We have been waiting for todays appointment for ages!
Today we left early to get though the piles of traffic into the city of London to see Professor Tutt. We had heard of him through the internet and Professor Harris as being the leading oncologist with an interest in triple negative breast cancer. As mentioned before he is heading up research that focuses solely on this strain of disease.
He is a lovely man and very thorough. He discussed my history and every detail into what I have had and am having in the way of treatment. We discussed the immunotherapy with him too. He did an examination and said I am in perfect health and wouldn’t know that I have canSer. I know it sucks right! He was very honest with information he gave us and very frank with what can be done. The overall feeling was a good one. He did say there is a very negative spin on triple negative breast cancer probably from the name but it doesn’t always have to be recurrent and doesn’t always end in metastasising. In fact there is good treatment that knocks it out sometimes better than standard breast cancer.
He said looking at what I have been treated with, infact he called it using the ‘retrospectoscope’ he thinks the treatment I have had is all great. Every chemo I have been given was the right choice. In terms of what to do now. He says, ‘If it aint broke don’t fix it.’ So carry on as I am. I was always going to do that! As usual he wasn’t offay with immunotherapy but did keep asking me if I get any side effects from the injections. He seemed to think that the vaccines could cause many changes and create more canSer. But I haven’t had any side effects and I have felt just dandy! I am pleased we have touched base with him and he has said that if there is anything else I may need or want direction with he could help.
He did give me some insight to what he knows about triple negative. He says there are some similarities between triple neg and ovarian canSer and in how melanoma functions is simlar to triple neg. This all seems very interesting but I so want to hear they are close to a cure. Surely they must be close to a cure!
As usual the conversation always comes up as to how the disease is being dealt with at the mo but in the future if the disease should not be contained by capecitibine there are many other routes I can go down in terms of standard treatment. Pete asked outright if any of his patients have been cured from having standard treatments. He said, ‘yes’ there have been the odd few that the canSer hasn’t returned. That’s good enough for me.. But it does always fill me with dread. I am starting to dislike hearing, ‘better quality of life for as long as possible’.
He said that triple negative needs a positive spin on it to make it seem less negative. He says we need to focus on the positives. I told him that the name of my facebook page is ‘Making triple negative a positive’. He gave me a thumbs up! He seemed genuinely delighted that we are raising money for his research.
He said that Professor Harris, my oncologist is a big deal in canSer research and that Professor Middleton is really great for trials in the Oxford hospital. He said that there are still many routes to go down should the canSer start to grow again and also that he knows of people that have been on capecitabine for about 20 cycles, that’s nearly two years. I guess there is still hope then. But there is always hope. As hope is all we have.
I have just got back and been getting lots of bracelets packaged up and posted up. I still have a few hundred left but they have been allocated to friends and volunteers. I am so impatient.. we have already reaised £1385 to date and I am really chuffed with that but I want to get more! I know There is no rush but seeing that total totting up is such an incentive. I want more! I sound like Oliver Twist..
Overall I feel that today was success. Prof Tutt said he would happily help me in the future with anything needed such as getting on trials I need to as well as seeking out certain treatment. What a nice man!