Hey everyone, 

Hope your all okay. 

Struggling to sleep right now. 
Had my meeting with Oncology today, lovely person and talked me through everything. I just feel like it was such a different conversation compared to my post ops. 
Post ops was so positive and it all felt very “you can go for chemo if you want” radiotherapy wasn't even discussed. I was told to check over Predict with the sentiments that my cancer was removed with surgery and due to its stage/grade and as a luminal A its less aggressive/likely to return and if I wanted I could just take my tamoxifen and go but I opted to go for chemo to mop up any strays and for my own piece of mind.

Cut to today’s appointment and its now being referred to by the Onco as “more aggressive” and although in terms of treatment Im HER - it did have HER cells but its still negative and it wont change treatment at all. Il be doing 4 sessions of EC and 4 of Paclitaxel over 4 months. Il also be having some sort of injection for my bones once every 6months for 3 years and being put forward for ovarian suppression now. 
The Oncologist felt Oncotype would just be wasting time as due to my age and it having been multifocal it would likely have scored in the intermediate to high risk bracket and have just merely delayed chemo. He then throws in radiotherapy due to my age even though I had a Mx I should discuss RT. I had to ask if what I was told about it all after surgery was still the case as it just felt like such a different conversation. 
I feel like what positive sentiments I took from my post ops have been shaken a bit. I know its silly to but a part of me clung on to the fact my predict score was good (98% for 5years and 90% for 15 years) for comfort but I was told by my onco to “take Predict with a pinch of salt” although he did go through it with me and got the same result as me but said where as on predict it gave me a between 1.5 - 3% benefit to chemo he felt it would be closer to 10% benefit in reality. A pretty huge difference in my eyes!

I suppose I just feel a bit more scared again which is weird as apart from the bit about HER2 I knew the rest, just felt a bit like today had a more threatening tone to it all. Has anyone else had this kind of difference between their surgeon to their oncologist? Id rather go belts and braces with it but post ops just felt so much more hopeful, reassuring and less threatening than today. 

Sorry for the long vent its just all playing on my mind. 

xxx

Hi Rambleon. Yes I had the same experience between my surgeons and my oncologist. I haven't been given my Predict scores but did do it myself. I am now very sceptical about my surgery and I'm now even wondering if I was given the right advice about that too.  It doesn't help our piece of mind at all. I go back to the oncologist tomorrow for the first cycle review. Xx

 Rambleon88  I'm interested to note that you've been given 3 versions of Predict scores! I'm definitely going to ask more questions on the 2nd December. 

I think the fatigue and side effects of chemo have definitely affected the positive attitude I had been using. I think its made me feel more vulnerable, definitely.  I too was basically putting it to one side and wanting to get to life before diagnosis prior to chemo.  I am worried now it might not be effective because they had to reduce the C part of the EC to 83% because I ended up in hospital with neutropenia on the first cycle. Also I still have a fair amount of hair on my head despite not cold capping.  Whilst if this does work and is effective I won't complain, but it's just a other worry at the moment that it's not working because I've still got this hair despite cropping it short. 

I'm still waiting on the outcome of the complaint I made about the oncotyping delays, and I think that's having an impact. It's the 65 working day deadline for a response tomorrow, so we shall see how they will try and spin that. They really just need to apologise and accept responsibility. But I am sure they won't. 

I love my job. I miss it. I do want to go back when all this active hospital treatment is completed (it's just not possible at the moment to do my job) though maybe with some changes to be more family friendly.  We shall see what the future holds. But I want to do more to make memories now and not delay things. I like you, hope that I'll live a very long cancer free life, but I'm very consciousness that it's not a given anymore.  I know there is a balance somewhere and I look forward to finding it :) xxx

its the same scores but yes they have gone through it with me a couple of times now. I think they use it to provide reassurance without saying anything themselves. There are two versions of the predict tool live at the moment though - V2 which is approved medically and V3 which takes more factors into consideration but isnt approved. Definitely go through it with them, especially if you only have once before as it gives a well educated idea on the benefits of chemo and HT. 
OMG thats the word.. Vulnerable! Yes I completely get it and I dont like it either. I was trying to look af paint colours in B+Q and had to leave as a person there was coughing up a storm all over the swatches and I couldnt risk catching anything off them (they arent to know whats going on with me so its not their fault). 

Try not to link two an two with your hair hon it may just be a delayed reaction or your someone who keeps onto their hair! I saw a video about a mother and son both diagnosed and going through treatment the same time. They both shaved their heads and the son lost his hair but the mum kept it all and it even grew back a bit during! 

Its wonderful to hear you like your job, that in itself is half the battle in this life! My work has been a little strange during this process with my boss leaving.

We will find the balance lovely, we have too! Hope your feeling okay after the weekend and thank you so much for being on here its helped a lot as its so easy to feel alone. I had a right wobbly week last week but hopefully this week will be a bit more calm xxxx

Its been a lil while but thought Id hop on and see how you are all doing?

 RedRuth84 TM1  hope your both okay ladies, sending lots of love and think of you both! 

Well chemo and specifically this bloody EC stuff is no joke. I have infusion number 3 on the 18th subject to bloods and all going to plan.
If there is anyone out there whos followed this thread and about to start EC in my experience - Day 1-2 from infusion for me are iffy but okay, Day 3-5 is a write off and I basically sleep and feel rubbish. Day 6 I start to emerge achy, hungry and feeling queasy but its doable and only eases from that point. 
I have this jab I have to do at home, cant pronounce or spell it for a million quid so I call it “Figgle? Feugratism?” I dont know but its some bone marrow stimulating stuff I have to use on Day three post chemo. Any advice out there for the aches and pains that stuff causes?

Also to anyone out there whos done both EC and Paclitaxel what was the Paclitaxel bit like? Chemo is inherently *** but still is it a bit easier going than EC? 

Thanks all xxx

Hi Rambleon88  I'm sorry you are having such a hard time on EC. I had neutropenia on my first  cycle and was hospitalised for 5 days. They reduced the C part on the future ones to 83% as a result.  I did feel nausea for 5ish days and fatigued but otherwise I did OK on EC.

Docetaxel however.... oh my! I felt like I'd been hit by a bus. My whole chest and shoulders were so painful. Sharp chest pains when standing. Fatigue. And oh mu the gastric symptoms were dire until i took immodium. Day 3 - 7 were awful and that's despite them recommending a 75% dose as this one can be worse for neutropenia. I am not a crier but I burst into tears on the Saturday as I felt like such a failure as a mum as I couldn't parent and as a human. I had had the infusion on the Wednesday.

I am doing better now about 10 days post treatment. I'm not looking forward to the next one on Christmas Eve :(  I understand that if you do OK on one you'll likely suffer on the other. 

All I can think is 2 more infusions and their side effects to go. 

Filigrastim injections aren't nice. I note they tell you to do them on day 3. I was told 24 hours post treatment. 

Best wishes to all. Xxx

Oh lovely I just want to give you a hug. 
You arent a failure, your a fighter whos been thrown in the ring at complete random. I hope it eases for you, its so hard this time of year too. 

Apologies if its too personal but how have you found yourself hormonally? I get quite teary every now and again but Im also waking up at some point almost every night boiling hot with hot flushes so I think between chemo and my Zoladex implant Im also entering the throws of menopause. Thats got to be contributing to how we feel too. 

How is your hair? Mine was bizarre, gave myself a buzzcut and my hair was in my scalp like it had been gorilla glued until one random Friday evening where the littlest touch to my head saw it fall out in clumps!! Within 3-4 days I was completely bald apart from whats like white peach fizz on my scalp and some random sprigs that must just be warrior hairs or something as they are stuck in! I look like a newly hatched baby bird! 

Its so weird how there are such slight differences to how we are being treated! Im told to do mine day 3 but day 3 is also my first day off the steroids so its like a double whammy and I just enter the phase of crawling under a rock. 

Had the good news yesterday that I can stop the blood thinning injections Monday and move onto tablets! My stomach is black and blue so cannot wait to not have to do that daily!

2 MORE INFUSIONS TO GOOOOOOO thats awesome news hon your so so close to the finishing line now, you got this!! 

What month does that put you finishing in?

Ive got my 3rd EC 18th and 4th is apparently booked for New Years day! Then Im on to Picataxel for 4 rounds fortnightly. So fingers crossed and subject to things going to plan I finish chemo end of Feb/early March xxxx

Thank you :)

I haven't been given Zoladex yet but I have been getting hot flushes at night at times.  Hormonally otherwise fairly OK to be honest. I did have one period whilst on chemo so far at the end of Oct/beginning of November but not one since. 

My hair started coming out in clumps around 14 days after my first treatment.  I had a buzz cut short but not all off. I've still got some and more than I expected to be honest. My leg hair hasn't come out either. 

Ah it's good news you can stop those daily injections!!  Ah you are having paclitaxel!  Again it's all different treatments. 

My last treatment should be 15 Jan if all goes to plan. Next one is 24 Dec. Then onto radiotherapy. I don't know how long the wait for that is after chemo. Then 10 years of hormone treatment. X

Oh my gosh the 15th of Jan will be here before you know it too, especially with Christmas around the corner!! Its wild how far we have come hon from those early days to now the joys of chemo.

 Zoladex so far has been okay although Ive got to nip to the out of hours GP now just to check if this really mild spotting Ive had is Zoladex or a early infection. 
Im not sure if Im having radiotherapy yet, initially I was a bit taken aback by my onco even suggesting  it as Ive had a mastectomy and my surgeon said I wouldnt have it. Now Im here in chemo throws though a part of me is like “ ah *** it when in Rome” so will take it if offered. Not sure if Im having it yet though. 
Im doing the 10 years tamoxifen, 3 years Zoladex with the bone strengthening injections every 6 months I think. I have been looking into a hysterectomy though and wondering if to push for it.
Earlier today I ripped up all of my old appointment letters, dont know why I’d kept them as seeing them just made me feel rubbish but it felt good tear them up and lob them in the bin. From hear on out Im ticking off each hurdle and trying my best not to hold on to hurdles past!!

keep me posted how you get on lovely!!  
Here if you ever need to chat or vent xxxx

How did you get on with the out of hours GP? 

I has a lumpectomy and reconstruction so I'm definitely in for Radiotherapy. I'm also ticking off each milestone! It's a big achievement. 

I've also been considering a hysterectomy rather than the injections. I don't like injections and to be honest life and work is so busy the idea of regulated time out for injections is really off putting when it's not 100% either. I'm in for AIs and biosphonates rather than tamoxifen. 

I can totally understand why you'd shread all the letters. I've kept them for the meantime. But I got rid of other paperwork. 

Hope you've had a lovely weekend. Xx

Morning lovely!  

Well turns out I had a very early very mild infection so luckily nipped it in the bud early and on a three day course of antibiotics now. 
Ah that makes sense, I had a mastectomy with no recon so my surgeon was sure radiotherapy was off the table but the oncologist is open to it! 

Oncology are of the mindset of Im otherwise healthy and young so lets launch everything at this and hopefully be one and done! 

I hate your in this position but I am relieved Im not alone in thinking about a hysterectomy! It sounds a lot but I think a part of me would be more comfortable having it. I may be being very naive to what it all entails in comparison though, I need to look into it more but Im just taking it all step by step. 

Had a lovely weekend thank you hon, hope you did too! Ive got EC round 3 Wednesday if all goes to plan so prepping to be out of action this weekend now! 

Take care lovely xxxx

Ah I'm glad you've caught the infection early.  Hope it's easing now. 

Your oncologists view is right I think. That's why I was suprised that they said no chemo for me initially. Especially with a 44mm cancer. But hey ho, we are where we are now. 

Yes I'm taking it all step by step too. I'm definitely going to speak to my oncologist about the options. 

I hope this round of treatment is kind to you!  And I hope that you feel more human by Christmas Day. Xx

Ah I'm glad you've caught the infection early.  Hope it's easing now. 

Your oncologists view is right I think. That's why I was suprised that they said no chemo for me initially. Especially with a 44mm cancer. But hey ho, we are where we are now. 

Yes I'm taking it all step by step too. I'm definitely going to speak to my oncologist about the options. 

I hope this round of treatment is kind to you!  And I hope that you feel more human by Christmas Day. Xx

Hi Ladies, I don't think I'm getting notifications :-(, trying to read through your posts....you both really are so brave and beautiful, going through this. Sounds like you both got this....I really hope you ok as best can be....I'm struggling with complete exhaustion, yawning like Bagpuss all day long.. .had my bone scan on Friday and that was so straight forward. I'm taking tablets to combat tiredness and vitamins for my bones. My hands, fingers and knees ache so much. Still not sleeping great. Love to you and keep strong.....xxx