Phyllodes tumours have returned!

Hi Donna, I'm so sorry to hear that you are going through all of this again and so soon after your first round. Have the tumours been found in both breasts or just one? Did they get margins of at least 1cm with all of your first tumours? 

The choice to have a mastectomy is a very personal one and you are also so young to be having to make the choice of having a double mastectomy. When I first contemplated having a mastectomy (one side only) my surgeon referred me straight to a plastic surgeon before I made any decisions so that I knew all my options. I would definitely recommend seeing a plastic surgeon before you make any decisions.

You may also want to look into what options you have after mastectomy if you don't go down the road of reconstruction - they recommended going to a specialist bra shop with prosthesis first before my mastectomy too - I didn't do this because I had already made my decision.

I made my decision based on multiple factors but the main reason was that I didn't think that I could go through the trauma of having a reoccurrence. Everyone is different though and the only person that can make the best decision for you is you. You do however need to have as much information as you can possibly get before you make any decisions. Remember the specialist can suggest what they think is the best treatment option for you but you also need to be well informed before you agree to those decisions.

To answer you other question with regards to breast deformity it really depends on the original size of your breasts and how big the tumours that need to be removed are. I would assume that if there has been a lot of tissue removed that the breast would definitely be smaller and may appear a little deformed.  I know that some ladies have opted to have the tumours removed and have what is similar to breast reduction surgery to even up the breast with the tumour and make the other one the same size. I didn't know of this option when I had my surgery and I may have considered this option instead. It may not have been an option but it is worth asking about particularly if you have larger breasts.

I am happy with what I chose but I still have the fear that I will grow another tumour in my remaining breast and the anxiety increases when I have my specialist appointments due and follow-up ultrasounds.

I hope this has helped you. Please ask more questions. You may also want to ask a question about mastectomy etc on the main BCNA site as there are many ladies out there that have had double mastectomy. If you search mastectomy lots of information will also come up on previous posts and articles.

Best Wishes. Katie.