Decision made but I feel low

After a fairly long diagnosis process and consideration of recon options, I had meeting with consultant yesterday to finalise details for the op next week (bliateral mx with immediate recon). I had researched as much as I thought I needed and had peer support so went to the hospital with a long list of questions and really optimistic that we would be able to agree a way forward and that I would feel so much better with the uncertainty removed.

The meeting didn’t go too well. The clinic was running 2.5 hours late and I became more and more anxious in the waiting room and was feeling totally frazzled by the time I saw him. We agreed recon will be using expander implants which I’m happy with, though he said he would fully inflate them during the op and I didn’t understand why not use permanent implants then? He then measured me for the implants and as he has mentioned several times before said I could have larger breasts if I wanted - I made it clear before I want to keep the same size - he makes me feel a freak but 34b is the size I’ve lived with for 20 years - why would I want to change?

Then he seemed to take offence when I asked him to check my arm which I’ve struggling to recover movement in since snb 3 weeks ago - I only wanted to check it was normal to have the pain now extending down past my elbow and that I was doing the exercises correctly. I got a right ticking off - didn’t I realise how much worse recovery would have been for full axial clearance? (i had just 4 nodes removed). After that I didn’t have the heart to ask all my questions about the op except to check the date.

I now feel dreadful. It seems I’ve alienated the surgeon and I’ve never really clicked with bcn. My partner said he was glad I was now sorted so perhaps I wouldn’t be so miserable this weekend! So I’ve now got to face this mutilating surgery feeling nobody is on my side,

Sorry for ranting on.

Hi misha, don’t worry about ranting, that’s what we are here for! I want to give you some reassurance about your arm if I can. It sounds like what I went through after my SNB and mastectomy in December. The pain below the elbow sounds like cording. I had severe cording after a second op ( axillary clearance) and it had already started after the first. It will feel very tight, like an elastic band. You need to mention to your physio and she will be able to help. I was frustrated too as I did the exercises as I should. I could not get my arm above shoulder level and was upset, as I play the violin. I now have full movement back!

Good luck with the op, it’s awful having to wait for appoinments.

Take care
Liz

Hi Misha

I don’t think the surgeon will be offended. he was probably really miffed that he was running so late and stressed out. Shouldn’t react like that, but unfortunatley they do. my surgeon was a right grumpy old so and so who always looked stressed out. I got so tongue tied with him, I stopped asking him questions. Instead, I now ask my BC nurse everything. She is far more approachable and has my notes in front of her. She has even liaised between me and Grumpy to get the answers I want. You say you haven’t clicked with your BCN - is there another one in the department you could change to? Don’t give up on questioning. Surgeons can be a funny old breed and need to learn how to communicate better and you need all your questions answering. If no joy, what about putting them in a letter and sending it to him? .

Hi Misha

If you feel that it would help, you are welcome to call our helpline to talk things through with one of our specialist breast care nurses. The number to call is 0808 800 6000, they can offer you support, information and a ‘listening ear’. Open Mon-Fri 9am-5pm and Sat 9am-2pm.

Best wishes
Lucy

Thanks so much Liz & Cathy. It’s so nice to have a reply back and you understand.
I didn’t think of a physio as I’ve not seen one yet but presumably will after the main op. So I’ll continue with the exercises and ask advice then and never mention again to my surgeon or bcn.
Cathy - I couldn’t help laughing when you mentioned Grumpy. I am going to visualise Grumpy (of the 7 dwarves) when I next see my surgeon and maybe he won’t seem so intimidating. It was his first clinic back from 2 weeks holiday but I don’t feel like giving him the benefit of the doubt right now.

More seriously, I have written a new list of my outstanding questions and will think of ways to get the answers I want. My bcn works part of the week only so I could phone up on a day I know she’s not there or email her the list and ask her to help - I’ll think it over. If all else fails I can ask some things on the day as I think a junior doctor will see me on the ward as happened with by snb - he was more approachable. I just don’t want the nightmare I had last night going into the theatre putting my life in the hands of someone I don’t trust. This I’m sure is going to be the longest week of my life.

Thanks again for your thoughts

Misha.

So sorry to hear that you had such a stressful time at the clinic. I would like to offer reassurance regarding the arm - I had node sampling (7 nodes taken) in Janurary and was not given any physio from the private hospital - by the time I got to the NHS physio I had fairly severe chordin. My physio was fantstic and managed to get me from not being able to raise my arm even to shoulder level to getting it up and over my head (for rads planning) within a week … she did say that this was fairly brutal and she would normally do this over a matter of 4-6 weeks but with my planning session looming and me desperate not to postpone we both worked really hard. One of the thing she did was to massage the chording with her thumb to stretch it - she was delighted when she felt a pop.

Good luck with your treatment and your operation.

Misha
Hey you know we are all on your side, feel the support coming at you right now. To be honest I don’t think he will even remember the conversation, in a clinic that was obviously over booked that day, so put it out of your mind.I would rather have the fartiest surgeon who delivers a good job than one who has bedside manner to perfection but is not so good in the theatre. We should have one that can do both in an ideal world. Your treatment is something I do not know enough about but I’m sure your post will be answered as you are never on your own for long on this site.
Everyone who reads this will be thinking of you, keep us posted. Once I have made my decision I try not to look back too much or I just dwell on it. One more thing on your list done. My whole treatment is a tick list in my head at the moment, which works well until some b----r adds new things to it!
Do something nice today. You deserve it
Love
Lily x

Hi Misha
Sorry you had such a lousy visit with your consultant, I’m sure a lot of it was down to the return from holiday and the clinic running 2.5hrs late. My surgeon never saw me before my op so I didn’t know what he looked like. When I was returned to the ward after the op 3 people came to my bed and asked me how I felt, in the background was an older gentleman I’d not seen before he looked over and left. I asked who he was and was told he was my surgeon, he did not say a word. I never got to meet him and I would have liked to have said thank you, he did a very neat operation and I will always be grateful for that. I do think some consultants have a way with them so please put this upset out of your mind and concentrate on preparing for your op, doing your exercises and giving that partner of yours a boot up the backside.
Best wishes
Caz x