Triple negative recurrence

Question

Hi I was diagnosed with Triple Neg last March 2024 and finished chemo and radiation end Sept. I got through it all fine-not too many side effects bar the usual and I was exercising, eating well, and feeling positive about it not returning but then in November I felt a lump but wasn't too concerned I thought is was just fibrous tissue post radiation but it has returned and not only that I now have a small oestrogen postive one in the other breast. In a week and a half i have gone from ultrasound, PET scan biopsy and starting chemo last week and had 2nd one today. As well as immunotherapy and a double masectomy when chemo has finished. I'm just finding it quite hard to cope with this time (even though) the PET scan shows it hasn't spread anywhere. I was so strong last time but this time I feel like the rug has been pulled out from under me and I'm finding it hard to stay positive. I sat and just had tears running down my face for a lot of the chemo today. I didn't really feel the need to use BCNA much last time but this time I think I need some extra support. Thanks for listening, just nice to know there are people out there who can empathise with how I'm feeling. Take care.

tonyam1 · Answer

Hi Tulip1, sorry to hear you are going through this crap journey a second time.I had a recurrence 7yrs after my first bc diagnosis. It was same breast,same spot,same pathology (Er+)- despite clear margins and elephant dose of radiation.(2003) My first reaction was ‘come on,you’ve got to be joking’! After the anger came the fear ofcourse.Then jumping through the hoops again. That was 2010 and I’ve been all clear since. 3 years ago I decided to have the remaining healthy breast off to go flat.I didn’t want the worry anymore.It’s an adjustment for sure and if that’s the path you take later on,you can always join Flat chat group here or Flat Life Australia Fb. It’s good you caught it early again and that it’s nowhere else. It’s unfair,it’s unlucky and it’s nothing you’ve done or haven’t done.Just know that there are lots of us who’ve had a recurrence and are now living long happy lives. I’m wishing that for you too.xx

moomincorn · Answer

Sending you a big gentle hug.It sounds like everything this time has happened very quickly and you've been pulled in a lot of different directions. It might take time for you to be able to catch your breath. Those tears are important.Do you have a breast care nurse that you can talk to about how you're feeling? Or have you tried the BCNA helpline?

tulip1 · Answer

Thanks so much for your response, it was really helpful. I have reached out now to the Triple Neg group. Thanks. It's funny I only recently discovered Charlotte Goodman a couple of months ago- she is brilliant!&nbsp;

tulip1 · Answer

Thanks for the gentle hug. Much appreciated.

christina_bcna · Answer

Thank you Tulip1​&nbsp;&nbsp;for sharing what you’re going through. It sounds like you’ve had a whirlwind few weeks, and it’s completely understandable to feel unsettled after such big changes. The fact that your PET scan shows no spread is a really positive sign and a strong foundation to build on as you move forward.
You’ve already shown incredible resilience by getting through your first treatment and by taking proactive steps now. Chemo, immunotherapy, and planning surgery are all powerful actions that put you in control of your health. It’s okay to lean on extra support this time, connecting here is a great way to remind yourself you’re not alone.
Take things one step at a time and keep focusing on the progress you’re making. Please don't hesitate to reach out to us on the Helpline if you need to chat 1800 500 258 ❤️

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Triple negative recurrence

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