Hi zoey,

Glad to hear your doing great. I'm getting on good too. I feel with every day that passes my arm movements are becoming more like normal.

I have an appointment tomorrow and the dressing is being removed. I hope my results are back too and that I will maybe be given my treatment plan as this hasnt been discussed with me. Very different from you as you seem to be kept more in the loop than what I do with your consultant but probably just the way different areas work.

It's great you have your follow up on Thurs too as I think it's the waiting times between appointments and not knowing how the lab tests have went that is the hardest part of this full situation.

Heres hoping both our results show clear margins and we can move onto our next step and hopefully get on with our treatment.

I shall keep you posted with how I get on tomorrow.

Take care

Nikki xx

Hi zoey,

That's me had my follow up appointment and dressings off. Firstly quite shocked at how big the scar is and my boob is brick hard and very lumpy. It feels like the lump hasn't been removed.

I have been told I got clear margins so no more surgery. The only thing I now need 2 wait on is test results to decide whether I am getting chemo before radio or just straight onto radio. I won't know that for 3 weeks and will meet with an oncologist. I have also been told my tumour was cm and grade 3. Then after radio it will be 10 years of tamoxifen.

Fingers crossed you get on OK on Thursday

Nikki x

Hi!

So glad you got clear margins, no more surgery! Were your lymph nodes clear too?

Another 3 week wait, ridiculous isnt it! Do you know what results they need to determine whether you need chemo?

Mine was 3 cm and grade 3, what size was yours?

I'm presuming I'll need chemo as mine is her2 positive.

24hrs and I should know more hopefully.

Lets hope you hear before 3 weeks!

Zoey x

Hi,

Yeah my lymph nodes were clear too. The 3 week wait again is the worst. My tumour was the very same as yours 3cm grade 3 but I'm her2 negative hormone positive or something. 

Seemingly the test I am getting done on the tumour tests the dna of how the tumour is made up. Then it's scored I think on a level of 1 to 100. I think age, health etc all is took into account and depending on what score I get will depend on whether I will benefit from chemo. Low score no chemo high score chemo. The score can also tell your expected chance of recurrence I am led to believe. I didn't even know such a test even existed. Everything is a waiting game.

Here's hoping u r more in the loop tomorrow than what I am. I thought I was getting my treatment plan yesterday.

Good luck for tomorrow.

Nikki x

Hi zoey,

Yeah highly hormone sensitive is the wording being used. I wish the terminology and explanations they give were a lot more simplified or broken down to explain what it all actually means.

Best of luck for today. Fingers crossed for clear margins for u.

Let me know how u get on

Nikki x

Hi, 

Well good news! Clear margins and clear lymph node

She removed the dressing and it's not too bad, very bruised and quite a big scar, but worth it in the end!

I've got a bit of a slog ahead of me though, because I'm her2+ I'm having chemo and a targeted drug called herceptin, then radiotherapy, anti hormone drugs, bisphosphonates (drugs for my bones) and after all that is done surgery on my other boob to match them up! 

Got an appointment with the oncologist 25th may to, I presume, go through the drugs in more details and get a start date for chemo.

At the moment on a bit of a high that it's all out of me and not spread, but fully aware the next 7/8 months are going to be hard.

I really hope you get your news quicker than 3 weeks though!

Oh and got my covid jab booked for next sunday! 

Hope you are feeling ok today.

Zoey xx

Hi zoey,

Glad u have had some good news. Knowing that you have clear margins and your lymph nodes are clear is such a weight of your shoulders. I was so relieved because I over think everything and go to the worst case scenario. 

I was really surprised at how big my scar is too but it is what it is I'm not fussed about it. If it helps us survive this then so be it.

You seem to have a very clear plan of what's ahead for you although it is going to be challenging but I have no doubt you can do it. Hopefully by Xmas we will both be through the worst and be able to look forward. I have my oncology appointment 13th May so cut down to a 2 week wait instead of 3. Hopefully I get detailed info like you and no what's in store aswell.

I had my 1st covid jag about 3 weeks ago the astra zeneca one I got. It was OK to be honest.. All I would say is that night I felt shattered & my arm was very heavy for a few days. Remember to get the jag on the opposite side to where you had your surgery. You probably already know that though.

Anyway regardless of what we are going through we will give it our best shot. Its good having someone in a similar boat to me who I am able to share what's going on with me who actually gets it. So thank you for that. 

It's a bank holiday weekend so let's try and enjoy the next few weeks before our treatment starts.

Best wishes

Nikki x

Hi Nikki,

Hope you've had a good week, I'm starting to feel pretty normal again, still a bit sore under my arm and my scar is starting to feel tight so I've started moisturising it and got some silicone scar sheets to help it heal quicker, I've ditched the support/sports bra as they are rubbing the scar and opted for a vest with support panel in.

I'm debating going back to work for a few weeks when my sick note runs out, my onco appt is 27th of may and then it will be 2 weeks ish before I start chemo, so I though I'd go back for a few weeks. Just be nice to feel normal before chemo life begins.

I hope you are healing well and feeling ok.

Take care,

Zoey xx

Hi - so sorry to hear you are going through this. I hope my experience helps you not to feel so alone in what you are experiencing. One thing that sticks out from your post is what your consultant has said, hopefully you will have been allocated a breast care nurse to talk to.

I had exactly the same thing happen to me apart from finding the lump bit, I was referred to the breast clinic at the beginning of December 2020 because I had blood come out of my left nipple, the Dr examined me and couldn't feel anything (I'm 53 by the way) but because of this and the fact that I went through the menopause 7 years ago she put me on the 2 week fast track to the breast clinic. Anyway because of Covid and Christmas I didn't get seen until 9th January. Again the consultant checked me over and looked at my last breast screening from 2 years ago. I had a mammogram and then they did the ultrasound the Consultant there told me they had found a shadow very deep in my breast that hadn't been there before so they were going to check it out but it was probably nothing. The next thing he said he was very sorry but he was going to tell me there and then that I def had cancer, I asked him how he knew and he said it was the shape it was spiky. He showed me on the screen and it was about 2cm across but very deep and he told me I was incredibly lucky because I would never have felt it until such a time it had grown so much I would be able to feel it and then the outcome would be very different, or it would have been picked up when I had my next routine screening in a years time. They took 2 biopsies and I saw the consultant  5 days later they told me it was stage 2 and oestrogen receptive, they would do a lumpectomy and take the sentinel nodes to check, depending on the outcome I would either have radiotherapy or chemo and radio. I would also go on medication afterwards to block the oestrogen. They also took a sample of the blood that was coming from my nipple.  So I had my surgery the following week and then 10 days after that I was told that there was no cancer found in the lymph nodes or the blood sample from the nipple (apparently it was just purely a fluke that some blood came out of my nipple and it was not related at all to the cancer - but as a precaution they took all the milk ducts from that breast). My surgeon decided to remove the lump and lymph nodes from the same excision so I have a 4 inch scar just below my armpit on the side and another incision around my nipple. I haven't had to have any reconstructive surgery because the cancer was deep in the breast its all internal but what I would say is I have probably lost about a third of my breast capacity - its a bit noticable because I have quite big breasts so I def look very  lopsided but its a small price to pay and I will just adjust what I wear accordingly. I finished my radiotherapy 3 weeks ago and I am on astrozole for 5 years. The tablets have given me hot flushes again and apart from just dealing with the after effects of the radiotherapy its ok. The radiotherapy I had was done in 5 days of up to 30 minute sessions, buy yourself some soft crop top type bras, big pots of E45 .  The actual session is fine just takes them a while to make sure you are in the right position, you will have a planning session first and they will give you 3 little dot tattoos so that they can line the machine up correctly when you have your treatment, I think what suprised me was the fact that my arms had to be above my head on arm rests - that was the most uncomfortable bit, also it was a bit chilly in the radiotherapy suite . I started to feel really tired after my 2nd session and sore like bad sunburn. Definitely get your Dr to sign you off, if you work, I'm 3 weeks post radiotherapy and I have just started back on a phased return I was so tired I just slept loads, its getting easier every day and everyone is different my sister in law had radiotherapy for breast cancer and was fine, she carried on working all the way through. I would say that I'm quite a strong person and like being busy but emotionally and physically this has knocked me for 6 I think it was just the shock of it all and I'm not going to lie even though I know I am incredibly lucky that the cancer was found I do wake up at 3 in the morning panicking and I do feel scared. So, what I would say to you is talk about how you are feeling, I hope you have a supportive family and lovely friends to help you through this. Hopefully you will be allocated a breast nurse (mine was amazing, so kind and patient and sat with me many a time when I was in tears) write down any questions you have because I spent most of my consultation in tears because of the shock of it all, be kind to yourself and make sure you have plenty of help and support afterwards. It is all such a shock and it takes a while comprehend what is happening and it is a frightening time but they can do amazing things now, my nurse gave me lots of leaflets that were useful and said don't look online especially at the american sites because they can scare you even more.  I was lucky to have my surgery so quickly because at that time the hospital weren't doing any cancer surgery because of covid, fortunately the private hospital opened up some slots hence I had my surgery within 2 weeks of diagnosis but at the time of diagnosis I was told that it could be some months because of the backlog of cases and if my cancer was hormone receptive the good thing was they could give me medication to stop it developing further so def ask how long till surgery. If you are in the slightest bit unsure of anything ask and keep asking otherwise it will just play on your mind and there is probably enough going on in there as it is.

Take care and hope it helps - I'm very aware I've rambled on but I didn't have a clue what was involved and every case is different - and I'm one of life's spill your guts and get it all out there type of person. Good luck hope all goes well for you xxxxxxxxxx