hey

Sounds like you are having a bit of a tough time at the minute. I’ve got some experience of new things being thrown up when I was going through my diagnosis, I have a large tumour, they can’t agree on the size even with the scans ( I had mammogram, ultra sound, mri, ct and pet ct scan) I’ve accepted that and moved on to focus on what I can do about it, and its in my lymph nodes, I was originally told, mastectomy and reconstruction straight away and chemo, then chemo first, mastectomy then radiotherapy and reconstruction in a years time.  My scans also threw up a couple of other things to keep me on my toes, an inflamed appendix (no symptoms) which I had to have taken out before treatment could start and an internal mammory node that looks suspicious!!! 

I know it’s frustrating but the good thing about the scan is that you will know what you are dealing with, you can get your plan sorted and it’s a step forward to getting this thing beat.

let us know how you get on on Friday. X

hey

Sounds like you are having a bit of a tough time at the minute. I’ve got some experience of new things being thrown up when I was going through my diagnosis, I have a large tumour, they can’t agree on the size even with the scans ( I had mammogram, ultra sound, mri, ct and pet ct scan) I’ve accepted that and moved on to focus on what I can do about it, and its in my lymph nodes, I was originally told, mastectomy and reconstruction straight away and chemo, then chemo first, mastectomy then radiotherapy and reconstruction in a years time.  My scans also threw up a couple of other things to keep me on my toes, an inflamed appendix (no symptoms) which I had to have taken out before treatment could start and an internal mammory node that looks suspicious!!! 

I know it’s frustrating but the good thing about the scan is that you will know what you are dealing with, you can get your plan sorted and it’s a step forward to getting this thing beat.

let us know how you get on on Friday. X

Will do.  

What became of your suspicious mammory node? 

Do you ever feel like you’re on a run away train and you just want to say “ok, that’s enough now. I want to get off”. That’s how I’m feeling now. No more surprises please. 

So have you not undergone any treatment yet? 

X

it’s still there being suspicious.  So we agreed to deal with things in order, first was to get the appendix out which I had done in May. Then get on with treatment, so I have my 5th cycle of chemo out of 6 next week.  They will keep an eye on the node so will probably need another scan, if it’s responded to the chemo then it’s likely it is cancerous if it doesn’t then it’s likely it’s just a dodgy looking node.  It’s on my list to talk to my surgeon about to see if he can take it out, but having spoken to the breast nurse I don’t think it’s that simple because of where it is.  I think I got to the point where I couldn’t deal with anything else popping up.  

I described it as a *** rollercoaster that you can’t get off and it keeps going round and round. You do get to a point where you don’t want to play anymore.  But it does get easier to deal with, and you get a new normal and then before you know it your half way through treatment. 

X

Your 5th round of chemo out of 6.  Well done you!!!!  It’s looking more and more likely that I will need chemo now. How have you found it. I have an 18 month old so I am dreading it. I will have the support from my family but I’m most worried about having to be absent from him being laid up in bed all the time. 

Did you have positive nodes anywhere else or are the shrinking your tumour before removing it. 

Is your tumour hormone receptive and or HER2 or triple negative? 

When does your dodgy rollercoaster ride stop?  

I’ve actually found it ok to be honest, the first three relatively few side effects but the ones I did have were manageable, the last round was a bit tougher.  I’ve got two children aged 7 and 10, they understand that I need some chill out days.  I’ve not spent that much time in bed, just takes me a little longer to get out of bed in the morning for the week after the treatment.  And I do different things with them, so snuggling in bed for book time or sitting watching a film.

They are shrinking the tumour before they operate and it had reduced quite a lot after my 2nd cycle so the treatment is working. It’s also in my lymph nodes in my armpit.  So operation next, then radiotherapy, all being well all done for Xmas, then reconstruction at some point next year, and it’s hormone receptive so tamoxifen for 10 years.  My mum had Bc 17 years ago and had the same treatment and is still here.    I’m starting to worry about the op, it’s been playing on my mind a lot this past week, but I know I have to just get on with it.

This forum helps, reminds me that it’s all doable, there are some amazing people on here.

X

Hi Woollylamb

I have just come across your post and am interested how you knew that you had an inflamed appenix as i have been get niggles on my right side and went to see my GP last week and was sent for an ultrascan on my overies, which did'nt throw anything up. It isnt pain as such its like a nagging. I did mention it to the oncologist last Monday which she noted and had a scan from neck to top of my legs on Wednesday am an due to go back on Mon to discuss results. I am scared stiff that they said my breast cancer has spread and thats what the niggle is. i am in the same situation as you with the size of the tumour i was oringally told that it was 4 cm from the MRI, then when i had a lumpectomy it was 6cm then had to have a mastecomy with lymph nodes cleareance then told it was 6.9cm then the oncologist last monday said it was 7.3cm i nearly fell of the seat, but she said it didnt make any difference neither here or there. i had it in 1 & 1/2 lymph nodes and had a full clearance when i got my mastecomy.

My head is in a bit of a mess as she said she wants me to have chemo, radio, hormone and bone infustions. I did mention the oncotype test to see what score I would get and she said o I think it will still come back that you need chemo. I am really struggling to deiced whether to have the chemo or not. Was wondering how you are now after you chemo, and whether you have had your radio yet. 

I hope you dont mind me asking all of the these questions, but any advice would be greatly appriceated

Thanks Christine x

Hi Christine

really happy to answer any questions so ask away. So they picked up my inflamed appendix on a ct scan, I didn't have any symptoms just a niggly feeling on my right hand side every now and again and nothing I would have gone to my gp about. My onco said it could be cancerous which sent me into a spin, however in hindsight they always describe the worst case in any situation. I saw a bowel surgeon who ordered a pet ct scan. He said that he couldn't guarantee that it wouldn't rupture during chemo so on the basis that I don't need it, he took it out . Results were that it wasn't cancerous but I did have appendicitis. 
 

I finished chemo beginning of September, had a scan and it had reduced my tumour to zero, so although it's not a walk in the park I personally think it was worth it. The only lasting side effects I have are my fingertips feel

numb and my tastebuds haven't fully come back yet, and I get fatigued. 
Since then I have had a mastectomy with immediate DIEP reconstruction, about 10 days ago so I'm recovering from that, and I need to have radiotherapy once I have healed. 
The journeys we are put on through this process are tough ones, but I just think belt and braces, throw everything at it and then I know I've done everything I can. 
ive also discovered that I am quite brave a Nd strong. 
If you have any more questions pop them on here. 
take care

WL

Hi just read your post, feeling abit apprehensive. I have an mri in a couple of days time. Bern told at the moment my area is 11mm, I cannot feel it and lymph nodes was clear on scan. Just really wondering what else could flag up xx