no followup after radiotherapy

youngatheart

I saw my consultant quite regularly, and every 3/4 months for a few years then every year until year 5. I would call your BCN again on Monday and ask for a definite appointment. 

Thank you I will do that. 

hello youngatheart,

I finished radiotherapy in August last year and then saw a breast care nurse who answered some questions, and gave me lots of leaflets, I was told I would be starting on Letrozole as I am post menapausal. These I had from my GP with a prescription from the oncologist.so I have been on them now for five months following radiotherapy. So you could legitimately ask if you are due any treatment.

) I had an appointment in October with a specialist nurse who did spend some time with me talking over problems and sending recommendations to lymphodoema nurses as I had some cording and  another nurse from a unit dealing with anxiety, that I might benefit from some help with these things.  I would have liked to take advantage of the offers but transport was impossible so I said that I would manage o.k. without.

I was badly overlooked for starting radiotherapy last year and it has taught me that you have to keep pestering if you need information,even though we all hate doing it.  I am no expert but I think you should by now have been told , as I was, that you will now  be put back into the charge of your G.P. until any further meetings are needed..usually 12 months after surgery.( your case notes are usually sent to the G.P as an update.) Perhaps no decision has been made yet in your case

I hope this is some use and that you can enjoy the break from going to hospitals.

lots of love and good luck

Hi  young at heart,

i had an appointment with consultant oncologist at end of rads and then a month later with consultant surgeon-he examined me and because all healing well and no concerns my next appointment is in May exactly 1 year after diagnosis with surgeon again which will include mammogram.

i have contacted BC nurse if I have any worries. I would say that you are a priority if you have a query or want to see a ny care professional ask as it’s understandable to want monitoring 

️ x

Hi youngatheart, the phrase 'postcode lottery' unfortunately springs to mind but maybe I'm being cynical....

In my case, when I had my first (and only so far) appointment with the oncologist in December, I was told I'd see him again in 4 months and, sure enough, an appointment came through for April. In the meantime I have started and finished rads. Part way through I had a radiology review, where I was told that they like people to be followed up 6-8 weeks after, but if I'm ok to wait till April and have no issues then that's fine. I'm happy with that so far, and from previous experience with my Anastrozole prescription, I know that the oncology nursing team are quick to respond. I also have the Mount Vernon (where I had rads) team's number and have been told I can go back to see nurses there if I'm worried about any post rads reactions. 

I think you should definitely query the lack of follow up with the bc nurse. I know by April I will want to discuss both the radiotherapy and the Anastrozole, as well as a DEXA scan that I had mid-January, even if I have no 'issues' as such.

Good luck! HFxx

Thank you HappyFeet1 I also had DEXA scan when I called up for results 3 weeks later they hadn't arrived! they also said no news is good news and they would call if there was a problem. I haven't heard anything since. I don't have any real problems but do feel as if I have just been abandoned now 

I start my rads on the 12th Feb and have been told I will see the consultant once I've started. My consultant for radiotherapy was also my Oncology consultant - handy he does both.

When I got my results for my lumpectomy and SN biopsy from my surgeon I was given follow up appoiments before I left.  One for June to see the surgeon to make sure boob is ok after radiotherapy (have small boobs so didn't know if I'd have a big dent after surgery. I didn't but sometimes it can happen afterwards with the radiotherapy).  I also got appointment for my first mammogram in December and final check up with surgeon in January next year!

I can also ring my BC Nurse anytime if I'm worried. In fact she sorted my radiotherapy appointment out in the end as the Registrar I saw on my ladt Oncology appointment was a bit slacking in forwarding the info onto them to pass me over but alls well now.

Hi Youngatheart,

Practice probably differs on this from trust to trust.  In my area, you saw the oncologist for a sort of final sign-off around 8 weeks after rads finished.  This was to give the breast enough time to settle a bit.  Then you are booked in to the long-term patient clinic on 1st and subsequent anniversaries of diagnosis. 

So for me this meant that I was diagnosed in early Dec 17, started chemo a couple of weeks later (saw onc regularly during chemo and surgeon for op prep), surgery early May, rads Jun to mid-July, final oncologist appt mid-Sept, first clinic appt and anniversary mammo Dec.  Worth checking with the BCN if you  have been missed for a post-treatment check. 

Best wishes,

Linda xx

I have finally had a date for my post radiotherapy check. 25th Feb! I finished rads 16th Nov.  I understand that I've had no real problems but I do feel really abandoned. And underarm and ribs are  now hurting and boob is tender. I understand this can be normal after rads but it's getting worse not better.

I agree that's pretty rubbish youngatheart, 3 and a half months is a long gap. I thought mine was long at 2 and a half! I'm going to see my GP tomorrow or Wednesday re phased return to work and also to ask if any suggestions for ongoing nipple pain - only when something touches it but it's ridiculously sore when it does. I think it's more to do with the dye injections for the sentinel node biopsy, which was done while I was under the anaesthetic so I hadn't realised was into the nipple, ugh!! I think the rads have made it worse. I haven't got the rib pain (yet!) but know it's a possible long term effect. 

Glad you have a date, even if it should have been much sooner. You have plenty of time to draw up a whole page of questions! HFxx