Phyllodes tumours have returned!

Did you have or would you consider radiotherapy ? It  may reduce chance of recurrences. 

I do hope all went well for you with all my heart. Personally the feeling of being safe after having my mastectomy was worth the loss of my left breast but then I am old it is so much harder for you young women . Good luck my dear.

Firstly, sorry that I have not seen this post until now and I hope that whatever decision you made that you are now recovering well.  You are very young to have to cope with such a trauma but I am sure by now that you have been in good post surgical care hopefully with a breast nurse to help you along the path you are on.

Please let us know how you fared and all good wishes to you.

Colleen

Hi Donna. I had a double mastectomy for the same at the end of November. I already had implants as I'd lost a lot of my right breast in my mid twenties to fibroadenomas. Exactly one week after the mastectomy I had to have the implants removed as I had haematomas develop. The mastectomy was nipple sparing, however I've lost my left due to the complications. I have pain, which can be sharp, but is quick to resolve with no analgesia. I ticked all the boxes for typical phyllodes tumour, even down to age, location and side so thought, and still think double mastectomy was my best option. I've been advised to wait at least six months before reconstruction, and while my chest looks less than pretty, there are benefits - especially in the heat. I've learnt to buy tops that disguise the loss, as I'm still too tender to wear falsies at present. I think Katie offers very sound advice, talk it through and think it through, but don't overthink it. I have rough days, yes, I have great days yes. You are so young, and I feel so much for you - my second surgery was at age 26 - and I was never told exactly what I had - just that it looked 'dodgy' and the cells were 'funny' but didn't need any follow up. Now I wonder if it was a phyllodes, but impossible to find out as mid nineties in the UK, and I had a young baby at the time, so they were quite uncommunicative. Take the time to ask the questions, and remember there are no dumb questions. Love and luck to you. Whatever your decision. Xxx

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.