Oncotype Test

No experience with the onco trial (sorry) but I am also mid-40s and was blindsided by needing chemo ahead of surgery when I thought I would be done in a couple of months with lumpectomy and rads.

I just wanted to say that I am really glad I got chemo, It is tough but I feel like I have been given everything possible to increase my long-term survival chances. My surgeon said they wanted to throw everything at me due to my age and I am so glad they did.

Chemo is tough, but I don't want any What Ifs. You get through it and get your life back.

Hello LBHall, you'll find lots of support here. It is common for initial plans to change but is still a shock when it happens. I was originally told I'd just need a lumpectomy and radiotherapy but the tumour turned out to be quite a bit larger than first expected, plus there was cancer found in one of three lymph nodes so the plan changed and chemo was recommended. Initially the nurse said that an Oncotype test would be done but the recommendation for chemo was made following the op & histology report so I didn't have the test in the end. It was explained that the chemo was to ensure that any stray cancer cells that may have got past the lymph nodes are killed off, so this wasn't something that I was going to turn down, but it is a personal decision. It must be difficult for you if your husband doesn't agree with the oncologist's recommendation - has he explained why he doesn't agree, and would the oncotype test result make a difference to his view do you think? I'm just over half way through my chemo now and it hasn't been as bad as I thought it would be (I'm in my 50's). I know about the oncotype test to determine the risk of recurrence but haven't heard of a trial but hopefully someone here will be able to provide more info for you about this.

Thank you both for getting in touch. 

I don’t think I made myself very clear. My husband is all for the oncotype test and I am but I am unsure whether I want chemo irrespective of what the results are but my husband can’t see why I would have it if the test shows I don’t need & that’s what he would disagree with, my decision to have chemo anyway. 

The trial is the same as the oncotype test it must just be a trial because it’s new to our NHS authority.  That was how my oncologist worded it. As it is, I’ve heard from my oncologist today who has said that my NHS Authority has given permission for a certain criteria of women to have the oncotype test without the need of going into the trial so she is starting the process today so I shouldn’t have to wait so long for results etc. 

I am confused by it because my consultant was so for me having chemo but my oncologist said that my consultant is very ‘old school’ and not always open to new ideas/ways. 

Thank you both so much xx

Hello LBHall

I was not part of a trial and can only share my own experience of how I made my treatment decisions. I had HER2+ and slightly ER+ large lump of 5.2cm at the outset [November 2020].  with one node positive at biopsy. I had chemo and this down-staged my disease so much [I got a complete clearance of these cancers by  the chemo alone] that there was no cancer left in the tissues they took at lumpectiomy and when the sample of nodes [6} were removed. Two of the 6 taken had previously been cancerous but were fibrosed, so nothing nasty was known to be left in these areas.

I have gone on to have radiotherapy [19 sessions] as this is very effective at preventing local recurrence. I also get herceptin and pertuzumab every three weeks to counteract the HER2+  and bisphosphenate every six months to prevent this coming back in bones, if any stray cells escaped from the lymph nodes affected earlier. I also take letrozole to counteract the ER+ aspect.

My onc ran all my data through an NHS algorythm called NHS Predict [this takes account of cell receptors, size of lump, age etc]. This  showed the % extra chance of survival for me with each of these treatments. With surgery alone it was 56% chance of being alive in 10 years. However, although each of the extras only gives a bit more chance, with all of the things I have listed above it takes my chances up to 79%. So for me it was a no-brainer to have everything they can give me. The pertuzumab is not included in the prediction as it is too new but is adds extra chances also.

Make sure that you get every bit of information that you can on the implications for you, before you make any decision to reject chemo or anything else for that matter. It is your life.

I wanted to make sure that I have done everything I possibly can to give me the best chance of sticking around. Treatment is only for a while and the chemo is doable.

Good luck making the right decision.

WallyDug

I was diagnosed with Stage 2 ER+ve, HER2 -ve, with one lymph node affected, back in July. I had the Oncotype test, which returned a score of 14, which I thought would mean no chemo. Turns out that the test is not as reliable for pre-menopausal women (me), so I signed up for the Optima trial (which uses another genetic test) hoping I’d end up not having chemo. I am now 7 days post first EC session. So, all I can suggest is that you clarify with your oncologist that the Oncotype result will be accurate enough for you. Chemo is horrible - the most awful insurance premium but if it’s going to give you the best outcome…

Hi Crwys, 

Thank you so much for getting back to me, you sound like the mirror image of me.  What you’ve said is very useful and I will ask my Oncologist when I see her in 3-4 weeks for my results. 

I hope the side effects of chemo settle down for you and I wish you a good recovery xx

Hi I was originally diagnosed on 23/06/21 with 9mm oestrogen positive grade 1 ductal, HER2 negative, ultrasound on nodes looked good. I opted for a lumpectomy as small in size. Fast forward to my results on 24/08/21, which I felt really positive about, I was told that initial diagnosis was completely different to what they found and that I had 21 mm lobular oestrogen positive HER2 positive breast cancer with 2 out of 4 nodes positive. The only positive was that the margins were clear luckily as I didn’t have an MRI before because they were sure of what it was. Had an MRI post operation which was clear apart from 2 more swollen lymph nodes and I also found out that my HER2 was actually negative.

I have now had a full auxiliary clearance due to positive nodes but have developed a seroma so I’ve been having it drained so was talking to the BCN about the trial the surgeon mentioned and she said it was probably the Optima trial, she said basically 50% of the participants will just get chemo and the other 50% will have oncotype dx test to see whether their recurrence score is high in which case they would be given chemotherapy. I have my results for auxiliary clearance on 09/11/21 so hopefully I’ll find out more then, but to be honest as it had already gone to my lymph nodes as weird as it may sound I think I’d rather take my chances with chemo and give myself the best possible chance.

It is such a shock when things change it takes a while to get your head around it but you will get there, I was going away for a weekend 3 weeks after I had my results in August so it gave me something else to think about. 

Sending you huge hugs

Diane xx

Hi LBHall - I think that's what I was trying to get at, I was really glad I had chemo, so if you want it irrespective of onco results, then hopefully you'll be able to do that. I didn't have onco test as they wanted to shrink my tumour before surgery so that was that. But I was really glad I was offered it as I wanted to do everything possible. I was never given the choice, but if I'd had the onco test and they said not much benefit, I would have still wanted chemo for whatever small benefit it would provide. Mind you, I don't know if you're able to have chemo in those circumstances? 

Hope all that makes sense!