Scared it's not working

Hi there, I have stage, grade 3 breast cancer, 5cm lump sat on top of breast.I’m on weekly Taxol for 4 cycles followed by another 4 cycles of AC to be completed prior to surgery. To date I’ve had 5 sessions so am nearing completion of my second cycle. My lump, however, does not seem to be shrinking at all. I even wonder if it feels like it has got bigger at times (I’m not certain). I’m terrified chemo is not working & I will have to have a full mastectomy which I really want to avoid if possible.I am trying to keep positive but this anxiety is constantly lurking in the back of my mind. How early are the hospital able to assess my response to chemo? How do I deal with this ongoing fear? Gah


I’m so sorry you’re going through this anxiety. I went through treatment in a fog of misery so never really thought about what was going on but I had my mastectomy first. 

The fact is, there’s a range of ways to assess if chemo is working and your oncologist wouldn’t keep you on a regimen that isn’t working. Your blood has cancer markers and tumour markers that they are probably monitoring closely. The numbers don’t matter - some start at 129, some at 999. What is important is the downward trend and levelling out as you go through treatment. If your markers rise, then the chemo isn’t working. At your next treatment, ask to speak to the doctor on duty and ask her/him exactly what’s going on. Explain your doubts and fears. You should get a helpful response. But think carefully about what you ask and what you want to know. I for instance will not ask about my prognosis.

Poking and prodding your tumour will maybe make it feel as though there is no change. Presumably though your oncologist will have told you if the tumour isn’t responding. You may be scheduled for a scan of some kind to confirm any changes. What I would say is that, if your tumour is stage 3 and you are advised to have a mastectomy, then have it. A breast isn’t worth the risk of recurrence in a couple of years time so make sure you have all the information you need before making that decision. If you opt for a lumpectomy, you may never shake off the feeling that it might come back. Of course, you may not be a worrier, in which case that strengthens the case for a lumpectomy. What I would say is trust your team. Generally, they know what’s what and have your best interests at heart.

As for feeling positive all the time, it’s just not humanly possible. There is nothing weak or wrong about feeling anxious or distressed or so fatigued you can barely move. Anxiety is the most natural reaction with your current fears. We just do our best, positive or not. There are several apps that really do help with anxiety if you make a point of turning it into routine. Headspace and Calm are NHS-endorsed apps, but there are ones for mindfulness, meditation, whatever you need. I use YouTube videos by Progressive Hypnosis daily and they really have helped, especially Cure Anxiety. You just find what you feel comfortable with and commit to daily practice. It can make a huge difference (and I speak as someone with GAD and panic disorder since my teens).

I wish you all the best with the rest of your treatment xx

Just to offer some reassurance- I felt exactly the same and thought my lump hadn’t changed or had grown. I was also convinced it was spreading. At the half way point I had an ultrasound and it had only shrunk from 18mm to 15mm. My oncologist wasn’t worried at all - she said that the chemotherapy had primed the cells and she expected a big shrink when I switched chemo to docetaxel and herceptin. She was right and I had a complete response at surgery.

So please don’t think it’s not doing anything - second cycle is still early. Plus even if it wasn’t working they switch chemo drugs. And I was also told if they were remotely concerned at the mid cycle point they’d just move up my surgery.

I wasn’t offered any blood tests for tumour markers. It was all on the midway scan. So if they aren’t happy at that point they’ll just move up your surgery.

Sending you all the best