12 weeks in and still feel none the wiser

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Bit of background.....

4th March, referred to one stop breast clinic following finding a lump in my right breast late Feb.

21st March, one stop breast clinic appointment where examination, mammogram, sectional mammogram and ultrasound were carried out. Calcifications were found, so next step was a biopsy under mammographic guidance.

12th April, biopsy under mammographic guidance.

18th April, called in a week earlier than planned to confirm it was invasive breast cancer (no specific type) and then taken into a room by my breast care nurse to be given the talk and information pack. Told that I would be having surgery but first must have an MRI to check for any other shadows. The surgery has been provisionally booked for 2nd May, dependant on the MRi results. 

25th April, pre op assessment (even though I'd not yet even had my MRI)

26th April, MRI

1st May, I receive a call from the surgery waiting list team, confirming my surgery for the next day, yet haven't had my MRI results. The confusion  prompts my consultant to calls me to explain there is another shadow in my right breast that must be investigated with an ultrasound so surgery put on hold.

3rd May, Ultrasound carried out but unable to detect, therefore the radiographer suggests I will need to have a mammogram with contrast (CSM) and luckily (or not) there was someone available to do it while I was there. Long story short, various attempts to cannulate failed and on the successful attempt, the contrast when into my tissue rather than my vein so procedure did not work. 

9th May, 2nd attempt at CSM and thankfully it worked. Now to await results to know if surgery could go ahead.

16th May, CSM results in, shadow nothing to worry about, surgery for WLE and SLB confirmed for 11th June.

27th June, results day. (Finally) Original tumour 24mm removed with clear margins, the second shadow that was given the all clear turned out to be cancer but non invasive and was also removed. The blue dye only highlighted one sentinel lymph node but that was positive so CT scan needed to check from neck to pelvis and if that comes back okay, then next step in to remove axillary lymph nodes and original potential treatment plan of radiotherapy and hormone therapy may change. To see consultant for results in two weeks. 

28th June CT scan carried out.

11th July, I call my BC nurse following being on the agenda to be discussed in yesterday's MDT meeting. She confirms CT all good but she need to speak with my consultant after his clinic this morning, and will call me back to let me know when I will have my appointment with him to officially discuss these results and prep for next surgery etc. No callback. I gave the benefit of the doubt and allowed until the next day when I called the BC Nurse team again and after speaking with the admin staff was assured either she or my nurse will call me back. Still no callback, despite leaving a further voicemail later in the afternoon and now here I am, wondering if I am being irrational for being frustrated, even when she has at least given me the positive news that my CT was clear?

I don't know if I was 'oversold' the support I would get from the BC nurse team at my diagnosis or if I'm just expecting too much? 

I blame myself for not asking enough questions throughout this journey so far, but now all of a sudden, I have so many and feel a little more in control and ready to take the bull by the horns but almost feel abandoned somewhat. I still have no idea of type and stage, only been told its hormone related (again, my fault for not asking more questions).

Sorry to share so much but have been struggling this last week and needed to word vomit it all out.  

  • Hi Babybel,

    First welcome to the forum and for sharing your journey this far.

    That sounds a lot of stress and worry. The waiting for results are horrendous. I had weeks of nervous belly and emotional exhaustion. That was bad enough.

    I have had my op now on chemo. What I found helpful during the waits was the online chats here on the macmillan page at the bottom. I chatted with a lovely nurse Helen who took the time to explain everything for me. She also advised that she could forward questions to my team so they would have answers for my concerns at my next appointment. I found this helpful because you rely on the information from consultant for reassurance but the questions go out your head with the stress of it all. 

    Please use this forum for support and advice from others. But please do the online chat with macmillan nurses or telephone they respond very quickly.

    I'm so sorry you feel abandoned with no clear diagnosis or  treatment path yet. Fingers crossed it all happens fairly quickly.

    Good luck with your recovery xx

  • And the number for the lovely team here at Macmillan is 0800 808 0000. Best wishes 

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  • Thank you both. My BC nurse called this morning and I have an appointment this week to discuss the CT results, the next surgery and booking date and I also bombarded her with a lot of questions. I will most definitely consider the macmillan nurses if I find myself needing support in the future though. 

    I now know I am ER positive and HER2 negative. Not much more can be determined until the results of the next op are in.

    I guess I was very naive as to how long this journey is and is going to continue to be, and also to the varying peaks and troughs of appointments and procedures. 

    I think I will be more settled when I have a treatment plan in place so as to have some routine. 

    I have been off work since I was diagnosed and my workplace are incredibly supportive but I still find myself questioning if I should be trying to work between all these different steps. I know some people continue to work, and I always thought I would be that person but until it happens to you, you don't actually know how you will cope. 

    It really is life changing isn't it? 

  • Hi babybel,

    I have been off work since diagnosis and told to take as long as needed after treatment. My work have been really supportive. I'm not sure how I would have fitted in in to be honest.

    Between the emotional wreck I was at diagnosis and now the appointment and treatments. It's pretty full on.

    However I do understand some people need to work because of self employed or not having great employers.

    You do what feels right for you. I am HER2 - EP + also.

    Good luck with your recovery xx

  • Hi  , lovely replies already from the fine folks here. Just wanted to pop in to add a hug and comment on a couple of things you’ve raised. One, you are certainly not naive in not realising how complex this cancer business can be! It’s probably best that most people have no idea of it all until they go through it. There are so many ifs and buts and things can change during the process of investigations, results and diagnoses. And then re work - good advice above to do whatever is right for you. In my case, I worked up to my operation, and fully expected to be back after a couple of weeks but in the end I was signed off for 4 months in total. This took me to 4 weeks after my radiotherapy finished. Work were very supportive, luckily, but I did feel guilty. Please do take however long you need, this is the time to put yourself first, which I think we all struggle with. Love and hugs, HFxx

    HappyFeet1 xx
    Don’t be afraid to cry. It will free your mind of sorrowful thoughts. – Hopi
  • Hi, just to give a different perspective, I worked throughout my treatment, only taking  5 weeks off post surgery. However, I did have the benefit of being very flexible with my employer and being able to pretty much choose my hours. Working really helped me to focus and not get distracted by my symptoms or side effects but I get that is different for different people. Best wishes 

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  • Thank you everyone! Who knew a bunch of strangers could do so much for each other!  Thank you for making me feel not so alone Heart️

  • Thank you Heart️ 

    This has really helped, i hope you are doing well now xx

  • Thank you. 

    This is so reassuring. I have been drawn to your situation from when I first joined the forum, as it was similar to mine at the start. Also really highlights though, how individual everyone's experience is and no two people are the same. 

    Thank you for being a constant in this forum and i hope your treatment is going well xx

  • So good to get a different perspective! I'm so pleased this worked for you. I have the odd day where I feel positive and think I could work, but sadly it is the odd day. Having never been a sicky person either, it goes against my work ethic but I've worked hard at putting myself and my wellbeing first ( with much needed encouragement).

    I hope you're doing well now xx