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Awaiting results and terrified...

7 REPLIES 7
LindaBag
Member

Re: Awaiting results and terrified...

Hi Jan,

Thanks for getting back to me and sorry if I have contributed to your concerns. I know from experience, surgery was in March 18, chemo April and radiotherapy Oct18 after further surgery, that it is a lot to come to terms with. I know that the chance of recurrence will never go away but they told me that they still don't know for sure who will be unfortunate in this respect despite the original staging. When people ask if I am alright I always says touch wood I hope so as I don't like to tempt fate. I don't think this is answer people expect but it helps me to keep it in perspective. I went through months of varying degrees of worrying about the future but have now got to the point where most of the time it is pushed to the back of the mind and it is not the first thing I think of when I wake up. I still have my bad days but as long as it is a temporary blip that OK.      

I try to tell myself that if it comes back I will deal with it at the time and in the meantime get on with making the most of every day, you appreciate the smaller things in life more after going through what we have. I hope your MRI scan results are good and that you get through the next stage of recovery being your peace of mind quickly. My mum used to say that you can spend time worrying about something that might happen and then something completely unexpected occurs so try not to worry about what might be, easier said than done at times!

Best wishes,

Linda

flyingbrick
Member

Re: Awaiting results and terrified...

Hi all

 

thank you for your replies and wishes

 

Xx

Jaybro
Member

Re: Awaiting results and terrified...

Hi Linda

 

One thing that got me through the whole exhaustive treatment process was to make sure I knew as little as possible. I asked few questions except about practicalities, researched nothing and only skimmed letters. The process now draws to an end, my strategy successful. However, you got me checking and I realised that skim reading had led me to an error - my tumours were grade 2 and I suspect I read this as stage 2. I’m glad I did. Stage 3 would have been harder to avoid worry. I can’t see any reference to a stage in all the abbreviations and gory details of my cancer. Having said that, there’s a nagging memory of my adjuvant oncology nurse saying Stage 2 - maybe I was right. As I’m now at the end of the treatment with my ‘final’ oncology meeting near the end of August to discuss MRI results, I may well ask some of the questions I didn’t ask before and I’ll read the letters carefully. Ironically I’ve noticed that, free from regular hospital appointments and treatment over, the anxiety is seeping in. The fact that I’ve had every treatment going isn’t stopping that nag of fear I avoided till now but I don’t think I can continue with selective ignorance now it’s started. So, I’m afraid I can’t help you - I’m just relieved you asked me at this stage and not earlier!

 

Good luck with your recovery,

Jan x

LindaBag
Member

Re: Awaiting results and terrified...

Hello Jan,

I have also been treated for invasive breast cancer and after surgery, chemotherapy and radiotherapy take Letrozole and have 6 monthly bisophonate infusions. I agree that some of the information on the internet is misleading, especially how the media reports developments.  I read your earlier post where you said that you had 19/21 positive lymph nodes and you were stage 2. I had 18/18 positive nodes removed but have always wondered why it was staged as Stage 2B by the oncologists. I thought this number of positive nodes meant it was Stage 3. As you say hopefully we are both free of cancer and things have moved on but I wondered how you know you were Stage 2, was it your oncologist who told you this was the case? I did ask at the hospital and they said that my circumstances led to the stage being 2B - T2N1 but the TNM information suggests different. Your post led me to think about this again.

Best wishes,

Linda

Astra
Member

Re: Awaiting results and terrified...

So sorry you are going through this flyingbrick.

 

I am also, although they said I won't need chemo, but I may need radiotherapy but they won't know until lump and lymph removed and studied further.  My little visitor is 7mm long at time of biopsy it was high grade so I hope its on holiday till the op date.

 

The nurses are good and you can depend on them for support and advice, they do get distressed if they think the patient is, they have told me not to worry its a straight forward procedure and just concentrate on eating well, getting good sleep and generally looking after yourself.

 

I am going for a healing session this Saturday with a local lady, but I think any form of pampering and self care love is so important at this time.  So go out and pamper, sometimes there are local groups you can go to as well, I've not contacted the one near me yet.  I found the information booklets very helpful with local contacts given to me at the local hospital where I am having the op.  Also BC care publications you can download or order and Becca.

 

https://www.breastcancercare.org.uk/information-support/publications/download-order

 

Sending you huge feeling steady thoughts and those of it will be ok.

 

I think looking at it 2 different ways helps, you've got it and it stinks with all the fear anxiety etc and also well its there and when its remove just hoping for the best cast scenario at each stage in the procedure.  It has to go so that you can heal and live a longer happier healthier life.  xox

Jaybro
Member

Re: Awaiting results and terrified...

I’m so sorry you’re having to face this but remember that nowadays most people with breast cancer survive it. You’d have to be superhuman, not just positive, not to be terrified at this early, uncertain stage. I completely echo Annie’s comments. Dr Google is not your friend. Ban it. There are so many cliches - a little knowledge is a dangerous thing blah blah - but the fact is, your emotional wellbeing is going to be of paramount importance in what lies ahead and scaring yourself with data and scientific information which may not be relevant to your particular version of our illness is not going to help. We’re all different. I made a promise to myself to ask as few questions as possible and look up nothing. I didn’t find this site till well into my treatment, timed so that I wasn’t alarmed by the frightened posts but was reassured that I wasn’t alone.  I didn't even read copies I was sent of correspondence between hospital and GP.  I only read the leaflets the hospital gave me on side effects because forewarned is forearmed. I had to get through it and knowing facts made no difference to the outcome - I had to trust, just once in my life, that the experts knew what they were doing. I surprised myself and got through something I initially believed was beyond me. Even now, I couldn’t tell you precisely what my diagnosis was but I’m cancer-free and, once formally discharged, I may look back at things out of curiosity and confirm that ignorance was ‘bliss’ for me.

 

Your husband, if he’s anything like mine, will continue to be your rock but you won’t be able to “be strong for him above all else.” He will be an essential part of your recovery but you will have way too much to deal with, both physical and emotional, without having to pretend for his benefit so be honest about your terror and, if you can, tell him what you need from him. Support is available through the hospital partnerships (often Macmillan) for partners and carers if he is willing to take it up (my husband wasn’t - in fact my own selected-ignorance/denial approach led to minimal fear of the cancer itself and a very positive approach, something my husband could not share - he was and still is anxious for me). It’s a horrible disease that affects everyone who cares about you - but you’ll need every ounce of energy for yourself now.

 

I hope the prognosis is good. Part of the problem is the fear we have of cancer but that can be managed. Breast cancer treatment has progressed in leaps and bounds. It’s brutal and sh** but it works. Do let us know how things go for you. This first bit is, in my opinion, the hardest so take good care of yourself.

 

Jan x

Anniej
Community Champion

Re: Awaiting results and terrified...

So sorry to hear you have joined this club. Although it has a huge membership we’ve all been conscripted rather than volunteered! I know you feel very alone, confused and upset at the moment, but I can assure you that’s very normal. I’m so pleased you had your husband with you, and he’d better get his big boy pants on as you’ll need him in the forthcoming treatment. The team that you are talking about is a multidisciplinary team who will now take over your care, and will look at the biopsy results, type of cancer, stage, grade, your age and general health, as well as family history before planning your treatment. You should have a chance to interact in your treatment plan, but ultimately they are the professionals. DO NOT look up google. It is not a doctor, and any info will be dated. Neither are the newspapers medical journals. This website has excellent ,leaflets which you can download. The topics are far ranging and you can get well prepared for meeting your consultants, as well as telling family and friends. You may not think it, but this bit is really hard on you. Try to stay focused on what us happening now, and not get too far ahead as you will only second guess yourself. Stay busy, and get in lots of treats like visits to friends and family which, unfortunately , may not be so easy once treatment has started. Not kidding that the journey is easy, but it’s doable . Remember that we are living with cancer these days, not dying from it. There are so many treatments on offer now, and hopefully it will soon be like having TB. A life long illness which can be managed. Good luck. X

flyingbrick
Member

Awaiting results and terrified...

I was selected for advanced breast screening and had a clear mammogram. I was asked to attend again a couple of weeks ago. I almost didn’t go as I actually thought it was last year and felt guilty taking a space but I went anyway. As it turns out it was 2 years ago. 

 

I was surprised last week to get a letter asking me to go back for further tests as the results differed. I was absolutely not worried in the slightest and thought I’d be in and out and given the all clear. 

 

I went yesterday and was taken aback when I was taken into a cosy room and introduced to the breast Cancer Care nurse who started explaining what was going to happen and started talking about cancer, treatments etc. What?! 

 

I then had several more mammograms and an ultrasound as a nurse came in and started preparing various medical equipment. I was starting to panic to be honest as this was utterly unexpected.

 

The Doctor then did a biopsy. I’m sorry to anyone who is yet to have this but it was excruciatingly painful. 

 

I felt a distinct change in the atmosphere in the room as they told me I’d be contacted in a few days and get an appointment to see the doctor.

 

I wasn’t going to leave it there so I simply asked what the doctor thought. She insisted that the Cancer nurse come in to the room along with my husband. She sat next to me and put her arm around me and said ‘I’m not going to lie to you, I’m very worried.’

 

I burst in to tears.

 

She hugged me and the cancer nurse took us into the ‘bad news room’! 

 

I can’t remember much except words such as grade, lymph nodes, surgery, chemotherapy, etc. 

 

Apparently the cancer team meet on Thursday to discuss my case and treatment and then I’ll be asked back in to discuss. 

 

I’m so confused! 

 

I’m an incredibly positive person and half of me is thinking ‘right let’s tackle this head on, no matter what it is we’ll deal with it’ and just wants to get on with things. 

 

The other half of me is feeling sheer panic and fear. I’m 50 and reading things like ‘5 year survival rate’ etc just has me wanting to break down and cry.

 

My husband is my absolute rock who I adore but he can’t cope when I get a headache !! so I want to be strong for him above all else. But all I want to do is cry and ask him for a hug. 

 

I went to bed last night all positive and determined to fight this positively. I woke up this morning and felt like I’d had a bad dream, realised it wasn’t and burst in to tears. There’s a constant sick feeling in the pit of my stomach. 

 

The lump is 10mm and underneath the right breast against the chest. It appears most breast cancer is in the ducts, nipple sort of area so I’m not sure what that means for me as I can’t find anything about cancer in this area except recurring cancer after a mastectomy so any help is appreciated on this.

 

I’m trying to convince myself that the results could still be negative but the doctor didn’t even want to hint that might be the case so I’m terrified quite frankly. 

 

Love and wishes to everyone going through this xx