Mastectomy/ reconstruction for me now, it looks...

Dizi

I'm 43, and went to the Breast Screening that came to town in beginning Dec last year. As thought with a little bit of BC family history (grand mother/ aunt) I would be go for routine checks every 2 years or so after 40!
Lucky I did (I guess)...I hadn't felt any lump or anything.

Results:  10mm cluster DCIS (intermediate). So Jan 10 I went and got a lumpectomy. Results ended up showing up a 5mm invasive cancer (low grade)  just within in the surgical cut. So I went in for 2nd lumpectomy on 31st Jan, and an extra shave of tissue taken + got sentinel node out (which they didn't do first time as dye didn't show up any nodes...).

2nd Result:  node is clear. But more DCIS (interm/high) shown up...besides the original first cluster of DCIS nothing else had shown up in previous mammogram/ultra sound...so that makes me worry about what may not be showing up on my other breast now.
So with the follow up with surgeon yesterday...the team have recommended a mastectomy/ reconstruction as opposed to radiotherapy option. And to start on hormone therapy soon, while I make my decision...I'm getting a referral for MRI to check other breast...so can decide bilateral mastectomy?
And my mum thinks I should get the genetics test...?

I have been really calm and positive for most of the process so far...but now its starting to be build up and all the info is starting to clog my thoughts, trying to decipher info, and what I should do etc.  plus trying to answer the questions from friends/ family...
On top of that, have gone Private over Public, and some out of pocket expenses are mounting up (pathology invoice was quite a shock with a $600 to pay after medicare/ health fund- geez) ...especially as I have had two stints of surgery now. I'm too clueless to know to even ask about some of these things until its done - It sure is a learning curve!

I am a bit slow off the mark at finding this forum too. It is very helpful to read through other peoples experiences and kind words of support and advice given too...

iserbrown

Hello, sorry you had to join us but we'll all help you through!  Crumbs, one day no worries and the next is like who the? what the? information overload. Do you have a breast care nurse?  After the MRI you may have a clearer head for decision making.  Take care xx

nikkid

Hi Dizi - I was very similar...no lumps or bumps and just a mammogram to check (thinking all would be fine). I ended up having DCIS and a small  area of invasive carcinoma. I had a vertical skin sparing mastectomy (with insertion of an air expander implant as an interim measure). All the margins were good, the nodes were clear so I've just been on Tamoxifen. Now, 12 months later, I'm preparing for my full recon. I'm glad I took the time to rest and recover before the next round of surgery....so I know how you're feeling. Thinking of you xxxx

socoda

Hi Dizi, I know you are currently on info overload but there is a specific area on this site that is a closed group for breast reconstruction and you can read about and ask questions for the very many different types of reconstruction  lhttp://onlinenetwork.bcna.org.au/groups/ This is the link for the online groups, just click on it and then click on join the breast reconstruction group and you're off and running. Wishing you all the best. Xx Cath

mum2jj

Hiya Dizi,
Welcome, yes so  much information.  It's great you have found the network now, lots of information and support.  At least this may help with the information overload, chatting with and finding support from others who have walked your path.  I have just joined you up to the choosing breast recon group.  I know it's more info but we have a great link in the announcements where many generous members have share photo's of their reconstructions.  This may help a little with the decision making.
Big breath now and one day at a time.
Hugs
Paula xxx 

primek

I ended up choosing a bilateral mastectomy and immediate tissue expander reconstruction due to my family history and the fact my cancer wasn't picked up in a mammogram 5 weeks prior diagnosis after I found a lump. I had dense breasts apparently . Although I now know I don't carry my paternal braca1 gene mutation, I still have a half sister (deceased from bc) and a niece (thriving and cancer free 14 yrs) that have had breast cancer and they believe we most likely carry a yet unidentified gene mutation. I am happy with my decision even knowing I don't have a gene known yet. And am delighted I don't need radiotherapy as I was node negative. I miss my breasts. But I would still make the same decision now, as it was the right one for me. The gene test meant at this time I don't need more surgery to protect from uterine cancer.

Goodluck with your decision. Once you have made it you will feel better. We all have doubts deciding what we should do.

Kath x

melclarity

Dizi! Hey sending a big hug!!!! because sometimes when on overload thats all you need with no words!! I too started like you routine mammograms due to my Mums BC only, in my late 30's I had DCIS 2011 at 43 radiation and tamoxifen 4yrs and then a recurrence in my scar from lumpectomy hmmm, in 2015 Chemo and Arimidex am ER+ only and had genetic testing only because we needed to know for prevention whether necessary to do a single or double mastectomy. it was negative and my nodes were clear and all body scans clear. I was out of pocket $800 for genetics, crap! have to have specific criteria, their criteria, I needed more family history. Anyway, I always went private however my chemo cost nothing and my Mastectomy/Diep Flap Recon in 2 weeks is through Public as my Surgeon also works their too with a Plastic Surgeon. So lucky!!! so no out of pocket and I was Category 1 because of recurrence. Lots to take in, so one step at a time. Dont hesitate ask away, lots of support here. Melinda xo

Jennifer1982

Hi Dizi,

I just posted a question about whether to reconstruct or not after a bilateral mastectomy. So that's obviously what I chose! My story is this. I am 34 and had approx 3cm of DCIS in each breast, after surgery they found 2.5mm of invasive. For me the double mastectomy was a "no brainer" because with DCIS so widespread, I felt something had gone really wrong with my tissue and I wanted it gone. I also thought it would be easy to miss something if I had lumpectomy. I also was able to avoid radiation (which I think would have had to be across both sides if I'd kept the breasts). One of the DCIS areas was very close to a nipple. Although I was thinking about mastectomy already, once the surgeon told me the nipple was going, there was no way I was going to go through all the rigamarole of radiotherapy for nipple-less boobs. Although I am feeling weird about the aesthetic result of the recon at the moment (I'm only half-way through the recon and tissue expanders are quite different sizes at the moment!), I don't regret doing the big surgery at all.

All the best with your decision making and I am sorry you've had to join these forums.
Jen

Jennifer1982

P.S. Once I chose the double mastectomy, the surgeon cancelled the MRI request. So I got to avoid that scan too! He also booked me in for surgery really quickly so I got the ball rolling rather than having to wait for MRI results. This pleased me because I was a bit of a nervous wreck at the time!

primek

Oh...they did my MRI pre my double to determine if should have bilateral sentinal nodes biopsies...which I didn't fortunately ...just the one side.

Brenda5

Sorry to hear its spiralling into something more than you bargained for. If you haven't been contacted by a breast care nurse yet, type in your post code and contact your nearest one. She will play as your advocate in chasing up test results and help you navigate the finances and everything. They are worth their weight in gold those nurses. http://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx

Dizi

Thanks for all the comments!
Plus the links to the reconstruction page. It really is helpful.
I've had a break from it all for last few days just getting on with work and some chilling out time...and now just getting back to my now reality, researching and decisions.

I do have MRI now booked for next Monday. And then the consult with the surgeon on Wednesday...to get the low down and find out more of what my options are, plus suss out the private vs public with him etc...
I am feeling I would want the immediate reconstruction if possible, (and getting my head around the bilateral mastectomy option as my possibility - ( a friend from my swimming group said - barbie boobs! - which made me laugh! )...but will find out more about the benefits of delaying it for later or not. Costs etc.

I have also started on the Tamoxifen this week...so bracing myself for any upcoming side effects etc...
I have given up my 20 year? habit of alcohol and coffee a few weeks ago. Plus eating much healthier...so I am feeling much better! - I think...? And hopefully that should help with what is still ahead..

I do have a Breast Care Nurse who has been great, and whenever I do speak to her I feel so much better...I typically try to manage things myself (and even find typing on forums really hard!) and haven't really rang or emailed her much...But I should and will embrace her knowledge and support a bit more...

Thank you all xx