Forum Discussion
Phyllodes tumour news
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
16 Replies
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
- 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
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
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
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
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
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.
- 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.
- 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.
- 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.
