Hi,

I am very similar to you. I got examination, mammogram, ultrasound, biopsy and marker left in 2 weeks ago all in one day. I was told at the end of the day it was cancer. I found that strange as I never had my biopsy results as I had just had it. I went last week again for another appointment to be told my biopsy was inconclusive and they Don tknow if I am her pos or her neg but def cancer. Its a tough time waiting. Wish you all the luck in the world. 

Hi 

Thanks for replying.

The waiting is the hardest, what happens now for you, will it be further tests? Did they mention surgery or radio/chemotherapy to you at your first appointment?

Sorry for all the questions!

Very best of luck to you too 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

Ah right, well here's hoping its low and you dont need the chemo, at least it's out of you now and everything else is clear, that a relief. Are you er positive is that why you'll need tamoxifen?

Yep the waiting game is certainly testing us!!

I think as I'm triple positive they wont hang around as its classed as aggressive and to my knowledge grade 3 means fast growing, so I'm praying no more surgery and chemo asap.

Best wishes 

Zoey xx

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 zoey,

Glad 2 hear you are doing well. I have my onco appointment on Thursday so hopefully I will get my treatment plan and dates for when things are expected to take place.

I made the decision to go back to work last week but I'm doing reduced hours but it's making things a bit more normal before treatment starts.

I ditched the sports bra on day 1 I couldn't stand it. The only issue I have just now is what is I think described as cording under my arm and my boobs still hard. I'm going to ask about these issues on Thursday.

Hopefully by the end of the week I should know what's in store for me. 

Take care and good luck if u do decide to go back to work

Nikki x

Hi, 

Good luck for Thursday, hope it's good news and no chemo.

Sorry to hear about your cording...is it painful? I'm still quite tight round the scar and my boob is also hard, I think it can take months for the boob to get back to normal, but definitely have a word when you see someone.

Work are dragging their heels a bit, as I'll have to have a return to work interview and possibly a risk assessment, so hopefully I'll hear this week if I can go back next week. It would be nice as I dont plan to go back during chemo, the risk just isnt worth it.

Let me know how you get on Thursday,

Take care 

Zoey xx

Hi, 

Good luck for Thursday, hope it's good news and no chemo.

Sorry to hear about your cording...is it painful? I'm still quite tight round the scar and my boob is also hard, I think it can take months for the boob to get back to normal, but definitely have a word when you see someone.

Work are dragging their heels a bit, as I'll have to have a return to work interview and possibly a risk assessment, so hopefully I'll hear this week if I can go back next week. It would be nice as I dont plan to go back during chemo, the risk just isnt worth it.

Let me know how you get on Thursday,

Take care 

Zoey xx

Hi zoey,

Hope your doing good. I had my oncology appointment yesterday and basically been told I need chemo, radiotherapy then 10 years of tamoxifen.

I never consented to chemo as I felt I had been put on the spot. I will be going ahead with it though after a bit of thought last night. My nurse has already pre booked me to start next friday so that arrangement is in place. Just need to go back for another discussion with the oncologist and sign consent one day next week. I am also going to try the cold cap to see if I can save any of my hair so time will tell. 

Now I know what's in store for me I'm actually OK with it all. 

Let me know how you get on at your oncology appointment too

Nikki x

Hi, 

Oh that's not what you wanted to hear, but I guess if it gives you the best chance of preventing reccurence/spread then its what we must do.

I'm glad you're ok with it now, you sound like me...as long as you know what's happening and why,  then you just deal with it!

Do you know what kind of chemo you'll be taking and how many cycles? I'm ready to get going with mine and I'm getting fed up of waiting now!

I'm going to try cold cap too if they recommend it, I've heard some chemo drugs it doesnt work that well with, and it can add a lot of extra time to your day. I've already been looking at wigs/hats and other bits in case I lose my hair! 

I hope you have a good week, 

I'll keep you updated, always here if you want to chat.

Zoey xx

Hi zoey,

I was hoping to avoid chemo but unfortunately my onco test score recommends I will benefit from it. Initially I was upset but now like you I just want to get on with it.

I will be getting Tc chemo and 4 cycles is the initial plan to see how it goes. So hoping in 12 weeks time to be done with chemo then onto 15 sessions of radio. 

I've made the choice not to bother with a wig and just look for some hats which I best do soon. My nurse has said the cold cap will add 2 hours to my time in hospital but if It maybe saves my hair then what's another 2 hours.

Try and enjoy your weekend

Nikki x

Hi Nikki,

Just checking in to see how you are?

Hope your first chemo went ok and you havent had too many side effects. Was it a long day for your first session?

Take care,

Zoey xx

Hi zoey,

I had a bit of a drama with my first chemo on Friday. I had to get the chemo called TC. Was supposed to start about 10am but it was more like 11.30..they couldnt get the cannula in. 3 attempts it took. I then got the cold cap on which wasn't as bad as what I have seen written. I first got some doss of the Cyclosophamide chemo out in manually with the nurse which was fine. Just very cold hands at this point. One that was in I got the infusion of docetaxel started and this is when it went wrong. Within minutes I had took a reaction. My throat felt like It was closing and I was breathless. Then my back when into spasms. I had to alert naotge rlady who was in the unit having treatment to run get a nurse for me. Before i knew it I got something put into me and the infusion had to be stopped. As my oncologist or breast nurse weren't available a decision was made to postpone the rest of that days  dosage of  my chemo which I only had 1 moe hour of to go.

I have had no side effects whatsoever apart from really tired Friday night afterwards but that's probably because of all the steroids I was given to take.

I need to wait now and hope someone calls me back tomorrow to see what happens next..

When is your chemo zoet is it Tuesday? Do you know what your type is called? I have been given my appointment for my next dose but I'm very apprehensive about it all now and debating just asking to go to radiotherapy and right onto tamoxifen instead. I really don't know now. 

Maybe once someone is able to explain what happened my nerves will be calmed.

Nikki x

Oh Nikki, what a nightmare!

It must have been scary, I've heard they do the first dose slowly so they can see if you have a reaction, at least they got it stopped.

I'm guessing your call back will be to discuss either a lower dose or an alternative drug?? I hope you hear soon, you will be fine once you've spoken to someone x

I'm at the oncologist thursday to get my plan, it seems ages since surgery, I just want my plan so I can get mentally prepared for it! 

Take care and keep me posted, when is your next chemo due?

Zoey xx

Hi zoey,

Yes it wasn't the best experience but up until that point it was OK. Nurses etc were all really nice.. 

I think my call back on Tues this week was a general follow up as the letter was dated Thursday and my chemo never went wrong until te Friday.

I will def be calling back tomorrow to see what happens to me now. I don't want to wonder until Tuesday.

At my 1st oncology appointment they explained chemo and that was about it. They then left me a week to think everything over. Then I was called back to sign forms and have more bloods done.then I was given a prescription for steroids to take the day chemo, on the day and the day after. I was also given a thermometer to keep an eye on my temperature. 

Hopefully you get your plan all sorted on Thursday and get the ball rolling too. 

I have my next chemo scheduled for Fri 11th June and bloods etc Wed 9th June. I also was given another 35 steroids to start on the 10th June. 

So much stuff to take in. 

Let me know how u get on come Thursday. 

Nikki x

Hey Nikki how are you?

Got my chemo plan, I start Tuesday on EC for 3 cycles, 3 weeks apart and then onto paclitaxel weekly for 9 weeks with herceptin injections. Then radiotherapy after, don't know the plan for that yet.

Feeling ok now I know what's coming, I've got bloods and pre assessment stuff on Monday but totally ready to do this!

Hope you are feeling well and ready for your 2nd one.

Zoey xx

Hi Zoey,

I am good. Glad to hear you have a plan and place and you are very much like me in The sense that you are ready juts to get on with it. It seems still like a long haul ahead for us both but I just keep thinking by the end of the year it should be done with. Good luck for Tuesday but I'm sure you will be fine. The only real side effect of my 1st chemo for me was a few days where I felt drained and had very heavy legs as if I had ran for miles. Apart from that I was OK.

I have to get a cardiogram and ecg tomorrow because of my reaction to TC chemo. I am being changed to one called AC and my next dose is next Friday. Hopefully I don't react to that one. Have you decided to try the cold cap? I did and it really wasn't as bad as all the horror stories I had seen.

Best of luck for Tuesday and be sure to let me know how you get on.

Nikki x