Hi Skyelillie,

I agree that it's hard to unload on to friends all of the time and, from my experience, if you do this too much, many start to drift away. This is where the likes of this forum comes into its' own - you can say or ask anything you want to here and none of us will take offence. There is always someone here who understands the misery you are going through and who appreciates how this affects you. I am sure that you've already discovered that the more positive you can be about the outcome, the better your family and friends can cope with you. 

One of the big fears for anyone with a cancer diagnosis to deal with post-surgery is the fear of recurrence. It's never easy to cope with this, but it does help if you can keep hold of that positive attitude. Yes, the two week wait feels like forever at this stage, but you are almost there. We all tend to give vent to our overactive imaginations too and this can lead us to all sorts of dark places. I am glad to hear that none of your sisters have been affected.

My concerns started immediately after my initial surgery. The pathology results showed that the surgeon had failed to achieve a clear margin. He claimed that he was aware of this at the time and had taken further tissue away, which was more than enough to achieve a clear margin, but that this tissue would not have shown up in pathology. Previous to my diagnosis, I had lost my mum to secondary breast cancer which had spread to her brain, bone, lungs and liver. She fought the disease for 12 years, before she succumbed. Because of this, I would have been happier to have further surgery, but my surgeon was adamant that he had cleared everything. Like you, I was never convinced! Just under 6 months after my surgery, I found a lump in my other breast. I had changed to another surgeon by then, because my original surgeon, refused to test the other breast, although he was pushing me to have radiotherapy. My argument was that there was no point in having radiotherapy for one breast, whilst he was ignoring the other.  He annoyingly, stated that I was refusing treatment and failed to give the reason for this! He eventually referred me to the chief surgeon in the area, stating this to be the case.

The new surgeon started dressing me down for refusing treatment, until I pointed out that I was not refusing treatment, but wanted to ensure that both breasts would be treated, if the lesion in the second breast turned out to be cancerous. I stated that we were at an impasse because my original surgeon was refusing to test the other breast, despite having a sizeable lump in it. The new surgeon's attitude changed completely at that stage and he offered to examine me. When he did, he was pretty sure that this was breast cancer. Fortunately, this turned out to be pre-cancer, following my biopsy and we decided to leave this and monitor it closely. The new surgeon offered to take over my care and I accepted. Fast forward another few months, and I found another lump in the original breast. This was situated in the same area as my original tumour was. Unfortunately, this was cancerous, but it was the same type of breast cancer and still Stage 1. I then had a double mastectomy. I did ask whether this was a recurrence of the original cancer, as it seemed quite a coincidence that it was in the same area, but was informed that it was a new primary cancer - maybe I'm just sceptical! 

For the first year, I took Tamoxifen, but changed to Letrozole for a further 6½ years after the double mastectomy. I still considered having radiotherapy following the second surgery, but the verdict was out on whether or not this would have been of any benefit. I saw two researchers, who specialised in radiotherapy research. One was of the opinion that "it was worth giving it a go", but gave no validation as to why. The other seemed much more informed and advised me that there was no point, as by then 11 months had elapsed, from the time of my original surgery and he stated that, to be effective, it needed to be applied within 3 months from the date of surgery. He gave me a number of other valid reasons for not having it and I finally went with his advice.

As you say, we're so reliant on getting the correct advice from our surgeons. I must admit that I felt very let down after this experience!

Sorry for such a long tirade, but it was rather a convoluted story!

Jolamine xx