New to the club nobody wants to be in

  • 8 replies
  • 496 subscribers
  • 280 views

Hi, found lump 18 months ago was due mammogram so didn’t take doctors advise to get it checked through cancer referral as mammogram was the next month. Had mammogram came back clear, assumed it was a blocked mammory duct. In November last year decided it felt a bit bigger plus nipple was leaking green discharge, went to cancer referral again thinking blocked duct. Mammogram again came back clear, had the ultrasound and two tumours found, told there and then it was cancer. Shocked was the first emotion. Had biopsy, and still had in the back of my mind it was wrong. Got my official diagnosis on Friday 13th!!! Left side dc. Had left side mastectomy in January and went brilliantly apart from seroma which has gone down a lot but still a bit left to go. 
been waiting for my oncotype to come back, was told 2 weeks, 7 weeks later I’m about to be told on Monday. Feeling very impatient waiting for the plan as every plan for the rest of the year starts with “if I Don’t need chemo”, but the wait is nearly over. Not bothered what the plan is but want to get it started for I can put all of this behind me and enjoy living. 

  • Hi  and welcome. It absolutely is a club that no one wants to join, but I’ve found this site a great place for support and shared experiences. You are I think at one of the worst stages - in limbo, waiting for results. Once you have the all important treatment plan, you can get on with whatever it is. The unknown nature of this stage is the pits. Sending love and a big virtual hug your way, HFxx 

    HappyFeet1 xx
    Don’t be afraid to cry. It will free your mind of sorrowful thoughts. – Hopi
  • Thank you for replying, and yes to be fair I have used this forum from the minute I was diagnosed as lived experiences outweigh google all day long. You are right this stage is the pit especially when your given timescales that seem to stretch. Luckily the sun is out so I’m busy in the garden so that seems to keep my mind off of it for most of the time, but hey ho bring on Monday, hoping for the best and prepared for the worst 

  • Oh joy!!! Was supposed to be seeing oncologist on Monday to get my plan and just received a phone call that it’s been postponed for another 2 weeks. Fuming! I just burst into tears. Why it has to be so hard to get results I don’t know. I’m a mum of 4 and I just want to know how my immediate future looks and no one can give me an answer, so frustrating 

  • Oh that's just rubbish. I am so sorry for you. Waiting is the worst and I am not surprised you're upset, angry and frustrated. I hope you can find the strength to get through the next two weeks ok. Best wishes 

    Community Champion badge

  • That's rubbish! Sorry you've had such a long wait. Have they said why? I'm waiting on Oncotype test too & this fills me with dread that my 3wk apt will be postponed.

    Hope this fortnight flies by!

    • 49, ER+, P+, HER2-, Stage1, Grade3, invasive nst carcinoma & high grade DCIS, lumpectomy/snb
  • I’m sorry to hear this, I know how frustrating it is. Do you have a breast care nurse you can call? Your oncotype should be in by now so they can tell you what it is over the phone. The oncologist will just discuss the treatment plan following discussion with the board but as a general rule if the score is under 25 and you are pre-menopausal then no chemo is of benefit. Over 25 score and you are pre- menopausal then chemo is recommended. 
    Did you have a sentinel node biopsy at time of mastectomy too which you are waiting results from?

  • Yes I have spoken to my breast care nurse hoping that she could give me the oncotype score, but was told she couldn’t give it to me as it had to come directly from the oncologist face to face. But she did say that was going to email the oncologist and say how this has stressed me out so much to see if they could get me an earlier appointment, so fingers crossed. 

  • Fingers crossed your results get in quicker than mine. At least you have an oncologist appointment booked, they didn’t give me an appointment till the results came in. I think I’m more frustrated because it took 5 weeks for my Her2 results to come back before this due to a broken machine! 
    And no they didn’t tell me why, or a least I don’t think they told me why as I just burst into tears with frustration then started mildly ranting. But I am in a better place with it all now and have accepted that I’ll get the news when I get the news. 
    Good luck with your results.