Forum Discussion

CaBrCh010310's avatar
CaBrCh010310
Member
12 years ago

My Experience

HI all my name is Kirsti, I am 44 years of age, married with two sons aged 12 and 9 and a daugter aged 2.  I discovered on Tuesday that I have a phyllodes tumor.

 

I have had a lump in  my right breast since late January, I had a mammogram, USS and was told intially by the sonographer that it was a cancer then told by the radiographer that it was fibrous tissue. So I sought  a second opinion from a breast surgeon. He was confident it was fibrous tissue but wanted to see me in 6 weeks.

I have tried to ignore it in that time but it was still there. So on the Friday I paid a visit to him, told him it had changed shape, he thought it was more prominent, he wanted to core biopsy it-       (Frankly I wasnt leaving without a biopsy!)

We negoiated that he would call me with the results late Tuesday after his rooms.( I live two and half hous away) We where both confident it wasn't anything "just fibrous tissue". He rang me Tuesday at lunch time with my results.

 

Intailly I was quiet shocked then thought " its ok its not breast cancer, cut it out -all good"

 

I contacted my colleagues at work they did a search for me while I returned to the office.

 

This might all sound straight forward but this hasn't been and easy process, you see I am a health professional and now I find myself on the otherside! ( But have had the most awesome support from my friends and colleagues). I finally got around to reading the information on Wednesday morning and had a meltdown- to say this was not a good day would be an understatement! 

 

Most disconcerting for me has been the lack of scientific information, HOWEVER I have read all your blogs and it has given me great hope.

 

I am putting positive vibes out to the universe that I will not be in the 1% of malignacies and that I wont have to return for further sugery.

All of your positivity is just fantastic, I like that I can now realte to others who understand this are diagnosis.

 

It is my hope that out of my experience I can help others, I will be speaking to my surgeon to look into research for this type of tumor, find out why they occur, further treatment options and most of prevention. I want to urge others not to give up on "fibrous tissue" and have it investigated more.

Thanks for listening to me!

 

 

mammogram
surgery
  • CaBrCh010310's avatar
    CaBrCh010310
    Member
    12 years ago

    Thank you fro sharing katie, I had my surgery, it wasnt malignant but I still have a niggle in the back of my mind...I did speak to my surgeon at the time and I have the utmost faith in him ( hes done afew phyllodes now). I am off for a MRI in two weeks so will go from there......

  • CaBrCh010310's avatar
    CaBrCh010310
    Member
    12 years ago

    Thank you fro sharing katie, I had my surgery, it wasnt malignant but I still have a niggle in the back of my mind...I did speak to my surgeon at the time and I have the utmost faith in him ( hes done afew phyllodes now). I am off for a MRI in two weeks so will go from there......

  • Julia_M's avatar
    Julia_M
    Member
    12 years ago

    Thanks Katie, it was through you that mum and I joined the 2 Facebook P/T Support groups and learned of the options available to others and what was an overreaction or not......The group was better informed than my surgeon and her colleagues.  I think that was the scariest thing, that there is NO expert....and what one doctor has experience in their patients,, may be completely differnet to mine.   In her own way, my surgeon acknowledged that she had underestimated the potential danger of reoccurance and even did Sentinal Node Biopsy because she realised that mine was against all the statistics......she is a great and passionate surgeon and I am comfortable with her now as she is also preparing the reconstruction.  Thanks again, Katie, God Bless!!!

     

  • katie76's avatar
    katie76
    Member
    12 years ago
    Hi Julia, thanks for posting your story and I am glad that you are happy with the decisions you made for treatment. It is a tough decision to have a mastectomy for PT's as there is so little information on surgical options and treatment. Your story is another example that we have to be well informed, advocate for our treatment and make the decision for treatment that is right for us. I also want to highlight to all our members that there are 2 facebook closed/private groups for phyllodes that have lots of information and many members from around the world and many different treatment options. Please also continue to post and update us of your progress your story is valuable to all of us. Thanks again. Katie.
  • Julia_M's avatar
    Julia_M
    Member
    12 years ago

    Hi, Sorry I haven't posted anything as I had lost my a/c name and password, but had been on to the facebook support groups since.  Cut a long story short, my malignant PT was removed and then again a wider incision made within weeks, even though my mum & I asked about mastectomy.  Mum did quite a lot of research on clinical trials by Dr Barth and we raised the issue of radiation on the site with our surgeon to minimise the chance of reoccurrance...  she was flippant and said it didn't work  and said that the tumour is not the type to mestasise, but would send us to anywhere we wanted for testing as well as the Professor Radiation who will confirm that radiation is not an option..... quote ït's your money"!  We did go to see the Professor who had the latest research and confirmed that radiation / mastectomy would reduce the chance of reoccurance to 5%.  We chose mastectomy and so booked in for surgery withing the 3 weeks with our surgeon's agreement.  Mum did more research into why people were having double mastectomies even on P/T that were benign in one.  It made sense .......psycologically, not to have the fear of the other breast......cosmetically to have both identical at the same time and to not go through the trauma later of reducing the other breast to match (I was 10DD).  When we told my surgeon, she went balistic..... asking why would I want to remove a healthy breast & made mum feel like she was wanting to disfigure me!! I convinced her that that was what I wanted and that it was önly a breast"not a leg or arm.  So on 15th March I had a double mastectomy with tissue expanders inserted and have been getting top ups slowly ever since, until my skin is stretched enough to have implants.  From the moment I had the operation I knew it was the right decision and actually feel happy that we did not take the slowly, slowly approach.  I feel now that the trauma, fear and dark tunnel I went through had not happened and apart from getting the implants put it, I have a gut feeling that that is the end of P/T for me! 

    What was traumatic for my mum was that she found all these options through the facebook support groups and at no time did a breast care nurse no anyone from the McGrath Foundation ever contact us.  Mum even took care of the drains at home after the op.

    Well it is scary how little the medical profession know and I guess that they don't have the time to do the research that family have. My surgeon said she was criticised by her peers for doing a bilateral (probably men) .I am so thankful that I trusted my mum's gut feeling through the terrifying process!  A few weeks later Angelina Jolie announced her decision and I felt so happy.  Best wishes to all you out there and your decisions with what is right for you!!!!!