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Chantel's avatar
Chantel
Member
13 years ago

PT

Hello Ladies,

So happy to find this site today.

I was diagnosed with a borderline/low grade PT last week, I found a lump early 2011, had the ultrasound, mammogram and biopsy and was told to never think of it again as it was a fibroadenoma, after feeling another lump in June this year my Dr decided to check this one out, just to make sure as it looked like a cyst.

After having this mammogram the new lump was just a cyst but the 'fibroadenoma' had grown and changed shape. I went to see the surgeon and they took it out 2 Mondays ago, the surgeon certain it was still a fibroadenoma, until, the pathology came back. I am now scheduled for the 20th Sept to have the margins removed.

This week has certainly brought mixed emotions, 2 days of not being able to speak because I would keep crying, I think it was the shock, the surgeon was just as shocked! I am now nervous about, I have had a sore hip forever but now your mind plays games with you and you start wondering if its worse, the same with feeling tired, I am a nurse who works all sorts of hours, but in my mind the tiredeness is now because of this stupid tumour. 

The surgeon kept saying its benign and I have nothing to worry about, I did ask 3 times, but he printed the pathology out for me and borderline/low grade doesn't say benign to me. I live in a rural area of NSW, my first reaction was to try and find some sort of specialist who has studied or researched this type of tumour, it worries me that there isn't much info on PT's. 

It has be most enjoyable for me to read everyone elses experiences and to share the same story. :-)

mammogram
side-effects

8 Replies

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  • Colleen63's avatar
    Colleen63
    Member
    13 years ago
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    Dear Chantel

    A long journey indeed and lets hope now that it is all behind you and well done in pursuing what you wanted and a successful surgery too.  Many ups and downs seems to be the territory we  enter with this tumour.

    Best wishes for your endeavour to have a baby once you are considered safe to go ahead.  Hope the return to work isn't too soon and leave you feeling very tired so take it slowly and may all your dreams come true.

    Keep us informed on how you are travelling.

    Cheers

    Colleen

     

     

     

  • katie76's avatar
    katie76
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    13 years ago
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    Hi Chantel,

    I have just read your post and have goosebumps and tears after reading it - as your case sounds so similar and I completely understand what you went through and how devastated you must have been after finding out that there was more tumor when you went for clear margins (I have been there). I am so glad you chose mastectomy and feel satisfied with your choice - I too chose mastectomy as you may have read in my blogs and also had clear pathology but never once do I wonder if I did the right thing. Wishing you all the best in your recovery now and I hope every thing works out for you on the baby side of things. Please stay in touch.

    Lots of hugs and a lot of respect for another strong lady. Katie xx

  • katie76's avatar
    katie76
    Member
    13 years ago
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    Hi Chantel,

    I have just read your post and have goosebumps and tears after reading it - as your case sounds so similar and I completely understand what you went through and how devastated you must have been after finding out that there was more tumor when you went for clear margins (I have been there). I am so glad you chose mastectomy and feel satisfied with your choice - I too chose mastectomy as you may have read in my blogs and also had clear pathology but never once do I wonder if I did the right thing. Wishing you all the best in your recovery now and I hope every thing works out for you on the baby side of things. Please stay in touch.

    Lots of hugs and a lot of respect for another strong lady. Katie xx

  • katie76's avatar
    katie76
    Member
    13 years ago
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    HI Chantel, 

    Welcome to the group - I am glad that you have found us on here. So sorry I have not replied earlier but I was in Vanuatu when you posted your message and I have only just remembered that I read your post and hadn't replied.

    Wishing you all the best for your surgery. Please feel free to post questions here in the group or there is also my blog from when I was first diagnosed that has lots of stories too if you haven't found it yet.

    Good Luck and thinking of you. Katie. x

  • Colleen63's avatar
    Colleen63
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    13 years ago
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    Hello Chantel and you now know that it does matter to have lumps monitored.

    On reading your response I will tell you that for years I too have had fibrocystic disease of the breasts and I think it does perhaps confuse or make it difficult to diagnose any other matter that shouldn't be there.  Even so they are good at diagnosing fibroadenoma instead of being cautious with this it seems they endeavour to convince the patient thats all it is.  In your case it is more and the return of suspicious lumps does require a positive diagnosis and not a 'generalisation' because that seems to be the most common.  We PT patients need to know that we have PT because if it returns it requires instantaneous surgery.  Professor Ung has told me that if mine returns it is an instantaneous mastectomy.

    All thoughts of healing to you and do let us know how you are post surgery, emotionally and physically and offloading your thoughts to those like us on here might help  you through any rough passage.  Insist on a diagnosis of all lumps at all times.  Mine came up quickly between mamo and ultrasounds and my medical team checked back to see if there was any trace of this PT in former tests and there was not so thats how quickly it can become huge as mine was.  The trouble with fibrocystic disease of the breasts is that it can prevent them seeing what is behind such growths formed by the disease.

    All good wishes to you and lets hope you have a good outcome.

     

  • Chantel's avatar
    Chantel
    Member
    13 years ago
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    It's so great to hear all the similar stories, I guess given that my biopsy came back as a fibroadenoma they didn't press the issue, in fact I was told that I would have it for the rest of my life and not to worry about it. My gut instinct 14 months ago was that I didn't like it but I put my mind at ease because everyone else said to and I didn't want to push the point. My view has changed signigicantly and I will be having all lumps monitored closely. They tell me that the 2 new lumps that have developed over the last 12 months are simple cysts and that phyllodes aren't a cystic problem, but the doubt is already there I'm afraid. 

    Just waiting now to have the op on the 20th and working hard to keep my mind busy!! Thanks for the support it definetly makes me feel better when you know people have exactly the same thing!!

  • Mish66's avatar
    Mish66
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    13 years ago
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    All the best Chantal for your surgery on the 20th. Sending you warm thoughts and well wishes x
  • kirstie17's avatar
    kirstie17
    Member
    13 years ago
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    I had surgery to remove two tumors last monday after having a boderline/low grade PT July 2011. It was 5cm. My surgeon also called it benign. The results for these last two came back as fibroadnemoa's. It is a very hard disease to diagnose and it can seem to do anything. I am hoping that you have been getting 6 monthly checks, as my second tumor was back in 6 months. I know its hard, but when your stressed, the mind can play wonderful tricks. I guess the biggest thing is finding a surgeon that you have confidence in, and if you are not happy with any part of your health, keep pushing to get it checked until you are. By the way, Welcome to the group. Big hugs. Sadly, lot's of ladies in this group with a variation of experiences, take care and best wishes for your surgery on the 20th Sept.

    Kirstie