Post Treatment Scan

Hi,

Can’t answer your question 100% but I can tell you my experience.

was diagnosed may 19 with grade 2 micropapillary which had spread to 3 nodes. I had surgery chemotherapy and radiotherapy The only scan I ever had has been the ultrasound at diagnosis, well apart from the planning ct before rads.

i was told it was because they were sure the cancer hadn’t spread - Hmmm.... they didn’t know it had spread to the lymph nodes until they operated as the ultrasound 12 days earlier was clear!

i would love a scan to make sure, It would really put my mind at rest I even thought of paying for one!

as for the rads, I finished beginning December and see the oncologist in March, however I’m on 6 monthly check for 3 yrs followed with annual checks for 10yrs! with my surgeon. 

Hi , I totally agree it’s very confusing (like much of this ‘journey’) as to who gets which scans. If it’s any reassurance, I’m the same as you and in that I’ve only had ultrasound at initial referral and a CT rads planning scan. Nothing since. And I’d also wondered a while ago about paying for one. It would be so reassuring to know that nothing suspicious was lurking. But I am guessing that, if there’s no other evidence, it’s assumed that all is well. Scans are expensive and possibly carry some risks? - eg exposure to radiation? - so maybe only done when deemed essential? I don’t know, probably also an element of postcode lottery, may depend on the policies of individual trusts. May also depend on the initial diagnosis, grade of cancer, size? I’m going to tag because he often seems to know this type of thing! 

Re your discomfort, I’d definitely phone the breast clinic to ask for an examination. I developed post rads lympheodema in bad boob which means it’s bigger than the other, despite being scooped out and zapped. Can feel like engorgement  when you’re breastfeeding and also makes it feel warmer. I was referred to a lympheodema nurse who was very helpful and on her recommendation ive taken up Nordic walking. I love it and it’s definitely made a difference. My arm is also better as a result, I don’t have lympheodema in it but it can feel stiff and uncomfortable, as well as still having some restriction of movement (eg can’t do or undo my bra at the back anymore!)

Hope it helps to know we’re also confused! And I think ongoing worry/ fear is part of the package unfortunately. But we are not alone. Gentle hugs, HFxx

Hi ,

Thanks for the 'tag' HappyFeet1

Sorry your 'goodbye' appt was dealt with abruptly with little opportunity to ask any questions, not too uncommon in this scenario 

Post cancer back-up can vary between heath authority areas - some offer a 'Recovery Package' but that wouldn't normally include any other scans; only holistic which can include treatment or therapy for ongoing side effects etc.

You just get set free from the NHS and put back onto the routine mammogram appointments.  Some find this a bit of a tough call after what can be up to a year of regular treatments and feel they have lost their safety net.

You can find further info about post breast cancer treatment care clicking here.

If you are struggling with ongoing discomfort issues can you contact your breast care nurse I'm wondering if this could be scar tissue related - are you taking any of the hormonal therapy tablets like Tamoxifen or Letrozole for example ?

Hope this is of some help, take care, G n' J

Hello Dreamthief - I’m sorry I’ve only just picked your comments up as not been at all well.Thank you for taking the time to respond.

I do have quite a large area of hard scar tissue at the site of my scar and yes I am on Letrozole. Can the Letrozole cause breast soreness and tenderness. My breast feels like muscles the day after you’ve done rigorous exercise for first time - really sore and tender and burning.

I’m waiting for a call from breast nurse but won’t be until next week now the weekends here I expect.

So sorry ruthie2 for your response - I’m so sorry its taken me so long to respond - I’ve been really poorly for a few days and couldn’t push myself to bother with anything or anyone .  I’ve also thought about paying for a scan - but if I’m honest I’d want a full body scan because of my family history I’m so paranoid about it being elsewhere now .

When I had my op to remove the cancer from my breast they took biopsies from my first 3 lymph nodes- fortunately they were negative.

I'm on Letrozole for 5 years and annual mammograms - my daughter is also having annual mammograms now as well as she is on border line of high risk. I feel so guilty she’s only 40, single mum with two young boys.

i really hope you get a better consultation than I did at your Oncologist appointment in March.

Take care.

Happyfeet1 - I definitely owe you an apology for not responding sooner - you were kind enough to respond to my original post. Unfortunately I’ve been really unwell for a few days and couldn’t be bothered with anything or anyone - sorry .

I believe treatments have a lot to do with postcodes - very unfair. I’m waiting for breast nurse to call me back re the possibility of Lympheodema - think it won’t be until after the weekend now. I didn’t know you could get Lymphodema in the breast so thank you for that information. 

Hi , please don't apologise, I am often off-site for several days or just 'lurking' - reading but not posting. If you're around my age and remember 'Love Story' - famous phrase 'love means never having to say you're sorry' - well that sort of applies to this site I think, in that we are all allowed to rant and rave, reveal our worries and troubles, post or not post. 

Hope the breast nurse calls you promptly on Monday - suspect you're right and you probably won't get a call over the weekend. 

Love and hugs, HFxx