Stage and grade after surgery pathology

Hello mollysue 

I was originally told I was stage 1b and grade 2.

Post surgery I was told Stage 1b and grade 1 but with LVSI.

This meant I now required 27 days of adjunct radiotherapy.

I was told grade 2, possibly grade 3 before surgery and was not given a stage until after surgery. I was then told 1b and grade 3 and told I needed radiotherapy, but then when I met the oncologist 2 weeks later, I was told I had the POLE mutation so chose not to have the radiotherapy as the POLE seems to reduce the odds of recurrence. 

Hi mollysue

I was not specifically given a grade before the surgery. I was told stage 1-2. I was told adenocarcinoma. 

I was told no chemo. I was told unlikely any further treatment- if it was it would likely be brachytherapy. But that probably the surgery itself would be enough.

After surgery it was a mixed type of rare cancer. (carcinoma sarcoma) So although there were low grade cancer cells there were also some other grade cells that did not show on the scans or in the biopsy. There were also LVSI that also did not show on the scan. I was stage 1. 

So the post op gave more detail and that meant further treatment. I had chemo and external radiotherapy. 

The doctors can provisionally tell you a stage and grade but it is the post op pathology that gives the full details. Hopefully yours will stay the same or similar. 

I hope your results come back soon

Jane

Hi B74 

I also had the pole test. I was really crossing my fingers I had the pole mutation as it might have meant no radiotherapy for me I think. 

I didn't have it unfortunately but as I had LVSI would have probably had to have radiotherapy anyway.

Statistically most people stay the same. But most people who stay the same and don’t need treatment then tend to leave this group post histology results and move on (and so won’t reply) so replies here may not be representative of the true picture. 

Hello

I’m one of those people who MarmiteFan was talking about!  I was told my cancer was Grade 1, Stage 1a before my surgery, but told that this could change as a result of the histology.   However, nothing changed, I was still Grade 1, Stage 1a and had no further treatment.  I have regular check-ups and an annual CT scan, but that’s all.

I consider myself very fortunate and hope all will be good for you, too.

Pippa xx

I was originally told stage 1, grade 2 which was exactly what it was after surgery.  Unfortunately I had P53 mutation and was told the best treatment would be chemotherapy and afterwards brachytherapy.  I had a rare reaction to the chemo and only had one out of the 4 planned treatments.  The brachytherapy was so much easier than I expected.

It seems that each and everyone of us have roughly the same grade although the stages change and the adjuvant treatments also vary.

Your team of specialists will go through your results and suggest what they think is the best treatment for your cancer but you have the right to say yes or no.  It’s not an easy decision but you know what’s best for you.

Wishing you the best x

Hi mollysue,

I am one of the rare people who still lurk after no further treatment and that was 7 years ago now. Before the op I was Stage 1A Grade 2 and that stayed the same. I had check ups for a year and was told I would have yearly phone calls, but they never materialised!! I really had the impression they were not worried about me and I gradually forgot to worry, too. Time is a great healer!!

Hi Mollysue, I stayed the same stage 1A grade 1 and was put on the patient initiative follow up, I just contact them if I have any p and they will see me. They write to me once a year, this is for 5 years and then I guess I will be discharged.

Hi KT89

I had extensive LVSI but with the POLE mutation no radiotherapy. I had the planning scan and tattoos but then it was decided it wasn’t necessary.

Linda