I had a second meeting with oncologist Dr. Cleator at the LOC this evening. I knew I had to arrange a follow up from our pre-surgery chat to talk about next steps and I have been pensive and afraid of this meeting. I spent a lot of time researching chemotherapy, the merits, the pros and cons and had made list of questions to go through. I was afraid that the meeting would only focus on which drugs I would be getting and when we’d start. Fear is a funny thing and the more I procrastinated about this meeting, the bigger the fear grew of course.
I feel I had a very good session with Dr. Cleator. She printed off a copy of the pathology report for me and we went through it. Finally a conclusion on the HER2, it’s negative. So is this a good thing? HER2 positive means that the cells would show an excess of a certain surface protein called HER2. This makes cancers generally more aggressive but can be well treated with Herceptin, which is given for one year. However, the risk of heart damage is greater when Herceptin is given along with other chemotherapy drugs. Being Her2 positive also means a more extended period of treatment. Anyway, the results are HER2 negative!
She reminded me of our discussion 4 weeks ago when we talked about whether I should have chemo first to shrink the tumour down first and then have surgery or surgery first. She said that I had completely the right operation. She doesn’t think we could have avoided the mastectomy with this kind of cancer (scattered, hormone sensitive & HER2 negative) as it was infiltrating the areola right up into the nipple. Well, no wonder I had pain!
The pathology report showed that there were two areas with DCIS. The area of 36mm and one at 11mm. The report further shows that there were some benign areas in the breast. In between there were spots of pre-invasive areas. In the rest of the breast, the report shows some spots that were benign but may have been forerunners or markers of increased risk of breast cancer. Altogether she said that it was ‘quite an unstable breast’ – that’s one way of describing it!
The mastectomy itself was ‘well excised’ meaning safe margins with enough normal tissue removed between where the cancerous cells were and where the knife cut. Surgery was the most important treatment and it was the right thing to do. Okay good. I was beginning to wonder whether I could have preserved that breast but felt reassured this evening about the process so far.
We then talked about radiotherapy and she doesn’t think I need it. Phew – one less treatment! She explained that if there were more than 3 nodes involved, they’d consider radiotherapy but since the cells are hormone sensitive and the cancer not particularly big, I will almost certainly be fine without it and it would only be over-treating me. Good!
Now onto the subject of chemo. I explained why I struggle to comprehend it, make sense of it, my fears of it. I asked about percentage prognosis and we filled in details onto some tool called ‘predict’, which showed that in 10 years, having had chemo would improve survival rate by about 14%. These are of course all stats. Hormone therapy plays a big role and she thinks that having it over 5 years (e.g. even for 10 years) can help reduce risks quite significantly too. The debate on chemo vs. no chemo has led to a lot of research and trials. Apparently there are also a few genetic tests that are done on the affected cells and I had read about one of these: Oncotype DX test. According to Dr. Cleator, the Endopredict (which is a German one) actually performs better than the former. I asked for the test to be done so that I can factor this into my decision about chemotherapy. The test essentially determines the risk of distant metastases in patients with estrogen receptor positive, HER2-negative primary breast cancer. It will certainly be worth seeing the results of this in a week’s time.
She highlighted three different chemo treatment paths. One lasting 18 weeks, one 16 weeks and one 24 weeks. The 24 weeks cycle is much less aggressive. She added that there is something to be said to get it done with. I don’t think I’ve decided on this yet. Some of the cycles are known for more hair loss, others for potentially no hair loss. I have some time to decide.. and to see what the Endopredict says.
Talking of weeks of time. Treatment is likely to start around 5 weeks after surgery so that’s in about 2 weeks time. This is good, I somehow feared that everything had to happen urgently and it doesn’t seem so. Time seems to have taken a whole new meaning for me these days. I have lots of time for things I want to have time for. I’m also observing how time plays into patience -something I thought I had little of. But waiting (time) for appointments, for healing, for results, for answers, making decisions – the quick ones and future ones on treatments – whole new era for me.
I feel much less scared after this evening and grateful for how the session went. I had some conversations lately around why and why now. While I wait for some of the answers to manifest, somewhere over the rainbow I know that every cloud has a silver lining! This was saturday’s beautiful rainbow that stretched from the surface of the ocean into the sky in Suffolk.