Hey - After a lump grew too quickly for comfort I had a mamogram, ultrasound and biopsy done. I have been diagnosed with a PHYLLODES tumour and I am having an op next Wednesday to remove the lump. I would like to know how others recovered and what outcome anyone had . I have chosen to only have the necessary tissue removed rather than a masectomy. I'm also missing my fitness routine and I don't really know what I should and shouldn't be doing. I have taken long walks to clear my head ?

Would like to make contact with someone who has had a diagnosis with the rare malignant phyllodes tumour......Like me..... I'm slowly healing after having 2 ops removing the lump. I live in NSW. In a suburb of Sydney. Please talk to me :)

Trust me to be the one who gets a rare cancer .... that is even more rare when its malignant.....doesn't respond to any treatment other than surgery .... this is scarey stuff and I am on my own. Sure I have friends and very few family around ...but even though I love them to bits...they don't get it. They think that I can still be how I was before and I'm not. I have changed so much even in a short space of time. Some changes are for good...Some I have work on...Does that ring bells to anyone else out there? Everyone out there in blog land is so amazing! Your stories of hope,encouragement and inspirational are just wonderful. The challenges you've all had! The strength you all show is just mind blowing! Sometimes when its the middle of the night and I am unable to sleep I have sat and read posts that all of you have written and laughed, cried and sympathised with so many and at the same time felt so close to all of you. Thank you xo If I can just say as a woman in this world who has had a life changing diagnosis and all that goes with it...Just like all of you... That I am proud of you all.

Any cancer is scarey when you first are told you have it. BUT I found that you need to have contact with people who are in your same situation. The BCNA has a Phyllodes Tumor support Grouop....There are about 60 of us and we talk about how we feel most of the time. My lump was in the right at about 1 oclock if you can imagine that on a clock face. I found it in a routine check in the shower and it was the size of a golf ball. Oh yes...they grow quick as I hadn't noticed this one much before. As I had had some busy times in my life before my diagnosis I hadn't noticed pain in my breast before the surgery...but it may have been there and I ignored it. AND I had been slack with getting routine mammograms and even doing my own breast checks.... Silly me!!!! Sometimes I get that pain from the armpit to where my lump was before they took it away. My surgeon tells me its nerve pain. My surgeon ask me how I wanted the lump removed and I chose a lumpectomy. It was personally what I wanted as there was no evidence of any other lumps in the right or left breast. There is wonderful support available to you especially with your Breast Care Nurse, this web site, The Phyllodes Tumor Group on this web site and as your journey to health starts...you can link into support groups who meet in your area as well as a huge amount of information. If you feel comfortable on the BCNA web site go to the home page and order a package called "Your Journey". It's a free information package with lots of info and resources for you. I won't bombard you with too much info but I hope what I have given you helps. My diagnosis and surgery was only in May and again in June this year and I have learnt so much along the way. The greatest thing I have learnt is to take one day at a time. Decide what way you feel is right for you with your surgery and put trust in your Doctor/Surgeon. That's step one. Recover from that. Then take the next step. You are like all of us ...we don't always know what happens next but we are all here to support each other. Believe that you will be alright. You are welcome to talk to me on line whenever you want. I don't have all the answers but I will listen and help where I can. I am back at work so if there is any delay in my reply it's due to other commitments :) IP

Hi IP, thank you for your wonderful reply. I will apply for 'Your Journey' package and keep you posted. I have my first surgeons appointment this afternoon.

IP | BCNA Online Network

14 Replies

Colleen63
Member
12 years ago
Gosh I seem to be way behind on here but a good thing I tuned in today.

I am a bit surprised that a few posts on here mention that the patient is making the decision as to which operation they should have. I just did what Professor Ung recommended and did not have the quandary of what direction to take. He did say when I mentioned mastectomy that he was not in favour of doing a mastectomy unless PT returns or if it was straight out malignant but mine was borderline malignant. He also says that a mastectomy would be instantaneous should I have a second diagnosis of PT.

I do hope by now that you are well on the way to a good recovery and not worrying your heart out on which turn to take.

Best wishes,

Colleen
crooziecat1
Member
12 years ago
Hi IP, well the operation was successful and my surgeon is happy that she got it all. She said that the results are benign, but recommends 6 monthly scans and removal of any lumps if they appear.
crooziecat1
Member
12 years ago
Hi IP, well the operation was successful and my surgeon is happy that she got it all. She said that the results are benign, but recommends 6 monthly scans and removal of any lumps if they appear.
crooziecat1
Member
12 years ago
Hi IP, Yes received pack in mail last Friday and spent part the weekend going though it - very interesting. As for friends and eating, I have been doing that too, far too much. Have put on over 2kgs in the past week! Will have to get myself back to the gym ASAP :-) It's rainy, wet and thundering here today, a.good day to relax in bed for a few more hours. Take care.
IP
Member
12 years ago
Thank you for letting me know. I'm so pleased you are ok.

You will be sore but you did so well because while it's considered a "minor" op it isn't to us as individuals. Take the waiting time to look after yourself if that works for you. I found that keeping in contact with my close friends, resting and eating good food helped me get through the waiting time.

Talk to me whenever you want. I'm here :) :)

IP xo

PS Have you received your My journey package yet?
crooziecat1
Member
12 years ago
Hi IP, Op went well yesterday. A bit sore at the moment. Dr could only take 2mm margin as tumour so close to (my lump was quite visible). Now have to play the waiting game to find out pathology results. Have follow up appointment on 20th.
IP
Member
12 years ago
It's not good that you got that scare. Sounds like your doc is very thorough to have double checked everything because things can be missed. I'm pleased for you everything was clear of a secondary mass.

Surgery is usually quick for us as the Phyllodes tumours keep growing. It was a good thing for me to get my lump out quick because there wasn't any time to think and stew over everything. Did you decide to go with the lump out or the mastectomy?

Talk to me over the week end if you need to. If I don't hear from you .... All the best for your surgery and when you feel up to it let me know how you are. You will be in my thoughts

:) IP
crooziecat1
Member
12 years ago
A bit of a scare, she thought she saw a secondary mass, so she sent me for further mammograms and ultra sound. Luckly they came back clear of secondary mass.

Booked in for surgery Monday 11th - wish me luck x
IP
Member
12 years ago
Hey croozieczt1

Hope all went well with your surgeons appointment yesterday

Kind regards IP
crooziecat1
Member
12 years ago
Hi IP, thank you for your wonderful reply. I will apply for 'Your Journey' package and keep you posted. I have my first surgeons appointment this afternoon.