High Grade DCIS

MrsPP

Hello all, fortunately after listening to a podcast this morning, I have found this site, thank goodness!

Due to having dense breast tissue, I believe my DCIS has been missed previously, only MPO, but with my nipple showing signs of inversion from February 2023, and sporadic nipple leakage since then, I've had mammograms and ultrasound, plus saw a specialist in April 2024 but no diagnosis, no sign of a problem, until November 24.  Ultrasound found a lump behind my nipple, however MRI has found a 7cm x 3 cm x 2 cm mass!  What was to be a small lumpectomy is now going to be a Mastectomy, and I am in shock.

I've had 4 biopsies now and all show DCIS, will have lymph nodes biopsied at time of surgery to check I'm clear, which I'm hoping for.

I was originally under Dr Chris Pyke in Brisbane but he is retiring, and has referred me to Dr Emma Clarkson, at Mater, has anyone experienced her before?

I'm not having another consultation until Jan 6th, and am feeling that I've had this diagnosis and been left to deal with it without any advice of communication, is this usual?  I suppose that's why I'm here, I am looking for support.  I've just been told I'm to lose a breast, and my GP actually said, you didn't have breasts before you were 11, you'll get used to not having them!! WTF!!  I said to her, I have had my breasts for 45 years, I'd rather keep them!  I want to scream!!

Thanks for listening, I do understand there are so many in a worse position than me, I really do.  I appreciate you being here and sharing your stories, advice and ears. Xx. Paula

tina_m2

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. 

Afraser

@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! 

A practical course is to consider what you want and are able to do. Do you want immediate reconstruction?  There are groups in the network that can advise on reconstruction options (and costs) also on staying flat ( I had a single mastectomy and no reconstruction). You can of course wait and make a decision later when recovered from surgery and able to gauge how you feel about being mono-boobed. 

You can make a list of questions. Do you have a breast care nurse? She may be able to advise also.

Most find the mastectomy itself pretty straightforward and usually not painful. Reconstruction can be more demanding. 

Most of all, you want to know that your surgery is successful, the cancer is gone and what treatment is recommended to ensure it does not return. 

An occasional scream may be fully warranted - none of this is easy. As @tina_m2 says, it takes time and gentleness with yourself. Best wishes. 

arpie

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.

alex76

&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 !!!!!! 

May2024

@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 and I'd be happy to answer any questions you have on my experience, over on that group).