Test results :( yet another curve ball

Artferret

OK got test results from surgery today and am feeling hmmm, well, gutted.Grade 2, 1.6cm in size bigger than we thought it would be and low grade pre-cancer margin around it. Back to surgery Sept 13 as the margin was too close. Chemo was discussed but fortunately i have dodged that bullet. Tamoxifen will be started at some point. Radiation is still on the table depending on whether the margin is going to be a clear 2mm. If clear i may be eligible for this radiotherapy multi gene assay trial to determine whether i need radiation treatment or not. If margin comes back close again all that flies out the window. My husband's radical prostatectomy is early Sept before i go back in and our youngest daughter who complained of pain on her left side, is off for an ultrasound for cyst(s) on her left ovary next week. She lost her right ovary last year due to a cyst the size of a grapefruit. She's 21. I'm just..I don't know...feeling stunned and over whelmed by everything.

Artferret

Also what happens at the medical and radiation oncology appointments? i have them coming up on Monday. 

Zoffiel

Hi @Artferret

Sorry to hear everything is piling up.

The oncology appointments may be a non event if you don't have all the info on your status because you need more surgery. Mind you, I'm only guessing there and you have to meet them at some stage anyway 

The oncs will talk to you about what sort of treatments they think are appropriate and what the statistics say about how effective those treatments may be.

Medical oncologists are the ones who manage all the medical stuff directly connected with your cancer. They will talk to you about the tamoxifen and explain how it works and what may be appropriate if, for some reason, it doesn't agree with you (ask about that) if you were having chemo, the med onc would be your doctor through that process. BTW, your GP can prescribe the tamoxifen in the future.

The rad onc only looks after you if you have radiotherapy. I'm guessing this will be the time to discuss your involvement in the trial.

Don't be surprised if you have to go back and see them after your next surgery. Good luck with it all. Marg

Artferret

Thanks @Zoffiel much appreciated.

Romla

@Artferret My diagnosis back in March was very much same - lumpectomy and sentinel node biopsy - 1.4 cm grade 2 not clear margin so back for widening the margin surgery. Had microstasis in 1 node . Node removed .Understand you are stunned but mitigate it by getting as much information as you can .Am not sure if you have the My Journey kit from BCNA but well worth getting it as will help clarify lots including providing questions you can ask the oncs. I saw the radio onc first as no chemo required - he planned my radiotherapy sessions which went thru in a blur as you go daily mon- fri - the actual sessions themselves don't take long but lot of time travelling   and looking for parks plus times were different each day.There was a breast nurse available and saw her and the onc once a week to monitor progress . Biggest appointment was actually the planning session at the start where your zaps are mapped out by very tiny tattoosThe medical onc I saw next for hormone therapy as am er+ - they also deal with chemo which I did not have but that would have been before radiotherapy if I had had it.The medical onc organised tests for bone density as my drug thins bones and some other blood test can't remember what for and then gave me a script- In your case as you are premenopausal you will be taking Tamoxifen and it builds bones but yes there are side effects. Re side effects with hormone therapy the strong message the ladies on here gave me is stick with it and the side effects lessen as the body adapts plus they also provided heaps of tips to deal with them. The oncs usually work as part of a team ie surgeon , radio and medical oncs - on your treatment. Hope this helps - happy to answer any thing else you'd like to know that I can. Also there are resources you can download on the bcna site for more information - TBH the most frightening bit for me was after surgery and radio ended and I did not have so much frantic activity then I fell in a bit of a hole until some practical friends pushed me into looking outwards and connecting with other bc ladies  - it made me realise there is a lot of us , there is a lot of support out there and most importantly life goes on . I understand your trepidation I felt the same at the outset - think it's more a background thing now but doubtless will come to the fore each time I visit the onc in charge.

primek

Oh who wouldn't be. Geez...you guys could really use a break. So hoping your daughter is okay. Hubbie flies through surgery and this time clear margins. Yeah on path results and treatment plan options thus far. Here's to a better September for you. Kath x

Brenda5

Take a list of questions for your radiology and oncology appointments. I actually handed over my list to my oncologist and we got right into the nitty gritty straight away. He put my mind at ease over a lot of things. I had chemo but radiology said there was more harm in my instance than good so I didn't have it. 

socoda

Hey @Artferret , if the oncologist goes too fast with statistics etc tell them to slow down - you need to be able to absorb what is being said. My McGrath nurse attended the appointment and played scribe so that I had percentages etc recorded and I could look at them later. That has come in very handy as there are things that I have learnt since then and I have referred back to my percentages for info. Wishing you all the best. Xx

Artferret

Thanks ladies. I'm feeling a lot calmer now that a couple of days have gone by and my blood pressure has come down. I keep adding to my questions as I think of new ones cos if I don't writ it down it doesn't exist! Forgot to say, my lymph node was clear which was one bit of good news.

primek

Great news on the lymph nodes! Here's hoping more good news is coming your way.