have rung Nottingham myself today and there is appt. for me on 22nd June. At least I know that I'm "in the system" now.
Happier bunny now.
I'm glad the BCN is going to chase for you..it's awful watching the post every day, I was just the same. Couldn't focus on anything.
I had my op at the new QE BHam, which is ultra modern etc. But Nottingham is one of THE four BC centre of excellence, so you will be in good hands when the left and right get together that is!
If you'd like to pm me with your email address we could chat in more detail and I'm in touch with a great group all having or having had recons recently so we have a lot in common. I live alone too, so had to work out some ways of coping with things after the op. Someone stayed with me for the first 4 nights when I came home, then I coped on my own...but I'm a great one for planning!!
Hope you get some news back this week....
thanks for getting in touch. I'm in Preston, Lancs, been attending Lancaster and they've been great, really on the ball and everything happened so fast with them, but now I've been referred to Nottingham for Mx and DIEP, and everythings gone quiet! I've rung Lancaster this morning and they are going to chase it up and ring me back. I live alone and its just horrid getting home every night and still no letter, and no one there to talk to. You feel so helpless. If I just knew who I'd been referred to at Nottingham I could ring them myself. Just an acknowledgement would be good. Where did you have yours done?
Thanks again for your support xx
I was dx with widespread DCIS in august...the surgeon sent me for lots of other tests and a snb to check whether there was any spread. Thankfully there wasn't. The 31 days is an target for initial treatment..I guess my snb fell within this.
Once that was out of the way, I opted for a DIEP recon at the same time as my mx, so I was referred to another PS at a bigger hospital. I met the PS at the time of my referral and was told there would be a wait. I mentioned it was coming up to three months since dx and they said they would do me within the three months, so it was about a five week wait after that...but only because I took the initiative.
I would phone the BCN or the consultants sec, if you know the consultant. In my case I did so and found I'd been put in the non urgent pile by mistake as the sec had assumed something incorrectly. If I hadn't phoned I wouldn't have been seen until January at earliest, so that would have been five months. I'm not sure there is a three month target, I think they just feel that's a max reasonable delay after dx. Make sure you stress how long you have been waiting since your dx with DCIS because I'm sure it's not reasonable to wait indefinitely when you have a form of cancer.
At the end of the day, the recon holds things up a bit compared to a simple mx, but it's really worth it, you can get a very good result! If you have the mx then opt for a recon, you are much lower priority and have to wait a long time, plus it's two surgeries and more scarring. and the other good thing is that after a mx for dcis you don't need to have rads as you would after a WLE.
What area are you in, out of curiosity?
Best of luck, do let us know how you get on!
Thanks for your messages and comments up to now.
The first hospital was really on the ball and everything happened very quickly, its just not hearing from the referral hospital yet thats driving me nuts. I left a message for my BCN last week but not heard back from her either, I'l try again tomorrow!! I did find some info about 31 waiting days and also 62 days but I don't know which category I would come into because I've already started treatment, and I'm being referred from one surgeon to another.
THINK THERE IS SOMETHING ON HERE ABOUT THIS,IM SURE IV READ 30 DAYS,BUT CONTACT YOUR BCN WHO WILL FOLLOW UP THIS MATTER,I THINK ANYWAY,IT DOES SEEM A LONG TIME,AND WE ALL KNOW THE EMOTIONS WE GO THROUGH, IT DOESNT MATTER STAGES WE ALL HAVE COME HERE TO HELP EACH OTHER. TAKE CARE XXXX
I am afraid I don't know about the guidelines, but it does sound an awfully long time not to have heard anything. From my very limited understanding, I think DCIS is hard to spot so they might not have seen it all, and it can become invasive, but I don't think it would happen in such a short time scale. I had DCIS in December 2011, and the surgeon said he couldn't be sure, but predicted that mine would have turned invasive in 2 years (mine was high grade). Mine showed up on a mammogram as it formed a lump, which I don't think is always the case. I had one WLE without clear margins, then the option of another, but chose to go with MX, and thankfully that was the right choice as he said it had gone along the duct further than he thought. I haven't had reconstruction as my children are small and I didn't want to be out of action for them longer than I had to.
I would definitely be chasing things if I was you - it can't do any harm.
It's so tough isn't it, and your mind goes into overdrive, but once you have a date I am sure you will feel more reassured. I am not sure I have been much help, but thought I would reply as we had similar experiences.
I've had two WLE for DCIS but still not got clear margins so got to have Mx with immediate recon. I'm being referred to another hospital way out of my area for a free flap. That was 4 weeks ago and I've heard nothing. Does anyone know if there are waiting time guidlines. I fully appreciate that there are lots of people with more aggressive cancers, and quite rightly they should be given priority, but 4 weeks feels like a lifetime to me. When I was first diagnosed last November I was told that my DCIS was small and that it had been caught early (my first mammogram) but now they say its widespread and could have been there for years, I've read that after a while DCIS can change characteristics and become invasive so now I'm getting more anxious because its been cut into twice so is it still going to be contained. What are other peoples experiences please?