Oncologist Appointment post masectomy

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Hi.

my partner has a mesectomy in early December after 3 failed lumpectomies.

We received results that she now has clear margins and hormone therapy started last month.

It was only then that chemotherapy was ever mentioned despite this ordeal have been going on this August which was a huge shock and a massive blow as we had always just been told that hormone tablets would be the only requirement going forwards.

2 weeks later at her next reconstruction appointment with her surgeon we were told meetings had taken place and it was decided chemo would not be required.

Since then we have started trying to make future plans for the first time in months after only getting by literally getting through one day at a time. We have started planning the wedding abroad we were forced to postpone etc.

Yesterday though we have received an appointment letter to see oncology tomorrow. My partner is devastated and fearing the worst - we’ve had an ordeal so far to say the least with 4 surgeries and months of consecutive appoints with ever worsening news only to finally start to appear to be making some small progress.

We had been told no further appointments were required other than for her breast reconstruction so am confused as to what this appointment is for and can only assume that it’s because they’ve decided chemo is required.

i just wanted to gauge people’s thoughts/experiences as to whether they had experienced similar.

im worried for her mental state as she has bevelooed an almost PTSD over hospital appointments and being given bad news. She will not cope mentally with chemo after already having the masectomy. She will cancel the wedding at the fear of losing her hair etc and her mental health will spiral after finally beginning to start to look forwards.

shes refusing to go to the appointment tomorrow and threatening all sotrts of unspeakable things.

I don’t know what to do to help/ support/ reassure her?

Can anyone suggest what this appointment could be other than the need for chemo being has we had effectively been signed off for treatment other than hormone therapy.

We have rang the hospital but they could not explain the need only that she needed to attend.

thanks

  • Hi, the appointment with a oncologist could be to set up the hormone therapy. There will be forms that need to be signed so it could be for that. We all go in a spin when we are thrown off guard with an unexpected letter. Please encourage her to go its inportant for any further treatment. The hormone therapy i take has to be set up by an clinical oncologist you can not be given it otherwise 

  • Hi SUTC, this is such a lot you are both dealing with. I'm glad your partner has come through surgery successfully.

    The oncologist appointment could simply be about hormone tablets - there's no way of knowing until you get there. I hope you are able to reassure your partner and persuade her to go, with you to support her.  

    Do you have a number for the CNS nurses? You could try calling them and explaining, I'm sure they would talk to your partner and find the right way to encourage her to keep the appointment. Good luck.

  • Thanks for your reply. She started the hormone therapy last month. All subsequent appointments have been with her surgeon who carried out the op and it was him who prescribed the treatment.

    She has been taking tamoxifen for about 4 weeks now.

    He effectively told us she was signed off for treatment for the cancer side of things (other than yearly mamagrams) and all that remaining was breast reconstruction .

    worried as to why she’s now been called back after being told this and her already being on the tablets

  • Thanks Cherry, she has rang the care nurses today who were unable to explain the appointment unless it had been deemed that other treatment was required.

    They suggested ringing the secretary for the oncologist which she did but all she could disclose was that she needed to keep the appointment.

    Without going into detail she is really struggling with hospital appointments due to her journey so far. The first hospital made numerous massive errors forcing multiple surgeries and wrong diagnosis so we were forced to seek private treatment for her treatment going forwards including the mastectomy. The private surgeon then agreed to transfer us back to the nhs under his care so we are now on the 3rd hospital and she was finally starting to place her trust in him. He is fully aware of the errors in her treatment so far and has been great with her to this point and has been very open and honest so she is really confused and worried as the why the need to see an oncologist has been disclosed by him.

    Shes seeing the surgeon fortnightly for  the reconstruction so she is refusing to go tomorrow until she speaks to him and is pretty adamant.

    was hoping that things were finally starting to look up but this has knocked her right back down again

  • I recently saw the oncologist at a similar stage.(diagnosed sept) surgery November.It was to talk aboit having a bone scan because the hormone treatment can make your bones brittle so it might be for that. 

    She also spoke about going on bone strengthening meds and me having blood taken before so could also be about that. 

  • Hope you sort things out today and it all goes well for your partner. There can be many unplanned treatments that just pop up when you are not expecting them. Its such a stressfull time for all. I am going into see my oncologist today to see about a change of chemo as my cancer has gone rouge whatever that mean. All the best 

  • Hi  

    As she has started hormone therapy the appointment could just be to see how she's tolerating the treatment. I saw my oncologist a little while after I started treatment and it was just to see how I was doing.

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  • Thanks all. She has come round to the idea of attending. Prey its not more bad news?

    good luck with your appointment wino