TNBC
Avagomum
Member Posts: 16 ✭
I was diagnosed 12 months ago with TNBC. During treatment I always thought of my boob as a shitty titty and now having completed treatment I thought about recurrence. I asked my Oncologist the % of chance of return. He said I'm high risk (Gulp). Im now trying to come to terms with 50/50 chance of recurrence. I'm quietly shitting myself while trying to remain positive. But shit, shit shit!!!
I'm not crying but my eyes are leaking.
I'm not crying but my eyes are leaking.
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Comments
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Hi @Avagomum, and welcome to the forum. Congratulations on having finished your treatment.
Give yourself time to process this information. To a lesser or greater extent we are all at risk of recurrence, and we all handle the worry in a different way.
We all have to grieve the loss of innocence that is a diagnosis of breast cancer, and that NED is the best we can hope for. Adjusting to a life where a recurrence is a strong possibility is a shitty thing to have to do, but do it you must. Cry, rage and then take some deep breaths. Uncertainty is part of the human condition. Yours is just more focussed than others.
Have you done everything available to you for your treatment? If not, and you find living with the fear too much, you still have options. If you have, all you can do is be vigilant and trust your medical team.
In the meantime thousands of years of thought has gone into how we cope with the fragility of life! Try a variety of things to help you cope. Mindfulness and meditation teach you that there is only really 'now" and to sit in that as best you can. Being present, seizing the day, that kind of thing. Distraction is good, be it sport, work, a hobby or the company of friends. In the short term the tv, reading or doing a puzzle might help. Focussing on others, something outside yourself, can help keep the fear at a distance.
Fear of recurrence can take over your life. Fear is a useful emotion in that it can protect us from danger. If you are doing all you can to protect yourself from a recurrence then you can tell your fear too f**k off because it is serving no useful purpose at all!. If you get stuck in your fear you might like to see a counsellor for a bit.
Hang in there lovely. Big hug, K xox
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Thank you for your words of wisdom K. You have given me some really great coping strategies which are much appreciated .
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Stay in touch here and let us know how you get on. @SoldierCrab is a TNBCer I think. I'm sure she's got some useful wisdom! K xox
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Sadly, we all have the 'recurrence' damocles sword hanging over our heads @Avagomum .. the trick is not to let it govern your life.
Get out there & just do what you love doing (for me it is fishing and playing ukulele) .... or even trying some new hobbies as well. I run the local uke group & we regularly perform at 4 Old Age Nursing Homes & attend other groups, spreading the joy of music & uke, so it keeps me busy with 2 x practises every week as well as the performances .... it is all good fun & very therapeutic - best of all - it keeps me BUSY!
take care xx
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hi Avagomum,
sorry you find yourself in this shit fest called TNBC
I am away from work so typing on my phone which I am not good at... so excuse any mistakes.
Have you got a good Breast Care Nurse ? it might be worth sitting with her and discussing in depth the reason why the Onco has said high risk .... all TNBC is higher risk of Recurrence as I understand it ...
but Saying that I am now 6.5yrs NED (no Evidence of Disease)
Ask any questions....
If you wish there is an Australian group for TNBC on facebook.
https://www.facebook.com/groups/1166665270079659/ I am part of the admin of that group. Lots of ladies some like me with NED some with Mets some with recurrence but a great supportive group.
I am presently away on holidays so hence my use of phone...
Happy to answer any questions if I can.
Soldiercrab
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Thanks @arpie,
Keeping busy seems to be the key to keeping the worry away. Your Uke performances sound like they are lots of fun for all involved.
I think I was so focused on being positive throughout my chemo treatment, that I didn’t acknowledge that it might come back until after my treatment was finished and then I thought, “what’s stopping the cancer!”. Then I thought “shit”,I’ve got cancer😳, then I thought to myself “self, you’ve had cancer!”. The thought of it returning is ‘blah’.
Youre right tho Arpie, music is very therapeutic, I’m thinking I’ll put on some music and do some gentle boogie with my vacuum cleaner, that will tackle the cleaning and exercise at the same time.
Thank you for your support arpie
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Thanks @SoldierCrab,
I feel pretty weird at the moment, sort of in between wanting to know but not wanting to know. On Friday I managed to rustle up some courage to ask the Onc about my chance of recurrence, hence my “oh shit” mode.
I still haven’t had the courage to look at my cancer results yet. 12 months ago I was told 75 mm, grade 3, stage 3, with lymph node involvement and that’s all I needed to know, oh , and also how do we fix my “shitty titty”. I’m not really ready to explore why I’m at high risk. It’s way too confronting for me and even tho I’ve completed my treatment, I think I still have my head stuck in the sand.
The TNBC Facebook group is great. 👌
Thanks for your support SoldierCrab
Have a fantastic holiday
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@Avagomum Hi and welcome to this forum. It is a great place on those days when your spirit needs lifting, or just to ask questions from people who just get it and have been there before you and understand what you are going through. As you will see there is a lot of humour and laughs along the way. ( God who would have thought you would get that on a Breast cancer forum hey. ) Like yourself I am one of those 15 % who have TNBC and I can totally relate to what you are saying. I think once you are going through active treatment you just concentrate on that bloody big mountain we all have to climb but once we get to the top it's like " Shit I've got here, What now " So many of us on this forum worry about recurrence and I also know too well the statistics for TNBC but those thoughts do get better with time. I think once you finish your treatment also seems to be the time you take a deep breath and take time for reflection on what you have gone through and also seems to be when those pesky little bubbles of "What if " pop up . So many of our friends and family are like "great its all finished now" but its not and never will be. There is no easy answer but try to live life.. One of the lovely members on here mentioned she downloaded the "Insight" app and I did the same thing and absolutely love it for those bad days when you need some quiet meditation. I also have thrown myself onto my exercise bike each day ( not a pretty sight ) and have been out fishing another big passion. I think the trick is to take one small step at a time. Enjoy the small things like, I love it at night when the fireflies are outside my bedroom window and the moon is coming up, I also love smelling my Frangipani tree before I walk into my house. It's the little things one day at a time. big hugs to you. xo5
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I finished Chemo for TNBC in January and radiation therapy 2 weeks ago. I too often think about re-occurrence. I try to put it at the back of my mind. My first post treatment mammogram and ultrasound is not until May. I’m sure as I get closer I’ll think about it more. I keep reminding myself I was only stage 1 (grade 3) with clear nodes. But then a little voice reminds me the first time was a surprise, what if it’s somewhere else? I guess it’s natural to worry, it’s all so new too. It doesn’t help that they’re are reminders of cancer everywhere. I’m lucky that I have people around me for positivity. Xxx3
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I’m TNBC diagnosed October 2018.
Had a a partial mastectomy and two lymph nodes removed, clear margins and lymph nodes, Grade 3 stage 1.
Currently having Chemotherapy, still another 13 Infusions to go then 6 weeks of radiation.
We just have to try and stay positive, and knowing that we will be monitored closely for a few years, so if there was a reoccurrence it will be acted on quickly.
No one knows what the future brings in life wether we have had BC or not.
Lets just live life as best we can
Sending everyone cyber hugs xoxo2 -
I am TNBC diagnosed August 2018. Had a lumpectomy in September 2018, clear margins and lymph nodes. My tumour was 2cm stage 1B grade 3, had 6 cycles of TC chemo every 3 weeks then 30 rounds of Radiation. I finished my radiation on the 17th of April 2019. I handled radiation really well better than I thought I would. I feel really good not to many side affects just numb feet and sore knees and elbow. I think that is from chemo. I try not to think of a reoccurrence but it creeps in when I least expect it. I feel a little lost at times after treatment has finished due to not going to hospital etc. feels a little strange. I guess for me I feel like yes I have had my operation and I will get better but it's not like that it was cancer not a back operation if you know what I mean. I hope I am making sense.Xxx0
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Totally making sense. Many of us feel that way. Including me.
There's a whole section here for this. Have a look: https://onlinenetwork.bcna.org.au/categories/now-what-the-highs-and-lows-of-survivorship
Big hug @Gal. I'm told it gets better. One day soon I hope. K xox1 -
Makes perfect sense to me @Gal
I think we are in such a routine while receiving treatment and then after treatment finishes we go, umm, what do I do now.
Ive focused on staying in the moment, enjoying the little things. I paint 🤔 ( let’s just call it abstract painting), I put paint on the paintbrush then whack it onto the paper.
I sew clothes for my grandkidlings , I sing ( even tho I can’t hit the correct note) in a group twice a month, it’s a fun thing to do. Mindfulness has been fantastic. I guess I keep myself comfortably busy, enjoying what I do. The occasional ( oh shit ) blimp does surface and this group is wonderful and very supportive during those moments.
Sending big hugs your way @Gal ❤️2 -
Hi @Avagomum and @Gal I am also TNBC I finished active treatment in Jan 18 and only see the breast surgeon now every 6 months and have yearly mammogram n ultrasound and breast MRI every year. It is very scary sometimes when a new ache or pain arrives I feel like my GP thinks I am a hypercondrac as I always go and see him when something new pops up . I find keeping busy stops the reocurrence thoughts coming in to my head but they are still there sometimes. Take care 😀2
