Mastectomy for DCIS

JLumb

Hello. I am 42 and have recently been diagnosed with DCIS and am having to decide between a lumpectomy (with likely radiation) and a mastectomy. The DCIS is 33mm long, and categorised as high grade. If anyone reading this has also had to make this decision and would be happy to provide some insight into their process it would be much appreciated! 

My instinct at the moment is to opt for the mastectomy, with no reconstruction. Both my dad and my sister passed away in their 40's from aggressive cancers (metastatic breast cancer in my sisters case, 20 months ago), as have a number of my friends, and I think getting rid of the breast altogether will give me greater peace of mind longer term. I know that the overall outcome is the same between both options, but the 15-22% chance of local reoccurrence with the lumpectomy feels like too much of a risk at this stage. And enduring 3-4 weeks of radiation, and potentially more surgery, also feels like too much at this point - I'm pretty over hospitals. 

Is this an over reaction though? A mastectomy is obviously quite a major surgery, and has risks and potential side effects of its own, also seems like the most straightforward option. Is this too aggressive an option?

Thanks in advance! 

iserbrown

Hello @JLumb

Welcome to the forum!
Reading your post, family history,  suggests you need to consider Mastectomy. 
I had a Mastectomy however it was the only option available due to size and location of tumour.

There's no right or wrong answer to the question you are considering.   It's what you are comfortable with.

I went with reconstruction, waking up from surgery with an tissue expander inserted.  I found the process daunting but nowhere near as difficult as I thought.

Link to BCNA website where you can read, explore before finally deciding 

https://www.bcna.org.au/resource-hub/articles/breast-reconstruction/

Best wishes
Take care 

arpie

I am So sorry to hear of the loss of your sister & father to cancer @JLumband now seeing you here too, joining our exclusive club.    Your surgeon will definitely take your family history into consideration when advising you of your options ... but as @iserbrown says - going for the mastectomy may be the right choice for you.  Ask them, what they would suggest to their wife/mother/sister in the same circumstances ....  I told my surgeon that I was happy with a mastectomy if he needed to do it - but I ended up having a lumpectomy with nipple saving surgery - and fat 'relocated' to fill the hole at the same time.

We have 2 private groups (only members can see the posts and pics) for both Reconstruction and Staying Flat .... feel free to join them & chat with the ladies who have been thru this decision making before. xx.     Just click on these links & click on 'join'.
https://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction

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

This thread has a heap of info on the forum in general including what to take to hospital with you, what to do leading up to it (keeping busy doing stuff you love, maybe cook up some meals & freeze them so you have some 'ready to go' when you return home after surgery.).  Always take someone with you to your appointments - a trusted friend or family member as physical and mental support - and also consider recording your appointments ... as you can never remember everything that was discussed!

https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest 

Try & keep busy, doing stuff you love doing in the mean time .... if family & friends are asking what they can do to help - depending on your family situation .... it could involve mowing the lawn, picking up the kids & taking them to & from school or sports .... hanging the washing out, doing the housework ..... they WANT to help you .... and it is a win/win situation xx.  You may be surprised to see who steps up to the plate and helps and who doesn't .... that is totally normal.  Re telling your family & friends about your diagnosis ... you could send an email to everyone every week or so, filling them in on what is happening, as it can be stressful telling everyone over & over again as your treatment continues xx

take care & all the best for your ongoing appointments xx

Paris_24

@JLumb after weighing up all the info from your treating team, my advice is go with your gut.  In my circumstances, I initially thought I would have a mastectomy when I first heard my lobular cancer diagnosis.  In the beginning mine started out to be a similar size to yours (mammogram, biopsy results) and I agreed to move back from mastectomy to have the less invasive approach of a lumpectomy.  After more accurate tests, the size changed considerably and I agreed to a mastectomy without reconstruction at the time.  I am glad I made my choice as the final pathology post surgery showed it was slightly larger still and I was able to keep moving forward with treatment.  I understand there are different recon options later if desired, sometimes we reach our capacity of info at a point to comprehend or we know definitively what we want to do.  My surgeon provided information at a very high level that might be required across the whole process surgery, chemo, radiation, hormone therapy etc at diagnosis - all of this is required in my case.  I am at the tail end of five months chemo, with radiation and other treatment still to come.  Totally, empathise why you might be over hospitals.  I am sorry for your losses and appreciate that your family history and experiences of friends will be in your considerations.  I wish you all the best in your decision making.  

Mez_BCNA

Hi @Jlumb you have received some wonderful support above and I thought I could add information from BCNA's information resource 'My Journey'. We hear this very same question frequently on the Helpline and  we want to ensure you are provided with the best information to help make an informed decision:

Surgery and DCIS
How DCIS treatment is decided
Podcast: DCIS