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Not the result I wanted

12 REPLIES 12
TeeCass
Member

Re: Not the result I wanted

OMG this is me now ! 😱

TeeCass
Member

Re: Not the result I wanted

Hello to you all.

I am in shock by the news that I now have triple negative breast cancer 11 years after Estrogen positive cancer.

the prognosis is not good how do U all

cope ? I just feel sick and I’m shock 

perpetual chemo ? 
calcifications ? 

I have such morbid thoughts now and never did the first time round. 

I’ve had an mri on my breasts 

ct scan to follow then chemo 

i think it’s spread . I think I’ve left it too long . 
you sound so strong and positive and I just feel like I want to end it now x

Jaybro
Member

Re: Not the result I wanted

Hi Steval

How do I manage to keep in the present? I don’t really know, except for the decision to just trust my team, go with the flow and deal with what I have to when I have to. That means a sedative before the quarterly  MRI or CT scan lol. But when they tell me there are several new drugs waiting to be licensed, I accept their encouragement. And I never ask a question if I suspect I couldn’t handle the answer

I have surprised myself but it had to be an instantaneous and instinctive decision - why waste time and energy wondering about when the treatments will fail and what it’s going to be like when I might very well live to a ripe old age? It was the same with my primary diagnosis of 75% survival rate - I always thought of the 75% and assumed I was in that group. My bc nurse gave me amazing advice and I’ve stuck with it. If you like, I can find it and email it to you - just PM me. 

I was 67 when I had my primary diagnosis so maybe age is part of it. I really don’t know how anyone with young children can manage, whereas I have the luxury of doing as I choose. A day in bed sleeping from fatigue is easy for me. Taking a couple of hours out in order to drift away in a meditation is my choice. I’m spoilt.

The only price is the numbing out. I believe emotions need to be expressed to remain healthy so I’m all for a good rant or cry at the unfairness of it all - but I can’t get near it. And I’m not ever going to be healthy now with a secondary TN diagnosis (perpetual chemo???) so hang the emotion and go with the ostrich approach. Long may it continue to work for me!

Take care. Be proactive with your emotional health. Something with a daily commitment which will, with practice, give you those moments of peace and insight that help. For me, it’s those YouTube videos and my earphones! And my blog which my husband doesn’t read and is therefore a safe and honest outlet for me. I recommend it. It makes you reframe your thoughts, which is a good starting point.

Ugh. My husband has just arrived with 9 pills and some food! Now that bit really does get me down.

Jan xx

delly
Member

Re: Not the result I wanted

Eeee, You're so very welcome @Shaann 

Yes, aren't they so gorgeous. Am thinking of you and again, sending so much love and strength to you, to keep fighting girl.  Dellywelly  x💖x

Shaann
Member

Re: Not the result I wanted

One of my favourite flowers 💐. Thank you xxx

delly
Member

Re: Not the result I wanted

Hi @Shaann@Biggles01@Steval and @Jaybro/Jan

Just wanted to send you some cheer, with an instant sunshine flower. Aren't they gorgeous. Love 'em. 

Shaan, I've been so sorry to read your posts. That it must be especially difficult for you, after 20 yrs !!, and now having a recurrence. I'm 14 yrs clear(?). But just shows we can't ever take it for granted that we are truly "clear" and free from it. However positive we stay.

Wishing you ALL to be WELL, and sending love and strength to keep fighting/kicking BC in the flippin BUTT, girls. Delly  xX❤️Xx   Wish I had a magic wand for you all X 

delly_0-1636482345947.jpeg

 

Steval
Member

Re: Not the result I wanted

You’re lucky to have a dog....a good distraction. Fresh air is definitely important isn’t it.

I just don’t know how to deal with this all at the mo and I know it will continue after surgery for me too. I’ve got CBT booked which may help.

thanks for the reply.....keep in touch

Steval

 

Shaann
Member

Re: Not the result I wanted

Hi. I too am struggling at times and feeling overwhelmed! I am trying to take one day at a time and take a step back from everything and everyone!   I have gone on sick from work as I can’t cope with my job role, which I love! .  I find having a dog helps to motive and get me out in he fresh air and Listen to music and podcasts as I walk as a distraction from listening to my own thoughts.  When my anxiety is very high I find myself cleaning (I hate cleaning!!). I’m trying not to use Mr Google as advised by others. Cheesey movies also help! Lol.   It seems a long wait to find out about when surgery will be carried out.   

Hang in there Steval and just do what you need to do to keep you in the moment.

big hugs

xx

Steval
Member

Re: Not the result I wanted

Hi Jan,

Just reading this post of yours. I'm struggling to remain positive and hopeful with TN. I'm consumed by it and it's overwhelming.

How do you manage to keep in the present? 

Thank you

Steval

 

Shaann
Member

Re: Not the result I wanted

Thank you for this information. I shall certainly  look into it when I feel ready.  I omitted to say that I had BC 20 years ago which was Oestrogen positive and had a lumpectomy at the time.    Chemo not tolerated due to anaphylaxis reaction.    I’m sure things have moved on a long way in respect of treatments now.   I will avoid Mr Google tho and speak with professionals only. Thank you 

Jaybro
Member

Re: Not the result I wanted

Hi Shaan

I got my diagnosis after a mastectomy and FAC in late 2018. I was told I had two tumours (Stage 3). I heard one was ductal, one lobular and zoned out after that. I decided the only way to get through it all was to ask as few questions as possible, just trust the team and deal with it. So it came as a bit of a shock to me when I got my diagnosis for secondary bc this year to learn it was triple negative. Back to the oncology correspondence and there it was, every letter stating the zero scores but then stating the hormone-responsive scores for the second tumour - and they were all I’d ever skimmed. Come to think of it, I don’t think my oncologist has ever used the term to me!

I whole-heartedly agree that the FB group will be very helpful but I’d advise you to wait a bit. Keep off Google (that way lies doom, gloom and terror) and just get used to the fact that you have breast cancer, TN or not. Yes it is harder to treat but that doesn’t mean it’s untreatable and will inevitably have a bad ending. There are more treatments available than a few years back and quite a few trials which your team will be looking into to see if you meet the criteria. I’ve failed every time so far but my onc told me this week that there are at least 5 new drugs waiting to be licensed.

The reason I say hold back on the FB group is that there will be many members who will speak openly about how things are going and many will have secondary bc like me. You can’t compare yourself with us (Us? Like we’re special?) and it can be as scary as googling TNBC. Once you’re well into your treatment and have come to terms with your diagnosis, then is probably a better time to join in. I consider myself an old hand but I still get unsettled by what some people post. 

Advice:

1. Don’t jump to the worst conclusions. Wait till you have all the facts (my diagnosis changed four times in four weeks, as they got more data) and decide how much you want/need to know. Some people want every bit of data explained, some like me play ostrich. Both are valid coping mechanisms.

2. Give yourself time to get used to how things now have to change, not just for you but your loved ones.

3. DO NOT GO NEAR DR GOOGLE

4. Join the TNBC F/B group when you’ve got used to the idea of having breast cancer and feel more positive that your treatment is working - that will protect you from the harsher realities some women experience because you’ll have a clearer idea of what to filter out.

5. Look after your emotional/mental health as well as your physical health. If you don’t practise mindfulness, meditation, yoga etc, find one strategy that will help you throughout. Mine was Progressive Hypnosis videoes on YouTube. I still do at least one daily.

I wish you all the best. To be honest, I’m glad I didn’t register I had TNBC during my primary treatment and I’m sorry you have to grapple with a tougher diagnosis.

Take care,

Jan xx

Biggles01
Member

Re: Not the result I wanted

@Shaann 

TBNC can be a very scary diagnosis. I highly recommend the Facebook forum: Triple Negative Breast Cancer UK and Ireland (TNBC) support.

They have helped me enormously. Lots of very supportive and extremely informed members regarding TNBC.

I hope it all works out for you. Best wishes and hugs.

Shaann
Member

Not the result I wanted

So I went for my results only to be told that I have Triple negative breast cancer.  One cancer at stage 1 and one at stage 2 as well as calcifications.   Now awaiting MRI before seeing breast surgeon before discussing all options of surgery.  Also recommended to have genetic testing.  Head is in a spin.  Any advise welcome.