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

Oh hon!! Im so glad you have some time off for RT (obviously wish you were off for nicer things but still) your work havent been very supportive at all during all of this and god bless you, you really have tried your best with them!! The two finger salute lol!! 
Yup I have to have a echocardiogram before starting chemo, apparently its standard so Im waiting on that now but that will be done on the 6th so hoping things arent delayed too long. 
oh bless you with the tattoos, had you had any tattoos before? 
Have they said which tablets they are considering? 
Ive been told Il be on tamoxifen for 10 years which Im a little bit scared of as my mood can be so effected by hormones! Hope you have a fabulous weekend at the concert hon xxxx

Hi hun, only just seen your reply, well I got the call today off my absolute lovely breast cancer nurse, appears I'm post menopausal so I'll be on letrozole, be about two weeks when it's ready for me...and I've got to have a bone density scan....ffs scan for this, scan for that lol. Well if my mood gets any worse working here, God help em !!!! Lol. Never had tattoo before although my son, jesus he's got too many for my liking and my daughter had them to, although hers are quite subtle and not on show...found myself looking at breast cancer tattoos the other day.. omg lol, dare I....

Yeah took time off as I explained for radiotherapy but wish I didn't have to but hey piece of mind and not rushing back and forth....

Have a lovely weekend to hun. Xxxx

Thank you so much for the Primark tip - I had a very successful trip there after work today. Felt a bit low/scared by ‘bad boob’ looking weird when I saw it in the changing room mirror but cheered up a huge amount by the post surgery bras looking and feeling good on. 

 RedRuth84 hi Ladies, how are you both? Truly hope you are both OK as can be...xxx

Hi  TM1  thank you for checking in. How are you getting on? How are you finding your treatment? 

I had my third of six cycles last Wednesday so I'm half way through chemo after I get past these next few weeks. So that seems like such a milestone! But my 5 year old spiked a temperature over the weekend and I'm hoping that I don't get whatever it is she has got :(  

How are you getting on Rambleon88 ? 

Hello ladies!!

Im 5 days out of my first chemo session of EC. Looks like my PICC line has given me a clot which is rubbish. Otherwise Im hanging on in there just feeling a bit rough and sleeping loads. Sending lots of love and positive vibes to you both xx

Hi Rambleon,

I am glad to hear that you've had your first chemo, but sorry to hear that you've developed a clot with your PICC line. I hope that this has now been sorted for you. Be kind to yourself and give in to sleep if you need to.

Kind regards,

Jolamine xx

Thank you Jolamine!  

Ive slept like a bear recently, Im finding chemo tiredness quite a unique experience. 
At the moment the clot is now being treated with blood thinners I have to inject daily. Must admit mentally I really could have done without that added extra but oh well. 

Hope everyone is doing well xxx

Hi hun, aww you're doing great, remember that...I'm rooting for you...oh no, hope your little one gets well soon and pray you don't get it, so much going round. I'm OK, radiotherapy finished which was ok really, just the travelling every day.. already feel like Bagpuss lol, yawning my head off. That's side effects of radiotherapy and the letrozole tablets I'm on....so finding work a bit too much at the moment....got my bone scan on 13 December so hoping that's OK to....I really hope and pray everything works out for us all....stay strong xxx

Hi sweet, aww hope the clot gets sorted for you, your closer to the finishing line now hun, sleep is the best medicine, just do what you need to do....I'm all done with radiotherapy now, was ok though. Got my bone scan on 13 December so hopefully that will be ok... tiredness is getting to me, I'm like Bagpuss yawning from 3pm onwards! So finding work a bit too much at the moment. Hang on in hun, your doing well....my thoughts and prayers are with you...xxx

Hi sweet, aww hope the clot gets sorted for you, your closer to the finishing line now hun, sleep is the best medicine, just do what you need to do....I'm all done with radiotherapy now, was ok though. Got my bone scan on 13 December so hopefully that will be ok... tiredness is getting to me, I'm like Bagpuss yawning from 3pm onwards! So finding work a bit too much at the moment. Hang on in hun, your doing well....my thoughts and prayers are with you...xxx

Oh hon, Ive been thinking of you all!! 

Ive heard many people mention how exhausting radiotherapy is, Im so so glad its done for you now though lovely. Your truly on the path of being able to put it behind you. Let us know how you get on with your scan. 
This red-devil stuff is quite something, I slept at one point for 16 straight hours! Luckily today I feel a bit more human. Just gutted my PICC line decided to act up but the blood thinners feel like they are working to sort it now. 

 RedRuth84  the half way mark!!!!!!  Thats such a huge milestone, well done. This path isnt easy but you got this. Hope your little one is okay lovely, when I had my PICC looked at there were so many people coughing around me when I was waiting for my ultrasound I just sat there trying to breathe through my collar instead. 

Xxxx

 Rambleon88  I'm sorry you are having such a hard time on EC. Just listen to your body and only do what is necessary.  Remember this too shall pass. I'm taking this advice myself. As I'm struggling much more this time. Been nearly fainting a few times this week. Broke out in  a cold sweat just before the school run this morning so my husband did it on his own. When I felt a bit better I took the dog out on my own as she was sorely disappointed that she couldn't go on the school run. Now I'm just resting. Usually I'm feeling pretty OK by now in other cycles so this is a bit unexpected. It'll be a whole new ball game next time on Docetaxel I'm sure. 

 TM1   Do take it easy. Its a lot to get used to. Speak to your GP/oncologist about any side effects of the letrazole.  I am told they can help manage them. I'm glad you've got through the radiotherapy now. That's a big milestone.  Do let us know how you get on with your scan. 

 hcubix  I can only echo everyone's comments here. I will keep everything crossed for you that you get good news, but the community here is brilliant for supporting those who do need further treatment. 

Keep positive ladies. I will be keeping you all in my thoughts.

Xx

 RedRuth84  oh lovely Im sorry to hear your having a rough time too, please look after yourself and rest. Weirdly I turned a corner and out of no-where started to feel much better!! It was almost like a wave of feeling very unwell and then it sort of lifted. Still having a nightmare with my arm as the clot is still there but my husband has gotten good at helping me with the blood thinning injections so praying that doesnt delay my next treatment. I have a meeting with my Onco tomorrow so see what he says. How are you finding eating? 
When do you start on the Taxel hon? Is that the same as Paclitaxel? Im doing 4 Pac after my ECs. Fingers crossed a lot of what Ive read seems to show its a little bit gentler or atleast isnt as harsh as EC. Hope yourself and family are keeping well hon, Il be thinking of you all and here if you need to vent or just go “AHHHHH!!” :-)! Xxx

 Rambleon88  thank you lovely:)  I felt a bit better after a significant rest today before collecting the kids.   Then by their bedtime I felt rubbish again and picked up after eating. Hopefully I'll feel better tomorrow as it's been more than a week now since mu treatment.  

I hope your meeting goes well tomorrow. Let us know how you get on. I'm glad you are feeling much better. 

In terms of eating on EC I haven't experienced too much into terms of taste changes. Tea and dairy does taste funny for a few days. It's the reflux I have issues with mostly. The first week I don't eat a lot. Second week it picks up and third week I'm normal. Weight has been pretty stable throughout which is good. 

I start Docetaxel on 4th December. It's odd isn't it. I wonder why you are on Paclitaxel and I'm on Docetaxel?!?  Yours was ER+ right?  Yeah I've read most find EC worse than taxols. But that worries me as I feel like apart from the neutropenia on the first cycle (where actually I didn't feel too bad) and this weird reaction this time, I've not been too too bad. No significant nausea. I've rested when I've needed to but I almost expected worse given what people say about chemo. So I'm worried I might be flawed by the Docetaxel instead :'(   But I'm keeping as positive as I can. Time will tell and it's all in the interests of kicking this thing out of the park. 

Best wishes to all and positive thoughts  xxx

 RedRuth84  oh lovely fingers crossed you get along okay with the Docetaxel! From what I can find from others the EC is the rough stuff energy and nausea wise, Taxels tend to be achey! Its all so unique to the individual though. Just be kind to yourself and rest when you can. 

Yup mine was 8/8 ER+ and 8/8 PR + Her2 -. Maybe its because Im doing dose dense chemo? Subject to my PICC not causing any delays Im due to have chemo fortnightly xx

Oh gosh well this afternoon!!

I walked into my oncologist appointment and just broke down crying and cried through the whole thing. No idea what exactly set me off but literally the second my foot entered the room I was crying. 
I dont know, I think sometimes I just crave reassurance that they cant really give me. Bless his heart the oncologist went through predict with me again I think just to try and reassure me. I dont know if anyone can relate but sometimes I just feel so guilty and I miss life before this so much it hurts. I dont know what is wrong with me today. 

xxx

Oh Rambleon88  I'm sorry honey.  But I totally get it. And the doctors really won't give ultimate reassurance either which is exactly what we crave.

I was thinking today I want my life back too. I don't want to be worrying about this forever. I want to forget.  I want to know I'll be here for my small girls for whatever life throws at them. I can't bear the thought I might not be. They don't deserve this. I lost my mum when I was 34 to this disease and that was far too early. She never even got to meet my youngest (though she knew I was pregnant) nor even the notion of my niece :'( 

I really do need to go through Predict with my oncologist. Chemo was just a fait de complis for me. She told me it gave a 15% benefit and nothing else really.  I also want to ask her about the tumor markers in the blood that they keep measuring with each cycle. I want to know what I'm up against on top of the  oncotyping result of 59/100.  I'm a lawyer so I hate unknowns and I need information to process things. It's a nasty habit lol. 

Stay strong lovely - sending big virtual hugs.   Xx

 RedRuth84 Im so so sorry about your mum hon. It really is heartbreaking, its so hard when you have little ones, I pray that Il be around to see my son grow up into a man and have a family of his own. I know it as is the case for everyone that it was never a given but it never felt so under threat before.
 I don't know if its mentally healthy but a part of me wants to just go into almost a purposeful denial after chemo, just live my life as before unless Im given a reason not to, as if it never happened. Its so hard right now though my hormones and emotions are a bit everywhere since starting chemo. Im really hoping it gets easier in time. 
Have you found it harder to process since starting chemo hon? I felt more positive within myself before starting it and wonder how much its messing with me mentally. 

Definitely go through Predict with them hon, especially if you only did it in the beginning because if your anything like me it was a lot to take in. My predict V2 scores are pretty good (V3 are awesome but its not been approved I dont think) but I desperately need to come to some sort of peace with uncertainty otherwise Im going to drive myself bananas even if I make it to 100. 

OMG I so wish Id have gone into law welldone!!! I can fully relate to not liking unknowns and yes can only imagine in your profession thats even more pronounced. Oh we will get there lovely, we have too! 
sending you a massive massive hug back xxx

 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