Cancer free or not?

After self discovering a lump I was diagnosed with bilateral breast cancer in August 2023 and underwent a double mastectomy and reconstruction in October 2023. Unfortunately the right reconstruction failed due to infection and despite two further surgeries to try and save it, including an attempt to fit a saline enlarger, I underwent a complete mastectomy in February 2024. After various infections and two stays in hospital on the sepsis pathway I was administered with Gentamicin in April 2024 which has now left me with balance issues(BVH). I then commenced chemotherapy in August 2024 and finally radiotherapy in November 2024. I am now on two types of cancer beating drugs for 7 years. However, how do I know if I am truly cancer free now? I have been told that my health authority do not perform routine follow up scans and if I feel unwell in the future then I should see my gp. As I am currently feeling unwell, as in completely exhausted, nauseous, and experiencing a continuous burning, tight feeling in my chest and throat, I have now booked to see my gp to discuss these concerns but wondered if anybody else has been sent away without follow up appointments or scans to determine if one is truly cancer free?

  • Hello and thanks for posting

    I'm sorry to read about everything you've been through. It sounds like it's been an incredibly tough journey, both physically and emotionally.

    You won’t usually have other routine scans and tests unless you report any symptoms that need checking. Several large studies have shown having regular scans following breast cancer treatment when there are no symptoms is not useful in finding recurrence early and doesn’t improve overall survival. You can read more about this on Breast Cancer Now's website.

    The GP has overall responsibility for a person's healthcare at home and I see that you've made an appointment to see your GP to discuss your recent symptoms. These symptoms could be related to your treatments, on going side effects, or something else entirely. But it's best to get them checked out just to be on the safe side .Your GP can arrange further tests if needed.

    Your breast surgery and I presume you are taking hormone treatment are treatments to reduce the risk of the cancer returning.

    Moving forward after cancer treatment is a journey and it can feel uncertain and overwhelming at times. Many people worry about the cancer coming back and this is a very natural thought process to go through. But for some people this fear and anxiety is with them every day and it really can affect a persons quality of life. Maggie's has some information about this on their website.

    Some patients also find moving forward groups and courses run within cancer support centres such as Macmillan or Maggie's centres helpful to look forward and try and regain a sense of normality.  Macmillan and other cancer support centres attached to hospitals run these types of courses as well. 

    You may find it helpful to know that Breast Cancer Now have an online forum and you may find it helpful talking to other women going through similar things and hear about their different experiences.

    I hope this is helpful. Give us a ring if you would like to talk anything over. The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Kind regards,

    Celene

  • Hi Celine, 

    Which home country are you based in?
    I only ask because each devolved health service seems to have subtly different processes in place. 
    Either way - seeing your GP is the first, most important step.


    Good luck!
    Dave

  • Hi Celine,

    Thank you for your advice, I will certainly look into the websites that you have suggested. I suppose it is a feeling of suddenly being ‘cast adrift’ after the intensity of the past 18 months! But, as time goes by, I know that my positivity will return and Life will get back to some semblance of normality,

    Thanks again,

    Dee