Hello - I write this in the hope of helping someone else who may be on the verge of making a decision about their treatment. I encourage you to stop for enough time to think and FULLY explore your options. Ask questions. Ask them again. And then ask them again. Please do not let family, friends, professionals rush you into a decision. It is YOUR life and YOU will be left with any residual physical challenges to deal with, not them. Ask questions MULTIPLE times. Ask the same question to MULTIPLE people separately. Articles on the web warn me about hair loss, curls v straight, new colour v normal colour, thick v finer etc. I signed my consent form ONLY because my specialist had said to me "your hair WILL come back". I asked them to clarify this as I mentioned that in the MacMillan literature regarding Taxotere/Docetaxel it suggests it "almost always come back", which implies in some cases hair does not, and I'd also seen some article on the web. I was clearly told it WILL come back. When a specialist makes a statement like that as an answer to a direct question it is reasonable for a layperson to assume it will come back to full thickness/density as the Dr did not say "it will come back.....but you may have significantly less than you do now". It has not. It is over 1 year since I finished chemo and I am still wearing a head covering when out in public. My eyebrows have 75% LESS hair than they did pre chemo. The entire crown of my head has at least 50% LESS hair than it did. I should not have signed the form and I should have refused treatment. I have been told recently that if I had refused the chemo offered then I would not have had to have Taxotere/Docetaxel as part of my treatment....they would have substituted Taxol/Paclitaxel instead even though it is not the main licensing protocol that oncologists follow for the combination of drugs I had. I may even have been able to have smaller doses every week instead of every 3 weeks. Taxotere/Docetaxel is the main culprit for permanent hair damage. I did not care about losing my hair...well I did but I accepted it as I believed it would be temporary. I cared about it growing back to full thickness. I am disappointed that I was deceived, especially when I asked the question multiple times. I know some people will say focus on the fact that I am still alive. Others will say I was not deliberately deceived...I don't think I was. However I do think many specialists think "oh here is the hair question again" and do not listen to what the patient is actually asking. I am not an Oncologist. I am a temporary guest in the part of the world that these specialists permanently inhabit and they are the experts and I should be able to trust the answers provided. If it is not true or if there is a risk that it is not true then don't say it. Don't say something that contradicts the warnings on the consent form that gives me enough hope to sign the consent form. I would not wish this on anyone, so if in doubt, I encourage you to pause and ask MULTIPLE specialists. I did not want comfort or a shoulder to cry on when diagnosed I wanted accurate facts upon which to make a significant decision. Despite the care and compassion of my medical team I feel hugely let down. I was not looking for a guarantee for a cure for cancer. I was looking for a guarantee that my hair would come back to full thickness, so that whether my time is short or long, I could be me and that those in my life that do not know what I have been facing would never find out. Colour is easy change, Style is easy to change. Nothing is easy to change if your hair is ruined. I have bought the highest quality wigs available for ridiculous amounts of money and they still look unnatural so do not wear them. I recently saw an article on line (google The Telegraph alopecia and it is from Sept 2015, published when I had completed 90% of my treatment). If that had been published before my treatment I would have refused the drugs offered and requested alternatives. Apologies if anyone is offended by this but this is my experience and perspective and it may not resonate with you, but it may with other people who are about to make a potentially life altering choice. To everyone taking their initial steps I wish you every success with the decisions you make and your treatment.
