Newly diagnosed DCIS

Nafeesa

I was actually diagnosed with high grade DCIS in the right breast only about 6 weeks ago. Wasn’t aware if this network discussion until recently. Wish I had known earlier. Had a lot of decisions to make and everything was so overwhelming. Was told I needed to have a full mastectomy done. I couldn’t decide on whether to go public or private, whether I should have reconstruction and what type of reconstruction, whether to have a unilateral or bilateral mastectomy done. Anyway after a whole lot of scans and biopsies, research and contemplation, I have decided on a unilateral mastectomy with an immediate autologous reconstruction through the private system. I think I’m happy with my decision but still worried in may come in the other breast. Any one have any input on gene testing?

arpie

So sorry to see you here, @Nafeesa -  joining the club you never thought you'd join.  It is a real roller coaster ride - both for your emotions & physically - early on, it is like you are on a conveyor belt - do this, go there, come back, go back there ..... 
 
Have you been assigned a Breast Care Nurse yet?  They will become an important part of your team - and probably the first person to check with, if you have any concerns, specially after your surgery. 

I hope you have good family & friends supporting you - if they offer to help (by way of meals, mowing your lawn, travel to & from appointments etc) say YES!  ANYTHING to take pressure off you at this point in time. xx. Consider recording all your meetings on your phone as it is very easy to miss bits at the time .... you can go back over it later, if you need to.

Ask away on ANY question here & you'll get knowledgeable answers from those who've 'gone before you'!  You can also use the 'Search Function' (click on the magnifying glass) and to see previous threads on the subject.

Gene Testing - BRCA gene?  Is there a history of breast cancer in your family?  If so, that would be a yes from me.  Eventually, the hope is that it is done to everyone with all major diseases like cancer, as it is the only way they can work out who is likely to get it in the future & how to possibly circumvent it!  The Yanks have it done at birth ... why not Australia? 

There are also a few 'different brand’ genome tests available that check the DNA of the cancer to see if it has mutated from the ‘original’ ... and they then suggest specific drugs to combat it, if there are any.  The tests are usually about $5000 - and eventually will be subsidised ... just not right now    The results from this one can indicate if immunotherapy would be of use to your treatment, if needed.

I went private with my surgery nearly 5 years ago, so I knew it would be done sooner & then it was GONE!  (I had my biopsy results on Jan 5, saw surgeon on Jan 12 & had surgery on Jan 15!)  Just be aware that there CAN be 'out of pocket expenses' with going private even if you have the highest health care cover. Your surgeon should give you a 'quote' on expected out of pocket costs.   My out of pocket costs were about $6,000-7,000 over the next few years, as quite a few things weren't covered by Medicare or Health Care Plan - even $500 of my pathology (which really surprised me!)  Then I went public for my radiation & it cost me nothing.  

Whereabouts are you (you can edit your profile & put in your city or town/region.)  If you are rural/regional, you can claim on travel & accommodation expenses thru your state Gov (we have a private group for rural/regional members, to discuss stuff.)   We also may have members nearby who you can catch up with for a coffee & chat now the covid restrictions have lessened xx

Feel free to jump onto this thread & read a bit about the whole forum - including tips on what to take to hospital with you xx.  There is also a link to some 'tick sheets' that you can fill in & take to the meetings with your medical team.   We have many 'off topic' threads, where you can chat about your gardens, art & craft, even your furkids if you have some - and a couple of joke threads - yes, we can even have a bit of a laugh xx
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

Remember  .... take lots of deep breaths - take one day at a time ... keep doing what you love doing - keeping busy really helps stop your brain going berserk .... DON'T use Dr Google - a lot of info there is not relevant to your own condition & treatment & it can be downright scary going down some of those rabbit holes!  

take care xx

Cath62

Hi @Nafeesa, sorry you find yourself in this situation. This group is fabulous support. @arpie has given you great advice. I had gene testing and my results were that I don't have brca 1 or 2. There was alot of cancer in my family so I decided to check.

The brca genes aren't very common at all so it's a rare thing to have it. I got this done privately in Brisbane through a dr who specialises in this work. It cost about $400 and took 4 wks to get the results. I didn't do it before my treatment.

 My breast cancer was aggressive and had a high return rate but I am now nearly 3 yrs from my original diagnosis and doing great. 

Stay well and ask any questions of the group. We are always happy to help.

Nafeesa

Thank you so much for you kind advice and support. Sorry I’m still trying to navigate my way around this network site. 

I’m sure I’ll be asking a lot more questions. There is so much stuff to know and learn. 

I have spoken to some breast care nurses. They are wonderful and very informative. 

And am getting a lot of love and support from family and friends. But the ultimate decision still comes down to you. And they can be very daunting and difficult decisions to make. 

Although I can’t fault the public system at all, having a private room is very important to me, so have decided to go private, but by josh it is expensive. 

Decided on the autologous reconstruction as I prefer using my own tissue rather than having something foreign in me. I know it’s a longer recovery now, but I think it will be better in the long run. 

Feeling quite anxious of what’s to come ahead. I just hope it works out for the best. 

mholburt

Hi Nefeesa
Your situation sounds very similar to mine.
I was diagnosed with high grade DCIS so had a mastectomy with a DIEP flap reconstruction 6 weeks ago. I chose to go to a private hosp in Melb & am so glad I did. Sure, I had out of  pocket expenses, but I had a positive experience in hosp and have continuity of care with the same plastic surgeon, which to me is important. My "new" breast looks much like my "good" breast, even though it's smaller with no nipple. With a bra on, you can't really tell the difference.
It's the stomach wound and tightness of the tummy that has affected me the most, but I know it will just take awhile to heal.
Your fear of recurrence is normal, we all feel it! You are not alone. Try to focus on the present, something you CAN control. Surrounding yourself with positivity really helps to lessen the anxiety.

All the best on your journey. 💜

Julez1958

Hi @Nafeesa
I had my DIEP reconstruction in the private system here in Sydney - was very happy with the whole experience and the results I am now 16 months on .
But my out of pockets were steep even though I am in a private health fund.
If you ask to join the Choosing Breast Reconstruction  group on here there are lots of personal stories and photos I found very helpful .
Also have a look at the Reclaim Your  Curves website .

Julez1958

sorry @nafeesa I must have been having a seniors moment !
I see you are indeed in the private choosing breast reconstruction group !

Nafeesa

Have just gone in for 3rd surgery now. First had haematoma in breast and then another in abdominal wall. Last surgery ended up with high AF so now in ICU. They are still trying to monitor my HR and heart rythmn. That’s now 5 days in bed without moving. I just can’t wait to get out of this bed!

Geetha

I am sorry to hear Nafeesa. I shall pray for your healing. I was diagnosed with DCIS with a mastectomy of my left breast in November 2022 and it is slowly healing. I am on Letrozole hormone treatment. I am also prone to get keloids as I have one in my upper chest which is bit irksome. This is trying to show up on my sutures as well. Praying for this not to grow, By God's grace I am doing well. Taking things one at a time as I have put my trust in Jesus where I get my comfort and strength.

Nafeesa

Hi Geetha. Sorry to hear you’ve had to go through this ordeal as well. It is a slow healing recovery but just have to remember to take it one day at a time, and know that each day will be better than the last. 

Geetha

Thank you very much Nafeesa for your comforting words. As the saying goes "only when you have an headache you will know what is headache". I now fully understand what is like going through cancer. I am with you in the journey and remember to pray for all my friends going through this. God's blessings.

Nafeesa

So true. Take care and all the best to you.