reading other people's experiences on here you should be able to get back to normal very quickly. Immediate reconstruction by deip although takes much longer is definitely worth the hassle. Good luck with your choice. There is no right or wrong way to go. 

Hi

I understand that you had mastectomy with immediate reconstruction by DEIP. I would really appreciate if you can share your experience with me. I have decided to go through that route but worried about further therapy if required after reconstruction. I understand if  you have immediate reconstruction, you are risking the constructed breast if you have to go for radio therapy. I would like to know if you had to go through any therapy and if so did it cause any problems. How long was your recovery time and how painful was it ?

thank you

Jennypa

Hi

In my case radiotherapy wasn't needed. I only had the surgery and nothing else. My recovery from the diep took quite a while because I couldn't straighten up for a few weeks. I took normal pain killers on a regular basis once home and occasionally I needed an extra strong one in the evening. So long as you give in to it and do nothing it's fine. Each week you feel a bit better. Xxxxxx 

Hi

Firstly I was told Lumpectomy but then after further scans I was advised to have a mastectomy ( my boob was peppered with early breast Cancer Care and one nasty one) .

My DIEP was text book , my meltdowns were probably text book too !!!  I had two sections when I had my children 40 and 37 years ago !, so kind of similar recovery but without the elation . Yes it’s a big operation but the results are amazing , I’ve now had my 3D tattoo and feel complete.

Everyone’s pain threshold is different , I only had paracetamol, with extra codeine if I was going out . I had no real pain whatsoever. When you get home you must move about for a few minutes every hour. Bottom in , Shoulders back and hey presto you are just about standing straight. If you stoop you will hurt your back. My husband took me out a little slow walk EVERY day . When I first came home , I spent the first night in my recliner chair in the living room and I was fine. Next night I managed in bed with lots of pillows , then gradually got back to normal. 

I couldn’t look at myself in the mirror ( stupid now but well, it was how I felt in the beginning) I requested a visit from the district nurse to check me and they visited me three times , then I was fine . I cried in the shower every day and that was my release valve. 

I had chemo 6 weeks after my DIEP. finished last August . I had lasting side effects but now I’m getting back to full fitness and even climbed the Crags in Edinburgh at the weekend - pleased with myself. BUT remember I’m 63 ! You would probably run up them!

It is a huge operation but a brilliant one too. I’m lucky I didn’t really have a choice , which made it easier. YOU WILL need help with your home and family . Let your children see mummy’s sore tummy and even the youngest will understand not to touch you there. As for your new boob , cherish it , it won’t have any feeling. You will need to massage it with baby oil every day and do your physio . Honestly this   time next year you will have to delve into your deepest memory to remember all this . The human mind and body are great ( pity cancer can infiltrate it) . We are fighters, go with your gut feeling. Reconstruction isn’t for everyone. Do what YOU want. I won’t say don’t be frightened but if you are tell the medics ALL your concerns . I did and I woke up after 10 hours - HUNGRY!! They listened to my fears of being sick , of dying on the table etc etc . They adjusted my meds for the operation and I never felt sick once. 

Ooo if you have DIEP the secret of moving in bed is to dig your heals in and push with your heals. You will be fine. 

Good luck with your decision,

Wishing you well

Love 

Ruby Rose