Recurrence group?

deekay77
deekay77 Member Posts: 8 ✭
in General discussion
Hi everyone I am a few months into treatment for a local recurrence. It’s hard to find people who have gone through or are going through something similar. Any threads or group discussions you could recommend would be helpful.

Only looking for experiences of others and not academic or medical journals etc (I think I’ve read them all 😂😂)


Thank you!!
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Comments

  • Esjay
    Esjay Member Posts: 4 ✭
    Hello Deekay77, 
    I'm on your rollercoaster too! 
    I've had similar issues trying to navigate. There simply isn't much info out there on recurrence. It would be great to see advice on how to manage a recurrence diagnosis both with the mental adjustment as well as medical treatment options. Everything seems to focus on the fear of recurrence but what about when it actually happens?
    It's a bit like hitting replay, but at the same time it's a new experience that I would love to hear from others what their new course of action involved.
  • arpie
    arpie Member Posts: 8,197 ✭
    So sorry about your recurrence, @deekay77 and @Esjay xx
    .... I think a private group For Recurrence Members would be a terrific idea & give you immediate support and access to others who've been diagnosed. I'll tag @Mez_BCNA to see if she may be able to get it up & running.

    I've done a search here on ''local recurrence'' and I am sure you'll find some threads here that may help you ....

    Clicking on the Liz O'Riordan link might help too - she is a UK Breast Surgeon who was diagnosed with BC and has had 2 x recurrences ..... she has a very interesting blog where you can follow her story from her 'D Day' (Diagnosis Day) up to the present ... and has also written a couple of books about Breast Cancer. She is very active on Instagram with lots of VERY informative posts on anything to do with BC.

    https://onlinenetwork.bcna.org.au/search?domain=all_content&query="local recurrence"&sort=-dateInserted&scope=site&source=community

    Take care & all the best xx
  • Tri
    Tri Member Posts: 223 ✭
    What a good idea - it would make the pathway to targeted information and support very clear. 

  • deekay77
    deekay77 Member Posts: 8 ✭
    Thanks @arpie - really appreciate your help and suggestions. 

    @Esjay - it would be great to connect to compare notes if you want to? 
  • Mez_BCNA
    Mez_BCNA Administrator, Staff, Member, Moderator Posts: 1,144 ✭
    @Esjay very good point about the 'fear of recurrence' info vs someone who has had a recurrence. We have taken this feedback to our Content team for consideration when updating future supporting information in our resources. @arpie good suggestion - we are holding off on any new groups just for a very short time, however it is the second one on my list to consider in 2025  :) very valid points and hopefully for now the Online Network can provide support for you @deekay77
  • Esjay
    Esjay Member Posts: 4 ✭
    edited December 10
    Thanks @deekay77
    Not sure you want to hear my story..it sends shivers down everyones back ...if you look at my profile you'll see it there. I'm very fortunate to have a brilliant medical team & fantastic family to support. It's all about hanging on tight for the ride! 
  • melzzs
    melzzs Member Posts: 60 ✭
    I also think a group for recurrence would be good it's always in the back of my mind.
  • SarahS0309
    SarahS0309 Member Posts: 2 ✭
    Hi there 

    Thanks for starting this topic. I have been reading posts here for about 3 months but haven’t found the right time or place for me to comment. 
    I had ER positive early BC in 2018 on RHS. Two lumpectomy; 3 lymph nodes removed; 3 weeks radiation and  5 years of tamoxifen. 
    Stopped the tamoxifen in July this year and went for 5 year check with surgeon on Sept 9. Ultrasound showed  7mm lump on LHS! Biopsy revealed ER positive invasive BC. Lumpectomy and one lymph node removed end of September. Then had consult with geneticist and waited 4 weeks for those results. All negative to BC genes, bowel and ovarian. 
    Started 3 weeks of radiation yesterday 11/12 and planning to start Anastrozole in January. 

    Throughout the 5 years since my first BC I always had it in my mind and wondered if it could come back. To say it was a shock is an understatement!
    The first time I around I kept working and staying busy. This time I am finding  it much harder psychologically but also trying to take more time for myself and deal with everything. 

    It’s great to have this resource. Sending good thoughts to everyone who is on this roller coaster!


  • deekay77
    deekay77 Member Posts: 8 ✭
    Hi @SarahS0309
    OMG - roller coaster for you is an understatement! I’m so sorry about your recurrence…just at the five year mark too!’ 
    Does this mean it’s a recurrence, or is it being treated as a new Primary? It’s all very confusing!

    I just got home from day nine of 25 radiation sessions. I actually got quite emotional in there today because I felt really alone even though I have a lot of love and support at home and in my friendship group. I think it’s finally hitting me now!
  • SarahS0309
    SarahS0309 Member Posts: 2 ✭
    @deekay77 it is being treated as a new cancer. All the Dr's have said I might just be unlucky!

    Hope you get through your radiation ok. Just one day at a time is how I see it. 

    I have great friends and family support. Unfortunately my brother in law was diagnosed with Stage 4 bowel cancer in February. He was here for a few weeks recently but is now really unwell home in London. So my husband is flying there next Thursday indefinitely to help out etc. We have had a super challenging year with this and then my stuff just added to it! Oh and we are renovating our house....

    Friday tomorrow so I hope you and everyone else has a good day and enjoy the weekend ahead. X

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