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, I think I spent about 3 weeks looking like one of the blues brothers as I just kept sunglasses on all the time to hide puffy teary eyes. By the sounds of it you have done a incredible job at keeping it together. If they fall like I said its totally natural, understandable and we are all here. 
I can totally relate, having a surgery date is so helpful as its a step forwards again and another move to putting this behind you. Its a scary time but before you know it you will be the other side of surgery. Any questions you think I can answer around mastectomies and going flat please don't hesitate to ask I cant promise Il know but happy to help. 
I hope Friday goes well lovely, I work remotely but will be back in work next week now as I cant afford not to work during chemo but grateful I can work from home. Xxx

 BF1   I'm sorry to hear you are going through this. I'm glad that you have found our chat helpful though. Certainly I found chats in this forum helpful.   The waiting  for news is the worst part and having a plan Certainly did help me focus and cope. 

Keeping everything as normal as possible helped in the run up to the surgery.  

I lost my mum to breast cancer in 2019 (her original diagnosis was in 2004 when she was 56 and we got the news it came back I  2016) so I understand your worries but treatments have changed a lot since these times. So please remain positive. A positive mindset makes such a difference psychologically and has actually proved to have a physical impact too! Xx

Thank you and I’m so sorry you lost your mum to this. You’re absolutely right about  treatment advancing all the time. Sending very best wishes.

HiBF1 Rambleon88 RedRuth84 ladies, sorry not been on lately, just had a *** week. BF1, we understand what your going through and crying well I still can't seem to stop. 

I've got dates for Radiotherapy, starts Monday 11th Nov every day for 5 days...I had already booked Wednesday to Thursday off work months ago, so I decided to book the Monday and Tuesday off as well. As I've said before I don't get the support from work apart from about 3/4 colleagues so I thought you know what I'm using holidays for that week as there is no way I'm travelling to and from work in between Radiotherapy appointments...I'm giving the *** of a boss a two finger salute...I'm so fed up. Don't want wrapping in cotton wool but for **** sake a bit of genuine support would be nice. Just get treated like there's nothing wrong with me...rant over. How are you all doing? Rambleon88 aww hun, heart check? what is that for? Sorry I sound ignorant don't I, you know I'm not being ignorant, hope your OK lovely. 

I've got my tattoo dots too ladies lol, hmm had to grit my teeth a little but I did find it ok. Apparently I did great holding my breath (the radiotherapy nurse practices the technique with you first). It was daunting being in the scanner but looking back it was ok. The nurses were amazing and understanding and talked me through it all. Still waiting for the blood results to come back to decide what tablets I'll be on...worried how long that's taken even though I've chased up....off to Wales at weekend, Paul Weller in concert, can't wait as it will be a fab little break. Sorry it's long post ladies....and it's late...chat soon lovelies and BF1, we are all here for hun....xxxx

Hi BFI,

I'm glad to hear that you now have a date for surgery. I had a double mastectomy 14 years ago and stayed flat. If you want any information about that, feel free to ask.

Kind regards,

Jolamine 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 ? 

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

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