Shock diagnosis

Hi Matmar I think we might be at a similar stage  

been told  confident it’s  been caught early  but it’s not clear if radiotherapy and or chemotherapy will be needed after  surgery ( I’ll only find that out after surgery and the histology results from that  ) 

im not all worried about surgery and I’m 64 so not needing to worry about  menopause symptoms  and think I can cope with radiotherapy but am really worrying big time about needing chemo This is the bit that is stressing me so much it’s almost unbearable 

my CNS has been great as well and we are clearly being given the same advice so I’m trying really hard to take one step at a time and not to worry about something that might not even happen 

I’m trying to tell myself I could ruin the whole of the lovely build up to Christmas by worrying about something that might not even happen !!! 

 I’m also trying  to keep it in perspective-  it’s treatable not everyone gets that news so big girl pants on and get on with it !!!!

im like you just waiting for the surgery date and it’s good to have the first step planned just feels hard to make any plans until I know the date 

it’s just so nice to have this site to share concerns and worries it doesn’t feel so much as if you’re on your own 

Hi Matmar, I’m glad you’ve had your results and are feeling a bit more settled, if that’s the right word. Are you comfortable sharing the predicted stage? Next step for you will be a pre op assessment - different hospitals do some things differently but I didn’t get my op date till a couple of weeks after my pre op. In fact I just checked back in my diary - I had my pre op on December 15th 2021, and was told my op date two weeks later. I had my op on 22nd January 2022 so almost two years ago! Feel free to click on my name if you want to read my story,

Hi Scaredbunny, very well done for all those actions you implemented! It’s a daily mind battle thing so it will still require effort but you can do this! I hope you get your CT date soon, but given that the results would need to go to your MDT first before you get them, and then you’d need to have a pre-op assessment, I’d suggest that it’s unlikely you’d get an operation date before Xmas especially given the time of year. 

Hi again Scared Bunny

I am glad that you feel it's helping to share your worries on here. It is hard waiting for the surgery date. 

With mine I had my CT scan and was phoned a couple of days later with the outcome but had the surgery a couple of weeks later. I saw the consultant for the first time on a Friday and had the pre op the same day and then surgery on the Monday- so things can move quickly once they have all the results back.  A friend recently had her surgery within a few days of her CT. It seems to vary with different hospitals. 

I hope you do not have to wait too long. It wouldn't hurt to give your CNS/hospital a call to ask about the scan and when it will be.

You are right that further treatment can't really be confirmed until your post op pathology comes back. They can give you an idea after your scans are done (along with the biopsy results) but these can change after surgery. 

Please do not worry about having chemo yet would be my advice. It is hard when things still feel in limbo. I remember sitting with my cancer nurse after my diagnosis appointment. The consultant said mine was early, I wouldn't need chemo in his opinion but there was a chance of radiotherapy- and this would likely be brachytherapy. In the end I needed chemo and external beam radiotherapy. But I tried to focus on one step at a time. Surgery first and then wait to see what happened next. Some people do not need any further treatment. But they can not confirm that with you until the post op pathology when everything is examined in more detail. 

When I got told I would need chemo it was the scariest thing that could happen and the thought of external beam radiotherapy also frightened me. What I did find though, is although at times chemo can be challenging- it is nothing as bad as I feared, nothing like it is portrayed in films. Yes I did have some side effects but on the whole these were managed with medication. I used the cooling cap and kept most of my hair. Looking back once I had done the first chemo I did actually cope fairly well with it. It was more the radiotherapy that I struggled with. 

My follow up treatment was because although I was early stage, I was higher grade. The follow up treatment started 6 weeks after surgery.

It sounds like you have a really supportive CNS and my advice would be to talk to them, ask questions and share your worries - it really helped me- as did the ladies on here. If you need anything you know where we are.

Jane

Thank you so much 

I think at this stage I’m very similar to you because although it’s early stage they did say it’s a fast growing so I guess that means it’s high grade 

I’ve had breast cancer 18 months ago which needed chemo This  is where my fear comes from 

I took your advice and spoke to my CNS who told me if I do need chemo it’s not as bad as the breast cancer chemo 

I’m reassured to hear you didn’t loose much hair  I did capping for the breast cancer chemo and still lost most of my hair so fingers crossed it’s the different cocktail and I won’t loose it so much this time 

I’m preparing for surgery chemo and radio and then anything less will be a bonus 

thank you do much for sharing your experiences and your support 

Well I’ve got a scan on Sunday after phoning and getting it brought forward 

pre assessment is on Wednesday 13th at 8.30

so my task tomorrow is to phone the CNS and consultant secretary to plead to be sure I’m on the MDT list for Wednesday 13th 

if not it won’t go till the following week 20th then unlikely to have any date till the new year and I’ve been told by booking staff even cancer lists are likely to be cancelled in the new year due to junior doctor strikes !!!

Hi Scaredbunny, well done - glad you’ve got your predicted staging CT this Sunday, At my hospital my op date was allocated by the consultant not the MDT as far as I’m aware, I had a face to face appointment with him and he explained the op and gave me the date. I appreciate that you’re keen to have your op asap, it’s totally natural, but I imagine it’s more likely to be after Xmas, I personally think it was entirely wrong for the booking staff to have said that to you, and I’d be complaining to PALS if it was me. They can’t know that and it’s wrong for them to have given that impression. I had my op 5 months after lockdown when covid was still very much about and some restrictions were in place, and cancer ops were given priority even when other ops were cancelled. 

Hi Scared bunny  I’m also trying to keep all in perspective and trying to keep as busy as possible. I should know this week if my op will be before Christmas, but have made peace with the fact that it may not. I will try and speak to my CNS tomorrow to try and find out more about where I am on queue. 

I hope you’re having as good a weekend and possible and agree that this is a lovely community!

Hi MarmiteFan59 MRI results showed stage 1b - so not sure where I’ll fall in priority list for op before Christmas. 

Thanks for sharing your experience of timeline re Hysterectomy, it’s super useful to help manage my expectations. 

Overall I feel quite serene about next steps, but will feel more so once I’ve had my operation!

Thank you Matmar 

l’ve no idea what stage I am yet just that it’s fast growing but pretty sure it’s been caught early  like you I’d love to have my op  before Christmas but appreciate it probably won’t happen 

I’ve had a CT scan today with dye to check lymph nodes ( I just called the CT booking number and asked if I could have it as quick as possible saying the consultant had told me I had a fast growing cancer and they just offered me this morning( yes Sunday!) 

I called the consultants secretary as well and she’s put a note on the scan request for it to be expedited for MDT 

pre assessment is on Wednesday am so all will be ready to go to  MDT ,meetings are Wednesday afternoon so the best I can hope for is I’m on the list for it next Wednesday 20th so pretty sure I won’t get in before Christmas but I am going to call my CNS tomorrow like you 
I’ve also booked a session on Wednesday with the macmillan psychologist who’s supported through the breast cancer 

At least chasing things has helped me to feel I’m in control of some bits of the process 

thanks also to the great advice on here I’ve written down the know facts to date and the what ifs 

i keep reading it and to be honest most of my what ifs are a bit silly at this stage and the known are very positive but I still have to keep busy and every little twinge must be a sign of something awful going on ???? Despite the fact I feel really well 

only consolation is I’m not worrying about imaginary symptoms of breast cancer secondaries !!!!

here goes let’s brace ourselves for the week to come