not quite new but not sure what it all means or what to do.

Hello there,

I was diagnosed with breast cancer on the 14th October.
My treatment plan is primary chemo followed by mastectomy and axilliary node clearance.
I had the first FEC chemo on 5th the November.
I was feeling really positive about it all- My CT and bone scans were clear and since I was told they were clear I had been certain in my belief that I can beat this. I was feeling better after the first chemo and even did a half day at work on Friday
Today, I am really scared.
I received a letter I was copied into from Oncology to my GP outlining histology and treatment. It is so very real.
Histology: Grade 2 Invasive carcinoma + DCIS. FNA minor axilliary carcinoma.
I feel a bit helpless and tearful. Everything tastes like soap and I cried on the DLR today because I thought I was going to be sick.
I know it is early days - it is just a bit overwhelming some days- today.
Any words from the wise would help.
S

Hi there,

I’m 18 months further down the line than you and reading your post brought back lots of memories. It won’t feel like much comfort now but what you are feeling is perfectly normal. I had much the same treatment you are facing and at the start I couldn’t believe how much it took over my life or that it would ever end. No point in pretending the next year won’t be hard but you CAN come out the other side. I’m back at work and putting my life back together. It took a while but I even plan for the future now.

If I could give you just one piece of advice to help you get through it would be to let other people help. I found it very hard at first because, like most women, I’m used to being the one who just copes. Once I accepted that I needed help things got a bit easier.

best wishes, Jan xx

Hi avenuesue,I was diagnosed 3 years ago the same type as you grade2 with some grade3 DCIS and a positive lymphnode I had surgery first then chemo 3FEC 3TAX then rads.I had the same feelings, positive one moment then overwhelmed with fear the next.I was looking at my pathology report the other day and thought did I really have that.I had my yearly checkup on thursday and everything as far as we know is good.The treatment is hard but as janb says you will get through it.Be kind to yourself and take things easy.

Best wishes Melxx

Hi S,

Your post brought back memories for me too, i was dx on the 5th of January this year, MX then 4 AC chemo. All i can say is “you do cope” honest, you’ll get there - nothing is for ever as they say. Take 1 day at a time, slow the world right down for as long as it takes. Yep - emotions all over the place, still are a bit. I had lots of reiki on the lead up to surgery and chemo, think it helped me keep calm (relatively) Always here for you if you need to talk - just shout!

Lots of cuddles

Lynn
x.

Hey, we share a ‘dx day’ - mine was Oct 14th too xxx My treatment was mx first, which was yesterday, I find out next Friday what lymph involvement was (I had to have a clearance as u/s was suspicious and FNA inconclusive), and what grade I’ve been assigned.

Tearful and afraid is perfectly normal and understandable - and I just wanted to send a massive heartfelt hug. I have occasional ‘lucid’ moments when it is all so very real, and my eyes leak of their own accord - and remember, you’re doing chemo on top of it - whatever emotion you have is going to be ok, so hang on in there.

Can’t give any advice, just sending love

Sophie xxxxxxxxxxxxxxxxxxxxx

hi there
My dx day was the 11/9 and have had a WLE and axillary clearance on 4/10. Start FEC x 6 on 26th Nov.

Most of the time I am ok with all of this, but then it comes up and hits me from behind, totally overwhelming. I am really positive about all of this, but it is tougher some days rather than others.

I have found really hard to sit back and let people help, as I am normally the helper, but due to slight complications after the op, have had no choice. It also makes those around you feel like they are doing something positive to help you through all this, so works both ways.

Don’t beat yourself up for feeling the way you do, it’s fine and more than normal.

Big hugs

SJ

i can certainly relate to that and what you feeling i remember going to collect my 1st sicknote from Gp and when i came out and saw Breast cancer written on it i sobbed uncontrolably because it then became so real .I was the same when sent a copy of diagnosis it all sounds so real and scarey but Im sure your surgery and chemo will go well and we do cope and move on and definately agree start planning again xxx Hugs Julie

I also dreads brown envelopes through the door usually means a letter from the hospital. I also felt it all surreal when sick note given with dx. awake every day hoping its all a nightmare but think how to get through another day. welcome the night when I can sleep with the help of sleeping tablets.
due 3rd fec on thursday so far no great side effects.

The sick note thing is surreal - I got given mine before I left the hospital yesterday morning. I’d vaguely said ‘two weeks or so’ to work, uh huh… sick note is for 6 weeks!! Actually, feeling how limited the movement in my left arm is, 2 weeks would have been extremely optimistic! 6 weeks takes us up to Christmas…

Think my boss was more realistic, she said ‘don’t worry. We are anticipating you won’t be back this term, if you are, it’s a bonus’. Have to ring her tomorrow!! The boss of my evening job may be a little more taken aback.

The weirdest thing is that I should feel ill, if I’m being signed off! I know I AM ill, I know I am uncomfortable and really can’t do the job I’m paid for right now, but dammit, I feel so well in my head!

I actually slept for six hours last night, six hours solid - first time since dx. Must be exhaustion after only dozing in hospital!!

Hope you are all doing well, and having a ‘good’ day today.

xxxxx Sophie xxxx

Hi sophie, I too felt wierd when I was dx as didn’t feel ill. In the end I got my head round it by thinking I have a serious illness but I am not ill, well unti Chemo kicked in!

Vickie

I know, Vickie - I shouldn’t be saying ‘I don’t feel ill’ just yet, should I?!! I just know something’s going to come back and bite me on the bum for that comment…

Hope you’re doing well - whereabouts on this treatment voyage are you?

Sophie xxx

Sophie ive been signed off since March ( diagnosis) cos im a nurse on isolation unit so my Gp wont sign me off untill all treatment finished and a couple of months recoup ( cos of immune system being so compromised)so im not back untill after xmas and new year 9 months in all x i havent felt ill at all but my workplace knew why i couldnt go back i think it will be the same for you cos i think you work with kids dont you ??? always full of coughs sneezes and bugs ha ha

The infection risk side of it hadn’t occurred to me at all, but you’re quite right - I work in a kitchen at a boarding school for 11-19 year olds with aspergers syndrome - so always a lot of coughs and sneezes around! That will be something to bear in mind… though of course I’m still hopeful I might just avoid chemo…

I think I just focus on what’s happening right now, so I hadn’t got any further than thinking that I’ll never be able to operate the dishwasher…!! (It’s one of those industrial lift up things that you have to swing up with your left arm and pull the tray out with your right… and I’ll have to rethink that mode of operation now, which may slow things down a bit when I get back to work!!). Plus, there’s all the pans of boiling water, trays of food… hmmmm. Can anyone say lymphodema? I am soooo going to have to be careful. But I looove my job!!!

Sophie xxxxxxxxxxxxxxxxxxx

I am also a nurse signed off sick because I work in a minor injuries unit where alot of infection risk.I am going bonkers being at home all the time trying to occupy my mind.walking lots .trx going ok trying cold cap hair thinning now.Anybody else dx dcis grade 2 4 nodes.Having 4 fec and 4 ?taxol.

in need of some hugs xxxxx cath

Hi, I am now 18 months post op, it all seems very odd now, back at work coping ok, but emotions vary, I have just cleared out my breast monster drawer of all scalves, booklets old appontment cards, must agree with you , it reduces me to tears when I see the diagnosis in print, it makes it so very real ,

take care you will get there x

Hi there everyone.
Thanks very much for your supportive replies. I did try to post a reply yesterday but not sure what happened to it.
I was having such a bad day on Saturday and it helped so much to post for the first time. The phrase ‘invasive carcinoma’ in print- referring to me- this threw me as I had been feeling better about it all. I think sometimes about not having the mastectomy first - out of my hands- don’t know if it is for the best or not. This lack of control over my own body is tough… the betrayal.
Also like Vickie and Sophie I felt really well until the stress of it all gave me insomnia. Sleep is back to normal now but the chemo is weird- I felt so well before.
Sunday was much better- Baked with my four year old and took a steroid which helped the nausea- meant also that I could eat our attempt at blueberry muffins. Normal day- really good.
On the work front- I went in on Friday for a half day: my colleagues have been amazing; I work in the public sector which helps perhaps as far as time off is concerned. Unfortunately my job has been deleted- a restructuring. From March I will be unemployed. I need to look into redundancy packages which gives me something else to think about and perhaps another battle to fight.
You guys helped- so very much- I went to bed last night feeling much more positive and feel I can do this. Thank you.
Is anyone else out there having primary chemo?

Hi avenuesue

Me! I’m a chemo first lady and your initial post echoed in my mind. Everything seemed to just spiral out of control and to find all four of my sentinel nodes were affected was a total shock as the inital core biopsy shown no indication of spread (back in June).
I’m 3/4 through treatment now and finish the Tues before Christmas.

Feeling pretty rough at the moment (it’s the TAX bit now) and not been posting but saw your question on chemo first and couldn’t not reply, doesn’t seem many of us about so it is a bit scary and I’m still kind of confused about it all.

Hope all goes well for you; I did find the "one day at a time " helps me to stay calm (most of the time) and having a new teenager (with ASD) around certainly keeps my mind occupied!

Denise x

Sue - there are quite few ladies here who are having or have had chemo first - but they may not see your question on a thread with a different subject. You might have more responses starting a thread on it - it is nice to be able to chat with those in a similar position.

finty xx

Hello AvenueSue,

I was a chemo first lady- 5 years ago.
At first I was in total shock, ok one minute, very tearful the next, felt sick, dizzy, didn’t want to eat. I took it one day at a time- even one hour at a time when I felt pretty rough. I wasn’t able to work at all throughout the treatment; but I decided that my health was first and foremost my priority. For me that was the right decision.

But I got there and now I am in remission. My advice to you is be kind to yourself- take it gently.
We are all here to support each other on this site. I found it to be invaluable and so many ladies on here helped me- and I know that they will help and support you too.

loads of hugs coming your way.
lambkin xx