Newly diagnosed, scared and bewildered

Hi and a very warm welcome to the online community

I'm sorry to hear that your breast cancer has spread and you're suffering with mouth ulcers and pains in your chest. This sounds really horrible so I can understand why you'd want to connect with others who might be able to share similar experiences with you.

I noticed that your post hadn't had any responses yet and that it had slipped down the page. By replying to you it will bump it back to the top of the page where it'll hopefully be seen by someone who can help.

I'm also tagging this group's Community Champions and GRANNY59 as they may have some experience with this or be able to point you in the direction to get further information.

When you have a minute it would be useful if could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi Alstev welcome to the forum.

I suspect but not 100% certain that some of what you are describing is as a direct result of the medication you are on and tumour flare as far as I'm aware is the response to the medication that can leave you with symptoms  but again not 100% sure.

In saying that it might be worth you having a chat with either the hospital or the GP to discuss what options there are to alter any of the drugs worth at least asking.

Hi Alstev 

I am on similar treatment to you and I’m on cycle 5. It is all very scary and I’m still very new to my diagnosis and still trying to accept it or make some sense of it! This is a first time diagnosis and it was straight to secondaries so a massive shock!

You are not alone and there are a great number of people on here that can offer support as we know how this all feels!

Stay strong and stay positive x

There is a positive story feed that is worth reading! This helps me feel better when I’m having a wobble! Xx I’m not too sure how to tag it or add it on here though!

https://community.macmillan.org.uk/cancer_types/breast-secondary-cancer/f/breast-secondary-cancer-forum/186433/positive-secondary-breast-cancer-stories

Hi ,  - above is the link to the positive stories thread mentioned above. I hope it brings you some hope. There are plenty of stories of survival. We are living with it, not dying from it:

Hi  Jo6,

Great to hear from you.  I am struggling to find my way round this forum, so apologies if I have put my reply in the wrong place.

It must have been a huge shock to go straight from blissful unawareness to secondaries.  I am having real trouble accepting it.  My coping strategy first time round was to write every step on a calendar and trust that if I did everything I should then It would all work out okay by the end of the treatment.  It more or less worked.

This is totally different.  I am completely at a loss to know how manage it, but I will get there.  

Good to have contact with someone on the same meds.  I am almost at the end of my first month and they briefly stopped me taking it because I was having chest pains, which turned out to be unrelated, but I haven't been told to carry on.  Waiting to hear.  

Thanks for the positive stories link. Good to see,

Take care 

Hi

Thank you for the link and thank you for trying to keep the positive story thread going. It has really helped me to stay more positive in this whirlwind of life!

Hi Alstev

I am here if you've any questions. I’m just a few months ahead of you with treatment but if I can help in any way.

It is all very difficult I know. I have bad days and then better days with my emotions and I feel that this cloud is always there and I hate that cloud! I am also at a loss to how to manage and I‘m not sure what I should be feeling and I’m unsure what I should be doing (although with this virus.... I know I’m staying in!!!)

When people refer to things being like a rollercoaster I now know exactly what that feels like (and I hate blooming rollercoasters lol)! My diagnosis was a huge shock to me. My mum and sister also had breast cancer but I thought we were done with that side of things and then BOOM! It slapped me right across the face again! I find that from caring for someone who has had cancer in my family and being their support, when it actually happens to you, there are a whole wave of completely different emotions and understandings. I now understand what they went through. As supportive as members of your family are, they don’t understand what you are going through and how your mind thinks! People on this forum do and it’s good (although unfortunate) to talk to others that are going through similar emotions! Please stay in touch!

Hi Jo6,

Thank you so much for replying to my post.  I was feeling completely adrift.   I lost my dad to cancer just six months ago, and three months later, it was my turn again.  I've been struggling with it, lots more I want to do with my life.  Now, the virus has turned everything upside down and it seems to be unchartered territory for us all. 

I am now on my second cycle, and naturally wondering whether my CT scan is going to show any improvement.  It's a long way off yet, but I can't help thinking about it.  I'm also scared to venture out for my blood test etc but there is no choice really is there?)

If you don't mind me asking, did your meds work straight away or have you had to change them at all?  Do they show you what is happening on your scans?  

Hope you are managing to stay safe.

Take care

Hi Alstev

I am sorry to hear you lost your dad. I lost my mum 3 years ago and my sister has went through treatment for breast cancer.

Ive been on treatment now for 6 months and my recent scan showed no more progression of disease and some healing of the bone so that was a bit of good news. I’ve always been on the same meds but everyone is different and it’s about finding the right meds for you. My oncologist is changing my bone injections to liquid form or something- I’m picking up today but not sure if it’s because of covid19 and if it’s to keep me away from the hospital! That’s been the only change after 6 months.

I asked to see my scans- not that I could make sense of them but she did explain -I don’t think they can deny you as you have a right to see any information they have on you. Whether they can bring or access the scans on their machine in whatever room you are in is another matter but surely ask if that’s what you want!