I've just been diagnosed with a phyllodes tumour in my right breast and feel like my world has come crashing down. I had surgery to have it removed (what was thought to be a fibroadenoma) but came back with a 60mm x 65mm x 50mm tumour. I now need to go in next week for further surgery to remove a bigger margin. My doctor believes that this should be sufficient treatment, with close monitoring for life, although am wondering about other people experiences and reccomendations. Thanks Kara

Hi Kara74, I was recently diagnosed and have been successfully treated for a malignant Phyllodes tumour. The tumour grew very quickly. My consultant informed me that surgery was the most effective approach, as Phyllodes are not typically known to respond to other treatments. It was approx. 50mm when it was removed. My initial lumpectomy did not achieve clear margins so I opted for a full mastectomy. During this time and since, I have had full body scans to check if it had spread. My very good news is that the latter surgery eradicated the tumour completely and the scans were negative. My consultant has declared me completely free of cancer and therefore I will now only have annual mamograms on the other side. It has been a rocky ride and I'm still coming to terms with my lucky escape. The key thing for you is to stay positive and open-minded, as there's an extremely good chance you'll be okay. Malignant Phylodes are very rare and the percentage that mastatise are equally low. My best wishes.

Hi Kara, I think we are both on the Phyllodes Support Group on Facebook. I am a malignant Phyllodes survivor from 2008 (lumpectomy) with a recurring Phyllodes in 2011 that was treated by mastectomy. Surgery is indeed the main treatment in these tumors as they have not been shown to respond to chemo though there is some research that has recently been released that shows hope that there may be some treatment available in the future.

Phyllodes tumour news | BCNA Online Network

16 Replies

debs1973
Member
10 years ago
Hi Kara

I have stumbled across your post, whilst researching Phyllodes Tumours. I had a suspected PT removed on Friday and am now in the agonising 8 day wait, for the pathology. I am wondering, by your username, if you are about the same age as me? I am 41 years old. My 'mass' core biopsy came back as a FA, but because of the size (4.4 x 3.6 x 2.2 plus a smaller one around 1.8cm) I was referred to a Specialist Breast Surgeon, who strongly suspects PT and I had surgery just 7 days after seeing her. The wait is horrible! How are you going now? I noticed that your original post was in January ... so I am really interested to hear how you coped with the diagnosis and then the subsequent surgery to obtain clear margins? Did you then see an Oncologist? Did you need to have any PET scans? So many questions! I am very new to this type of online support group ... so I am sorry if I am not answering in the correct fashion! I just clicked on the comment button ... so I hope you receive this message! If any one else reads this, who is in a similar position, please feel free to respond! I feel extremely alone and unsupported as my family thinks because "I won't have any chemo or radiotherapy", that somehow means this diagnosis (if it is true) is nothing to worry about! I don't want to scare them from what I have read ... but I feel there is a difference between "not needing chemo" and "not having chemo because the cancer won't respond"!

Thank you to all who may be reading this!

Debbie
shiney50
Member
11 years ago
Hello Kara

I had a malignant PT July last year. So far have had 25 radiation treatments. No recurrence of cancer and feeling a little better each day

Do not do too much with your right arm I learnt the hard way about this and suffer haematoma's in the breast due to lifting and using the arm too much as I was told I could do whatever I wanted even go to the gym. Caution at first

Keep well and I hope you recover quickly.

Shiney50
Michelle_2015
Member
11 years ago
Hi All! I am so glad I found this group! I first read Katie's posts and then found this group. After being diagnosed with fibroadenoma via core needle biopsy and I had lumpectomy on Jan 16. Unfortunately I had complications - internal bleeding and my breast was just about the size of a volleyball! The medical staff reacted fast and I was taken in for emergency surgery to drain the hemmorage. This went well and I was kept in hospital for 4 days. Then this past Thursday after my breast was quite swollen I started bleeding alot and I was told a hematoma that burst after more bleeding. Then this week also I got the phyllodes diagnosis. It has been the most exhausting two weeks of my life. I was mentally prepared for a small day surgery and then I find myself here today trying to understand and learn about this rare tumor....wondering what impact the internal bleeding and the fact that the tumor was removed incorrectly would have? And who to even ask? Prayers has comforted me which helps alot, but I feel like I am on a rollercoaster. If my breast heals well I will have re excision for clear margins in two weeks. Thinking and praying for all of you!! Michelle
KTCC
Member
11 years ago
Hi Kara,

Sorry to hear your news. I too am a fellow PT girl. I had a double mastectomy in late 2013, which turned out to be the right decision for me as very early and unrelated cancerous cells found in the unaffected breast. I have had lat dorsi reconstruction - delayed, and had dramas with that, but overall I am very happy. Katie, who created this group helped a great deal. I would say ask questions, think about the answers and go with your gut feelings having taken on all the advice. Due to having zero reserves following multiple surgery I am still exhausted, but I am also here to tell you my story. Very best of luck to you. Kate. xx
shiney50
Member
11 years ago
Hi Kara

I was diagnosed Malignant Phyllodes Tumour in July. Lumpectomy then later further surgery for haematomas due to lack of information or wrong information being given.

I was told I could do exercise and anything I wanted to. However gentle exercise is not recommended for weeks. The area is very prone to injury. Keep this in mind when doing things for the first few months.

I am now doing well. I too am on the facebook page.

Cheers

Shiney50
shiney50
Member
11 years ago
Hi Kara

I was diagnosed Malignant Phyllodes Tumour in July. Lumpectomy then later further surgery for haematomas due to lack of information or wrong information being given.

I was told I could do exercise and anything I wanted to. However gentle exercise is not recommended for weeks. The area is very prone to injury. Keep this in mind when doing things for the first few months.

I am now doing well. I too am on the facebook page.

Cheers

Shiney50
shiney50
Member
11 years ago
Hi Kara

I was diagnosed Malignant Phyllodes Tumour in July. Lumpectomy then later further surgery for haematomas due to lack of information or wrong information being given.

I was told I could do exercise and anything I wanted to. However gentle exercise is not recommended for weeks. The area is very prone to injury. Keep this in mind when doing things for the first few months.

I am now doing well. I too am on the facebook page.

Cheers

Shiney50
jeanie34
Member
11 years ago
Dear Kara 74 hey all those postings must be frightening you big time. Yes do do all the research you can but my dear I am sure you are going to be fine . I had a mastectomy 9 months ago no regrets no reconstruction . Lop sided but feeling safe . I am sure you will be Ok just hang on in there.
Roo1
Member
11 years ago
Hi Kara, I was given the choice of either further partial surgery to take extra margins or a full mastectomy. My consultant though recommended the latter, as while radical, it offers greater ability to catch all possible malignant cells. It was the right decision for me. The pathology from the mastectomy revealed a secondary unrelated breast pre-cancer that did not show up in the earlier analysis. The surgery therefore got rid of both. I have no regrets. I had an immediate reconstruction and am really happy with the results so far.
Kara74
Member
11 years ago
Thank you all for your comments. Looks like i still have a lot of research to do and second opinion with breast surgeon specialist has been sort.