Feeling Overwhelmed

Hi Nirs Story

Welcome to the forum and I am sorry to hear that you were diagnosed with breast cancer.  It not unusual for the histology of a tumour to change after surgery.  I suggest that you ring your breast care nurse just to get clarification about what grade the tumour was which will hopefully set your mind at rest.

Wishing you the best of luck with whatever comes next for you.

Best wishes

Daisy53

Thank you so much Daisy for taking time to reply to my post. I have left a message for them now. Hopefully they will have a positive response 

Thanks

Unfortunately, it’s the pathology post op that gives a true grade . But I would defo ring to check it is grade 3.

You are entitled to a copy of your pathology report x 

Hi, 

thank you for sharing your story.

I have experienced something similar in that my original diagnosis was DCIS- grade 2 in one breast but since my MRI and surgery it became a more complicated/invasive (2 different!) cancers in both breasts.
I am now waiting on the outcome of the oncotype test to decide next steps and the results of the genetic test as well. 
I can see that the team can only go on what is in front of them and further tests will give them more information so the goalposts will move but it is so hard to stay positive when you’re waiting for results and life is on hold. 
I hope your BCN can support you through this. I just wanted to let you know you’re not on your own and I really hope that things get better for you very soon xx

Thank you for taking time to respond to my post.

I will ask for a copy of the report.

Thanks 

Thank you for sharing your experience and reassuring that I'm not alone in this journey (although I am literally because I don't have friends/family in the UK. I only have my 3 young sons). Hope your results comes with a favourable outcome. Waiting for results is the hardest like you said. I reckon I have to train my mind to accept that there are lots of uncertainties in this journey and I shouldn't lose hope and get overly worried.

Thanks 

Absolutely! You nailed it- the uncertainty is so hard. And I’m a planner so that just doesn’t suit me!

And sorry that you’re away from family and friends. That must be tough. 

Sending all best wishes for your treatment and recovery x

My worrys got even worse after I got hold of the pathology report.

Grade changed from 2 to 3 from Pre surgery scans/MRI to post surgery pathology report 

Size has changed from 15mm from Pre surgery scans/MRI to 19 mm post surgery pathology report 

Number of tumors increased from 1 to 2 Pre surgery scans/MRI to post surgery pathology report (second tumor is 2mm)

With all these negative changes, when I read about the final conclusion, it says "wide local excision mastectomy ...." where as I had a lumpectomy and it also said HER2 awaiting a repeat.

So when I inquired about it, BCN accepted there are cause for concern and she will double check and get back. Then the surgeon called me and said, mastectomy is a typo and HER 2 they have got the amended report and they have corrected everything in the system and that they have given me a wrong copy.

I have totally lost credibility over this histology report mainly because of the errors/negligence and also because of the changes compared to MRI and ultrasound. Something tells me, this report doesn't belong to me. On top of a cancer diagnosis, I now have to wonder if the pathology report is accurate. Utterly lost, dissapointed and confused. 

Any thoughts would be really helpful 

Ok I’d say you need to get the breast surgeon to tell you

whether it’s hormone positive

HER positive

do they have clear margins from the lumpectomy

was there anything in the nodes they took out

what was the oncotype score

Im no expert but I’d say once you know all that you know roughly where you stand and exactly what treatment you are facing!

I think you said they had clear margins and nodes where clear, that’s great news if I have that right

so sorry you feel alone, truthfully this is a lonely old journey but I think you’ll feel better when you know these answers and get a treatment plan

the grade and stage thing, and the size, it’s not unusual for those to change after the operation and biopsy. Mine did anyway but it didn’t actually change the treatment plan

good luck 

I was told that it’s the op that’s definitive . My MRI showed tumour was 15mm but it was 2cm. And also for the grade change , it can happen because biopsy only takes a tiny amount. They took 32g out of my boob ! 

its really good news that they have clear margins and no nodes . No more operations , you can focus on the next stage .

I’d ask for a copy of the revised report though .

Breast cancer treatment is tough , especially the mental side x