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 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

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

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 hun, apart from the bloody tiredness I'm OK. Still getting the odd pain in the operation area but suspect it's still internal healing....still a bit of numbness going on. My hands have been a bit better but I suspect that's because I've not been bashing the keyboard at work like 50 mph...lol. saw some friends boxing night and they say I look great, maybe I do look ok but it's on the inside of my head, the what if's story line keeps popping up, Jesus it's like an episode of Coronation street sometimes ha ha....took xmas day at a slow pace, with my fella at my side, we didn't rush, we did the dinner between us and everything went well. Still kept thinking it could have been so different....so I'm grateful for where im at if that makes sense. Glad your feeling better after your chest episode gosh that sounded worrying hun but sounds like it's going well for you. Stay strong hun.....speak soon lovely xxxx

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