Primetime Study

Hello all, I'm new to this site and the cancer journey. I have been offered the chance to join the above study with help and advice from great Research Nurses, it means i would not take radiotherapy because i am at very low risk of bc recurring. I am still uncertain, i don't want radiotherapy if i dont have to, but am i giving myself the best chance. Thanks in advance.

Comments

  • LouiseJLouiseJ Posts: 319 mod

    @JulieR

    Hi Julie,

    That is a very interesting question and dilemma. Firstly it is great that your medical team think you have a low risk of cancer returning, what has your oncology team said to you? Would the radiotherapy be a crossing the t's and dotting the i's?

    I haven't heard of this study or Research Nurses, what is the aim? What will be the aim for you personally?

    Does joining the study exclude you from having radiotherapy?

    I would suggest that you definitely be guided by your oncology team, but it is a personal decision as these decisions always are. If it were me, I would go for maximum prevention of cancer returning. If you decline radiotherapy and it should return, where does that leave you? Obviously these are just my personal thoughts, please don't make any decision based on what I say!

    Welcome to our lovely community, there are many here who have also been diagnosed with breast cancer, at various stages and paths of treatment and recovery. You will find a lot of support here should you want it, and every one is very friendly. Even if the cancer is different, we all understand the impact it has on our lives and those of our families.

    Where are you in your treatment plan?

    I was diagnosed with breast cancer in 2015, I went immediately into chemo, followed by a mastectomy and then radiotherapy. At the end of May, it will be three years since I finished radiotherapy. I am free of cancer, for which I am very thankful.

    If you would like to chat more, please don't hesitate to get in touch.

    Lou x

  • JulieRJulieR Posts: 3

    Thank you Lou so much for your wise words. So appreciated. I do not have an oncology team. I had my first Lumpectomy and sentinel node removal on 10/4/19 when the cancer was thought to be 6ml, very very tiny. I saw my consultant for results on the 18/4/19. He said op would be repeated on 1/5/19 as they had not taken enough safety margin and the cancer was 17ml. I get the results on Monday 20th May. If they come back as expected that would mean i could join the trial, i would not have radiotherapy as the aim of the trial is for very low risk ladies to avoid it as in their case radiotherapy itself carries its own problems. If the cancer should return you would have surgery then radiotherapy as per the present norm. Monitoring on the trial lasts for ten years and not 5 as per the normal route. The odds of returning bc in 5 years with radiotherapy 1-2%. Without radiotherapy 2-3%. The trial is open to ladies over 60. I'm 62 this year and with hormonally based cancer. I will still have medication whatever route i choose. It has been such a whirlwind since diagnosis in April I owe it to myself to make the best decision so feel I need to voice my concerns on Monday. Really grateful for your comments.

    Julie. X

  • LouiseJLouiseJ Posts: 319 mod

    @JulieR

    Hi Julie,

    I do hope tomorrows appointment goes well for you and the results are positive. I understand how nerve-racking it is waiting for results to come through. It seems like everything just takes such an age!

    I would suggest you write down all your thoughts and questions prior to the appointment, that way you can make sure you remember to voice them all. Write down the answers too as I have found that I remember until I have walked out of the door then promptly forgot! Better still have someone with you taking notes on your behalf.

    Let me know how you get on and what you decide to do. I will be thinking of you tomorrow.

    Lou x

  • LouiseJLouiseJ Posts: 319 mod

    @JulieR

    Hi Julie,

    How did your appointment go on Monday? I hope you were able to get enough information to enable you to make an informed choice about which route to take.

    Thinking of you, take care,

    Lou x

  • JulieRJulieR Posts: 3

    Hi Lou

    Monday went well and I received my final result today. Both my Surgeon and the Research Nurse addressed all my concerns and as all results show me as still being very low risk I decided t join the trial and not have radiotherapy. Ifeel confident in this decision, so the next time I see anyone at hospital is in one years time and will continue for ten years for both mammograms and seeing the Research Nurses. I really appreciated your comments, it helped me think about and formulate questions. So glad to be free of cancer. Hope you continue to progress well. All good wishes. Julier

  • LouiseJLouiseJ Posts: 319 mod

    @JulieR

    Hi Julie,

    That is great news! I am really pleased that it went well. I am so glad that you were treated when the cancer was still at a low stage and could successfully be removed. I do hope that you continue to get stronger and recover fully. Please keep in touch, it would be lovely to hear how you are getting on.

    With very best wishes,

    Lou xx

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