Lobular breast cancer and genomic profiling

i had  an oncodx test and won the crap lotto of saying chemo may be beneficial.while others had low scores.

keeping good thoughts for u

Hi Sevenoakslass, sorry to hear of your diagnosis. Having the test helps the medical team see what’s the best treatment plan for you. Whilst the results can take a while it’s good for them to have the full picture. My biopsy stage gave my medical team enough info as I was triple positive so chemo was on the cards for me, along with targeted treatment and hormone tablets. After my surgery it was checked again and my plan stayed the same. They were also able to work out the best radiotherapy treatment too. 
Sometimes plans can change once all the info is collected.

Wishing you all the best.

Hugs from cuffcake x x x x x

Hi, this is the thing I'm most nervous of. I've so good at coping with LICAP surgery and recovery, and had in my head all along that the next steps were radio and tamoxifen - so to have chemo as a possible now is blowing my mind. I'm in the last 7 days of waiting as it was 3-4 week turnaround for testing. Driving myself mad...

Hi, thanks for your reply. I wasn't expecting the further testing on my tumor, once it was out I was ready and braced for radio and then tamoxifen which have both been on the table from day 1.

The chemo possibly landing back as an option is freaking me out. Its such a hard balance as the care and level of detail has been amazing, and I feel lucky (if you can say that) no stone is being left unturned, but I just wasn't expecting this - I'd never heard of genomic profile/molecular testing before so it was a shock thinking I was just going in for my full pathology / post surgery feedback and this all opening up. I guess we just have to be resilient to anything happening, its been a massive life lesson. Thanks so much x

i am on the same page as you. freaked out, its on the table. i bought a wig, still steeling myself hugs. 

I had the same. I was always told it was surgery, small chance of radiotherapy and then hormone therapy. Chemotherapy was never mentioned until I got my results post surgery so it threw me for a bit of a loop. My lymph nodes were clear but because of my age, they said I was a grey area and they wanted to explore whether I would benefit from chemo. My oncotype came back as 21 and was told no benefit (although the booklet they gave me said the cut off was 16 for those under 50). I'm not really sure how I feel about it all - I was under the impression there would be regular checks, at least for the first year, but I've got one more check up with the surgeon to check the implant and that's it. I was told I'd get an appointment with an oncologist but that's been taken off the table now too. I'm really nervous about my score but I guess I just need to hope they know what they are doing!

The same for me. Told surjury then radiotherapy.

Had oncogene testing came back at 28 and told that I had a fifteen percentage chance of reoccurrence without chemotherapy.

I had bilateral lobular bc.

one lymph node positive.

when they mentioned chemotherapy I was in bits.

had my first session yesterday not too bad.

I have de decided to accept whatever happens and hope that by next year it will all be over except for the 10 years of pills!!!
good luck

Hi, yes, the same, I wasn't expecting this post surgery, not sure which testing they're using for mine but will ask this week. Also not been given any booklet or info on this so will ask about that too. If you're still nervous I would explain to the and just double check?

How long did your results take to come back and then for them to make the decision on chemo / type of chemo? Ddid you start he course of it quickly?

Good do hear you found it ok too.

I'm sure I'm overthinking this but by Wednesday my results will be 4 weeks in the waiting...and such a big difference between radio, where I'll be done within a month (and I'm ready and prepared for) and chemo which I assume would be months and a whole different story with a big impact.

I'll be 10 years of tamoxifen too - they said 'if' chemo the would be 1st, then radio, then tamoxifen. Thanks so much for your note too. Very helpful to see how they explained it to you x

Hi Sevenoakslass

I had the Oncotype test done, but I’m not exactly sure of the length of time it took for the results to come back. 

I had 2 positive lymph nodes when I had my first surgery, so that was followed up with an axillary clearance. At my review meeting 2 weeks after that I was told that as no further cancer had been found in the nodes removed I was eligible for the Oncotype test. I don’t know if they had already sent it off then, or not until it had been discussed with me. Either way, they  booked me in for another review 3 weeks later for the results.

I was lucky that my score was only 8 so just radiotherapy, but it was a very long 3 weeks. I would have hated not knowing when to expect to hear. I think with 4 weeks I’d be on the phone to the breast care nurses to ask if they could look into it for me 

Good luck