SURGERY SEPTEMBER 2018

Going through breast cancer treatment Surgery
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Hi my fellow September surgery friends - hope everyone is doing well.

I’m doing well - have been going to the hospital weekly getting my temporary expander filled, and I think it’s going to be good.

I always feel a bit sore after the fill for a day or two (nothing awful, just tender really).

I now have 425 mls of saline in it and I think thats as much as they intend to do - I have an appointment next week with the consultant who’ll confirm she thinks its enough - apparently they weigh your breast and then try to get the ‘new’ one as near to the same size/weight - its all very clever.

I’ve been taking Letrozole for nearly 3 weeks now - don’t seem to be having any awful side efects - little bit achy today (but that could be the weather as much as the drug?), and I have felt nauseous (again, don’t know if this is the drug or just how I’m feeling at the moment)

I’m exceptionally tired - is anyone else suffering from fatigue?

The October and November surgery threads seemed to have disappeared for a while - I’ve been following some whose surgey has ‘spilled’ over into those months - I hope people start posting on those threads again to keep us up to date (Octobers seemed to have come back but November??? Or is just me?).

Take care everyone - post a little update on how you’re all getting on if you can.?

Love

Helen

xxx

 

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Thank you Linda, I had a lovely birthday ?

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Hi all

Glad to see your mainly doing well
I started chemo this week with some awful nausea and vomiting
I will be speaking with the team before the next one to see if they can help any differently with this xx

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My original mastectomy has nearly stopped leaking, just in time for my ANC that side and mastectomy and SNB the other side!

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Hi Marla
So sorry you are having such a tough time, but I agree with Helenann that you need to trust your own instinct. If you’re not mentally ready for surgery and you are taking the drugs and being monitored, you should be allowed to make an informed decision.
I wish your mother well for her operation and totally understand that you would want to be there for her.

Just to add, when I had my surgery, it was discovered that the tumour was a lot smaller than the scans had suggested, so trust in yourself, stay strong and I hope everything goes well at your meeting tomorrow
Xx

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Good luck with your appointment today, Marla. Sending love. Let us know how it goes. ?xxx

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Am still at my appointment but just to say…my consultant was more than understanding and in fact said that even if I was irritated to ahead in 2 weeks she would advise me not to because I am not 100% sure. She reiterated that being on Letrozole is more important (for me and my type of cancer) than the surgery and that I am safe to defer surgery. Am just waiting for ultrasound scan so they have a good baseline of size of cancer. Thank you for all your support. xxxxx

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That’s fantastic news Marla, I’m sure you’re relieved. Now you can focus on your mum for a while, I hope all goes well xx

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Hi all
Nine weeks post surgery and still not fully healed from the lymph node clearance. Ironically the scar on my weird square boob is perfect! If only my surgeon had bothered to make it boob shaped I’d be laughing! ?
I still have a hole in the axillary scar and it’s leaking quite a bit, I’m so frustrated that apparently nothing can be done to hurry things along. I’m not a patient person and it’s driving me insane!
On a positive note the seroma is gone, the cording has resolved with exercise and I have full movement back in my arm and shoulder.
Things have gone a bit quiet here and I hope that’s because you are all feeling absolutely fabulous!
???

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Hi Jacqb

You must be at your wits end woth it all now
It seems such a long time ago we all started having our surgery’s
Not that my friends or family see it that way they think it’s been really quick
I’m on the chemo train now and would like to get off but there doesn’t seem to be a stop button
Hope all you other ladies are holding up well xx

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Hi JacqB, poor you, I hope it all clears up for you soon.

I’m 6 weeks post mx and SNLB, and I have oncology tomorrow.

Take care, C x

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Hi September friends - I’m now 6 weeks post surgery. Still going weekly to have my tissue expander filled - thought it was the last one last week but when I seen the consultant today she thinks it needed 2 more fills. Will have about 525 mils in it when finished (don’t know if this means anything to anyone - I don’t know if thats usual or a lot - anyway its what she thinks is required so will go along with it).

Been a bit up and down emotionally for some reason this last week or so- feel like I’ve been on autopilot since my diagnosis in August and everyone tells me how great i’ve been dealing with the diagnosis etc- which I have been - taking every appoitnment, scan , biopsy, diagnosis and surgery ‘in my stride’ and suddenly I feel like someone’s turned the autopilot switch off and I’m on manual - and the enormity of what’s happened is only really just hitting home now.?

I know I’m lucky - I don’t have to have chemo - so I need to have a good talk to myself and pull myself together.

Sorry for ‘moaning’ when there’s quite of few having to face chemo. Sending lots of love to you all.

Love, Helen. xxx

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Hi Helen,
I totally understand how you are feeling, because I am feeling exactly the same way. I keep bursting into tears - the tiniest thing can set me off; the lyrics of a song, a gesture on a tv show, a lady who smiled at me in the street!

I think, like you, I’ve held it all in, been strong for everyone else, taken it in my stride, bounced back quickly, been told on numerous occasions how well I’m looking, but emotionally it’s all just hitting me.

I know I have an important appointment tomorrow, but I think it’s a lot more than that. I think we both need to take time for ourselves before we get back to normal, whatever that is ?

Look after yourself and take it slowly and I promise to do the same too.

Love, Chocxie x

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Hi All - this is what makes this forum so fantastic - you can be feeling horrible/low and post here and within minutes there’s somebody there giving you comfortaing words and making you feel so much better.

 

Chocxie - thanks for ‘understanding’ and sharing that you’re feeling emotional at this stage in things as well.

I think i’ve probably been my own worst enemy by putting this ‘strong’ front on, but I’ve always been the strong one, the one people come to for help etc and I’ve tried to remain that person for as long as possible - but I’m at the point where I’m struggling dealing with my own ‘issues’ and i’m not able to cope with others problems and I hate it. You’re so right, we both need to take a step back and start thinking of ourselves.

I’m wishing you loads of luck for tomorrow - make sure you let us know how you get on.???

 

Marla13 - you don’t need to be a September surgery to post on this thread, please continue to follow us all - you’re still on your journey and we’ll all want to know how you’re getting on.

I really admire you so much - you were brave enough to question what was being suggested and to examine your own feelings and instincts. I have to say after reading some of your posts I have wondered if I should have queried about what i was being told, but I didn’t and now I have to get on with things as they are and I must admit I was glad to glad to get rid of the bugger out of my breast asap - so no regrets really.

Keep us posted on how you’re getting on.?

 

Feel a lot better now - a couple of glasses of sauvignon blanc have helped as well.?

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@Chocxsie - thinking of you today, hope oncology appointment goes well. ?
@kateday- if you do find that stop button,please let me know where it is!
@helenann - isn’t wine a wonder? I enjoyed a large glass of Merlot last night and it was utterly delicious. I know people who have given up wine because of BC but that would be a step too far for me. ?
Hi Marla13 - welcome to the September thread, it’s good to have you here. ?
@mrslet, @ pastastmissus and @xela - how are you ladies? Hope all is as ok as can be for you.
September seems a long time ago now that we are on the countdown to Christmas here’s to staying well and staying strong ???

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I would go hunting for the stop button
But I’m currently in bed feeling bloody rough as a badgers bottom
I can’t figuirw if it’s the chemo or the flu jab or just a bit of everything

I also have to agree with the always being the strong one and I still find myself telling people I’m doing ok when I’m reality I’m not
I’m not sure if we do this for our friends and family or a lotttle for our selfs
It would be interesting to see just how many of us are like this
From reading these posts we’re all pretty much the same mindset on the outside
Xx

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Hi All
Thank you so much for the well wishes for my appointment. So, I am back and, overall, it went really well.

My oncologist is lovely and she went through my Oncotype DX test with me. It was very interesting, it was good to receive a phone call saying your score was low, so you don’t need chemo (not that I didnt jump for you at the time), but it’s eye opening to have the results explained to you in detail. My score came out at as low level risk of recurrence, but the more amazing thing is that, when plotted against average recurrence levels after chemotherapy this showed that, in my case, having chemo could have had a detrimental effect and actually increased my likelihood of recurrence. I found this mind blowing, especially as this test has only been available on the NHS for 5 years and the most recent research was only this year.

All this gave me great confidence in my decision to join the current medical trial I’ve been asked to participate in, so I have signed up and now wait a few days to find out the result of randomisation. This is related to treatment to the axillar, as I have minimal involvement in just one node with a further two clear.

A lot of what my oncologist told me I already knew, from reading the fantastic book ‘The Complete Guide to Breast Cancer’ by Prof Trisha Greenhalgh and Dr Liz O’Riordan, which was published in September and written by a breast surgeon and a GP who have both been through treatment themselves. We chatted about the book, which my oncologist had not heard about, and she’s going to read it too - result ?

I spoke to my BCN about how I’m feeling and she seemed quite concerned, but she said it is very common to feel this way at this stage. I’m going to have a longer chat with her on Friday, but she made me feel better (as she always does). There is even counselling available, apparently, but I don’t think I’ll be needing that, just need to learn to talk about how I’m feeling, I suppose.

Anyway, that’s enough from me for now. I hope everyone’s having a good day, even if the weather is miserable.

Ooh, has anyone heard from Alex recently? Is she okay? If you’re there lovely, please post and let us know.

Xx

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Hi Chocxie- thats brilliant news for you - also a bit worrying to think if they hadn’t done the Oncotype DX test you might have been started on chemo as matter of course - and you now know this would have a detrimental effect on you. Good luck on the trial you’re doing - it must be 'good; to feel you’re helping the way forward for other’s in the future. That book sounds interesting - might see about getting a copy myself.?.I hope you’re feeling a bit better emotionally today - I am - but who know’s how I’ll feel tomorrow - I’m all over the place at the moment. My husband has been great - he tells me not to ‘bottle things up’ and I should let him know what I’m feeling - but I’m so used to be the one who doesn’t usually crumble and at 62 years of age (a young 62 i might add?) i’m not likley to be able change the way I am. I just might consider professional counselling at some time in the future if things don’t get better- I might be more able to open up to a ‘stranger’ .

 

Kateday - I’m so sorry you’re feeling so rough - can you mention how bad it’s made you feel at your next appointment and they might be able to do ‘something’ for you? Isn’t it mad the way it’s come out that we’ve all been putting a brave face on things for our friends and family’s sake. When I told family and friends of my diagnosis I was quick to add ‘but its been caught early, its treatable and I’m going to be fine’ - when I didn’t know at that stage whether I would be fine. 

 

JacqB - give up wine??? Is that even ‘a thing’.???. Not a chance.

 

Marla - we’ve been ‘together’ from the start - I think we were originally on much the same path but then we went our different routes. I think your story is inspiring because you didn’t just go along with what was being suggested by your team. You questioned things and looked into things and made informed choices for what was in your best interest (with the blessing of your medical ‘team’). Dont worry that you feel you might have got me wondering if i should have done things differently - my case was different to yours (it was in different parts of the breast and some IDC as well as DCIS), so I’m 100% sure I would have opted for the mastectomy in any event.

It’s just that when I look back to those early days I think I was in a blind panic about having breast cancer - although it was seeming like I was calm and collected about the whole thing - I was like a duck seeming to be gliding along the water effortlessly when in reality they’re paddling like hell underneath. I can remember being told what needed to happen and I just nodded and said ‘sounds like a plan’ - I just feel now maybe I should have taken a step back to think things through - as I say, though, it was always going to be a mastectomy for me.

Great idea about yourPh.D by the way - and if you need any input on the topic we’re all here.

 

Alex - if you’re reading this drop a little post to update us on how you’re doing - we miss you?

 

 

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Helenann

Your comment: When I told family and friends of my diagnosis I was quick to add ‘but its been caught early, its treatable and I’m going to be fine’ - when I didn’t know at that stage whether I would be fine.

Oh yes, this was me, word for word! Also, consoling some relatives when they burst into tears and even reassuring one that her upcoming mammogram would be fine!! Hello, it’s me that’s I’ll, not you ?
I wish I’d had the nerve to say that !!

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Just thought I’d post a quick update - went for my final fill of my Tissue expander today - so the next step will be in 3 months when I’ll be discussing the exchange to a permanent silicon implant and subsequent treatment re nipple reconstruction and ‘work’ on my ‘good’ side to make me more symetrical (hopefully).

The results of my DEXA scan had been received and low and behold I have Osteoporosis! I can’t believe it - what else can go wrong??

I now have to take a bisphosphonate - alendronate, as well as the Letrozole and Adcal - feel like I’ll be rattling at this rate.?

The Letrozole wasn’t too bad at first but now 4 weeks on I’m getting hot flushes of a night - so not sleeping too good and am very achey all over.

Sometimes wonder when’s its all going to end.?