This sounds very interesting, Susieone.
Have you discussed the pros and cons with your BCN? I would want to be able to weigh up the benefits against any possible long-term disadvantages to me personally. Research is so necessary and giving something back to others is very important, but don't take part in something if it is going to give you extra anxiety and leave you worrying about any longer term effects. Don't do anything out of a sense of duty.
If there is no likelihood of complications for you personally, well, have fun!
Whatever you do, make sure it's your own decision and you're comfortable with it.
got a letter today seeing the oncologist on 1st October so I should soon be starting treatment very relieved to hear something
Dear Lilacmoon to be honest I am just going with the flow now, at least I have made them aware that I was concerned about the wait so I suppose I can do no more other than wait, it's almost like your life is on hold, not being able to make any plans for a few days away in case I get a phone call, I was told that I will be able to get the sessions at the same time every day so at least it's easier to plan the days, just want it over with. xx
Bilbo hope all goes well with your treatment. it appears that the hospital I have to have treatment is busy it is not the same one as I had surgery in and everything has been fine up to being referred to oncology. The oncotype score is in the grey area of needing chemo or not, it is up to oncologist, I am off for a dexa scan today at the same hospital, might ask why there is such a wait xxx
Fezzy that does seem a long time compared to most people - have they said why it is taking so long? I don’t know what your oncotype score means - have you researched possibilities for that score - does it depend on your age? The waiting and uncertainty for next step is always hard - if they told you at start the procedure / waiting time it would help, I hope you hear soon and appointment is not 4 weeks - is your hospital known for having long waiting times? The only good possibility is that maybe they don’t think you are an urgent case but that doesn’t help you when you are in the waiting period does it. Sending you hugs - take care xx
just a phone call back from bcn, apparently they are chasing up my oncology appointment she said it can take up to 4 weeks to get an appointment that will be nearly 10 weeks post surgery does this seem a long time to wait to hear what treatment you will be having, I was given a oncotype dx score of 22 so still don't know for sure if it will be chemo or radiotherapy or both
thank you Lilacmoon I am still waiting for a reply but I will definitely ring back on Monday if I don't hear anything today. I will be post op 8 weeks on Wednesday got my oncotype dx results 2 weeks ago and was told then I should hear about radiotherapy within 10 days
thank you for your reply bibi I have been in contact with my bcn today and left a message so fingers crossed I will hear something soon. it does seem that we are always waiting for appointments or results which doesn't help with the anxiety
Hi Fezzy - I had WLE on 26th July , had planning appointment last week (6weeks later) and starting rads next Monday. Have you tried getting in contact with your oncologist secretary to chase it up? I would have thought you should have appointment by now according to the guidelines I have read.
Hope you hear soon - the waiting for appointments can be quite wearing can’t it?
I am still waiting after 8 weeks since wle surgery for an appointment to start radiotherapy. I have been given anastrozole which I have taking for 2 weeks (so far only mild side effects) just wondering how long is usual before it starts. must admit I am starting to get anxious now. Fezzy 52