Just finished radiotherapy

Hi all
After months of endless waiting since a routine mammogram on 31st January picked up a 4mm tumour; i had a lumpectomy + sentinel lymph node biopsy on 31st May. To my astonishment, as the documents i had been given clearly said a SLNB was carried out when they DIDN’T think the cancer had sprwad to the lymph nodes (?), and two separate doctors who had examined me + carried out ultrasounds had also said they didnt bekieve it had spread, when i had my results appointment, the surgeon said that the 4mm tumour was ‘hiding’ an 8mm tumour behibd it(that still doesnt make sense to me), and they also discovered 17mm DCIS! She then advised they had removed the tumours + DCIS + had sufficient clearance BUT the lymph nodes they had removed were cancerous! I was totally gobsmacked az the worse case scenario for me was that they wouldnt have had sufficient clearance + i would have to have a 2nd operation. Well 2 or so weeks later my oncotype score came back showing no benefit in chemo, thank god, with a 14% chance of recurrance in 9 years. That was at the beginning of July but i still had to wait a further 2 months to start radiotherapy, which had now trupled from 5 to 15 days due to the lymph nodes. I finally started my radiotherapy on 7th September + finished on 27th September, just days before my 58th birthday this Monday. I did suffer a nasty burn-like reaction, which prevented me sleeping properly but with the help of the hydro gel + specisl self-adhesive sponge-like dressings the oncology team gave to me, in just over a week, its cleared up really well. Im still waiting for the fatigue, which may or may not come, but after almost 8 months, thankfully im almost over the worse.

What i cant get my head around, + what no-one can tell me, is how the mammogram + ultrasounds completely missed the 8mm tumour, 17mm DCIS + lymph nodes? Obviously i eill be attending my annual mammogram from June next year, for 5 years, but i ferl as though i have little faith in them as although the did pick up the tiny. Tumour, i just don’t understand how they missed everything else! Like many other sufferers, i honestly don’t feel i will ever be free of this!
Sorry for stupidly long post!

1 Like

Hello there @queenbee0210

Sorry you’re in this situation and well done for getting through your treatment. The stage you are at now is the one where you will be going over it all , trying to make sense of everything and process so it’s good that you are trying to get answers

It’s routine to do sentinel node biopsy even when they think your nodes are clear just in case and I’m sure you will have agreed to them doing this when you signed your consent form for surgery - even if you can’t remember .

You were obviously in shock when you got your results and I think you should be contacting your BCN and getting them to go through it with you again. Have a pen and paper so you can write it all down. Make sure you write down everything you want to ask so you don’t forget . I think you need to do this if you are going to get your confidence in your team and the screening process back .
If you don’t have one already ask for a copy of your Pathology report and if you’re not happy with the explanation then you could try ringing the helpline.

I know some tumours are easier to visualise on mammogram then others and even though it was smaller the one in front might have been easier to see because of its position and could have confused the issue a bit . I don’t have the knowledge to offer any explanation re the DCIS .

It does knock your confidence - I can’t say my situation was the same as yours , yet one of two Radiologists thought my post - procedure mammogram was clear when it wasn’t . In my case the remaining 6 mm of tumour was then removed with clear margins by lumpectomy and had been hiding in haematoma caused by the initial procedure which was done under X Ray guidance as part of a trial. .

Take care
Joanne

1 Like

Hi Joanne
Thank you so much for your reply + advice. I have asked just about every professional for an explanation but they just say not everythung shows up on imaging - hmmmm so if i hadnt had that 4mm tumour then where would i have been in 3 years time?
I only have a copy of the oncotype score report, not the pathology report - i have had letters from my surgeon confirming exactly what they found during surgery but i guess it wouldnt hurt to ask for a copy - thank yiu for the suggestion.
A friend of mine had 12mm DCIS which was detected on her first ever mammogram, which i guess if why i cant understand how they completely missed mine + what would have happened if id bot had the tiny tumour detected.

Guess I’ll probably never get a cincrete answer but i will definitely ask for a copy of my pathology report.

Thanks again

Bryony

1 Like

Hi @queenbee it could be something to do with the density of your breasts. If you have a lot of breast tissue it is a lot more difficult to spot cancers on mammograms because, as tumours are made of breast tissue, both healthy and cancerous tissue show up as grey. Fat tissue shows up as white.

There are four categories of breast density: A-D.
Cat A = predominantly fatty tissue
Cat B = Scattered fibroglandular density
Cat C = Heterogeneously dense
Cat D = Extremely dense.

At my first anniversary mammogram in July, the radiographer showed me my scans and explained all of this. My breast are A, sliding into B and she said it was a surprise I’d had BC. Well, I did so :woman_shrugging:. It’s obvious, I guess, the more breast tissue you have, the more likely it is that some of it will go rogue.

It might be worth asking the surgeon what density your breasts are as that may offer an explanation.

1 Like

Thank you - this has never been explsined to me! I am larger breasted but even so, no-one has said that is the reason for the other tumour not bring picked up!

To be honest after 8 months of being messed about + months of unexplained delays, i have had enough!

2 Likes

I do understand your frustration @queenbee0210 I also like to know what the details are myself and agitated for my own histology report after surgery. It took several months and a lot of phoning to get it. Breast density isn’t on that, by the way.

You don’t have to necessarily be big breasted to have dense breasts. As mentioned, I was told (after a year) that I was late A/early B on the density chart yet I am a 36GG. Just a suggestion to ask as it is common knowledge that cancer is more difficult to detect in dense breasts, whatever their size.

Sometimes I think the professionals don’t realise how important these things are for us. There’s nothing to be lost by telling them that you’ve lost some trust in the process. I hope you get the answers you seek.

1 Like

Thats interesting + thank you.so much for your reply - im just so fed up at the moment!

1 Like

I am sorry ypu are going through this worry. I have just had my 3rd breast.cancer diagnosis. The last time i had a clear mammogram 2 months later after my dog kept sniffing me i was diagnosed with a 19mm cancer. I fought for mri and had one which found a tumour in my other breast but did not again show on the mammogram i dont have much faith in them to be honest. I have been told it looks like my lymph nodes are clear but wont know for sure until after my surgery on the 24th of October.
I had also been taking anastrozle but obviously didn’t work as this er8 again xx

1 Like

Such a worrying time for you + your family - sending love for as good a prognosis as possible - your dog is amazing!!

Now i have even less faith in mammograms!

Wishing you all the best for your surgery in 2 week’s time x

Meant to.ask did you have the oncotype score test?

Not last time. They are considering it this time