Please help going out of my mind

Hi 

I had a mastectomy on the19th dec and reconstruction when back to the hospital last Tuesday for my results and in a round about way he doctor not the one that did the surgery said they had got all the cancer but was waiting for the last test to come back to see if I needed chemotherapy the test is called oncotype DX but I am not sure what to do now is it just a waiting game for a letter for a appointment to come or do I ring the hospital next Tuesday to see what’s going on there has been nothing to say anything about aftercare just feel that I am in the dark and starting to get worried that I will be forgotten about surly it can’t just be left this way 

thank you 

Suzanne

  • Hi Suzanne ()

    Thanks for getting in touch with us at what sounds like a difficult time for you.

    It’s understandable why you’re feeling as if you’re going out of your mind. Waiting for test results to know what happens next can cause increase anxiety.

    It’s good news that the cancer has been removed, but not so good that you’re still left with unanswered questions.

    Some people worry that while you’re waiting to start treatment that a cancer will spread. But it’s important to remember that your cancer has been removed. If further treatment is recommended it’s to decrease the chances of the cancer coming back in the future, not now. Doctors often refer to this as an “added insurance policy” or a “belt and braces approach”.

    The Oncotype DX test is one part of the overall picture doctors need to help them to decide whether you would benefit from having chemotherapy after your surgery.

    The test is done on a small amount of breast cancer tissue removed during your surgery. The tissue is sent to a laboratory in the USA, where the test is carried out.

    The results are given separately from your pathology report and are sent to your specialist within 10–14 days. 

    You should have been given information about when you would expect to go back and see your breast team for your results and your treatment plan.

    Rather than wait for a letter and worry about being forgotten you can call your breast care nurse/ key worker.

    They will be able to let you know when they expect your results to be available. And they should be able to organise an appointment to see your specialist.

    If you’re having difficulty contacting your nurse direct, then you can call your consultant’s secretary for a return appointment.

    If you live in England and are still having difficulty talking to someone you can contact the hospital Patient and Advice and Liaison Service(PALS)

    If you find that the waiting is affecting how you’re able to function, it’s important that you talk to someone about how this is affecting you. Your GP can offer you support.

    Thinking about questions that you want to ask at your consultation can help to distract you and to help you to take some control back

    These NHS tips to help you manage your anxiety can be helpful to try too.

    There are many ways that we can offer you support. You can call our Support Line on 0808-808-0000 and talk us. Our lines are open every day from 8am till 8pm.

    Best wishes and take care.

    Ellen-Macmillan Online Digital Nurse Specialist.

  • Hi Suzanne, 

    I am in the same situation as you . Have you heard anything back ? 

    Jules x

  • Hi 

    sorry only just seen your post I ended up ringing the breast care nurse and they got back to me the next day and gave me the information on the phone I am very blessed that it came back of a score of 12 so very low they also had me back to run through everything so no chemo I didn’t want to ring as I know how busy they are but pleased I did hope you get the answers you need soon 

    take care and be strong 

    soo