High Grade DCIS

Hi Paula, calling the BCNA helpline may help, just to talk to someone. Your feelings are valid, and relevant. I've learnt we all have our own story and you don't have to face this period alone. I have found the BCNA so helpful with so many resources hand, but all you need sometimes is just someone to physically talk to. It's a scary journey that's for sure, we are here for you, I'm post unilateral mastectomy myself and still dealing with the realisation of losing a breast. It takes time, be gentle with yourself. Hope this helps a bit. 

@MrsPP

Losing a breast means different things to different people - and all those reactions are perfectly valid. Your GP may have meant well, and may consider losing a breast doesn’t compare to losing a leg or an arm, but it’s not her breast and her opinion isn’t yours! 

oh my gosh @MrsPP - it definitely sounds like it was missed - and your GP hasn't exactly been compassionate with your diagnosis & anticipated surgery :(   .... I can fully appreciate your distress xx

With dense breast tissue there is a bigger chance of BC being missed.  Mine was missed (I had my mammogram just 4-5 months before my GP felt my tumours.)  A 2nd MG also missed it, even after my GP said where it was - but a biopsy was suggested & that is where it was confirmed. 

My own discovery/diagnosis went over the Xmas/New Year period too, and those time frames, whilst not ideal, are acceptable. Mine started in Oct, finally getting a biopsy between Xmas & New Year & diagnosed with ILC on Jan 5, with my surgery 2 weeks later.

In the mean time, whack up any questions that you have and we'll do our best to answer them honestly.  I'm glad that you've found us, as we've all 'been there, done that' and know all the emotions that go with diagnosis.

Try & keep yourself as busy as you can over the Xmas/New Year period, doing things you love doing (I fished every day!) - and I'd also suggest you listen to Charlotte Tottman's podcasts (link below) - she is a specialist BC Counsellor who was diagnosed about 5 years ago & had a double mastectomy & chose to remain flat - so knows what you are going thru. Her podcasts are very easy to listen to and are from the heart.  She found that her own 'reaction' to the news was different from what she was 'advising' her patients .... (A news article on her is below as well as a PDF for you to read) :
http://www.drcharlottetottman.com.au/my-podcast.html

I concur with @tina_m2 .... call our Helpline on Monday 1800 500 258 (9-5) as the office will be closing Monday afternoon until Jan 6th. (Tho you CAN book a call during this time.)
BCNA’s Helpline will be closed from BCNA’s Helpline will be closed from 5pm Monday 23 December and will reopen on Monday 6 January at 9am (AEDT). During this time, you can request the Helpline team to call you back when we reopen by filling out this Form: 
https://www.bcna.org.au/helpline-self-referral-form/

You can read more here:  
https://onlinenetwork.bcna.org.au/discussion/27109/friday-update-20th-december-2024-bcna-christmas-closure-details#latest

Have you considered having reconstruction, following the Mastectomy?  We have 2 private groups that you may like to join ... one for those having reconstruction and one for those who choose to remain flat.

https://onlinenetwork.bcna.org.au/group/29-flat-chat-no-breast-reconstruction

https://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction

take care & all the best.

&MrsPP  I saw Emma Clarkson for a second opinion and she is absolutely amazing ! You are in good hands 100% she has a breast care nurse that you could reach out to !    Good luck !!!!!! 

@MrsPP - I had a double mastectomy & immediate recon on 20 Nov (DCIS grade 3 aggressive).  I've always been told I had dense breast tissue which makes finding anything abnormal in the breast difficult.  I had a mamogram in late August - it was 'all clear'. I was in the Breastscreen 'high risk' program which gives me a free MRI each year.  It was originally booked for Sept however they had to reschedule to end Oct.  Breastscreen phoned to advise MRI showed 'something' and they had me go in a few days later for a targeted u/sound.  I ended up with another mamogram & u/s on 1st Nov and was told at that appointment after the biopsies they were fairly sure I had cancer.  They double checked the August mamogram and it definitely did not show anything abnormal.  When I had the double mastectomy, everything was sent to pathology and they then discovered a second cancer in the same breast - larger than the original but it was not detected on any imaging.  I was told after surgery that my breast tissue was difficult to remove so when I have my next appointment, I'm going to ask for more detailed information on that because that really did scare me to think that imaging I had in early Nov didn't show an aggressive cancer that was picked up via pathology on the 20th Nov.  I am so sorry that your GP was so 'blase' about your diagnosis; you needed empathy and compassion from your GP - not a thoughtless statement.   I believe most 'specialists' go away on holidays from now until the first week or two of the new year which is not great for those waiting for appointments.  I was in a complete daze from when I was told there was an issue with the MRI and if I'm honest - I think I'm still in that daze, so I really do feel for you, having to wait so long.  Like I said earlier, I did have immediate reconstruction.  (I have posted in the 'choosing breast reconstruction' group)  I'd be happy to answer any questions you have on my experience

Hi @MrsPP....my DCIS story is almost identical to yours!!.  Dense tissue...same symptoms...but biopsy negative. My surgeon took the duct out on 27th Nov 24...and found 3 areas of DCIS. End result I am having a double mastectomy and sentinel node biopsy on Monday 6th January.  I've been on a roller coaster of emotions...mainly shock...but know it has to be done. Am choosing to stay flat...probably coz I'm older...in my 70s though incredibly active.
I relate to all you're feeling. 
Feel free to message me....I'm just north of Brisbane......Jacki

@jmr all the best for your surgery tomorrow. Thinking of you.

Thank you xx

@MrsPP - I hope your consult appointment tomorrow with Dr Clarkson goes well and she is able to understand your concerns and be thorough in her explanation of what will be involved. Thinking of you.

Hello to you all, thank you for your comments, what a lovely bunch you are and @May2024, I appreciate you remembering my appointment, so thoughtful. X @jmr all the best to you too tomorrow, thinking of you. Xx. I have my questions prepared, not too sure if I’m prepared mentally, but us girls are strong, and I’m in good hands.  Thank you for sharing all the resources too, amazing help. X