Just been diagnosed with phyllodes tumour with a sarcoma in the middle malignant of course. Is there anyone else out there as I am told both are rare . Just my luck tossing up between lumpectomy and mastectomy . Probably best to go for the big chop. How totally scary. All I can say is that my love and sympathy go out to you all especially the young ones. I suppose it is up onj your feet and fighting time. Best of luck everyone.

Hello Jeanie Welcome to the group and sorry to read that you have a malignant PT and with your tumour being malignant your surgeon should be recommending which procedure but it it were me I would definitely go for the mastectomy. If my PT returns my surgeon says it will be an instantaneous mastectomy. If they know yours is malignant without opening you up then I think you would not want to risk having it removed and then to find a week later that you need a mastectomy. I wish you all the best for your upcoming surgery and keep us posted how you are going. It is a shock to the system facing major surgery at short notice but its best behind you than in front of you. I hope you have caring family and friends to help you through this trauma. With every good wish Colleen

Hey, I'm sorry to hear you have been diagnosed with a pt tumour, especially when it's malignant. Mine has been tested as benign and I am freaking out so I couldn't imagine what you would be feeling! Phyllodes is a type of sarcoma cancer because it is in the tissue not the ducts. There is little information available on pt tumours and I have found that a lot of the information on the net is conflicting and most of it left me confused and anxious. I would advise you to make a list of questions for your surgeon before your appointment. I have found the most useful information from reading blogs on here and asking questions. I wish you the very best with your surgery and recovery and I hope tp hear how you progress. Warm wishes Xx Kristy

At first I thought my tumour was a fibroadenoma - it wasn't until I actually had surgery last month, and got the biopsy results back, that I discovered I had a low-grade phyllodes tumour! At first I thought low-grade meant the same as benign, but it is a low-grade malignant tumour. I am shocked! Sorry to hear that you are suffering. Your decision to have a lumpectomy or a mastectomy should be made in consultation with your doctor and surgeon. Wish you well.

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38 Replies

Lozza
Member
12 years ago
You just have to don't you. Had a few tears. Im lucky have very supportive husband. Thanks for the support Katie.
Lozza
Member
12 years ago
You just have to don't you. Had a few tears. Im lucky have very supportive husband. Thanks for the support Katie.
katie76
Member
12 years ago
I completely understand - I had 6 surgeries in 11 months. I never expected the process to be so intensive despite trying to be prepared and well informed. Hang in there, you can do it. Xx
Lozza
Member
12 years ago
Katie I had an expander put in that he thought could stay in but it was more difficult than thought so he says he now thinks will have to change to permanent implant and not leave expander in. It does feel very hard and tight. So unfortunately another op. At least i will be more prepared next time. Even though I thought I was!! Lozza
Lozza
Member
12 years ago
Katie I had an expander put in that he thought could stay in but it was more difficult than thought so he says he now thinks will have to change to permanent implant and not leave expander in. It does feel very hard and tight. So unfortunately another op. At least i will be more prepared next time. Even though I thought I was!! Lozza
katie76
Member
12 years ago
Hi Lozza, did you get an implant placed directly or have you currently got a tissue expander?? I had a tissue expander straight after my mastectomy and it was very tight, hard and uncomfortable - I had to have it removed 9 weeks later as I rejected it and it was causing tissue damage. I then had a lat dorsi with implant reconstruction 3 months later and it was also quite painful and it took quite a long time to get used to the implant as it also felt tight and felt like the muscle was contracting over it frequently. It is almost 3 years since the implant and lat dorsi reconstruction and it rarely bothers me now however I do sometimes find it uncomfortable. Please ask more questions as I am happy to help. Cheers Katie.
Lozza
Member
12 years ago
Hi Katie, Thanks Katie. Good to hear its normal to have this much pain. It feels very tight especially up the top near clavicle end. There's also a port digging in at bottom of my ribs. I do expect some pain but panadol doesnt cut it. Thanks it helps alot to hear i was normal. Well about this anyway. Lozza.
Lozza
Member
12 years ago
I had my mastectomy and implant done on 7/05/14.I know its early days but the surgeon and the breast care nurse seem to think that I should be able to manage my pain post op with panadol. Is this what any of you ladies have done in the past.

I know it is early days but I had one night in hospital then home with panadol. Needless to say I have been to my GP and she gave me more drugs. I just wondered if this was the standard care.

I am not a whimp my pain threshold is very good. I have had plenty of surgery in the past and recover very quickly, I also used to suffer with abdominal adhesion pains for more than a year without any drugs. This implant has been causing an incredrible amount of pain. Why anyone would stick them in to get bigger I don't know. I just wondered if I am being a whimp or have you all suffered as much with the idea that panadol was enough.

Lozza.
jeanie34
Member
12 years ago
Here's to you Lozza. Hope all is going well, And heres to a lovely long happy life and no more worry for you.
jeanie34
Member
12 years ago
A hundred hugs to you.