In my best interests,

I was diagnosed with breast cancer 6 months ago, I was told they couldnt operate last october because the tumour was close to the muscle wall and it was 50mm, which i would need a CT for protocol to see what was happening elsewhere, I was given Zoladex and Tomoxifen after being passed onto an oncologist because they had found lung nodules and something in the neck. Many treatments were discussed they could do radiotherapy or pre op chemo  etc etc. It was a whirlwind of emotions. I had already been suffering from depression and stress and was off work when i was diagnosed. Each monthly CT and MRI result was not what they were hoping for.By January they decided the treatment clearly did not suit me and it had not shrunk the tumour. I was surprised they did not offer me alternative treatment even though yet again I was sounded out about chemotherapy. Each time they had their weekly meetings they were no further towards deciding the next course of action. They told me I was a delicate case (whatever that meant) all I know from a young age anything stronger than a shop bought paracetomol made me feel lousy so when these two drugs got to work and I suffered so many different symptoms that played mercilessly with my hormones and emotions. I was almost suicidal. I was passed back to the breast specialist after I had a PET scan. He rang me discussing a two approaches to surgery, I just wanted the best possible outcome and listened and gave my opinion. I think the lung and neck nodules are not of concern, since the PET scan ( but I personally became more worried because they actually have not said why). Tomorrow I am having a pre op assessment feeling I have not really been given the oportunity to make choices, because they are doing exactly the same operation they planned to do last october.I am physically and emotionally worn out and my mistrust of the situation. I have felt at no time I have been able to make an informed choice because they talk to me about treatments and I think whoa what are they talking about I need to know what it would mean for me , then don't end up offering them anyway. I actually don't feel prepared and more confused than when I was diagnosed. It has all been if buts and maybe's and now they have made the decision my opinion may have been considered but not been part of the decision. I almost feel I would be ungrateful to either ask for a full explanation of why they have come to this decision or disagree with it. All I know is I am heading for an operation that if I was brave enough to say NO I am not convinced is best for me, would they not take me seriously . I would like to do what I normally am comfortable with and say lets see what happens BUT would this mean revisiting this again 3, 6 months or a year down the line. Also they have not even said anything about what happens if anything after the operation the breast care nurse has said brushed over the option of they may offer a little bit of radiotherapy afterwards. I really am scared and in a dilemma. Its easy to be told you must stand up and say your not happy if I did would they even offer an alternative or take me seriously?

  • Hello there, sunshinemaz.  I may not be the best person to advise you as I have not  had anything like your experiences but I have read your post through and can certainly pick up on your fears and concerns.  And I am so sorry that  you have so many worries on top of your health issues.  You could try ringing the nurses here (Freefone 0808 800 4040 Mon-Fri 9am-5pm) and/or MacMillan Cancer Support (Freefone 0808 808 0000) either of whom will listen carefully to what you are saying and talk through your options and hopefully help you find a way forward.   When in a muddle and unsure what to do it can help to talk to someone else; sometimes others can see a path to follow more easily than we can ourselves.   Others on this forum may have more understanding than myself of what you are going through also.  Best wishes.  Annie

  • Hi Sunshinemaz,

    Annieliz has given some sound advice.

    Have you been given a named nurse at the hospital to discuss your concerns with? If you have it would be worth talking to them too.

    I am sure your care team would rather you discussed your concerns with them before you go in for surgery as you wouldn't be the first patient to refuse to sign the consent to treatment forms on the day surgery is planned. You are quite within your rights to refuse for whatever reason and if you feel you haven't been consulted properly, had all the options explained and the risks and benefits of each option discussed then the fault is with them for not communicating properly. 

    If you aren't comfortable about tellng them your concerns face to face you could write to them or ask your GP to contact them and explain your concerns.

    Best wishes

    Dave

  • Hi there ... I'm a breast lass ... had grade 3 her 2 ... like you, my head was all over the place at first .. and l wasn't sure l wanted any treatment after hearing things ... but my niece came with me , and l told the Dr after he explained what he wanted for me ... l told him firmly but calmly, this is my cancer and my journey.. after that l explained l wanted all the info and pros and cons , then wanted a week or so to decide what l wanted ... 

    Talking with my niece (who's a nurse) she said my cancer was close to coming through the skin and when it does that there's little l could do to stop it fungating... so in my mind it was a no brainer ... so l agreed to mastectomy (total) the wait for it was the hardest part ... wanting it all to be a dream and not real ... but l said to myself , right I'm not so much loosing a boob as getting this cruel cancer taken out of my body ... 

    The op last July was really not too bad .. couldn't believe how little pain l had from it ... though the arm pit did ache and that took some time to get mobile ...but it is doable... I'm on tamoxifen now for 5 years ... and here l am chatting  to you ...  my oncologist lets me decide everything now , because he respects it is my cancer ... so if i were you , take someone with you .. write down all the questions you want answers too ... get your friend / family person write down the answers.. and say youll need couple of days to decide what you want to do ... it worked for me , and l feel im in control of things ... 

    Keep in touch and would like to know how you go ... there's lots of us breast ladies here ... we've all been were you are now ... big hug Chrissie