Wrong treatment plan

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Hi Guys

I was diagnosed in January, they orginally said the lump was 16mm caught it early and i had lumpectomy on 29th January. However at my post op they revealed the lump was actually 49mm.

Consultant has said had they have known it was so big i would have started with chemotherapy first. I now have to have second operation to remove more tissue and also more lymph nodes as i had one positive lymph node.  They didnt offer me a CT scan so i have asked for one but she said the MDT will make the decision and can't promise anything.

They also can't say whether the wrong pathway will have an impact on my prognosis.

Not sure how i am supposed to feel. Feel letdown and really angry at times. At the moment  It always feels like its bad news. 

They also can't say whether the wrong pathway will have an impact on my prognosis.

The next stage should be chemotherapy but there is a really long waiting time at my local hospital. Should i be asking for a referral to a private clinic or second opinion??

  • Hi OliB20

    Welcome to the forum and I am sorry to hear that you were diagnosed with triple negative breast cancer and that the lump turned out to be bigger than they originally thought.  What you are feeling is perfectly natural and there is no right or wrong way to feel about what's happened to you.  You are perfectly entitled to ask for a second opinion and a referral to a private clinic if that's what you want to do.  Maybe have a chat with your breast care nurse about your treatment going forward before you decide what to do.

    Wishing you the best of luck whatever you decide to do.

    Best wishes

    Daisy53

    Community Champion Badge

  • Hi OliB20,

    I just joined this group so I could respond to you. I had a very similar situation to you. After calcifications showed up on my mammogram I was taken to the OR for a lumpectomy with reassurance it was nothing. In the end I didn't have clear margins, dx'd with TNBC and MRI showed 48 mm of additional disease. That left me with no option for chemo before bilateral mastectomy surgery. Like you I was extremely nervous about waiting so long for chemo. I read its best to have chemo within 30 days of surgery and I was around 60 days. 

    That was 5 1/2 years ago and I am doing well!  I feel timing is very important and recommend starting chemo as soon as possible. Sometimes I get angry because I will never know how my cancer responded to chemo. I have put a lot of time into worrying and wondering what could have been. Now I try to focus on positive energy and the things I can control. I hope it helps you to know someone in a similar situation is doing well. Wishing you all the best!!!

    Reese54

  • No wonder you feel let down. I was moving  house when I was diagnosed and the first hospital said it was small and would do surgery first. The second hospital did an MRI scan and it was bigger so I had chemo first. I've had awful side effects, the peripheral-neuropathy has affected my mobility. I've since had surgery and didn't get a complete response so I'm having more radiotherapy and then more chemotherapy.

    You can't change the past, so do whatever you feel will give you the best satisfaction.

    I'm sorry that it wrongly diagnosed. 

    Best wishes 

    Jo