Newly Diagnosed and Scared

Hey West End Girl

Welcome to the merry-go-round.

First thing - breathe. This is the worst time, waiting for results. Once you know what you're dealing with, it does get a bit easier.

Mine was 4x3cm when I found it - came up really quickly. And one node had a 1cm tumour after chemo. My diagnosis was over 3 years ago, grade 3 HER2+. I did chemo, surgery, radiotherapy and still here.

The scans are fairly routine, they need a full picture before they decide on your treatment, as it is quite personalised. HER2+ isn't the scary thing it once was, due to Herceptin and now Pertuzumab as well - success rates have been nothing short of astonishing.

Stay away from Dr Google, please, as he is out of date and plain scary. And often wrong. Stick to sites like this one, CRUK and so on.

I'm sure you are in need of hugs - so here's one to get you started

Thanks so much, it is hard not to Google when having to wait for information but you just want all the answers now! I guess I just want to hear good stories like yours, which might be similar to mine, so I think I have found the right place. Good to hear what you said about success rates....I'm looking forward to being astonishing!!! :-)

Hi West End Girl

I know you would rather not be here but welcome . So glad you have found your way here. 

You can read my story on my profile .like you I'm still in shock as to where I find myself .

No lump to be felt ,found or showing on ultra sound , but here I am three weeks on from a mastectomy and diagnosed with HER2- positive . Oncology appointment on Monday scary time ! For treatment plan .

you will find the waiting in between appointments,scans etc the worst part . It can become easier once we know what we're dealing with . 

This is the place to come and ask questions,scream,rant cry and even laugh . Whatever it takes at the time to make you feel better about what is happening . There is always someone here 

Thank you Margaret, you're right I just need to know what I'm facing. I want to be told that the other scans are clear and there is no spread, that is my main worry at the moment. But I feel well so hopefully nothing further to be found. I have already read many positive stories here so yes I'm glad I have found you all.

Hi West End Girl,

Your story sounds just like mine ! I found out on Wednesday 31st that I had a 5cm grade 3 lump and still trying to get my head round things. Like you I feel really well and when lump was discovered by routine mammogram it didn’t seem big and I never imagined it would be so large as it doesn’t feel that way. I have been told that the possible treatment is neoadjuvant chemo to reduce the size of the lump, then surgery then probably radiotherapy but will only find out definite plans on 13th. Some of the results from the biopsy had not come back - think it was if it was positive or negative. Next week I have to go for a bone scan and other tests too. I feel in limbo land as I have been told I have cancer but don’t really know what is going to happen and feel I’m starting out on this huge learning curve. I find this waiting on appointments and results is very stressful and my mind is in overdrive and find I am waking up during the night. Before this my head hit the pillow till the alarm woke me up !!

The one positive thing I was told is that it hadn’t spread to my lymph nodes so hanging on to that. They assured me it was testable but like you I just want to get on and fight this. 

So we are not alone and it does help to share and hear others face treatment so bravely and to hear stories of ladies who have come through the treatment.

So stay positive and we can share our journey.

Jojodot

Hi Jojodot, it does sound like we are in a very similar position. I have a small amount of spread to the lymph nodes and my main worry now is that it could be HER2 + and that means it is more aggressive and could have spread further. The nurse said there's no reason to believe that is the case as it can sit in the breast and not move. I should have that result on Tuesday, then just want to get the scans done and know where we are. Sounds like we both have a busy couple of weeks. Let's hope there is some good news for us both xx

Hi West End Girl,

How did you get on at your appointment on Tuesday. I find waiting on these appointments sets your imagination on fire so hope everyone was nice and you got positive news. And now know more about what the plan is.

I have to go Tuesday 13 th for final diagnosis so had a liver scan, a chest x ray and a bone scan last Thursday. They were ok but the bone scan took more than half hour and I found the big machine rather intimidating. It was painless though - you just have to stay still for what seemed a very long time. So again it makes you wonder if they will find anything !!

I am a step further on - I know where I will get treatment !! Up to now I have had all the tests in Edinburgh which is 45 mins away depending on traffic. It was implied I would continue to get treatment there but now had a call to say after Tuesday I have to get treatment at our local hospital which will be much more convenient all round. Even knowing that is something.

I have my days I can put things to the back of my mind and try to have some semblance of normality. Other days I find it harder. Even a small set back from the receptionist at the dentist made me upset. I have only realised I should have had a check up before treatment starts and she can’t give me anything until mid September so unsure what to do about that.

Anyway have a good day and hope to keep in touch.

Jojodot x

Hi Jojodot...just dropping in to say...were you able to hold it together at the dentist or did you need to escape? I find it difficult to believe it was a flat out 'can't help' if they are aware of your situation.

Could you or someone on your behalf, manage to ring them and explain that you know its difficult but you are in an unexpected position and NEED a check up so if she really can't accommodate you, could she suggest a dentist that can?

We know dentists have emergency appointments and hopefully they would rather keep you as a patient.

I am sure you could do without extra hiccups like this...minor to some folk but huge when you are on this journey.

Take care

Thank you for responding Shimmering Unicorn,

First of all I phoned the dentist and got no joy so was so annoyed I got in the car and actually went to speak to them. It was the same response - we have no spaces. This is a respected large dental practise that all the family have attended for more than 30 years. I may have made even more of a fuss but as you say you feel more vulnerable than normal and I left and have worried ever since Friday.

i guess it was my fault not to make dental provision whenever the lump was diagnosed but it took me a while to process the information and the dentist was far from my mind. To make matters worse the receptionist reminded me I had not completed my treatment in March and have a filling that is due. Complicated story but I had good reason to cancel this appointment in March and with all that has been happening in the family even before my diagnosis I had complete forgotten. So guess the attitude is one of punishment. The emergency clinic I am told is for pain only. So my only option I can see is to claim I am in pain or go private which is not what I ever thought I would require to do. 

From your response and experience can you tell me if it necessary to get dental treatment done before embarking on chemo. I am in limbo land at the moment. Been diagnosed but waiting next week for final plans and not yet met an oncologist.

Many thanks - I hope you are doing ok. Sorry about my moan.

Jojodot x

Hi Jojodot, 

Thanks for asking. I got some results on Friday, I am HER2+ and both hormones +. So I will have chemo first. My first appointment with the oncologist is Tuesday 13th. My bone scan is normal. I also had CT scan on Friday which I will find out about on Tuesday. Like you, I can feel normal and almost forget this is happening sometimes. I'm glad things are moving now and I will have a plan of attack. I guess I will be a bit scared starting chemo, I wish I didn't have to put all those chemicals into my body but I'll get through this. Hope you find out your plans soon too 

Xxx