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Ultrasound, 2 biopsies, lumpectomy, potential fibramatosis

HM9834
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Hello everyone,

 

Firstly, I'm Hannah and I'm 24 years old. I first started reading this forum back in June and would like to share my journey so far incase it helps anybody else in a similar situation. I'd also like to mention that whilst this is my first post, I am hugely grateful that these types of forums are available and the level of support offered is incredibly heart warming to see.

My journey began at the end of June this year, when I noticed a very subtle dimpling to the skin of my breast. Having been referred to a clinic three years prior for a suspected lump, I have always been very aware of changes to my breasts and decided to get this checked as soon as I spotted it. Typically, I anticipated going to the GP to be told it was expected given I had lost 1.5 stone unfortunately this was not the case and I was again referred to a specialist clinic.

Upon my first referal, i was given a physical examination and the consultant informed me he wasn't concerned and that the lump was probably a result of my weightloss, but sent me for an ultrasound to be safe. During the ultrasound, even I spotted the dreaded "shadow" and my heart sank. My lump was categorised as a B3 (Uncertain malignant potential). Within 20 minutes I was having a core needle biopsy. Thankfully, the lump detected was only measuring 8x5mm. The purpose of the biopsy was to ideally downgrade the lump to a B2 (benign).

The results for this took longer than expected. My consultant informed me that whilst no cancer was found, they wanted to do a second biopsy for confirmation. A few weeks later, I arrived at the clinic for a vacuum assisted biopsy, again with the aim to downgrade my B3 lesion to a B2. This biopsy had also intended to remove the lesion, however due to the fact the lump was situated close to the surface of my skin, only 80-90% could be removed.

Once more, the results came back inconclusive and my consultant decided it was best to perform a lumpectomy to remove the remainder of the cells. Almost three weeks ago, I went for day surgery under general anaesthetic. I had no need to take the pain killers I was given, and found the surgery recovery to be far more comfortable than the biopsy recovery. My discharge sheet from the hospital listed "B3 spindle cell desmoid type fibromatosis" as the diagnosis but is to be confirmed by my pathology results which are due next friday. I received a letter in the post confirming my appointment, which has concerned me slightly given I was initially told it would be a phone appointment, however I am remaining hopeful. 

I mainly came online to share my story incase it was relevant to anyone else. Whilst ive never participated in any chats in this forum, I know how much comfort they brought me when I was at my lowest. Im praying my journey is almost over, but im sending a whole lot of love to everyone who is facing similar challenges. If anyone has any questions regarding my experience with the core needle biopy, vacuum biopsy or lumpectomy, please do get in touch!

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    Hi HM9834. Welcome to the forum.

    I've read variations of this story numerous times.  It goes something like this: The patient has a test and the told by some well-meaning nurse or doctor that the results will come by phone call.  Later on, the patient receives a letter telling them to come for an appointment, and since this isn't what the first doctor/nurse said, the patient freaks out.  The patient goes for the appointment, and usually it's all clear.

    I have several theories about this.  Maybe doctors/nurses really have no idea how results are returned to patients.  Perhaps that's what they were told some years ago, but the policy has changed and phone calls are no longer made.  Or maybe the consultant's policy is to see all patients to tell them their results; even of the result isn't cancer, then the patient may still have a condition that needs treatment, or may simply have questions that the consultant can answer.

    Whatever the reason, this happens many times.

    It might help to look at the postmark on the letter.  Sometimes a letter with an appointment is sent so early that there's no way the result could be known when it was sent - if that's the case, then you're probably worrying unnecessarily.

     

  • Offline in reply to telemando

    Hi telemando,

     

    Thanks for your response! You are right. At the moment i'm not too worried as there some confusion when I was discharged regarding whether my follow-up would be by phone or in person with the nurse on the ward being told two different things also. My consultant also stated he was trying to move away from phone follow-ups so thats reassuring. Its just rather frustrating being told different things! 

  • Offline in reply to HM9834

    Ah, that explains it. 

    Personally, I think that nurses and doctors should be taught to avoid telling patients how and when they'll get their results.  I know they're only trying to be helpful, but a worried patient can pick up on an off-the-cuff comment and read more significance into it that it deserves.

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