Second time around but so much more complicated

Hi, I’m new to this website and forum. I don’t have a specific question but I just want to share my current experience, and see if anyone else has or is experiencing anything similar. I was first diagnosed with breast cancer in my right breast in 2008 when I was 55, following my second routine mammogram. What was initially thought just to be DCIS, following a lumpectomy, a very small tumour was found which had not been spotted on the mammogram. Lymph nodes were clear, I had 3 weeks radiotherapy. I had my final mammogram on the 10 year follow up programme in 2017, and in 2018 was relieved and delighted to receive my letter saying I had been all clear for 10 years and was now going back on the 3 yearly routine mammogram programme.


So I was called for my first mammogram in April this year. 10 days later I received a letter asking me to come in for further tests just 2 days after that. The mammogram had picked up something on my left breast. A 3D mammogram and scan followed with a radiologist, who took 3 biopsies from my left breast. She then turned her attention to my right breast, and said that she was not entirely happy, and wanted to take biopsies from that too, just to satisfy herself. Lymph nodes both sides appeared clear from the scan. But they did tell me straight away that they were fairly certain I had a new cancer on my left side, but that it was small (less than 2cms). It looked like I was headed in the same route as before.


So I was shocked a week later to receive the results that I had cancer on BOTH sides. Because the right side was a recurrence, the ‘conventional’ or ‘standard’ advice was to have a mastectomy on the right, as that could not be treated with radiotherapy again, but that they were happy to do a lumpectomy on the left with radiotherapy. I was given 2 weeks to think about it, and had a CT scan which did not throw up any nasty surprises. It was believed the tumour on my right side was very small, and could not be detected on a mammogram. So I had a frank discussion with my consultant about whether it was really necessary to have a mastectomy. Because my age, the 11year gap since previous cancer, and the believed small size of the tumour, he agreed that he was happy to perform another lumpectomy, though without radiotherapy. I understood that my chance of a recurrence was increased, but was prepared to take that risk, as I knew I could be regularly checked and could always opt for the mastectomy route at a later stage.


On 21 June I had a double lumpectomy and sentinel node biopsies. Because of my precious cancer and sentinel node biopsy, it was not so easy on the right side, but my consultant managed to take 2 nodes each side.


Two weeks later I received my results. Left side - clear margins but the sentinel node had cancer cells in it, but not the second node. They will treat that with radiotherapy and probably extend it into my armpit to cover the nodes. Right side - further shock. The cancer was more extensive than anticipated as it turned out to be lobular cancer, which I understand cannot be easily detected on a mammogram or scan. Indeed, it was only the diligence of the radiologist that picked up anything at all. They did not get clear margins. The good news is that the lymph nodes were clear.


So now I am booked in for a mastectomy to the right side next week, and the enormity of what has happened to me is taking hold. I am a strong person, with a good network of family and friends, and a strong Christian Faith which has sustained me, but I am still struggling to come to terms with being cancer free for 11 years and then facing this.


The cancer is grade 2 and ER+ so I will receive hormone therapy. Last time I was put on tamoxifen but came off it after 2 years because of side effects (bleeding), and it was thought my chance of recurrence was very small. I’m desperately hoping I won’t have unbearable side effects this time as it is far more important to carry on with it. They have still not come up with the HER2 test result, for some reason the laboratory cannot seem to give an answer. I am hoping to have that answer after my next surgery, so they can get a complete picture before planning and timing the next stage. I am hoping too that I won’t need chemo, but am not ruling out anything at this stage as I have had so many disappointments along the way since April.


Sorry this is so long, but it’s a way of getting it off my chest by writing it all down!

Hi SueLSE, thank you for getting in touch and sharing.

I am sorry you’ve not yet had a response to your post. I’m sure someone will be along shortly to continue the conversation.

In the meantime, if you’d like to chat with one of our breast care nurses, you can call them on 0808 800 6000. They are available during the week 9am-5pm and 10am-2pm on Saturdays.

Take care,


Social Media Officer 

Hi Sue…Sorry you are having a rough time. I can relate to you in a lot of ways at the moment. I’ve had aches and pains since March and numerous blood tests and scans. My breast cancer was diagnosed in 2009. I had lumpectomy, chemo and radio then on tamoxifen etc for 5 years. I had all my lymph glands removed as it had gone into 2 of them. I was shocked to discover from the ct scan that I have another lump in the same breast…10 years later! I had no idea it was there as I have a lot of numbness on that side due to the removal of the nodes. I had a scare in October 18 but it turned out to be fat necrosis from my numerous fat transfers. The lump was not there then! I now have been told there is a possibility its spread to my bones and have my results appointment on Monday. I’m dreading it as whichever scenario I consider the results are not positive. I also cant get my head around how quickly my health has deteriorated. I was fine 9 months ago! I wish you all the best with your treatment and feel free to have a rant on here. We all need to get things off our chest. Its hard to keep positive and it helps greatly to know you are not alone. Xx