Was my mastectomy a mistake!!!

Thanks Gail, I think I will ask if they can send my pathology report to me too x

Hi Deb,

My son had a recurring brain tumour from the age of 2 until age 16 when we finally got the all clear (he just turned 18). As a family I feel like we have all been through so much and only just left it behind. With that in mind I have smiled through my diagnosis and only ever cried in the shower or in the middle of the night when they are all asleep. This group is the only place I can put how I really feel and I am so grateful for it. 
An Oncotype dx test happens in America. They look at the make up of the tumour and give it a recurrence score which helps decide if chemo is needed. I had to google it but I believe if it is in the nodes (mine isn’t) then the test isn’t done as chemo would be the recommendation. I would google it just incase that’s not right. My brain is like scrambled egg at the moment x

Hi Debs

           I got this booklet which explains everything. Also there’s Dreamthief on here who can provide links to Oncotype test etc. I’ve used Dreamthief for this so thanks Dreamthief. 

Glad to hear your son well CBRY but sorry you have to go through this. 

Lovely getting advice and hearing other people’s stories 

Take care

Gail

xxx

Hi Gail  /  & Deb / Dab       Best Parker voice - Ahem! You rang Ma'Lady 

This link will take you to further info on the Oncotype test and to see if your results fit the criteria for the test.

I'll try and add the 'Understanding Pathology Results' booklet below - Just click the coloured text 

https://community.macmillan.org.uk/cfs-file/__key/communityserver-discussions-components-files/38/bcc161_5F00_understanding_5F00_your_5F00_pathology_5F00_results_5F00_web.pdf

Hope this helps when you get your results Deb, G n' J

Hi claire, I'm so glad your son is well now but you have definitely been through it as a family. Big hugs.  I was told they didnt find anything in my nodes either thank goodness xx

Hi Dab

This virus has caused so much disruption , I am so sorry you have such angst ,as if it is not bad enough getting a cancer diagnosis at any time. I looked on your profile and as you are HER2+ you will need to have chemo to enable them to give you Herceptin , so the oncotype test won’t apply to you , chemo will always be offered and advised. There is also a newer drug perjeta but I am not familiar with that , I know it is normally given before surgery with chemo , not sure about after ? In terms of the mastectomy , you will only have been offered it if they felt that was the best way forward , even in these troubled times there seems to be many women having lumpectomies. As your lump was large they probably thought that would offer the best result for you. I had a 2cm lump and three failed lumpectomies , I ended up with a mastectomy and the pathology showed no trace left of cancer - so I truly didn’t need one , and was sad about losing my breast (I was 51) but have now come to terms with it and had a diep reconstruction last December. You have such a long way to go with your treatment , just try and think about the next step , chemo, and you will find you will slowly adjust. 

Very best wishes

jo x

Thank you Jo x

Thank you x

Hi CBRY,

The OncoType DX is now also done for those with 1-3 positive Nodes, I had 2 positive and had the OncoType Dx done.  

Hi. Has the advice re: OncoType been changed in light of Covid-19? I had tel results with surgeon yesterday 3 weeks post mastectomy and total node clearance. 5.5cm lobular cancer, 2 out of 25 lymph removed. ET positive, HER-2 negative. I specifically asked her about Oncotype and she said no because of lymph involvement. I was really hoping to have it done as the thought of chemotherapy really scares me, especially with the COVID situation and as my husband works in the “frontline” at the hospital which will also cause practical issues should I need to start it any time soon....

Would it be oncologist or surgeon who agrees to it being tested? 

Nicky