Radiotherapy Issue - The NHS Is Very Stress Inducing At The Moment

I am so sorry your wife and you are going though this, it is stressful enough at 'normal' times, let alone with all this going on.  

You are both certainly on the roller coaster of a ride, full of so many up's and down's.

What I write will totally depend on your wife diagnosis as the treatment I will refer to is not suitable for 'everyone'.  I believe the main criteria is that it is to be 'one' area of concern.  At the moment your wife will be but onto 'letrozole' to hold and even reduce the BC, then the operation - lumpectomy, followed by results for 'clear margins', followed by healing and then on to daily radiotherapy treatment over the course of 3 or 4 weeks.

My thoughts, ask you Consultant to refer you to a NHS Hospital that are doing TAGIT IORT - this is combined operation, consisting of lumpectomy followed immediately with 'internal' radiotherapy - all done.  Of course this has the concerns of clear margins, etc.

If you wife fits the criteria for TAGIT IORT - although it will most likely be at a hospital outside your area, if it was me knowing what I know, I would push for this treatment.  Sadly, they don't openly offer this treatment (I believe it is political - Radiologists fearing this type of operation is taking their jobs from them). 

This treatment 'is' available on the NHS - however, with how things are currently, I don't know 'if' operations are still going ahead.  I would think they would be, it is just so hard to get referred for this operation. 

There is the option of going Private, I don't know if your wife has private health insurance or if you are in a position to pay. 

I had this operation/treatment 'just' before it was approved by NICE and I can honestly say I have not regretted this one tiny bit, it was all out of my comfort zone - traveling, staying away overnight, etc - but, I regret nothing. Both mentally and physically this form of treatment was a God send to me.  
I just wished the bodies that be would openly tell all patients about this treatment and that it is available - albeit at a limited number of hospitals.  I only stumbled upon this combined treatment whilst looking into 'left side radiotherapy'.   

You could even contact my consultant and speak with him about TAGIT IORT - I have no hesitation in recommending these and more so, I know that you could speak to him and tell him all your concerns and he will give you honest advice of what and what isn't going on with regard to operations taking place in the NHS hospitals and Privately during this current time. I cannot praise this gentleman enough, I honestly can't - absolutely amazing. I just wished anyone that needed this operation could have this treatment, I really do. I went from being told my operation would be in 4 weeks, to a change of plan, to 6-8 weeks to.... speaking to my Consultant, tests within a week, operation a week later - literally 2 weeks 'all done' - because of this my lovely mum still has no idea :))))))  perfect :)  

I know this might not be suitable for your wife, at least if you look into it you will feel better knowing you are covering all options.

If I can help at all please feel free to message me.

Wishing you and your wife all the very best - it is mine field, but, one you get on the right track and your mind settled all will fall into place for your wife, it will.  At the moment your mind is on overdrive with all that is going on.

TARGIT IORT is done during surgery.  You could ask if it's possible at other hospital,  though you ideally want the most up to  date machine.  Women who have adjuvant chemo wait about 7 months a there'DS a healing time from surgery,  chemo for c.5 months and then recovery from that. 

Hi Dedalus, sorry you’re both having more stress re timing of the radiotherapy, such horrible times. If it helps at all, I think it’s not uncommon even without COVID, for people to wait more than 6 weeks after a lumpectomy. It’s a very anxious time and you just want it all done as ‘ideally’ as possible, so any delays are tortuous.

In my case, I had expected to start rads 6 weeks after and had it all mapped out in my mind, but I didn’t actually see the oncologist till then. Christmas came along too, so I ended up with my first session 10 weeks after my op. I’ve read threads in the past where others also had longer gaps than expected. In the end I was actually kind of glad to have had longer to heal. I was still very tender at 6 weeks post op, I didn’t have much pain as such but developed a large haematoma which took a while to resolve itself, so I think rads would have been pretty uncomfortable at an earlier stage. I know the current situation is different because the delay is due to knock on effects from COVID, but I wanted to try to reassure you in some measure, that even in ‘good times’ the timings do seem to vary. 

I seem to have missed when your wife’s lumpectomy is or was, or is she still waiting for a date? And has she started on the letrozole? Wishing you both as well as you can be in these anxious times, love and hugs, HFxx

Hi HF1

It was good for us to get up to your reassuring post this morning.  It really helped.

We were focused on this 6 weeks maximum wait for radiotherapy because quite a lot of the research papers provided stats to say it was less effective in terms of recurrence after that duration.  However, last night I found another piece of research that very interestingly showed that after 120 days (17+ weeks) there was not one incidence of metastatic disease in that group.  There seemed to be a protection in having the radiotherapy later in that context.

My wife's lumpectomy is next Friday, thankfully.  Initially, we were told it could be a 3-month wait, we assume due to COVID.  Out of the blue, we got a phone call saying the surgery would be in a week's time.  

We are waiting for a prescription for Letrozole in the post.  It may arrive today.  However, with the surgery only being 6 days away we don't know if it is worth taking.  Although letrozole may be a little more effective, my wife has a preference for Tamoxifen, because she wants to protect her bones, etc, In fact, she is still considering not taking anything, hence the concern of getting the radiotherapy sooner rather than later.  The PREDICT nomogram (based on Tamoxifen) at her pre-surgery pathology indicates that with taking the H.T. there is only a small statistical benefit for O.S.  and hopefully the radiotherapy on its own (which is excluded in the PREDICT stats) would help to prevent a recurrence.  Added to this she also had a hysterectomy and oophorectomy and hopes that this will also contribute. She is trying to balance risk with quality of life, which as you know is difficult to calculate and achieve.  All these considerations are of course before the post-surgery pathology report.

Best wishes

D x