I’ve been told I won’t benefit from chemotherapy as my oncotype score is 10 however I will need radiotherapy. The plan has always been to have hormone therapy afterwards too. I feel very mixed about this news which is about version 5 of the treatment plan. I’m meeting my oncologist shortly so I’d welcome any advice on questions to ask. My first question is to make sure that my BRCA status was considered in the oncotype test.
First and foremost I’m very pleased the oncotype is low, as distant recurrence is such a big worry for us all that the lower the better. I am grateful this is more positive than expected and I know I should be jumping for joy at avoiding chemo. However, a few things are getting in the way mentally. Firstly, I’ve previously experienced being ecstatic at dodging a big treatment and then later regretting it (originally I had DCIS and avoided a mastectomy but 2 years later I got diagnosed with invasive breast cancer which an earlier mastectomy might have avoided). Secondly, I’ve spent a month preparing myself for chemo. Chemotherapy had always been ‘very unlikely’ treatment for me according to my medical team. But when I returned for my mastectomy results, the analysis found a bigger 2cm invasive cancer (same ER+ HER2- grade 2 type as the 4mm removed in the previous lumpectomy). The increased size and being early 40s meant they thought chemotherapy could be needed. It was a shock but I’d come to accept it as the nurse explained it’d give me reassurance that any rogue cells had been killed off. It’s quite hard to instantly let go of that rationale now.
I’m also quite scared about having radiotherapy. Over the last few years I’ve started to feel panicky when I feel physically constrained and I’m worried about panicking during the treatment (as I did once during a biopsy). I’ve now had 3 surgeries on the same breast and after fearing a mastectomy for years, I’ve finally ended up with an implant reconstruction I like. And I just want to let it heal fully and not batter it some more, with the risk of altering the shape and further damaging the skin. But I know it needs doing to kill any cells left behind.
Hi @rainbowcat , I had 3 invasive, grade 2 tumours (24mm, 15mm and 10mm), clear lymph nodes, and my oncotype score was 18. Although I was in the 50 and younger category, I was advised that I wouldn’t benefit from chemotherapy. I had a mastectomy and DIEP reconstruction and was advised before surgery that adjuvant chemotherapy would be very likely and so like you, I had mentally prepared for chemo… When I was advised I wouldn’t benefit, I was on the one hand overjoyed, but on the other, I was a bit panicked that I wasn’t throwing enough at it! My oncologist was very thorough however, and explained that not only does the oncotype predict distant recurrence, it also indicates whether your particular cancer would actually respond to chemotherapy or not. Your very low score of 10 indicates a very low risk of recurrence and very low response as well , so I would be reassured by that I’m sure your oncologist will explain that too. I assume your nodes were clear? That will also be part of any decision making.
I’m afraid I don’t have experience of the BRCA gene, but I would assume it would have no bearing on whether you would benefit from chemo? But that’s definitely something to discuss with your oncologist.
I also hope that you might find it reassuring to hear that I know several people who had radio with implants, and have had no issues at all - so I wish you lots of luck with that too. I really hope you get all the answers you need soon. Sending hugs and lots of love xx
Thank you so much for replying @diddy1 and sharing with me that you too felt that mixture of pleased and panicked too. I’ll wait then to hear how my oncologist describes it and from what you’ve said, it sounds like it’ll help reassure me that it is the right choice. The reason I think may BRCA be relevant is (as I understand it) our BRCA genes send instructions to produce protein that acts as a tumor suppressor for cancer cells. The protein helps repair damage to DNA that could turn into cancer. As that doesn’t work fully in me, I’ve questions about the risk of any rogue cancer cells in my bloodstream attaching themselves somewhere and my body not responding sufficiently to prevent them developing into another tumor. However, I presume hormone therapy is also being offered to intervene to prevent any cancer cells being able to use estrogen to fuel itself to grow in this way. I’ll definitely ask as my understanding of the biology and science might be off. So much to learn!
And it is super reassuring to hear there are women having radiotherapy with implants and not experiencing issues. I read the side effects sometimes and my heart just sinks imagining all those things. However it’s a good reminder that it depends on the individual so Thank you again - sendings hugs back xx
@rainbowcat it’s hard enough going through breast cancer treatment without having to process a BRCA diagnosis, so I really feel for you and I would be exactly the same. I like to know EVERYTHING, so I can only imagine how tough it is for you to have to wade through the science of it all…!
I was actually put on letrozole to control my tumours once I had my full diagnosis, as there was a significant wait for my Diep surgery. I actually had a partial response and my main tumour shrunk a couple of mm’s - so the hormone treatment does work! Your oncologist will know if you had any LVI - and whether you did or not, the hormone treatment will be there to mop up any nasties that may have escaped.
It’s also important to remember that on forums like this, you generally hear of things going wrong/ issues that people have and so you’re unlikely to read of positive instances with regard to implants and radiotherapy. The risks are obviously there, but as you say, it’s all very individual.
I hope your oncologist is understanding and is as thorough as mine I’m sure you’ll feel much better once you’re onto the next stage. Take care and keep us posted xxx
3 weeks of radiotherapy is being offered due to my age and having multifocal cancer
BUT
the benefit of radiotherapy to me now can’t be quantified (I’ve asked if it’s likely to be of a greater benefit to me if I save it to treat any future local/regional recurrence)
the cost is likely to be needing my reconstruction redone as they seem quite confident the implant will not like radiotherapy
Now it’s up to me whether or not I want it and I’m unsure what to do.
Glad you’re reassured about the chemo
Hopefully someone else will give you some advice about radiotherapy… I wasn’t offered it, as I had a lot of skin removed with my mastectomy and replaced with my tummy skin and tissue.
I’m sorry that you’ve been told it could be risky - a very difficult decision to make…
Wishing you all the best and I really hope you’re happy with whatever decision you make.
Take care xxx
Sorry for the tardy response @diddy1. After A LOT of thought I decided not to have radiotherapy. The oncologist gave me more answers I’d asked for and felt it was reasonable not to have it. Instead we’ve started my 10 years of hormone therapy. I was very relieved to make a decision and feel it was the right one for me in this situation! Thanks for all your good wishes Xx
So grateful for this post because I’m in a very similar boat. Grade 2 IDC as well as some DCIS and had a single mastectomy with diep 5 weeks ago. My treatment plan changed from “only radiation” to “only chemo” and then it was decided I didn’t need anything as my oncotype score was 14. I’d finally mentally prepared myself for chemo knowing it would help so I was left feeling panicked and like you, that I was not throwing enough at it!
My oncologist wasn’t great (pretty awful actually, but story for another day) for reassuring me about anything. I did ask about the oncotype score and my BRCA status too - I have had young female deaths in my family (decades ago with cause of death unknown) and I was told it had to be evidenced cancer deaths for me to get a genetic test done for this. I still don’t know if BRCA link changes the test score in any way so it does make me nervous they have based future treatment on a few unknowns.
I’m just wondering why you were offered radiation in the first place - did you have any positive lymph nodes?
Hi @zara_xo, Lovely to hear that the thread helped. It’s such a shock knowing chemo is being considered and you get your head halfway round it then the oncotype score says something good yet contrary to what you’ve been preparing yourself for. I felt like “‘arrrrggghhh!!! I should be happy and I am but I’m also confused and worried’.
I’m really sorry to hear your oncologist wasn’t helpful in this situation because that is an important professional relationship for us to feel reassured. Can you ask to see someone else? If they didn’t show you, I’d ask to see a copy of your oncotype report and ask them to explain it in detail. I found one of the graphs really useful to understand why chemo wouldn’t benefit me. The oncologist told me that probably about 10 years ago, before they used oncotype, they’d have given me chemo and now she showed me on the chart they know that would be over-treating me because my score shows there would be no more benefit to having chemo + hormone therapy, compared to having hormone therapy alone. I think I under-estimated just how important hormone therapy is as a treatment. Like chemo it is a systemic treatment to reduce our risk of recurrence and it’ll also help reduce the risk of a new primary breast ER+ cancer in the other breast (particularly important to me with BRCA2 alteration).
I did ask quite a lot of questions about how the oncotype score is calculated to help reassure me and I was told it is based on looking at the chances of 100 ladies with my type of cancer having a recurrence - and I presume other characteristics were included in the analysis like having a BRCA2 alteration although I never entirely got that confirmed by the oncologist. Given that only around 5-10% of breast cancers are genetic, I find that there’s often gaps in knowledge about how BRCA and other genetic alterations fit into cancer treatments.
I was offered radiation despite not meeting the big 3 criteria (positive nodes, grade 3 or 5cm+ tumours) because I’m early 40s, I’ve already had two breast cancers and the latest one has been multi-focal (I ended up with 5 tumours removed in total).
Re the genetic test, it’s tough. It’s tough both not knowing if there’s a genetic element if you suspect there could be, and at the same time it’s tough knowing there is because of all the implications of other cancer risks beyond the breast cancer we’re dealing with now. I wasn’t offered a genetic test the first time I had a cancer diagnosis because I didn’t qualify for one. However, the second time I was offered it even though I still didn’t have a ‘typical’ strong family history but the 2 diagnosis’ in 2 years at a young age made me qualify. If I had thought about it more first time around (I didn’t, just thought I was unlucky!), I’d have paid for my own genetic test because in my situation I’d probably have avoided at least one surgery by knowing I needed to go straight to mastectomy. If you feel strongly that you need to know then you could consider that route of paying for your own test. However I’d speak to a genetic counsellor about the implications of taking the test first. And for now remember, you’ve massively reduced your risk by having the mastectomy and I hope you are healing really well x
I’m sure your oncologist will explain that too. I assume your nodes were clear? That will also be part of any decision making.
xx
Thank you again - sendings hugs back xx
xxx