I am interested to know the guidelines for gene testing for high grade dcis. I am having an operation soon (lumpectomy) and have been told this will be followed with radiotherapy for 5 days. All this assuming nothing else is found during the operation. Is it reasonable to think an oncotype DX test would be a good idea before committing to radiotherapy? I know it’s not routinely offered to dcis patients. My surgeon is not the easiest to talk to. I worry about the harms caused by radiotherapy if it’s not absolutely essential.
1 Like
Hi @charlie55
I do get your concerns but I would wait until you have had the lumpectomy
See what the results are you will be given appointment then for oncologist who can discuss results and whether you need any other testing , one step at a time.
Good luck X
1 Like
Hi @charlie55 I’m not sure what the guidelines are, sorry, but I have had the Oncotype DX test for DCIS Grade 2. It was a long wait to get the results back but the benefit for me was knowing the likelihood of distant recurrence and, more immediately, if my particular cancer would benefit from chemotherapy. There was no mention either in the test results or by the oncologist of this test relating to radiotherapy. The only impact it had on my radiotherapy treatment is that we waited until the Oncotype results were back before booking it in, due to chemo needing to come before radio.
I was told I’d need radiotherapy early on in the process, and as I had one dodgy margin I also needed a boost to that area.
Hope this helps a little. But I’ve found the whole treatment process (bar surgery) has been a balancing act between risks and benefits and I’m now in the same situation with regards to endocrine therapy where I’m weighing up the pros and cons. It’s horrible as there’s not always a clear-cut answer and there are risks, sometimes big ones, with all the treatment options as well as potential risks with not having the treatment.
1 Like
I would hazard a guess that genomic testing is unlikely for DCIS. I got knocked back for testing despite having IDC grade 1 with grade 2 and 3 DCIS also, that was Her 2+. I was told by my surgeon that the oncologist didnt want to test it as the risk was perceived as low, so I’ve never met an oncologist- wish I had, I’d of had plenty to ask.
1 Like
Thanks. I wasn’t aware chemo was offered for dcis. I hope you are coping ok and on the road to recovery.
Hi charlie55
Thanks for posting asking about an Oncotype DX testing for DCIS.
These tests are known as genomic assays and look at groups of genes found in breast cancer. They help identify how likely the cancer is to return (recurrence) so who is most likely to benefit from treatments such as chemotherapy and sometimes radiotherapy.
Oncotype DX testing is routinely used in the NHS to help determine if chemotherapy will be suitable for certain people with invasive primary breast cancer. Although there is a specific Oncotype DX test for people with DCIS who have had a lumpectomy, to determine the benefit of radiotherapy, as you say it’s not offered routinely in the NHS as there is less evidence available for its use. You can still ask your treatment team about testing in your situation. Some people consider paying privately for testing. However, if you don’t feel able to talk to your surgeon, it may help to talk to your breast care nurse about this in the first instance.
You say that you are worried about possible harms of radiotherapy. It’s important to talk through any concerns you have about your treatment with your team. As @charlottebee says it may help to have a discussion with the oncologist once you have the results from your surgery.
We offer a range of free supportive services which you may be interested in.
Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to more support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, If you have hearing or speech difficulties prefix our number with 18001 and the call will go through Relay UK. Our helpline has access to telephone interpreters if language translation is required.
If you would prefer one of our nurses to call you. To do this please complete this form ticking the box agreeing to a call back.
Our usual opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday.
Out of hours you can leave a message and we will call you back when we next open.
Best wishes
Louise
Breast Care Nurse
Please read the disclaimer Full details on how we collect and use your data can be found in our Privacy Policy
As we are unable to monitor for further replies, this thread will now be closed. If you have any additional questions or would like to provide feedback, please start a new thread, call our helpline, email us or request a call back.