Hello, new here with DCIS which has turned out to be invasive

Hi

Following routine mammogram in November 2020, I finally got diagnosis of DCIS (Ductal Carcinoma in Situ - ie 'contained') just 2 days before Christmas - not the best timing, especially when my mother suddenly and totally unexpectedly died just 3 days before Christmas 10 yrs ago.  So Christmas hasn't been a good time for me anyway but will be more difficult in future now.

So, scheduled for lumpetomy (wide excision) in mid-January but, just 3 days before then, I fell in front garden and badly damaged ribs/soft tissue which meant the operation had to be postponed until I was in better shape.  So, had surgery in February and clinic for results 2 weeks later where I learned the border was insufficient as invasive cells had been found very close to the edge of the tissue removed.  Further surgery was done the following week to include re-excision and Sentinal biopsy.  I returned to clinic just last week to learn that lymph nodes are clear (just 2 removed for checking)

I'm now being referred for Radiotherapy and have been prescribed Letrozole tabs as ER+

My 'journey', although much more straight forward and 'simple' (compared to many) has been very much a roller coaster ride, unlike when I had Lobular invasive cancer 9 yrs ago, also requiring lumpectomy, radiotherapy and hormone treatment as ER+

After biopsies (ductal area and a 'dodgy-looking' lymph node (turned out to be bruising due to fall (July 2020) where I dislocated [same side] shoulder and have nerve damage, still resolving).  At clinic, 2 weeks later, I understood from the consultant, I had NO cancer, although awaiting a further test.  So, the following week, went to clinic only to be told I had cancer!!!  I just couldn't understand how, one week I was told NO cancer only to be told the following week, different doctor, I DID have cancer.  This really screwed my brain (being a retired nurse, it just didn't make sense) so, I managed to get a further appt with the consultant to hopefully get some answers.  It turned out to be misunderstanding and he didn't realise I had forgotten I'd had 2 biopsies and he hadn't actually made it clear what he was talking about.

So then the fall, hurting my ribs very significantly, resulting in postponing the surgery.  After the lumpectomy in February (Op 1) amazingly I had NO pain whatsoever.  Boob tender to touch but NO pain.  When I wnt back to clinic 2 wks later, the consultant drained off 350 mls seroma!!!  I have to think the fluid 'protected' the tissues from rubbing (or whatever),  Boob regained some of it's normal size  ;)  However, I was also told of the invasive cells found and re-scheduled for further surgery the following week.

My dislocation of shoulder, with nerve damage, still has limited range of movement (nerve not quite recovered and muscles not responding properly yet, in spite of exercises / physio and the Breast care team / Consultant have been saying I MUST get my hands on head with arms/elbows touching the bed.  Well, at the moment, this is not possible, hard as I try, exercise etc.  It just won't go and too painful to push it.  So, I've been 'threatened' with mastectomy if I can't manage this as I won't be able to have Radiotherapy.  I don't think it has been intended to be a threat but certainly comes across as that.

So, I've been in a right state during the last couple of weeks, primarily due to the possibility of lymph nodes being involved, knowing my recent luck. 

I've had lobular invasive cancer 9 yrs ago with lumptectomy, radiotherapy and hormone blockers but that was as straight forward as one could get, unlike this time with all the 'bombshells' being dropped so, at least I've had some idea of what is / will happen.  I think that's helped but also, especially being a retired nurse, 'a little knowledge ...  etc' possibly hasn't helped.

Gradually, I'll get used to the idea that, all being well, no more 'bombshells' should be dropped although I've still got the hurdle of knowing if I can have radiotherapy with regard shoulder movement.  I did speak to one of the Research nurses at the RT site (another hospital) as I'm on RT trial from 9 yrs ago, finishing next year.  She said they have a lot of ladies who have stiff shoulders, for one reason or another, and they just work around it.  I do hope this will be the case and that she's not just being 'nice' and 'positive' but unrealistic...