Awaiting Second Breast Surgery Results

[Evie-S]

Morning Mermaid79 - I’m sure all the hugs from your lovely boys helped loads yesterday, and sometimes it’s good to let it out rather than bottle it all up. I think the feelings after diagnosis are a real rollercoaster, very up and down, and you may well be experiencing the after effects of 2 general anaesthetic. Plus it takes time to get your mind around everything that has just happened.

It’s great that you have a good family/friends support team, but like you I found it enormously helpful to chat on here to others going through treatment or who had already finished, as they knew exactly what I meant without me having to explain. Some friends/family assumed that once I had finished treatment that I was “mended” and over it, a bit like having a broken leg that mends. I know they mean well, and just want to help us move on, but it’s useful to have this forum too. 

The test you refer to is called the Oncotype test, where a sample is sent to America and they can see whether chemotherapy will be of any benefit to you. Fingers crossed you won’t need it, but if you do then as you say what will be will be and there are monthly chemo groups on here who will help you get through it. I had chemo so will also be happy to help you. But let’s not even go there for now, best to continue to take one day at a time. Much more fun is to start planning fun things for the summer with your boys, and don’t worry about not doing much with them this half term. Just being there for them, chatting, hugging is most important. Sometimes as mums we put additional pressure on ourselves.

I hope each day you feel better and that the swelling goes down quickly, I can’t remember how long mine took. Please keep chatting on here when you want/need - we all just “get it”, it’s also anonymous so you can offload without any fear of judgment.

Thank you for your kind weekend wishes too. Evie xx

[Mermaid79]

Good morning Evie,

Lovely to hear from you again. I must admit I had a very low day yesterday! I finally removed my dressing (steri strips are still on just about) and seeing how much swollen my left side is compared to my right just made me let the tears flow. I’ve not had a good cry really yet so it’s been bottled up for a while. I did feel a little better afterwards. I really didn’t want to get upset in front of my boys but they were really good and gave me lots of hugs. They haven’t really spoken about it but I think they understand a little bit as they are old enough. 

I did come straight off painkillers one day but am taking them 3-4 times a day again now which is easing the pain and discomfort a little. Hoping I’ll feel up to going for a walk soon as was going this quite soon after my initial surgery (lumpectomy and SNB). I am enjoying having the time to read as never had a lot of time before with family life and work. But there’s only so much of that I can do. It’s half term so have the children home so not able to do much with them. Hopefully over the summer I will be able to do some day trips with them. Never thought I’d say I miss going to work but miss everyone and the normality. 

My appointment for the results of full axillary node removal is on the 17th June so still couple of weeks to go. On the positive I’m hoping my swelling will have settled more by then. Fingers crossed it hasn’t spread further than the one sentinel node. BCN mentioned sending a sample of my tumour to America to be tested as this will help determine whether chemo will be beneficial or not. I am hoping it will still only be radiotherapy and tamoxifen but what will be will be.

Thank you again for reaching out. I have family and friends who have been amazing but it’s good to chat to someone who has been through the experience.

Hope you have a good weekend xx

[Evie-S]

@Mermaid79 - I’m sorry for not replying sooner, thank you for your reply and kind words.

I’m sorry to hear about your discomfort and I know exactly what you mean about being apprehensive to take off the dressing. I would like to start by telling you what I discovered about pain relief. I carried on taking pain relief for a while after leaving hospital, then one day I thought I was ok so stopped all pain relief. That was a big mistake and I had a lot of pain. Apparently I should have been told to ease off the painkillers slowly, not stop suddenly. So do take advice about how to manage your painkillers - I think it’s best to stay on top of the pain, rather than let it get too much.

Also don’t hesitate to speak to your BC nurse at your hospital for further advice, or if you are worried about anything. I am squeamish so a nurse removed my dressing - it would still be on if left to me!!

You are doing really well with your exercises, it is so important to keep up with them, so do congratulate yourself for keeping up with them. Little and often is the easiest, rather than have them turn into a chore. If you are having radiotherapy you will need to get your arm up, sort of at right angles to your body, and your hand behind your head (if you can imagine what I mean).

It is still very early days after your op, so make sure you listen to your body and don’t overdo things. Lots of rest and a short walk when you are up to it. Have you been given information about how to minimise your risk of lymphoedema?

The early days seem endless, I was so frustrated about not being able to get clothes over my head, but then suddenly things changed and very quickly I was back to a new normal. So hang in there, and very soon you will feel a lot better.

I’m not sure if I have really given much help here, but please feel free to ask anything else that I might be able to help with, or if you just want to chat while you wait for your results - do you know when you will get them?

Sending you gentle get well hugs, Evie xx

[Mermaid79]

Hello Evie,

Thank you for your reply and your lovely welcome to the forum. 

I’m a week on from my full node clearance, and having not felt much discomfort the first few days I am now feeling a lot of discomfort; swollen under arm, tingly and sore. I’m due to take off my dressing but a little apprehensive whilst feeling so sore. I know it’s normal for these feelings but just wondered if you had any advice for dealing with it? I’m taking pain killers and managing my exercises few times a day! Just feeling rubbish in general. 

It is lovely of you to continue to support and advice others on hear all these years later. I hope you are doing well. 

Thanks again! 

[Evie-S]

@Mermaid79 - a big welcome to this lovely forum, I hope you will find lots of support as you go through treatment.

I’m sorry to hear that you had to have a second surgery, unfortunately they can never be sure what they are going to find until you have surgery. And there is so much waiting for results, that is always hard as our minds go into overdrive and we fear the worst.

I had chemo, a mastectomy, node clearance and radiotherapy about 4 years ago, so I am happy to answer any questions. But while you wait we are all here for you, to listen, to chat and help you through the waiting.

I’m not medical so I wouldn’t like to give any medical advice or comment on your treatment, but you might like to call the nurses on here - their number is at the top right of this page. Your team will be looking very carefully at your individual case and working out what is the best plan for you.

It sounds a cliche, but now is the time to be extra kind to yourself, and take one day at a time. One book I have reminds us that “fears are not facts”, and that we should try to deal with what we know rather than speculating about what might be.

I’m very happy to chat more any time it helps. In the meantime I’m sending you a big virtual hug, Evie xx

[Mermaid79]

Hello all, this is my first post on the forum. I was diagnosed with invasive ductal breast cancer after finding a small lump in left breast. It was diagnosed as stage 1 ER+. I was told lumpectomy, sentinel lymph node surgery and probably radiotherapy and hormone tablets. However my results of surgery showed breast cancer had been removed but 1 of 3 lymph nodes were positive. So have had full axillary node removal, only 3 weeks after first surgery. So the results of this could change my staging and treatment plan. I’m really hoping only one positive sentinel node is a good sign. Very anxious awaiting these results as chemotherapy may now be on the cards.