Not a good day

Hi Bev

Hugs on your bad day.  You will have them from time to time I'm afraid.  But you will also have better days.  Breast care nurses don't usually work weekends but hopefully they will phone you back tomorrow.  They should be able to talk to you about everything.  I have just emailed mine this evening as I too want some advice but my issues are complicated and easier to write it down!

Try not to worry too much.  The majority of scans show no other issues.  Despite having lymph involvement (4) I was never offered any other scans (having them now as having other issues and they need to rule of secondaries).  But I think all hospitals are different.

It is hard on our families as well as us.  And we often try to keep cheerful for them.  But sometime you just need to cry and cry and then dry your tears and try and lift yourself up.  Try and find some lovely things to do.   

Hope breast nurses ring and help tomorrow.  In the meantime more hugs xx

hi Bev    

there's not much I can think of to say to stop you freaking out but statistics are in your favour. If you like statistics that is.

In my case we knew, because we could see it on the scans, that I'd actually had a suspicious lump in 2012 and it had grown to a sizeable 65 mm by 2015.

The surgeon was incredibly factual, he said we can only tell you what our reports tell us and to presume anything would be wrong but from everything I can see and knowing what we know, it is quite likely you'll be upgraded from DCIS, stage 0, to at least stage 1 or 2 post surgery and he was right. I had to wait almost 6 weeks for surgery and obviously Googled myself into a frenzy in that time, actually that's not strictly true, the most frenzied Googling and the deepest pit of despair was actually the first weekend, I couldn't find anyone anywhere who had a 65mm lump who wasn't stage 4 and there was a lot of 'I thought it was just a twinge in my back and wham, stage 4 breast cancer'  

to say I was glum was an understatement .  

I went off shopping and bought some headscarves, convinced I'd be told I'd need chemo to start immediately, so DCIS was incredibly good news and that's why the team were all smiles when they were telling me, that was a very strange experience indeed, someone beaming at your whilst telling you you have cancer ...

 I had had my suspicions, I'd visited the GP dozens of times during 2011 and 2012 but because the breast report said "clear" we didn't think to question it.  I had a patch on my eye which wouldn't clear up and part of me still doubts that they've diagnosed me correctly 

But I'm still here.

My stats said I was 25% likely to be upgraded to IDC rather than DCIS in the post surgery reports but because I we knew I'd had that lump since 2012 I was much more likely to be in the 25% than not. 

If I'm honest I was glad that after 3 years of frustrations and being told it was just my age or my hormones I had something actually wrong that could be sorted, although I really really didn't want chemo. 

The post surgery path also showed Her2+++ which almost always requires chemo and at that point they couldn't get me to the imaging section quickly enough, I had all the scans in one day, that was a blast, literally, I had a cannula fitted and embarked on nuclear, radiation and magnetic scans. Thankfully all were clear, but they didn't scan my head and I still wonder why they didn't do that.

Apparently you'd get terrible headaches and I hadn't so it wasn't deemed necessary .

I guess I have to say I was incredibly lucky that in those 3 years it hadn't engulfed me, yes, I did have symptoms and yes, I did know something was wrong but none were the classic signs and symptoms you see on the posters. 

I felt uncomfortable, my clothes irritated me, nothing fitted and I was miserable or rather vaguely unhappy. But they'll tell you that's just the menopause. 

More tellingly I had a twinge like a piece of cotton tugging between my nipple and my armpit and that's when i insisted on the breast screen.

that and a premonition I wouldn't see Christmas, which oddly enough everyone did take seriously. 

87% of women are diagnosed with stages 0, 1, 2 or 3 and only 13% with stage 4. 

https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/breast-cancer/incidence-invasive#heading-Three

I'm going to say that is all women of all ages, how old are you ? A disproportionate amount of the immediate stage 4 diagnoses are going to be younger women because GPs tend to look at anything other than breast cancer initially because it's a lot more common in the over 50s.

when I was under 50 I was told 'impending menopause', the minute I hit 50 they all tipped their heads on one side and said 'breast cancer'. 

But like I said, I had had a mammogram and it was reported as 'clear', obviously I kick myself for not insisting on a follow up ultrasound, I'd been told my lumpy dense breasts would need ultrasound as well as a mammogram .

Anyway, I'm still here .  I've waffled on, if you feel the need you can always call your GP for a prescription for lorazepam, it worked for me.

If you do want to Google stick to CRUK, Macmillan or other reputable sites. I exhausted them all but didn't see any mention of DCIS. 

Reading my essay will take up some of your time  

hugs

Carolyn

xxx

Hi Carolyn 

I don’t mind you writing essays for me to read , I’m finding every bodies response on here is really helping me , I love to hear every bodies stories they really do help me , not had a good day today been upset quite a lot , overthinking . I got told I had breast cancer when I went for my mammogram she knew we could see it , she showed me the four different lumps . I’m 42 by the way . 

I’m hoping I get that call tomorrow to go have my ct scan then I will have to wait a few days for the results . 

What is lorazepam and do they help ? I do feel like I need go to doctors coz of the worry of it all 

hugs 

bev xx

They forgot to give us all the road map or the manual 

So hardly surprising you / we have major meltdowns 

So no beating yourself up

Sit back in that moment and breathe

Leolady56

Hi Bev

anti anxiety meds, they're dependable and reliable but they can be addictive so they don't like to prescribe them but in this situation they can and I'm sure they will. 

Since you have been diagnosed with breast cancer you can have free prescriptions for 5 years, which means rather than writing a prescription for 50 they can give you 5, therefore no chance of getting hooked.

Lorazepam, Oxazepam and Temazepam are all metabolised in the gut rather than the liver, my GP grabbed his medical book to check this fact, then smiled broadly and said "you're right" ... numb nuts

They are from the family of benzodiazepines.  Like Valium, which is diazepam, but that does metabolise in the liver. 

I found out by complete accident, I was in Spain and I had the worst head cold ever, I was seriously thinking to call up my medical insurer to get me airlifted home. I couldn't pack the cases, with my two youngest at 12 and 5, each time I bent over my head felt like it was going to burst, it was all down to my sinuses. I was in agony. 

I grabbed the youngest and went to the pharmacy leaving my daughter to make an effort at packing. 

All I wanted was paracetamol, bizarrely I couldn't find it in the shops and I'd run out, it actually worked at killing the astonishing pain, aspirin wasn't working.

The pharmacists didn't understand me and handed me antibiotics for the infections and tetrazepam, which I'd never heard of and isn't available in the UK, I still don't know why, perhaps he thought I was bonkers and needed sedating. 

anyway I downed a handful and headed for the airport, I was in so much pain they had barely any effect and after the required 30 mins the hostess handed me a paracetamol and I relaxed. 

Turns out they are used as a muscle relaxant as well as anti anxiety but lorazepam seems to be more popular, useful if you're nervous in the CT scanners or for me with cannulas .

Got to move because my arse has gone to sleep. 

Carolyn

xxx

Hi Bev,

I just want to respond to your query about lorazepam.  I am currently taking Venlafaxine which I started on when my hubby was diagnosed with cancer nearly 2 yrs ago.  I'm on the lowest possible dose and feel that it does take the edge off.  Venlafaxine is also helpful for menopausal flushes so is a good one for me now that I have had breast cancer treatment. 

Myself and some colleagues at work have taken anti depressants in the past such as citalipram and sertraline and have had no problems coming off them.  I would think carefully about diazepam etc.  As a nurse myself they wouldn't be my drug of choice.

It would be helpful for you to discuss options with your gp and discuss how long you envisage taking them for and how you would discontinue them when the time comes.

As I say, Venlafaxine has certainly helped me and although it isn't one of the easiest to come off, I'm not worried as I'm on such a small dose and I'll taper them off slowly on advice of gp when ready.

Gail xx

Thankyou ladies I’m going to ring the doctors today , it’s monday it’s a new day and a new week ! Head up shoulders back and smile  

Bev xxx

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