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Surgery on hold due to covid - taking tamoxifen

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Re: Surgery on hold due to covid - taking tamoxifen

Hi

my surgery is next Tuesday 9 I was diagnosed in March 25 so had to wait for surgery due to Covid but was put  on Letrozole.  Think Jen is in the same boat she’s having her surgery on Monday and believe has been on medication too.  I see u have had IDIC twice and now primary feel for u but they seem to be moving very quickly in your area which is very good news.

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Re: Surgery on hold due to covid - taking tamoxifen

Hi Whitebread!

it looks like even routine surgery is back Up and running where I am judging by the number of people in the pre op unit today....so really hope  you all get your surgery dates soon.

X

 

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Re: Surgery on hold due to covid - taking tamoxifen

Hi Kitkat 

welcome to the thread!  Sorry your finding yourself on the forum.  Yes it seems u are at the same stage as the rest of us although u surgery is planned this week which is really good news.  As you will read many of us have been waiting for surgery due to Covid which has caused us all some worries whilst some have been put on medication.  Not much I think we can do apart from trying to be positive and taking each day at a time.  And of course try and share our experiences and rant and rave as it’s a great forum to do that as we are more or less on the same journeys and perhaps can understand what we are going through.  I’m sure the others will all come along and offer great advice.  Please keep in touch and let us know how u got on as a couple of us have surgeries planned for next week.

plse excuse typos this spell thing has a mind of its own 

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Re: Surgery on hold due to covid - taking tamoxifen

Hi Kitk

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Re: Surgery on hold due to covid - taking tamoxifen

Hello Everyone

 

would you mind if I joined your thread? You all seem around same stage of treatment plan as me.

this is my 3rd time round.  Had DCIS ( stage 0) twice in left breast ( 2012 and 2018) ...now got a new primary in right breast .....from biopsy is looking like stage 2 , 12mm ER+ PR+ HER-

Had biopsy 11th May, results On 20th .... now booked in for Surgery on 4th June this week.... they are doing Breast cancer surgery in a Private hospital in my area... to cut down on Covid risk.

Had my pre op and Covid swab this morning then signed consent form, so all good to go.

i found these forums really helpful having treatment buddies last times, and even more so during these times of lockdown and social distancing.

x x x

 

 

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Re: Surgery on hold due to covid - taking tamoxifen

Hi Jen

Good to hear you have a surgery date. Hope it all goes well.

I've not heard anything yet, I've not even had an appointment date through for breast clinic. My last appointment was 31st March when I was told I'd need a mastectomy but they were postponing for 3 months due to Covid. I've had a couple of conversations with the breast clinic nurse who assured me that all surgery files were reviewed at least once a week and that the Letrozole would be doing its job, keeping everything under control.

I've been ok emotionally and patient, but I am starting to feel a bit ignored. I don't feel safe or looked after. I know they're all busy and have a huge backlog but I'm getting desperate to move on and know how my life is going to pan out over the next couple of years.

 

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Re: Surgery on hold due to covid - taking tamoxifen

Hi ladies 

nice to hear from you Jen and u update great news u surgery is on Monday.  I’m due for surgery on Tuesday next week.  Covid test on Saturday.  
saw consultant last week.  I had to complain to PALS as I had left a number of messages for breast nurse and none of my calls were returned.  It soon got things moving once I complained.  I must say the breast nurses on this forum have been excellent. My HER2 result came back negative which I was thinking would mean no chemo unfortunately that’s not how it goes I’m told by the consultant.  Depends on results following surgery.  So I guess more waiting time again!  
hope everyone is doing well under the circumstances!


 

 

 

 

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Re: Surgery on hold due to covid - taking tamoxifen

Hi ladies,

I hope you're both well?

I was just wondering how you guys are getting on and if there's any sign of surgery?

I'm pencilled in for Monday for a lumpectomy, so self-isolating this week and then having a covid test on Friday. Nice to have a little break from Tamoxifen, even though I'm sure it's psychological!

Hope you're both ok,

Jen x

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Re: Surgery on hold due to covid - taking tamoxifen

Great comments bonbonboosh and absolutely right we must all keep in touch and see how we are all doing!

ive got my pre op tomorrow too so will know more then I hope!

please everyone keep sharing! 

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Re: Surgery on hold due to covid - taking tamoxifen

 
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Re: Surgery on hold due to covid - taking tamoxifen

Hi Whitebread1 and Susie,

Firstly I'm so sorry you're both in this position, it sucks with everything else that's happening. But in a strange way it's nice (!) to know we're all in the same boat, and at least we know it's a problem being faced everywhere rather than localised to areas and it's not us as individuals being de-prioritised.

I may be getting excited very prematurely, but I received my pre-op phone call appointment today completely out the blue, for tomorrow morning. Surgery may not still be for a while (I'll ask tomorrow), but this is movement in the right direction. Hopefully we'll all start seeing a shift over the next few weeks.

Please let's all keep in touch, as it sounds like we're all in a very similar place in terms of diagnosis type, treatment and timeframe.

I know how worried I've been about it all, and I'm sure you're the same, so sending lots of love to you both,

Jen xx

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Re: Surgery on hold due to covid - taking tamoxifen

Think everyone needs a virtual 🤗 

we can all do with just getting our treatments and moving on with life!

My tumour is 8mm I’m told small and ultrasound said no lymph involvement it’s grade 2 but don’t know what stage ... it’s oestrogen positive but not sure about what HER2 result is as not been given as yet! But was told highly unlikely it will be positive but u read all sort of stories on the forums ! But it’s understandable as no two stories are alike but people on the forum do understand how we are all feeling ... scared, vulnerable and brains in over drives!  Trying to be positive  and taking one day at a time and not think too far ahead but the the night times when u cannot sleep the word cancer causes all sorts of anxieties 

 

 

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Re: Surgery on hold due to covid - taking tamoxifen

Hi Bonbonboosh

I'm in a similar situation to you and share the same worries and concerns. 

I am stage 2b - 88mm invasive tumour with some "dodgy" cells around, taking it to 93mm. Thankfully nothing in the lymph nodes that they can see. ER positive, HER2 negative.

I've been on Letrozole since the beginning of March and was told on 31 March that I need a mastectomy, one side. Due to Covid, I was given an appointment for early July to discuss surgery and dates. I have called my breast cancer nurse who has confirmed that they are reviewing all surgery cases on a daily basis and that they are getting back to some kind of normal. This is primarily because we have a low infection/death rate in our area and the hospital hasn't been particularly impacted by Covid. 

I ideally want an immediate reconstruction so that puts me further down the pile as it's a longer op and would need follow-up appointments and minor surgeries. The nurse did say that I may get a call to go in earlier than July so I am rather hoping this is the case.

Letrozole (similar to Tamoxifen) is often given to help reduce tumours prior to surgery so I'm trusting in the medical team that I'm safe to delay and that my dodgy bit is not going to get any worse any time soon. But, like you, I just want to get on and have it done. I want to get some kind of control back into my life and feel that I'm progressing forward, rather than just floating around and waiting for others to decide what I do next. 

So, in summary, I feel lucky that my BC is at the lower end of awful and that the prognosis is good; I'm reconciled with having a mastectomy and trust that I'm ok to delay but I just want to have that date in my diary and get on with it!!

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Re: Surgery on hold due to covid - taking tamoxifen

Hi 

I’m in the same boat was diagnosed on 25 March and was put on Letrozole due to Covid.  My receptors were estrogen positive and waiting for HER2 results.  My tumour is 8mm told it’s very small and grade 2.  I feel a bit scared that I’m put  on hold while others are having surgery and don’t understand this to be honest.  
I’m happy for those that are having surgery but just don’t understand why others are out on hold.  
Funky understand how you feel

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Re: Surgery on hold due to covid - taking tamoxifen

Bonbonboosh, mental health is a a bit of a problem and no one tells you about that at diagnosis.  You’ll find a way to cope but you may have to work through a few colourful moods in the process.  I think we all go a bit batty after cancer.  Take care. X

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Re: Surgery on hold due to covid - taking tamoxifen

Thanks Mel, I really am so glad it was better than you were expecting, you read such horror stories!

I've just done a bit of research online and I think it may be because my surgeon has recommended reconstruction as well as tumour removal (called Mammaplasty). The cancer is right in the cleavage so could look very strange, they want to pop in a bit of fat from somewhere else to fill the hole.

I think it's the reconstruction part that's on hold which probably explains the wait compared to yours and others. I'm sure there's no way they would wait that long without being sure the tamoxifen is stopping it growing. The wait makes sense when I can rationalise it, but I think it'll be a real mental battle to sit on, just want it done! Thank you so much for your replies during my wobble.

Really great you're home, did you need to stay overnight? Hopefully the recovery will be really smooth, and your only real problem will be remembering to sleep on your back 🙂

Jen x

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Re: Surgery on hold due to covid - taking tamoxifen

Hi bonbonboosh,

it was 29mm. Surgery was done in a private hospital as an NHS patient. Glad the first step is over. Feeling a bit bruised but nowhere near as sore as I expected. Early discharge team from my local hospital came to the house yesterday and removed the drain and redid dressing s. 
I really hope you get a date soon. I would assume there are national guidelines but who knows in these times. At least if you had a date it’s something to work towards rather than uncertainty. Do you have a breast care nurse you can ring or maybe the consultants secretary? 
best wishes 

Mel x 

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Re: Surgery on hold due to covid - taking tamoxifen

Hi mel71, I'm so pleased you had surgery and are on the path to recovery! How are you feeling? Wishing you a speedy recovery.

May I ask how many mm your tumour was?

That's interesting you've had surgery as I was told anything other than mastectomy was off the table completely. It's very difficult to know how much to push back to the hospital (if at all). I hate pestering people, but 3 months seems like such a long time to sit knowing I have this sitting in me!

Wishing you a speedy recovery, and best wishes for the next part of your treatment x

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Re: Surgery on hold due to covid - taking tamoxifen

Thanks Mai7 for your reply, I love your idea of finding things to try and feel like I've got more control.

Keeping fingers tightly crossed that it won't truly be a 3 month wait to surgery. It seems such a long time to sit and seemingly do nothing before 'proper' treatment starts. More worried about my mental state than physical state!

Thanks again x

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Re: Surgery on hold due to covid - taking tamoxifen

Hello, 

I was diagnosed on 22nd April, Er+ Her-vel I had wide local excision and sentinel node biopsy two days ago. Hoping it’s all gone and that lymph nodes are ok. No problems were identified at ultrasound so fingers crossed. Results in a couple of weeks and then see oncologist for a plan. Before surgery I was told it would be radiotherapy and tamoxifen. 
I hope your surgery happens soon 

best wishes x 

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Re: Surgery on hold due to covid - taking tamoxifen

Hi bonbonboosh, welcome to our lovely forum but sorry you find yourself here. I’m sure others will be here soon but if not then feel free to “gatecrash” another thread where others are already chatting.  It’s good news that your cancer isn’t in your lymph nodes and as you’re on Tamoxifen immediately it should start to have an effect soon.  Side effects tend to be cumulative.  3 months is a longer wait than the typical 6 weeks maximum but the Tamoxifen should slow this down and cancer moves slower than our minds think.  The anxiety at diagnosis causes a panic fast mind effect.  I’ve been on Tamoxifen since Nov 2018 and doing ok on it.  I was stage 3 8/8 ER+/PR+ HER2- in March 2017 and also had chemo and mastectomy.  I’m a “doer” and after diagnosis I channelled my “doing“ energy into improving lifestyle to reduce my risks:  https://www.wcrf.org/dietandcancer/breast-cancer I think it’s hard to feel that you have no control and this gives you something back.  

Feel free to ask any questions.  Sending love and best wishes. 💞 Xx

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Surgery on hold due to covid - taking tamoxifen

Hi lovely ladies,

I'm 33 and was diagnosed 2nd April with grade 2 hormone-receptor positive, HER2 negative breast cancer, fortunately it has not spread to my lymph nodes just yet.

I'm being told that lumpectomy surgery will be in 3 months (it always seems to be 3 months even as the time goes on!). In the meantime I've been put on tamoxifen, which has been fine and *touch wood* no side effects just yet.

I understand that any surgery apart from a mastectomy is on hold due to covid-19. On the whole, I've been fine with this - it is what it is - but then other times it scares me silly.

I'm most worried about:

- Tamoxifen not working and it spreading during the 3 months 

- I'm a worrier and a 'do-er', and this is 3 months extra to worry without any 'doing' to get rid of it.

- The 3 months could keep being extended if coronavirus continues to be such a drain on NHS resource and operations continue to be cancelled.

I was just wondering if anyone else is in the same boat? Sorry for my little rant, it's such a niche scenario in these 'unprecedented times' (gosh what a terrible phrase!) and it'd be lovely to be in touch with others.

Lots of love to everyone on this forum

xx