Confused

You have certainly come to the right chat room. There is a wealth of knowledge and lots of support. I was diagnosed with DCIS and had a mastcetomy nearly five weeks ago. Im grade 2 invasive ductal cancer. I was shocked at a tumour being found and now need chemo. Oncologist telephone consultation on 24th April, Awaiting Her2 results and bone and ct scan results. Being diagnosed with bc is a hugh shock and not something anyone gets over. I think back to Christmas when I didn't have a care in the world then this happens. I have found many friends on this site who are all very supportive. Be strong, you can do this.

Linda x

Hi, 

     Sorry to hear it’s all so overwhelming. I got diagnosed in October 2019 grade 2 invasive Ductal carcinoma. I’m her 2 positive and er positive. I got chemotherapy first it’s called neo-adjuvant chemo to try and shrink the tumour and stop it growing. I had 4 cycles October to Jan then lumpectomy in Feb. My tumour had shrunk from 28mm to 20mm. I’ve got a bag with all the booklets the breast care nurse gave me there’s so much information to go through but I do refer them a lot. Also lots of advice from this site 

Grunchy

xxx

Hello ......Sorry you've found yourself here but we'll help with the confusion as much as we can. You can ask what you like, rant, cry , laugh....day or night( awake thread). ...there is almost always someone here who can empathise, share, or simply listen( figuratively speaking!)

So for the moment it is particularly difficult for you because it was such a shock. I found myself in very similar circumstances.....a routine mammogram found three small tumours and the biopsy identified them as triple negative.  If your tumours are identified as negative, it simply means you won't  be given hormone inhibitors like Tamoxifen or Letrozole because you have no oestrogen to inhibit. I actually had my lumpectomy first and only after the tumour was analysed was the chemo/ radiotherapy protocol decided upon.

But these are strange times. Just be certain that whatever the oncologist recommends tomorrow will be in your best interest taking the Covid19 into the equation. For example.....you would struggle with the virus if by having chemo your immune system was depleted. No one knows in advance how you will react. Everyone is different. I could tell you how I reacted and ten people would reply with a variation. So the oncologist will make recommendations on your particular situation at this time. If your treatment is delayed, it will be because the oncologist thinks this is the best option. In some areas specific hospitals have been designated for cancer treatments. Many people wait a few weeks before treatment begins in normal times if we add up all the time between tests and consultations so don't let any waits panic you. It probably won't effect the speed the cancer is growing. However, I would recommend you isolate yourself as much as possible over the next few weeks. The healthier you are, the more successfully you will recover from whatever treatment is planned.

Finally, here I am writing to you....triple negative....but having had no cancer since my lumpectomy in October 2015.

I am sure that however unpleasant some treatments may be, you will eventually feel lucky that the mammogram found the tumour and it could be dealt with.

Take care. Stay safe. Love Karen

Thanks Karen, I have been told that chemo will start within the next 3 weeks. I have had COVID19 ironically my symptoms started the day after my 1st biopsy (it’s been an eventful few weeks) it knocked me for 6 but I was lucky I lost my sense of taste and smell which is slowly coming back part of me feels that was a small prep for chemo !! I had to receive my diagnosis over the phone as I was self isolating at the time. Strange times I’m hoping I may now have immunity but know one knows do they? 
I am honestly feeling lucky that my C card is ‘treatable’ I’m a police officer so struggling that I’m unable to do my bit at this tough time but also being sensible and staying home xx

I got my news that I was TNBC, I'm 47, at the beiining of March, it really is scary and overwhelaming. I keep thinking back to Christmas and New Year when I didn't have a care in the world, now the big C seems to take over my life.

I've had my 1st round of EC, which I came through with only a few side effects. My sencond one last week was cancelled due low bloods but hopefully it will go ahead this week but will know more when I have my bloods taken tomorrow.

I'm having 4 rounds of EC fornightly followed by something else 3 weekly then it will be lumpectomy and then radiotherapy. That is if nothing comes back from gentic testing......

My hair is all but gone now, which has been difficult but I keep reminding myself its temporary. I find I'm wishing for Christmas to come in the hope most of this nightmare will be over.

Take care x

Hey 

thank you so much for sharing it’s a head ness isn’t it ? Complete life changer. I’m trying to be logical and have ordered a few head covering items in preparation for the dreaded hair loss. Bad enough that this is happening never mind loosing hair to boot. Roll on Christmas 2020 !! 
I know it’s a treadmill of crap that I know I’ve got to get on, it’s hard when you’ve no symptoms and feel fit and healthy. I feel like I’m about to make myself ill to get better. I’m sick already ipeople telling me I’m ‘lucky it’s treatable’ not feeling so lucky myself

thanks again for making contact 

Jules xx

Hi Linda 

Thank you for the response, it’s amazing me how different everyone’s treatment is. I’m told I’m having chemo 1st then lumpectomy (reduction and uplift I have been trying to make light of that and have requested a pair 25 years my junior!) again being told I’m ‘lucky’ it’s treatable and I’ve big enough boobs to have a lumpectomy doesn’t make me feel ‘lucky’ I still feel like I’m typing about someone else. Receiving this news on 31st March meant I couldn’t go and get a hug from friends/family it’s tough hey. 
I hope you’ve had support surrounding you over the past 3 weeks especially so soon after your op xxx

I have a few head covering which I started to wear yesterday. I really need to shave what’s left but keep putting it off. 

I hear the same too. I don’t feel lucky and am struggling watching everyone else’s life carry on as normal, where as I’m not sure what will be normal for me every again!

thanks for replying 

Clare x 

Welcome . and you are not alone.  I'm 5 years down the line -see my profile by clicking on my name .  
You may feel angry with the universe and whole family and friends think being positive and business as usual is the best way to help you is so irritating as it feels like they are trivialising your cancer.  It’s a huge deal being told you have cancer even though for breast cancer the prognosis is very good for the majority.   You have to let them know you are struggling.  Next time they ask how you are don’t say fine.  Say ‘well actually I feel physically quite well but mentally I’m struggling.  Hearing the C word has freaked me out and it’s consuming my thoughts day and night.  I’m struggling to sleep and I’m angry that I’m in this position.  I’m sorry if I’m not great company but I really need to allow myself to come to terms with my diagnosis. I know treatment is effective but the worry is still there.’  Then thank them for listening and say how good it is to open up.  Even have a little cry.  Try to stop them interjecting and stop trying to make them feel better about your diagnosis.  This is your grieving time for your old  pre cancer life.  You will have a good post cancer life but it will change you xx  

Jules,
Hi, regarding your query of how best to use this site for effective support thought I'd give you my input, may help you get more sooner from this fantastic website. I've been on this site since autumn last year, following diagnosis.

I'd suggest
- fill in your bio, the "about me" bit on your personal profile, this helps others know where you're at in your journey/treatment and enables us to give relevant support/advice
- given you're shortly going through chemo the chemo monthly thread (currently ***April BC chemo club 2020*** - this will always be one of the top 2 threads on first page of discussions within breast cancer group). There's some great top tips that have evolved over time on the opening page (from dreamthief) which will really help, and you can chat to people in a similar position, make friends, see how they're doing, share ups and downs, rant, moan, have a laugh and lots of other emotions.
- have a look through the relevant on line resources
- when you need to mail/call the nurses or specialist advice macmillan staff for support from the experts
- if you want to know if, for example, others underwent the same side effects you can search within the breast cancer group

Nothing is wrong, no questions are stupid, you'll find everyone very supportive both practically and emotionally and it's great to know there's others going through what you are and that you're not alone in that respect. You'll be, as I am sure you already are, glad that you joined (despite the reason for doing so being a pile of s***).

Good luck with everything.

Sam