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

Hi hun that made me chuckle about the mother in law... you do what you need to do hun, your going through this not her...blimey I'd do a fake xmas with you, we nearly bought another ham and a turkey yesterday as we enjoyed xmas dinner so much this year lol. Aww hope the markers get where they should be. Yep radiotherapy is a doddle compared to what you are having now but as I say it is exhausting, well we all different, but it has made me tired. Your getting there hun, so keep that in focus and you go have as many xmas /family and friends get together as you can manage. You deserve it. Chat soon xxxx

 TM1 oh lovely Im sorry to hear your still fatigued after radiotherapy. Ive heard it can take quite a while. Can totally relate to the random little pains in the surgical area, literally had it myself in the last half hour :-D! I think its nerves coming back to life with me sometimes as Im still numb but much less so. Im sure your looking absolutely beautiful and give yourself time and mentally you will feel calmer Im sure, we have all been through so much and its all still very fresh for all of us. The “what ifs” are really difficult on times same as the “This could have all played out so differently” thoughts that just have me feeling so grateful. Lol like an episode of Corrie!! So glad you and your partner have had a lovely holidays, taking it easy and making food together sounds perfect! 

Rest up and enjoy the New Years lovely! 
Xxxx

Hi TM1 unfortunately your friend request hasn't come theough for me ro expect,I will try and send you a request and see if it allows you. Thank you so much for all your kind words,and being here,it really is an awful struggle waiting for results,as said before it's definitely like being in limbo.

 TM1  I'm glad to hear that you had a lovely Christmas. That's really important.  I'm sorry to hear that the fatigue is so bad after radiotherapy. I hope it improves quickly. What have your team said about this? I hope you can manage through work. Going back to a particularly busy period isn't helpful. 

I've just been discussing the fatigue element of this treatment with my husband as the mother in law wants to visit for half term and I'm not sure I can face it. She disrupts our lives like nothing else and exhausts the girls and then it takes weeks to get them back on an even keel. So I'm really not keen on the idea. I've said we need to wait and see what the next steps are first. We had originally said that all family will be invited back for fake Christmas when I've finished active treatment and I've recovered a bit.  She's pushed back numerous times already but we've stated strong so far but I can see my husband's will to do so waining as she's using emotional blackmail. Personally I think she shouldn't be doing this, but it's her all over (her needs are more important than anyone else's). Xx

Hi hun, don't worry I've just jumped on to see how you all are. RedRuth84 Rambleon88 how is everyone? I'm like a stuck record but now suffering with aches in my hands/fingers, putting it down to the tablets or the steam coming off my keyboard at work (it's tax return season so work is mega). I'm still so tired it's impacted my life. I'm so down at the moment. Got a little break booked next week so looking forward to that. Annette79 how are you hun? Coming on here was a big step but we all look out for each other on here, you are not alone lovely. Massive hugs  x

 TM1  Ive been thinking of you lovely!! Im so sorry to hear your down :-( by the sounds of it work being busy isn't helping so glad you have a break away planned hon. Dont be so hard on yourself you arent like a broken record at all. We have all been through the ringer a bit lovely and when you look at it you have only just come through surgery, radio therapy, tablets and the sheer stress of it all. What you have gone through was scary and brutal. Your mind was taken from day to day life to life and death thinking which is no small thing. The body and mind Id imagine are going to take a good while to recover and get back to a place of calm. 
For some reason at the moment Im waking up feeling down but this lifts through the day which I think is a cortisol thing but chemo’s got my body like a chemical pick and mix these days :-).
Im doing alright thank you lovely, finished EC chemo and finding Paclitaxel a bit easier.

Sending lots of love and hugs xx

Thank you sweetheart, we just had a lovely week in Benidorm..  haha I know your thinking omg lol, but we love it, was lucky with weather to, not mega hot but clear blue sky and able to sunbathe and get some big walks in.  Come back to freezing weather...still tired and my hands ache so much. I've bought fingerless pressure gloves off amazon and they help due to the amount of keyboard work I do. Legs ache, head itches omg bloody tablets! Spoke with breast care nurse and she said keep going with them a bit longer as it may settle. Just wish I could sleep...how are you hun where you at and how is RedRuth84? Xxx

 TM1  I'm glad you had a good break away.  I'm sorry you are struggling on the medications.  My oncologist said the side effects reduce by 3 months after you start taking them. They are really important and they can give you other things to alleviate some of the side effects.  Alternatively I've heard acupuncture can work well if you fancy trying that? 

I started Tamoxifen on 4th Feb. I will likely move up to an aromatase inhibitor with zoladex injections at my next appointment. I started radiotherapy on Monday and I'm just about to go to my 4th session of 20 (im getting 15 on the breast and lymph nodes and 5 booster sessions for the cancer site specifically.  Just getting through at the moment. We went out for dinner with the kids on Saturday to celebrate the end of our chemo lockdown which was lovely. 

In good news though my hair is growing back nicely now. I was my most bald at Christmas. The back and sides have better coverage than the top. I am just trying to decide what colour it's growing back as its not too easy to tell. I am a strawberry blonde normally and darker (more auburn) under the top bit. Fingers crossed it's similar.

 Rambleon88 I hope you are doing OK. You must be nearly at the end of your chemo? X

 TM1 oh lovely Im so glad you had a lovely get away, did you find the weather abroad helped with your pains at all? What tablet do they have you on? Same here Ive heard acupuncture can really help and it takes about 3 months for things to settle down. 
Its horrible the pain is effecting your sleep as that just adds to it. Is it nerve pain your experiencing? 

 RedRuth84  OMG reading you going out for food to celebrate the end of chemolock down makes me so happy!!! 

How are you finding tamoxifen? Ive just had my third possibly 4th now Im thinking about it Zoladex implant. Personally found it okay, the hot flushes can be intense and my mood is a little bit down around my cycle but generally with everything considered so far Im doing alright on it. 

Thats awesome news on your hair!! How many weeks post chemo did it start to show? My head is fluffy, its not proper hair but like this white almost felt feeling fluff all over my head. I look like a sweet that fell on the carpet lol! 

Ive got 2 chemo sessions left, 1 this Friday!! So far Ive found Paclitaxel easier going than EC but sweet Jesus when the pains kick in its wild! Luckily they only last 2-3 days then Im alright. 
Waiting to hear back if Il be having radiotherapy as Im in a bit of a grey area for that too but if its offered Im going to take it.

Sending you both lots of love! Its when I visit this chat I see how far we have come. Stay strong lovelies xxxx

I'm finding tamoxifen ok so far. I had it got 6 weeks before my operation too. 

My hair started growing back around New Year. Like yours, its fuzzy all over now. It's definitely thinner on top. But it does seem to be growing quickly. It looks darker than it was. We shall see.  Your words conjure quite a picture which made me laugh! 

Yes the taxols are hard for pain. I suffered with that on docetaxel. But only 2 more to go! Treatment marches on! It's quite a feeling finishing chemo!  Stay strong  xx

I'm finding tamoxifen ok so far. I had it got 6 weeks before my operation too. 

My hair started growing back around New Year. Like yours, its fuzzy all over now. It's definitely thinner on top. But it does seem to be growing quickly. It looks darker than it was. We shall see.  Your words conjure quite a picture which made me laugh! 

Yes the taxols are hard for pain. I suffered with that on docetaxel. But only 2 more to go! Treatment marches on! It's quite a feeling finishing chemo!  Stay strong  xx

 RedRuth84 Glad your doing well on Tamoxifen! From what I can gather the hormone therapies arent easy drugs but still the majority get along with them fine its just a case of letting them settle.  How are you feeling about the op lovely?

Its weirdly exciting seeing hair come back isnt it!! I cant wait to just look like I gave myself a questionable pixie cut and ditch the wigs. Ive got naturally dark hair and a strong widows peak so think Im going to go through a phase where I look like the wee lad from the Munsters. 

To speedy ends to Chemo and Radiotherapy and onwards to funky hair do’s and grabbing lifes danglies!! Xx