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

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

Put a post on hun...xxx

Sorry meant to say I've put post on hun....xx

Morning lovelies!! 

sorry Ive been slow to respond. 
oh TM1 Im sorry to hear your achey, the weather this time lf year surely doesn't help either. How did you find radio therapy? Ive heard that can really cause quite intense exhaustion, have you got a nice amount of time off for Christmas?

oh girls yesterday annoyed me a bit. So headed off to chemo for 2pm, there was a delay so didnt get seen till 3:10ish. They flush my picc sort my dressings and 20mins goes by and nothings started. About 10mins after this a lady walks up to me looking incredibly nervous and said “Ive not got good news Im afraid, the pharmacy was given the instruction but did not make up the EC. We are too short staffed to do this now so you will have to come back tomorrow” followed by “they feel awful”. Yup me too pharmacy lol!! In the end I managed to atleast get my Zomenta infusion done so it wasnt a complete waste of time but its so frustrating as it pushes everything back another day now. I find out today if they will still let me go ahead with treatment on the 1st now or if I have to rebook everything again today. Just praying this doesnt push my strong side effects days into Christmas day as my son has been so worried. 

If I go a bit rubbish after today for a while and dont get a chance -

I genuinely cant thank you enough for spotting this chat and responding, its made such a massive difference and Ive not felt as alone. Its wild to go back to the start of it sometimes and see how far we have come.

Il be thinking of you all. Hope you all have amazing Christmases and New Years xxxx

 TM1  I hope they can help with the aching and fatigue! That's not good at all. 

 Rambleon88  oh no! I hope there are no issues today and you will recover sufficiently to enjoy Christmas Day.

I was waiting in the chair for an hour at my last cycle before I was seen and even had my obs done. But it did go ahead as planned. I hope thay this doesn't happen on Christmas Eve! I've got a 2.15pm appointment. 

Thank you all for your support in the last few months. It has helped me a lot. I hope you have a good festive period with your families, irrespective of everything else. Xx

 RedRuth84 Rambleon88 morning lovelies...I'm so thankful for your support as well, certainly got me through some dark days that's for sure. Yes radiotherapy is exhausting, daily for 5 days, then it hits you, I'm still struggling with tiredness and aches, omg...even my hands hurt, blaming that on keyboard work at the office, it's so bloody busy....looking forward to the Xmas break really. Finish xmas eve at lunch time and back 2nd Jan....you are both doing so well and I pray you get through your treatments and not get messed about...every day is so important for you...take it easy over Xmas, take it easy and stay strong. We've got plenty Xmases to look forward to....love and festive wishes ladies xxxx

I'm glad you are having a break from treatment TM1   Radiotherapy does sound exhausting. That's why I've said we will do fake Christmas with our 3 sets of family and friends after I've got over the Radiotherapy (much to the mother in law's disgust). 

I'm off for cycle 5 of 6 shortly. Had a bit of a shock yesterday when the oncologist told me my tumour markers were slightly raised following Friday's blood test. She had me go again yesterday for a further blood test. But she said its unlikely to change much over 4 days.  She said there could be any number of reasons for the slight increase, but because it's been noted we have to keep an eye on it.  I'll ask when I go later what the trend was before. 

@Rambleon88  I hope you are feeling better after your last cycle now and can enjoy your Christmas with your family. 

Have a lovely festive period both!! Xxx

MERRY CHRISTMASES!!!

Sending lots of love and hope you all had a wonderful Christmas and boxing day!! 

oh TM1 radiotherapy does sound like quite a beast in itself. I think people can underestimate the physical demand of it as much as the emotional. Im so glad your having a much deserved festive break! How are you feeling otherwise lovely? Definitely double check encase of skin sensitivities but for your hands maybe give a epsom soak a go? Its supposed to be good at getting the aches out but not sure for radiotherapy aches. 

 RedRuth84 Sending a big welldone hug and hope 5/6 is kind to you lovely, eyes on the prize you are doing awesome and so so close to the chemo finishing line!!. I know its really hard physically and mentally but you’re nailing it!

Round 3 EC was hard, I dont actually think it was the chemo though, its the Pegflig jab thats getting me. I ended up in hospital on the 23rd as my chest went really weird and I just felt so anemic but after blood tests, chest Xrays and a festive CT to rule out a lung clot or anything else all they could say was how insanely high my white bloodcells/ netrophils were and its as Id done the jab the day before. Looks like it works a little too well with me but I started to feel better mid Christmas day so I think its working its way through the ole system. 

My 4th and last EC is planned for the 2nd and as grateful to it as I am for being available to me I am quite looking forward to seeing the end of the red stuff. Im just hoping paclitaxel is a bit gentler. 

Awe RedRuth84 thats rubbish with the elevated markers :-( I know how hard it is but try not to worry. I can remember reading when I think it was Zoladex that said on it that itself and certain treatments can cause temporary elevations in tumor markers for BC and prostate. If you have started or changed any meds or supplement’s it may be worth noting especially if it’s linked any way to hormones. 

Speaking of hormones - HOT FLUSHES GOOD LORD!!. I vote we rebrand them to LAVA FLUSHES as Hot doesn't do them justice!

Hope you have wonderful new years both and thank you so much for being here, its helped so much more than I could ever say xxxx

Hi Ladies RedRuth84 Rambleon88 hope you are both continuing to do well, just catching up on your threads. Sounds like you are finding that inner strength and that makes me happy to read about how you are. I'm still finding the tiredness difficult, get to about 3pm and that's it, I hit that brick wall and I'm done in. Absolutely dreading work on Thursday:-( it's going to be extremely busy month. Had a lovely Xmas, nice and chilled and quiet, was just lovely....saw Suzanne's post, hun I've requested a friend link to you. We have all been in that horrible time period...the wait! Yes it's awful and we all deal with it in different ways, I couldn't cope at all, but try to stay strong and think positively. Do not google anything...it only makes you worse. Whatever the outcome we are here for you, this forum has helped me so much to get through....now all of you keep that finish line in your sight....I wish you the absolute very best for 2025, and thank you for your support. Maybe one day we can get together....I must look at my settings as still not getting notifications lol. Chat soon my lovelies xxxxx

Hi Ladies RedRuth84 Rambleon88 hope you are both continuing to do well, just catching up on your threads. Sounds like you are finding that inner strength and that makes me happy to read about how you are. I'm still finding the tiredness difficult, get to about 3pm and that's it, I hit that brick wall and I'm done in. Absolutely dreading work on Thursday:-( it's going to be extremely busy month. Had a lovely Xmas, nice and chilled and quiet, was just lovely....saw Suzanne's post, hun I've requested a friend link to you. We have all been in that horrible time period...the wait! Yes it's awful and we all deal with it in different ways, I couldn't cope at all, but try to stay strong and think positively. Do not google anything...it only makes you worse. Whatever the outcome we are here for you, this forum has helped me so much to get through....now all of you keep that finish line in your sight....I wish you the absolute very best for 2025, and thank you for your support. Maybe one day we can get together....I must look at my settings as still not getting notifications lol. Chat soon my lovelies xxxxx

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

 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

Hi Ladies RedRuth84 Rambleon88  yes being away made such a difference I felt normal again but this weekend omg so lethargic and tired and I think I've got an infection, had a cold and for first time in a long time what I was blowing out my nose...yuk! Will attempt to get a doctors appointment.....my hands are worse..clicking thumb which I've no idea where that came from and is painful. To add as well waking with a dry mouth like sandpaper....so fed up but reading about you lovely Ladies omg your doing so well and truly my arms are wrapped around you both. So happy that your hair is beginning to show signs of growth. Made me giggle the 'sweet' comment. It's late and I'm in bed, but I'll jump on soon.   Keep going and you've given me strength to...I'll look into acupuncture to xx