Dr Emma Pennery responds to the announcement that a new test called Oncotype DX, which can predict how beneficial chemotherapy will be for some patients, will be available on the NHS. This infomation may be useful to those who are having to make decisions about chemotherapy.
If you would like to see the full statement, Please click here .
I am delighted that the Oncotype DX type is going to be available on the NHS. I have my Oncologist Appointment this Tuesday 10Feb. I don’t think it is going to be available free until 1st April so I am gutted about that. The current cost is £2,500, which is such a lot of money. I had a lumpectomy on 6 January. IDC Grade 3, lymph node negative, Er+. So i am borderline chemo. Does anyone know what the risks would be in delaying the start of treatment, whether that is chemo or radiotherapy, for 3 months after surgery? I have been told it is a minimum of 2 months anyway, so does another month make a difference? I have been reading alot of posts regarding chemo, and it just sounds so debilitating, it is going to be a tough decision.
Hi Carmen and Sorbet. Thank you so much for your comments and sharing your experiences and decisions. It is always good to hear from other women in similar situations and know that I am not alone. I had my oncology appointment yesterday and i was very nervous to the build up, feeling sick and not being able to eat. I was very lucky as my oncologist went through the adjuvant online, and the extra benefit of having chemo, which was only 2% for me. Already at 92% 10 year positive prognosis. He did not push me towards chemo, so for me it was an easy decision to make. I really felt it wasn’t worth the possible extra benefit of 2% for all the awful side effects. He didn’t even think it was worth having the Oncotype DX test. As you say everyone is different, but I feel very happy with the decision I have made and feel as if a huge weight has been lifted from my shoulders. I will go for 19 sessions of radiotherapy plus obviously the tablets for 5 years. I have 3 children (1 of which is still dependent on me) who are luckily old enough to chat things through with me, and they all support my decision, and of course my husband. It will be beneficial to all when the Oncotype DX is available from 1st April and will help all women in a similar position make a more confident decision, which can only be a good thing. I wish you all well with your treatment and recovery. This forum is a life line. xx
Hi Nicole,I requested the Oncotype DX test at my hospital I attend ,and was told it is not currently available . Yet,I am reading on this forum that some hospitals already offer it. Are we all in a post code lottery ? What can I do? With kind regards.
I was just the same as you. I had a lumpectomy and sentinel node biopsy which showed an 11mm lump which was removed with clear margins and no node involvement. I too have private health care and as a precaution, and because I am ER+ and there was a possibility of also being Her+, my oncologist ordered the oncotypeDX testing. Again my results took 3 weeks to come back but boy am I glad that I was able to have the test. My results showed a very high score of 78 which meant that my treatment was changed from radiotherapy and hormone tablets to FEC-T 6 sessions. I have just (yesterday) had my third FEC and will commence weekly sessions of ‘T’ in 21 days. My oncologist has decided to lower the dose of the T and spread it out over more frequent sessions to be able to let my body tolerate it better. However on speaking with the chemo nurses yesterday they said that this regime has been very encouraging and people having this regime have had much less side effects. Hair starts to return on T and generally you do not feel nauseous. Apparently the main problems are with tiredness and neuropathy but spread out over 12 weeks this is much more minimal. How happy and reassured do I feel!!
We can do this and we are on our way to a brighter future with lots more happy memories to make Lets kick ass xx
I had my results from WLE and Lymph nodes and have been offered this if er/her test comes back +
Just been reading and looks interesting
Hi all, I’ve just had the results of my Endopredict test come back high and thus have now been told I will need to have chemo… previously my oncologist was erring towards not recommending it for me so I am very happy that I had the test and can be sure chemo is the right decision for me. I had a lumpectomy in early Feb with sentinel nodes removed (micronet found in one). I’m nervous about the chemo but surrounded by lots of wonderful friends and family who are helping me through it, so one step at a time. Very glad to hear that these type of test will soon be offered on the NHS as I found it so helpful.
I had a WLE and SNB at the end of March and lymph nodes and margins were clear. I was diagnosed at Grade 3 and stage 2a and now having the Oncotype test to determine the benefits of Chemo for me, did anyone else have this test? I’m wondering how long it takes to have results?
I had this test, it took about 3 weeks to get the test results back.
It basically goes as follows:
0-18 no benefit to having chemotherapy.
31 + Benefits to having chemotherapy
19-30 - Grey area, gut instinct and Oncologists experience. Mine came back as 29, so now 4 cycles in to FEC-T. I did ask if I needed full 6 cycles as evidence in U.S for some only have 4 cycles.
Good luck and hope for a low score!
Welshlady, I am thinking that as you are node positive you will be looking at chemo regardless of oncotyping…
So sorry to hear Welshlady, it is always the waiting around…
I found that reading the research and having a plan in place for each potential “score” helped me in with the waiting, could that help?
Hi welshlady. I had a mastectomy and diep reconstruction six weeks ago. I am waiting for oncologist appointment. Originally surgeon spoke of radiotherapy and hormone therapy but since pathology report there has been a lot of possible chemotherapy. I know at the last team meeting they spoke about me and mentioned the oncto test?. It is quite hard waiting for the appointment with the oncologist as i know it will be another wait to get test results. My tumour was 2.7mm but "multifocal a grade 2. No lymph nodes involved. I am recovering well from mastectomy and am so glad all the cancer has gone. Hope you get some results soon as i know its hard waiting.
I like the idea of planning for all possible score results. Good idea agarside.
The oncotype test is not used for hormone therapy, it is used to give an idea if chemotherapy will be of benefit. It is for er+ tumours and based on a number of genetic markers which give an individual result.
0-19 chemotherapy would not be of benefit
31 and above, chemotherapy would be of benefit.
Inbetween… grey area.
To add, I had it.
I was er+ with no lymph involvement, tumour G3.
My score came back as 29. I had in my head, anything over 25 I would have the chemo.