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Got my results today - not what I was hoping :(

11 REPLIES 11
sandie73
Member

Re: Got my results today - not what I was hoping :(

Hi zuleika

My BCN mentioned mindfulness and did a demonstration of it with me. It's about being the moment and acknowledging any thoughts you may have but letting them past you by. I have practised it and it does make me feel calmer.

Think we can't believe we have cancer because we feel so normal like there is nothing wrong. It's a good sign though. It's seems to be an invisible disease that produces next to no symptoms in the early stages.

I can have short periods of not thinking about it and then it hits me like a tonne of bricks. It's such a horrible emotional roller coaster! Xx
Zuleika
Member

Re: Got my results today - not what I was hoping :(

Sandie, I totally understand what you say about not believing that you have bc. I still think that and I'm one year since diagnosis. I had WLE then mx and have just had bilateral implant reconstruction. I'm finding it harder now than I did at the beginning and only people like us truly understand.
I love Jillbee's advice, I'm sure that approach helps. One thing that helped me was a mindfulness course at my local Maggie's centre, I would urge you to try it. It was SO not my thing but it has helped.

You will come through and be ok, but this journey is tough. But you will feel better in time
Xx
sandie73
Member

Re: Got my results today - not what I was hoping :(

Thanks jo1 and jillybee559 for your experiences. Sounds like you have a big decision to make too jo1. Definitely tearful, feeling rubbish, lank hair and dark panda eyes fits my description now! Not been able to wash my hair as much due only been able to have shallow baths and no showers these past 3 weeks.

Jillybee559 - how did you find the mastectomy and what's a DIEP?

Still agonising over whether to have another WLE or a mastectomy. Would want to keep my breast but not if it's going to be horribly disfigured. But the thought of having one boob for months whilst waiting for reconstruction - i just don't know how I will feel about that. It's like part of your sexuality eroded and I am already suffering a lack of body confidence. Being bald and scarred from this horrible experience is bound to effect all of us going through this.

I know in the grand scheme of things, the fact is I am fighting cancer so not going to look a million dollars. Just bit by bit I feel this cancer is taking away the healthy pre cancer person I was. Cancer dominates my every waking thought now - I hate this new nightmarish life so much now 😞 xx
jillybee
Member

Re: Got my results today - not what I was hoping :(

I suggest just go with the flow.... yup, you feel crap, and tearful, and rubbish, and hair is all lank, and have dark rings under your eyes. It is (the cancer)never far from your thoughts. Bless you, it is a horrible time. My tip is to read trashy mags, watch TV, and eat chocolate. I went throuhg a dreary dark winter, now feeling fine. waiting for DIEP in July.

Jo1
Member

Re: Got my results today - not what I was hoping :(

Hi Sandy, it's a big decision you'll have to make - lovely that you're having a holiday, even if you're having some dark times.

 

With my previous cancer, I had a WLE, only to be told that there weren't clear margins and was offered another or a mastectomy, but I turned that down. I ended up having 3 WLEs in 7 weeks and those 3 general anaesthetics definitely lost me brainpower for ages. I then had a course of radiotherapy. I've sometimes thought it would have been better to have a mastectomy, as the small amount of breast I have left is a bit of a sorry sight too, only about half left - had to have a lumpectomy about 10 years ago which showed no problems.

 

5 years later I was diagnosed 2 weeks ago with lobular cancer in the other breast, so I also have big decisions to make. I'm E+, P+ and on anastrozole for 4 weeks before my op. It all seems unbelievable when feeling pretty fit - although I did slow down a fair bit since the ops, but fit and healthy (sounds daft to say that!) for nearly 70.

 

Lots of luck, Sandy and any others needing to make big decisions shortly. Thinking of you too Dec 23 on your journey - even more so as that's our wedding anniversary, 47 years in December. Love and hugs, Jo

 

sandie73
Member

Re: Got my results today - not what I was hoping :(

Thanks everyone for your positive wishes 🙂 on holiday at the moment but been difficult at times to carry on.

I really don't know what to do. My first response was to go for the mastectomy so I get the surgery over and done with. But like Dec23 I am reluctant about losing my breast. Don't want to give up my breast without a fight so thinking give the WLE another chance to get all the cancer out.

Mastectomy seems such a big op, more discomfort and the thought of waking up with one side of my chest flat is hard for me to bear.

Have said I want an immediate implant reconstruction but was told may not get reconstruction straightaway as may need radiotherapy.

However realise all this extra surgery is going to add more time to an already nightmarish journey. So a lot of thinking and weighing up my options is ahead.

Dec 23 - sorry to hear of your surgery nightmare and glad to hear you are on the road to recovery. Are you going for a reconstruction?

I still can't get my head round the fact I have breast cancer. The first thought that pops into my head every time I wake up is that 'I can't believe I have cancer'. Don't think that shock will never fade away. Most days I am in a dark place thinking what a horrid year I am having and the thought of more surgery, chemo, losing my hair, looking and feeling like crap fills me with dread 😞 xx

23Dec
Member

Re: Got my results today - not what I was hoping :(

So sorry to hear that your news was not good, and such a shock to you...as it would be, of course. I too, had some shocks along the way on this roller-coaster ride! Similar to yourself, I had unclear margins - twice - ie two lumpectomies both came back with unclear margins, resulting in a mastectomy....so, the process took much longer than I anticipated- and, with hindsight regret nothaving taken the mastectomy option (which I was offered) after the first lumpectomy came back with unclear margins..but I was just so in denial - really believing that it was only "a little bit of cancer" which could be removed....and, also, being very reluctant to lose my breast. Now that I have had the mastectomy I am coming to terms with it. It healed much more easily and quickly than the previous lumpectomies did (which amazed me as I thought it was a much "bigger" operation).  The future remains a little scary - of course....however, the more women with breast cancer I have met, and the more I read on this site - plus,of course, the wonderful care, support and honesty received throughout the care from cancer specialists (ie nurses, surgeons, etc the more I realise that this dreadful disease is very treatable. It is nightmarish at times, and we may visit some pretty dark places on the journey - but it is a journey to recovery - and you are not travelling alone.....Thinking of you and sending love

gemini22
Member

Re: Got my results today - not what I was hoping :(

Hi Sandie

Sorry to hear of your results - you will be feeling understandably shocked at the moment but please remember that it is still treatable. Your journey may take a bit longer than what you hoped but i am sure you will still cope.

Sending you hugs and positive thoughts

All the best

L x

mary32
Member

Re: Got my results today - not what I was hoping :(

Hi Sandie

 

I am so sorry you have got this news. My thoughts are with you.

 

It's true that it's strange we can feel so well at the point of diagnosis. I felt the same.

 

Mary

WP23
Member

Re: Got my results today - not what I was hoping :(

Hi sandie

Sorry your results were not what you hoped.

Try and stay positive as best you can.

Wendy xx
Jo_BCC
Member

Re: Got my results today - not what I was hoping :(

Hi Sandie,

 

Sorry to read that your results aren't what you were hoping for, I am sure your fellow forum users will be along soon to give you some much needed support.  Please don't hesitate to call our helpline if you need to talk to someone in confidence, our staff are here to support you through this.  Calls to the helpline are free, 0808 800 6000 lines open weekdays 9-5 and Saturdays 10-2.

 

Take care,

Jo, Moderator

sandie73
Member

Got my results today - not what I was hoping :(

My BCN phoned me today as asked her to let me know the results as my appt is not until June 6th. It all seems to be bad news - they haven't got clear margins and the SNB came back as positive for cancer so it has started to spread.

I am her2 negative and oestrogen positive 8/8. Will need further surgery to remove further tissue (possibly a mastectomy) and an axillary node clearance.

She says I will probably be offered to start chemotherapy before surgery to allow me time to consider my options.

Part of me is relieved to know what lies ahead but another part of me is reeling at the thought of the node clearance and a possible mastectomy. I am considering a double mastectomy to reduce the chances of it coming back.

It's such a horrific nightmare and it's strange as I feel well otherwise but been told that's a good sign. I want to live, I want to see my kids grow up, meet my grandchildren and grow old. I am so very scared now about the future xx