TNBC ....after treatment and fear of reoccurrence.

Hi

I just feel I need some emotional support.

Im 52 years old and generally a fit person (I run regularly)

I was diagnosed at the beginning of OCT 2019, had six chemo and a wide local excision end of March 2020nfollowed by 15 radio at the beginning of June. After my op there was no evidence of disease.

After treatment, I struggled emotionally. Covid had struck and I’d been shielding. I eventually got over this.

Then I started having like panic attack episodes. These went away for a while and I felt ok. I’d got back into running, and ran the London Marathon! But after this the panic attacks started again. I spoke to my doctor who recommended that I have a chest x ray, bloods, ecg and use a hand held monitor for my heart to use during my bad times. These all came back negative and I’ve been sent on my merry way.

Since my op I’ve not been examined once. I’ve sent pics to the BCN’s and talked to them and they have reassured me everything looks ok. I’ve found that I’m still sore on and off, especially when I sleep on the side of the op,and I have a lot of scarring and bumpy bits!

In the past I’ve suffered with health anxiety so I know I’m susceptible to it, but sometimes I just feel so completely beside myself about having triple negative. When I was diagnosed, I had a very quick look about what it meant but I quickly realised that the best thing I could do was read absolutely nothing about it as I’d worry. This worked well for me.

Now I’m just petrified to be honest. I’m just so scared of it coming back and what would happen. 

I really don’t know where to turn. I feel sick with worry and everywhere I turn there seems to be stories of women with breast cancer with the saddest of endings. How do I move on and regain my positivity??

  • Hi Yan Yan10 welcome to the forum and I am so sorry to read about how anxious that you are.

    You are not alone in your fears we all have this and sometimes it can overwhelm us and that's  not to surprising when you think what we go through. Im curious when you say that nobody examines you since, are you on the yearly Mammogram screening after Breast Cancer?

    In terms of it coming back we all live with this and know that recurrence is a possibility but we can let Cancer rule and ruin our lives or we can  take what we know that there is no evidence of disease and learn to accommodate somehow that uncertainty. I think we become very conscious and aware of Cancer when we have it and been through the treatment  and we seem to see  more about women and breast Cancer but there isn't really any more it's just that we are more aware of it so it flags up in our minds when we see it.

    Do you think its worth speaking with your GP about how you are feeling as our mental health is most definetely affected by this disease I had a real breakdown after the treatment finished and was put on Antidepressants which helped enormously or maybe some counselling may be of benefit. Please do consider speaking with the GP and don't put it off for too long.

    I don't know if any of that is of any help at all but please be assured that you are not alone in how and what you feel and we will be thinking of you so please do keep in touch and let us know how you get on.

    Sending some huge big hugs your way for now. xxxx

  • Thank you so much Gail for your reply.

    Yes I was told I would get a yearly mammogram but no one has physically seen me since the day of my op last March ( apart from receiving my radiotherapy) and that makes me so uneasy. There was a follow up phone call and that was it. 
    My GP that I saw who requested my chest X-ray etc did say he wanted to put my mind at rest by doing the tests that it was anxiety. He said that if nothing showed up he would look at medication for me to take but he hasn’t done this yet. I need to follow that up I guess.  
    I think with the pain I’ve been having in my boob both after sleeping and generally I should get it checked out further. I’m just so scared which is daft as the sooner we deal with these things the better I think. I just went through so much, treatment wise I just can’t bare anything else happening to me. It seems a crazy thing to say in a lot of ways, but it was so traumatic first time, I fear for a reoccurrence 

  • Hi Yanyan, I could have written your comments and feelings myself! I was diagnosed with TNBC in November 2019 and now that all of my active treatment is finished I too feel anxious every day about recurrence.  Like you, I've had reassurance scans which have shown no evidence of disease but I am still so sore and achy from the treatment that my mind goes into overdrive. What did help me was getting the all clear from my first mammogram since diagnosis and also working with a mindfulness coach to try and live for the present day and be a bit kinder to myself.  I'm not saying it's easy and to be honest I have to force myself to focus on an interest (with have a new puppy to keep us busy!) or go for a walk when the fear gets too much. Are you managing to get enough sleep given your pain?  I'm thinking of going back onto some anti depressants in the new year if things don't improve.  I hope you manage to find something to help you, you are far from alone in the way you feel.  Take care of yourself. Sarah x 

  • Hi Sarah

    Thanks so much for your reply.

    I’ve not yet had a mammogram after my treatment  even though I was diagnosed before you! I’ve been told I won’t get one till  the first anniversary of my op which is the end of March ( my birthday!!)

    Bur your reply ( and Gails) has helped me as I now don’t feel im the only person going through this. I do feel like I’m the only person who’s going slightly mad trying to deal with the fall out from this. I want to live my life and enjoy it but I guess Covid isn’t helping. It’s given me too much time to think I guess. 
    thanks again x

  • Hello Yanyan10, as Flossie73 says, you sound like me! Except I have only just finished my main treatment. I'm about to start the ibandronic acid for three years. But I do understand where you're coming from.

    Like you I find the nights hard for pain after my mastectomy. In fact last night I did get up and take some paracetamol. I'm lumpy and bumpy too.

    I did however get an examination from the radiotherapy team purely by accident. I was down for a telephone call two hours after my session, but the ladies said to wait and they would see if it could be squeezed in then.  A lovely lady who listened to me checked and explained how the radiotherapy had worked and what I would feel. The soreness and the lumps and bumps are normal. It will take several months for it to feel a little better and finally go. She told me to be patient and to keep doing the exercises and moisturizing. Just hearing someone say that to me helped.

    I take antidepressants (have done for years and had the panic attacks!) and have had counselling throughout my treatment. Both have helped. I am now starting to make plans for a future. I don't work (62 and because of my mental health) but I am going to do some craft as a job. One day at a time is my motto. I'm a Christian and although I cry at times, I just thank God for the day I'm doing, go to bed and try to sleep, then start again the next day.

    So keep up the running and think about the day your in and all that you have achieved which is a huge amount!! You are one amazing lady who has fought a great victory and I am sure you have a big team behind you. Stick out your hand and say to the nearest just squeeze it please and smile. Despite the tiers 3 and 4 (we're in a 4) we will get through this and March will soon be here.

    Take care and God bless. You're doing really well. xx

    Floss b
  • I feel the same, I was diagnosed Feb 2020 and finished treatment Nov 2020. I saw my oncologist in Feb 2021 and he examined me and said all looks and feels good and I won’t be seen or scanned until August but I’m so anxious of recurrence. I feel my armpit feels strange, no lump but a bit of a dimple on the outside but I had 7 lymph nodes removed from the inside so common sense tells me there’s going to be some disturbance to the feel. My BCN’s are great and tell me these are all normal feelings to have but it’s very difficult x

  • Hi floss b,

    Can you tell me how you've got on with taking the ibandronic tablets, as I have to take one everyday for 3 years and am worried about the side effects xx