I had the Prosigna test after a lumpectomy and node biopsy which was clear in all 3 nodes removed. The Prosigna test came back as ‘high risk’ and the Oncologist has recommended chemotherapy as a preventative against a remote recurrence or secondary cancer. My concern is the amount of treatment he is suggesting and the fact that he can’t seem to give me any information on how much the risk will be reduced by having chemotherapy. Can I ask anybody on here who had a ‘high risk’ result what chemotherapy treatment, and how many cycles it led to. In addition did you get any information on how much it reduced the future risk. I’m just worried about what is being thrown at me with very little information on how the treatment plan was created and what benefit I will get by putting myself through this. Thanks.
I didn’t have the prosigna test but oncotype instead. My score was intermediate and I was told that chemo would decrease my recurrence score by 6.5 points. That was enough for me to go ahead with it. I had four sessions of T/C chemo three weeks apart. It wasn’t fun but was doable.
Ask your oncologist to use the Predict software devised by Addenbrookes Hospital, and to discuss the results with you. It’s software they can input all of the data about type of cancer, factors, treatments, etc., and will produce statistical data and charts giving the percentage impact on survival/chance of return of each type of treatment. I was not given this information until a year into my treatment and wish it had been discussed with me much earlier so that I could have been more involved in treatment decisions. In my case, the software showed that the single biggest impact on my chance of survival was the surgeries at 60%. Chemo and radiation only improved my chances of survival by 5%, and the ten years of estrogen blockers they wanted me to take would only have improved my chances by 1%. Every case is different, and every person must make the decisions with their medical team that is right for them. This case-specific data helps those discussions enormously.
I had PROSIGNA & it came back as intermediate risk
Chemo gave me a 4% benefit so did TC x 4 cycles
I also had a node with macromets (3mm) but no LVI or ECE
Chemo was hard but “doable”
I’m finding hormone treatment rough so am glad I did chemo
Letrozole / monthly ovarian suppression is hard !
I’m going to dig deeper into the benefit at 2, 5 7 yrs as not sure I can do this for years
Best of luck
Hi. These are excellent questions to ask. Not a lot of people ask. I heard recently that of 100 people who have chemo 80 of them never needed it. Of the 20 some people died anyway but not of cancer recurrence. It really is a very small amount of people who benefit. I watched something on bbc iplayer. Perhaps you could ask for a.l secomlnd opinion or maybe just another oncologist or maybe a bcn who would be happy to answer.your questions. I too struggle to find statistics online. It was my onco - radiographer / radiologist who told me the recurrence rate (at that time, June 2017) was around 35% which horrified me. I also asked the senior radiographer at the start why I was having it. She said belt and braces approach in other words just in case I was one of the unlucky ones. Best asvice I have is to keep on aski g, everyone everywhere until you get your answers. And well done on being brave enough to want to know xx
I asked my oncologist what % benefit I would get from chemo. He said the latest predictive tool they used gave a 1-2% extra help. Keeping in mind the damage that chemo can cause I said to him that I decided to “park” the chemo and he agreed with me. I had surgery to remove er+ve lump as well as some lymph nodes. Then 15 days of radiotherapy and 5 years of oestrogen inhibitor.
Thanks for this. I did the Predict tool online and discussed it with him as for me chemo only showed a 2% benefit at 5 years and was actually worse than no chemo at 10 years. He just dismissed it and said it wasn’t relevant as it only shows breast cancer recurrence and that the Prosigna meant I was at high risk of secondary cancer which would be incurable. Just felt like I was been pushed into a decision I wasn’t sure about.
Hi Daisy , it might help to talk this through with the Breast Cancer Now nurses on the helpline ? They are good at helping you think through difficult decisions .Best wishes Jill
0808 800 6000
Hi @daisy11 , wanted to jump in and share some thoughts. In a bit of a similar situation, although I’m in the US so we don’t have the Prosignia, but we do have Oncotype which I requested (even though my original oncologist was totally against it, given that she claimed it wasn’t “indicated” in premenopausal women hence I went for a second opinion elsewhere). My score came back as 12. Recurrence risk without chemo and doing just hormone/ovarian suppression is 2% and benefit of having chemo at 1%.
I’m a Stage 2, Grade 2, ER/PR+ HER- , (also 1 positive lymph node) and 49 years old and premenopausal.
Long story short, my new oncologist did a deep dive into my post-surgical pathology and recommended me as a strong candidate to be in a clinical study called the OFSET Trial (Determining the actual benefit of chemo vs no chemo specifically in premenopausal women with 1-3 node positive that have low Oncotype scores) Which I agreed to and was randomized into the non-chemo group. I will still have 25 treatments of radiation followed by ovarian suppression/hormone suppression meds. Unfortunately I don’t know if this trial is available in the UK.
I do trust my new oncologist’s guidance in this and I know she wouldn’t place me in a risky situation by being in this study and not having chemo. The first oncologist I saw wanted me to have 5 months of very intensive chemo, and did not give me any other options or advice. It felt like a slap in the face to be very blunt and honest. Especially with me having researched and educated myself about my pathology inside and out and also after receiving my Oncotype score.
Pardon my rambling on here, but I know how difficult a decision this is to be faced with and weighing the risks vs the benefits of chemo, particularly if the benefits for you are on the lower end.
All the very best to you as you go forward. 
We do have a similar trial here
OPTIMA
You can either end up in the control arm (so chemo ) or have your tumour tested using PROSIGNA and get chemo or just hormone treatment depending on the results
My understanding is these trials are trying to help future patients from being over treated
Thanks for sharing this. I’m post-menopausal and all my nodes were clear when removed. My Oncologist recommended chemo on the basis of the Prosigna score but like you I do feel railroaded into agreeing to it with no information on how much I will benefit from it. I’ve had 1 round of EC, which was originally part of a treatment plan of 3 x EC, followed by 9 x Taxol. However on the day I started the Oncologist told me he was changing it to 4 x EC followed by 12 x Taxol. Again he couldn’t give me a reason for the change other than if I could cope with it I should have more. I’m particularly concerned about the likelihood of neuropathy from the Taxol as I have other health issues myself and a complicated family medical history which he doesn’t seem to be interested in. I’m now having a CT scan in early January and if this is clear I think I’m going to tell him that I won’t have the Taxol. I’ll finish the EC, then have the radiotherapy and hormone treatment already planned. I just feel out of control of this at the moment and there are real side effects I could be left with on a permanent basis trying to treat something that might happen in future
@daisy11 Did your oncologist explain your pathology to you? Mine didn’t 
. My surgeon did a fairly good job of doing so during my post op appointment and I thought or hoped that my oncologist at the time (who I am no longer with) would kind of piggyback off of that and include my surgeon’s own recommendation for chemo and add that into her own ideas/consideration for a treatment plan for me. That wasn’t the case at all. She was dismissive, argumentative (she got very uncomfortable as soon as I mentioned the Oncotype test) and it was her way or nothing at all. There was no attempt to collaborate with me at all. She wanted to give me Doxorubicin which has known possible cardio toxicity and I have a heart rhythm problem, which she also dismissed and I could go on and on about how that appointment just fell apart at the seams. I knew in that moment that I had to go for a second opinion and that I was in a position where I had to start advocating really strongly for myself.
I feel for you so very much in all of this. I’m so glad you are able to have the CT soon.