Help !!

Hi ladies , i was diagnosed with breast cancer about 6 weeks ago now , initially they told me it was one tumour but then said there was 3 , i had a mastectomy nearly 3 weeks ago and was told 2 days ago it was in fact one large tumour of 112mm , they took out 4 lymph nodes and apparently it was also in the first 2 .

Today i have had a CT scan , i’m petrified this nightmare is never going to end.

My mental health was bad before this and now it is unbearable .

I’ve been told i will definitely need chemotherapy and radiotherapy , i have 4 beautiful children and an amazing husband and i can’t stop thinking i won’t be around for them , I’m so frightened .

would love to speak to anybody who has been through this or are going through it now xx

Sending you the biggest hug dear Linda.

You must be in a complete state of shock, what with diagnosis and surgery in such a short window - which is good, but your head will need to catch up with yourself.

There are lots of lovely ladies who I am sure will come and help you with all your questions and anxieties, and if it is quiet at the moment I am guessing it is because of a bank holiday weekend  -  and bank holidays and weekends are the times when we can feel really lost and alone.

It will end, but I am sure others have already said that it is truly a day at a time.  It may not feel like it right now, but you have been diagnosed and had answers and surgery quickly, and that is a bonus, rather than to be left waiting and waiting - especially at the moment.  So hold on to the positives of the bad situation.  You are now in a place where you have had some answers and you can move forward.  And you will, with your lovely family around you.

I had a diagnosis 2 years ago, and had lump removal and lymph node removal (1 positive lymph node) followed by 4 weeks of radiotherapy.  So nowhere near as drastic as your situation, but I remember how it dominates every thinking moment. 

Wish you better days - and there will be xx  Paulus

Hi Lindaj76,  welcome to our lovely forum but sorry you find yourself here.  If you want a similar story with a survivor then please read mine lifeafterlola.com/ 
My tumour was still 90mm after chemo and had spread to 9/12 lymph nodes.  It was diffuse before chemo and in the chest wall.  I had a non skin sparing mastectomy and all of my nodes removed.  It’s a tough regime but it’s all doable and life on chemo is similar to social isolation so you’ve already had a bit of practice.  You can join the monthly chemo thread once you have your date to chat with others going through the same.  I found this really helpful and still keep in touch with my chemo buddies.  Feel free to ask any questions or have a rant or a meltdown away from your loved ones.  Hope this helps a little.  I know it’s hard to absorb.  Best wishes. Xx

Hi Linda

I’m so sorry you’ve found yourself in this vile situation - that was me 18 months ago and I’m still here and recovered. It’s a very scary world to get sucked into and I found myself with severe anxiety a few times but my surgical and later my oncology teams bent over backwards to help me. I made a decision to just trust them and hand myself over to them, which is very unlike me. I told them all my fears and expected solutions - and got them! It worked very well for me.

Quick bit of background - I had two tumours and a skin breakout (after a clear mammogram!), so I had a full mastectomy and axillary clearance. 19 of my 21 lymph nodes were found to be infected. My CT and bone scans showed no further spread and then I had 18 weeks of chemo, followed by radiotherapy, with Zometa infusions every 6 month for 3 years and hormone therapy for 10 years. My most recent MRI showed no cancer anywhere. I am probably a lot older than you (68) and don’t have your family responsibilities. I have had chronic mental health problems, including a phobia for vomiting, since adolescence so I did have a few panic attacks initially. 

Try not to get bogged down in what I call cancer language (Ductal? Lobular? Aggressive? What difference does it make except to scare the wits out of us?) and definitely do not Google anything - it can be disastrous because it’s all general, not specific to your unique situation. Don’t start predicting life expectancy - statistics are pointless and very alarming. If you have questions, ring your team or ring the nurses here at the number above. They are incredibly reassuring and very knowledgeable.

There is nothing you can do to change your diagnosis and your treatment plan (unless you choose to disagree with your specialists for particular reasons, as very occasionally some women do). So, all you can do is accept it and get on with it, knowing your team has your best interests in mind. You have an amazing husband, who you’ll need every step of the way. 

Chemo isn’t necessarily as bad as we fear. Given my phobia, I was terrified, but I never felt sick or was sick; they have all that sorted now. Some women sail through it - one woman posting earlier this week had carried on working and been away on holiday. Other women, myself included, are knocked for six and feel like zombies much of the time. Most are somewhere between and you have no idea where you’ll be till you start it. The actual treatment is fine - people sit and chat to each other. In the good old days before social distancing, everyone had a friend with them and only once in all my treatments did I see someone feel poorly, and she was dealt with very quickly. It’s once the steroids wear off (day 5) that the real effect of the chemo is evident.

What I want to say is that it’s all doable. They describe it as a rollercoaster ride and I think that’s spot on. Emotional and mental wellbeing are a huge part of it. So you need to take active steps now to deal with the anxiety and fear. Some people already have their own methods, like mindfulness or running. Personally, I found YouTube was my saviour- there are videos you can plug into that will help with relaxation, insomnia, anxiety… my favourite was Progressive Hypnosis’ Manifest Healing. She saw me through some tough times and I still plug in my earphones regularly. Don’t ignore how you’re feeling. If it feels unmanageable, talk to your doctor or your team - these are exceptional times for you and they will know how best to help you. Don’t be fobbed off with ‘every woman feels frightened’ (as one GP told me) if you know your fear is unmanageable.

I’m sorry I can’t be more upbeat and encouraging - the whole situation is sh*t. But, like I said, it’s manageable and there are thousands of women using this site who bear witness to that fact. I hope your CT scan results are good and you can start your chemo soon - but do be ready for lots of waiting. Waiting for test results, waiting for appointments, waiting to see a doctor, always waiting. All the best,

Jan x