Phyllodes Tumour

Donna67

I have just had a lumpectomy for what was originally diagnosed as a Fibroadenoma.  It was only when I went for my post surgery checkup with my surgeon that she said the pathology results came back as a Benign Phyllodes Tumour.  She was upbeat and didn't have a lot to say about the tumour, just that it was benign and shouldn't grow back.  I asked whether I should have another Mammogram within 12 months and she said no, just the usual two yearly one.  So, after researching Phyllodes, I am confused about what to do next.  I know that the surgeon didn't take 1 cm margins around the lump because she thought she was dealing with a Fibroadenoma, the lump was just shelled out.  Does anyone have any advice to help me work out what to do?

nonkyboy

Hi @Donna67, are you able to ask her for a copy of the biopsy report? You may find that she did get enough of a clearance margin around the tumour. That would be the ideal situation. If you are still worried and now that you are armed with more knowledge could you go back to see her and ask her some further questions to clarify things for you and hopefully help you to feel settled with her diagnosis? I know how fast these appointments can go and you never seem to remember the questions to ask while you're in there. Given that you were not expecting the news you heard, you would have been thrown altogether. That would be my suggestion anyway. All the best. Maybe other ladies have other suggestions xx Lesley 

Donna67

Hi Lesley, 
Thanks for your thoughts.  The surgeon did give me a copy of the biopsy report which did indicate clear margins.  I have read other posts and forums on the internet which say that a minimum of 1 cm of healthy tissue should be taken to prevent recurrence.  My surgeon 'shelled out' the tumour, so there was no breast tissue as such removed with the tumour to my knowledge. Also, she has said I don't need another mammogram for two years, but other forums suggest a follow up one after about 6 months. Donna.

Brenda5

Perhaps see how you go and if you are concerned after six months to a year you could request an ultrasound? They are quick and easy and not as expensive and there is no radiation either.

Unicornkisses

You could also discuss this and your confusion with your GP. Sometimes it is easier to have a discussion with them, rather than the surgeon, it might help you to feel more comfortable with the findings.
My sister had a Phyllodes tumour. She was given the option of having it removed or just leaving it there and monitoring it. She chose to remove it, but apparently the surgeon wasn't too concerned about it.
She has yearly mammograms because of it.
You can chose to have more frequent mammograms and ultrasounds if you want, just get your GP to do a referral. You just have to pay for them, that's all, and have them done at PRP or similar private diagnostic rooms.
Maybe you might like to have one done in a year and if it is okay you will feel better about going back to two yearly, or be guided by your GP.

Donna67

Thanks everyone.
I have an appointment with my GP in a couple of weeks and will discuss with him.
I'll let you know what his recommendations are.
Cheers,
Donna. 

Dina

Hi, I am newly diagnosed with Phyllodes tumor. Can anyone refer me to the specific Phyllodes tumor group? Thank you.

arpie

Hi @Dina, Sorry to see you here ..... I don't think we have a specific Phyllodes Group here (yet) ....   maybe you can ring the Helpline tomorrow & have a chat with them (in the blue banner at the top of the page?)   

We do have members with Phyllodes but it is one of the more unusual BCs - it would be great if you could have your own group, to discuss your issues in a totally private setting xx @Mez_BCNA may be able to help there - and also give you your own 'thread' for more dedicated replies.

This info may help you ... with more pages to check out, half way down xx
https://www.breastcancer.org/symptoms/types/phyllodes/

When you have a spare 10 mins, Check out this link on the 'rest of the blog' ... there is also a link down the bottom to some 'tick sheets' that may help formulate questions for your team ...
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

Take care & all the best with your ongoing appts - Definitely see if you can have a buddy with you at your appts and consider recording it on your phone for later reference xx

iserbrown

Previous discussion on Phyllodes Tumor

https://onlinenetwork.bcna.org.au/search?Search=Phyllodes

Hope that helps 
Take care

Dina

thank you @arpie and @isebrown. Really appreciate your responses.

Mez_BCNA

Hi @Dina, thankyou for reaching out. I can see you have had some great supportive feedback already and I have also created your own discussion thread:

https://onlinenetwork.bcna.org.au/discussion/24256/newly-diagnosed-phyllodes-tumour/p1?new=1

I couldn't see any groups on our service finder, only a Facebook support group out there. We are always interested to hear if there are other members who have an idea for private groups. Perhaps if you hear of other members who would like a private group you can send us a private message and the member support team will review.

Dina

thanks @Mez_BCNA