Results after DCIS diagnosis

Hello everybody.

 

I need some advice/hand-holding but first some background information.  My journey got off to a rocky start in that I was originally given a misdiagnosis/possibly somebody else’s results.  This situation destroyed all my trust in my clinicians that they knew what they were doing such that when I was eventually told I had a large high grade DCIS, I felt I had to do my own research and double check everything.

 

Fast forward to post surgery results after mastectomy.  My already large DCIS is 50% larger still and contains a microinvasion.  At the results appointment, I asked about margins and was dismissed with “you’ve had a mastectomy, they are not important”.  I have not been given any information about hormone characteristics either and the microinvasion is being dismissed as being irrelevant. There is no on-going treatment/hormonal therapy other than to wait for reconstruction.

 

I appreciate that others on these forums are worse off than me and I should consider myself lucky but as a ‘worrier’ I suddenly no longer feel in control.  Some DCIS patients (especially Americans) seem to know everything in detail.  I want to do everything possible to beat this but now feel that that aim has been compromised by lack of knowledge.  Do other DCIS patients know more than me?

 

Thank you for allowing me to rant and put down my fears.  Please do tell me just to get on with life!

 

Ez. X

 

 

You poor thing.  Have a bloody big virtual hug, glass of something, cake and flowers.   They need to test the cancer and pathology takes some time.  If you had non invasive cancer then surgery is generally the main therapy.  You should have had a letter detailing the initial biopsy results plus update letters rom your hospital.  Mine generally come about a week after the appointment.  They should copy in everything sent to your GP.

 

the pathology will determine the therapies and it can take up to three weeks after surgery.  Essentially, the path people are the key people in all of this.  My stains done on the margins took three weeks.  

 

best wishes and look after yourself.  

Hi Ezzie,

Sorry you’ve had this hassle, no wonder you feel the way you do.

Although it could have been communicated better, margins are important for breast conserving surgery but as you’ve had a mastectomy, it has all been removed, so to speak. For those of us who have lumpectomy, margins are important as the surgeon needs to know if the whole tumour has been removed. If not, then a ‘shave’ is needed to get clear margins. 

Although it’s good that it was said the micro invasion was irrelevant & other treatment such as hormone treatment was not indicated, as communication was not as good as it could have been & you need some clarification, do you have a BCN you could contact? Your GP will also get a copy of everything, so it maybe an idea to make an appointment to go through it. Also, it might help to ring the helpline above to talk it through. 

ann x

 

Thank you both for providing advice, support and hand-holding.  The fact that Flyingarcher took time to respond before your own surgery was especially appreciated.  I am sure you had better things to think about other than me whittling on.  I have to see my nurse practitioner on Friday for a tissue expander infill.  Not only is she lovely but is also into treating (and listening to) the whole caboodle that goes with a bc diagnosis.  I’ll pick her brains too.

 

Take care both and Flyingarcher, I hope recovery after a second surgery is going well. X

Hi Ezzie, I think different hospitals have slightly different approaches around DCIS - I know there is a long-running thread on here around whether people have had tests for hormone receptiveness - some places do, others don’t. Mine was tested as positive but I’m still not taking tamoxifen or the like. I had widespread DCIS and mx - there was some concern about margins afterwards as they couldn’t get a 1mm margin where the breast tissue sat under the skin but after some back and forth and a second opinion from a different consultant it was decided no further treatment was needed.

Having said all that, you sound (like me) like someone who wants to know what’s going on - you are absolutely within your rights to have any information or results that are available so you can decide you are happy with any decisions or plans - don’t let them fob you off with you don’t need to know about that!

Hope you get some answers when you see your BCN x

Hi Ezzie

 

second op was a doddle and nicely healed up so IDC cancer is gone but unfortunately just been told that the margin is still not clear as have dcis.  Bugger!  So can have more margin clearance or mx.  The latter may mean no radiotherapy but then a smal chance.  Then there is immediate reconstruction or not - all of those options sound horrible.

 

just thinking about just getting rid of it all or going simple and chancing another margin thingy.

 

problems, problems.  Just feel today like cancer has got me in its teeth.

Hello all,

 

Lizred, thanks for your support.  You have hit the nail on the head, yes, I am a control freak when it comes to my BC.  I very definitely want to know the facts and will do research from respected sources to the Enth degree!  Unfortunately, I didn’t get any more information when I saw the nurse practitioner last Friday but I haven’t given up yet!

 

Flyingarcher, I am sorry to hear that you have landed up in a real quandary as to what to do next.  I started out with having to make a decision between lumpectomy and MX. I found that a frustrating one to make and I wavered many times before settling on a solution.  With hindsight post-op, I got it absolutely right but I totally understand the turmoil which you will be now going through.  Only you will be able to understand your attitude to the scale of treatments applicable to each option.  If however, I can help answer any queries relating to how I found my surgery, (Skin sparing MX with phased recon), let me know.

 

Ezzie. x

I have DCIS, which I had removed three weeks ago, I now have to go back this Friday for another operation, as they found another 35mm.  I have family breast cancer history, losing both my Nan and Sister, so I am very concern that they are not giving me a full masectomy, which would make sence, but they are going for another lumpectomy.  I just do not understand what they are telling me when I go into see them.  I feel I have not questions at the time, but think of lots when I am at home.

Has anyone else had two operations for DCIS, and what treatment did you have after.

Hi Lizzie,

 

Sorry I can’t respond directly to your query about having further surgery after a lumpectomy - I went straight to mastectomy from the outset as that fitted my personal risk profile best.  I was initially recommended a lumpectomy too.

 

A tip I can give you though is this.  I have kept a notebook so that anytime I thought of a question I jotted it down so that I didn’t forget about it during an appointment.  One of my sisters usually went to my appointments with me and they were under strict instructions to make sure all the queries were answered having been briefed beforehand and were the note takers during the appointment.  Sounds extreme but it worked well for me.  Do you have anybody who can support you in this way?

 

I expect that you will be scheduled for radiotherapy as follow up treatment.  Have they told you if they do a second lumpectomy that you will be left with a reasonable cosmetic effect on your operated boob or will you need some form of reconstruction/symmetry adjustment to the other boob?  Just a thought that you may want to check on.

 

I hope all goes well on Friday.

Ezzie. X

Ok Lozzie. How are you feeling? How did it go today? Xx