Lumpectomy and reconstruction

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Hi

I have ER+ cancer in my left breast. I was diagnosed in November '23 after being told by my GP that I had a breast infection which she treated with antibiotics in September. I've had 8 cycles of chemo which finished on 13th May 24.

Getting surgery sorted had been problematic with delays (original surgeon going on holiday etc).

I was told at diagnosis that I would have a named Breast cancer nurse. She appeared once at diagnosis - I have not seen nor heard from her since. I rang twice with an issue in the early days but had no reply so resolved the issue myself. There has been no contact since.

A different BC nurse appeared at the first chemo meeting when I had to sign forms. There has been nothing since.

I asked one of the nurses in chemo how I could see a BC nurse as I knew surgery would come up at some point.

A BC nurse (in charge of BC nurses?) then got in contact with me. She suggested after discussion that it would be better for me to have surgery in another hospital in the trust that had female surgeons. I agreed as I wanted a female to do the work.

I eventually saw a surgeon for the first time on 2nd July 24, some 7 weeks after last chemo. This was a long time. I could not speak to the BC nurse (the one in charge of other BC nurses?) as she had gone on holiday and I had no contact numbers for anyone else. 

The surgeon told me that a lumpectomy was recommended with radiotherapy after. Even though she would remove 17mm tumour with 5 mm margin, leaving me a cup size smaller , she does not do reconstruction.

So now if I agree to a lumpectomy as I am worried about the time delays and want the cancer gone soonest, I will have no nipple on my left breast as the tumour runs under my nipple and have different size breasts. I wear fitted dresses when working so will have to chuck out a lot of clothes that are part of my identity.  It is not doing anything to help my self esteem which is very low. 

I am devastated as information I have read online from valid cancer sites and what I was told at initial diagnosis have led me to believe that reconstruction would be done.

I am to meet with the surgeon again next week to tell her what I want to do. This will be 8 weeks after the end of chemo and then the surgery date will have to be set which means even more delays. The surgeon would not give me consent forms to sign at the meeting on the 2nd July as she could see I was trying to process the information she had given me.

Could you advise me please on the following;

How do I /Who do I speak to about reconstruction? 

Is reconstruction done for a lumpectomy or do I have to live the rest of my life lopsided and without a nipple? 

Who do I speak to about any concerns I have regarding treatment /side effects/ prostheses etc as it appears I have no named BC nurse as I was told at the start?

I feel alone in a deep sea.

Thank you for any advice you can give.

  • Hello Blueskythinking.

    Thanks for getting in touch. My name is Helen, I’m one of the Cancer Information Nurses on the Macmillan Support Line.

    Welcome to our online community. I see you have joined our breast cancer forum; I hope you are finding it a supportive environment.

    I’m sorry to hear that you have faced such delays in getting surgery and that you feel alone and unsupported.

    As we don’t have access to individual’s health care records or teams, we cannot give individual advice, but we can provide general information to help you decide how to proceed.

    Breast reconstruction is not always needed after an operation to remove part of your breast, but if you have a large amount of breast tissue removed, you may be offered reconstructive surgery

    Having radiotherapy may affect the options for and timing of breast reconstruction. This is because radiotherapy can increase the risk of scar tissue forming around an implant. It can also affect a reconstruction that uses your own tissue, making the breast feel firmer, reducing its size and possibly altering its shape.

    Decisions about treatment and care are best when they are made together with your hospital team. Health professionals should give you clear information – including about the pros and cons of surgery for you – and talk with you about your options. They should listen carefully to your views and concerns.

    If you’re not happy with the level of support you have received you can ask for a second opinion. If you find it difficult to get a referral for a second opinion, you may be able to get help from patient advice services. The details of how to find your local service are included on the previous link.

    You can also speak to patient advice services about the fact that you have not been allocated a named nurse as you were informed would be the case. They will be able to advocate on your behalf.

    If you have any further general questions, or wish to have further support, you can contact the nurses on the support line, speak to the nurses at Breast Cancer Now, or call in to one of our Macmillan Cancer Support Centres. To find out where your nearest support centre is, and to find other support local to you, you can search via our In Your Area directory.

    I hope this information is useful. Please don’t hesitate to call to speak through your concerns. If you are unable to call, you might consider speaking to us via webchat.

    The Macmillan Support Line offers practical, clinical, financial, and emotional support. You can call us free from landlines and from most mobile phone networks on 0808 808 00 00, 7 days a week, 8am – 8pm.

     

    Best wishes, Helen

    Cancer Information Nurse Specialist 

     

    Ref HK / PL