Forum Discussion

Tania_H's avatar
Tania_H
Member
13 years ago

My journey begins

Breast specialist confirmed today that my core biopsy results show that my diagnosed 'fibroadenoma' is actually a phyllodes tumour with suspect boundaries. I have previously had a 'fibroadenoma' removed in 2000 at the age of 25. I now suspect that this was infact a phyllodes, incorrectly diagnosed as a fibroadenoma. I am now 38 and have had my current lump for 3 years in the exact same spot as my last one. Ultra sounds look like a cluster of 3-4 lumps each between 3-6cm in diametre, however my specialist seems to think it is one giant lump that has folded onto itself, due to lack of space (I am only an A-B cup size). I had a thin needle aspiration 14 months ago saying benign fibroadenoma, so I wasnt concerned about it, despite my mother having had DCIS & LCIS & her mother bi-lateral breast cancer (died in mid 50's). So fast forward 14 months and my lump has grown tremendeously in a short period of time (this was exactly the case back in 2000). So, given its size I though time to take it out. Saw the surgeon (different one from previous) and she suspected phyllodes straight off the cusp and took a core biopsy in her office on the day I saw her, which was 2 days ago, we also booked in for a lumpectomy for mid April. She rang me today with the not so nice news and I am scheduled to see her again straight after Easter. Waiting to hear full results and what my options will be.

5 Replies

  • Hi Ladies,

    Firstly my appologies for not posting an update earlier. It has been 6 weeks since my surgery and I feel good. My surgeon found another 2 smaller lumps in my margins during the operation, which she removed. Just as well as one turned out to be another phllyodes, the other a fibroadenoma. The larger phllyodes mass that was removed measured a whopping 115mm x 58mm x 45mm but luckily everything was benign. WHEW!!! However I am forever cautious of something else turning up, or worse still something happening that goes undetected, so I am thinking of having the genetic test for the BRCA mutations. Has anyone in the phyllodes group had this test? How much does it cost? If I carry any of the mutations I know I would have a double masectomy and full historectomy, as I would not wish to worry about cancer for years to come.

    On a good note, my PhD research proposal was accepted and I am about to embark on a 3 year long, full time commitment to complete my PhD. Im excited and nervous all at the same time.

    I wish all of the wonderful ladies here on this network all the very best with their personal journeys. I will continue to share mine as it evolves :)

    Luv

    Tania

    xx

  • Hi Tania,Just read your story.  Hope things are well. Keep us posted with what's happening. It's good to read people's stories, cause there is not enough information about it, and we can learn alot from what everyone sharing.Take CareRosie
  • Hi Tania, wishing you all the best and I hope that your tumor is benign. I had an MRI when they found the second tumor in the margins and after it I felt horrendous. Tired and a migraine - I wasn't sure at the time if it was the stress of the day or the MRI however I have been told that the contrast used for MRI can make you feel pretty rotten. Thinking of you. Please keep us informed of how you are doing. Cheers Katie. X
  • Tania you are being well informed by the sound of things and no guessing game going on.  I did not have an MRI, just core biopsy and surgery and my Phyllodes tumour was the size of a guinea pig which I discovered myself.  Being big busted and the PT being well back to the chest wall it was pure chance one day in the shower that I found my surprise!  I remember thinking gosh with a lump this big I should be near death etc and I looked perfectly well.  I had had a lot of discomfort in the back right shoulder blade area beneath it really.  I actually used to say I wonder if you can get cancer of the shoulder blades!  Still have a lot of discomfort in the same area so wondering?!

    Like you I believe your Nana had the same as my Aunt and back then when they were misdiagnosed as we suspect everyone was thrown into the same category as the more common breast cancer.  It is also my belief that this is still happening depending on who you get to see. 

    Phyllodes Group has grown to 35 members while the Breast Cancer support group is only 28 which I attend.  Lynn kindly invited me to join them since they local so I hope that you find similar in your area.  I dont believe PT is as rare as they first thought, just mis diagnosed as fibroadonema and then bingo later on its recognised as something different and on further investigation they discover Phyllodes.

    All the best Tania and keep us posted and I sincerely hope that your surgery once decided is over and done with quickly and then the healing begins.  I dont know if my stinging that took place for 6 mths afterwards is just because I have other connective tissue diseases and my Phyllodes was in the connective tissue or that some others endure this too.  On my 6mth check up my surgeon seemed a bit surprised that I was still reporting this stinging and he suggested Evening Primrose Capsules.  After a week on these I had a noticeable difference but had to use the whole of a very large tub, no quantity on the empty tub but measures 4" x 4" approx before I was game to stop taking them and this did the trick.  Just thought if you suffer this post surgery that you might like to know what worked for someone else.

    Cheers to a speedy recovery and no nasty surprises!

    Colleen

     

     

     

     

  • Hi Tania, sending you big hugs for your op. I have found the support of this group very comforting when you are confused and anxious. I'm hoping all goes well and you are on the road to recovery in no time. Xx