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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 Jen

Thats great news so pleased for you!  I know what you mean about chemo it’s frightening to even think about it but so many unfortunately have no choice but have to go that route and it all works out fine in the end I’m sure.  

During the time of my results and now I had another scare thought there was a lump in my other breast so was referred back to breast clinic.  Was seen today and it was fine it was just fatty tissue thank god.  I also saw my lovely oncologist today she was brilliant.

I am waiting for my planned session where they will give me the dates of when the radiotherapy will be think it might be end of July.  I’ve only got 5 days of radiotherapy and no booster sessions as she said my tumour was very small.  

My scar is healing nicely and I don’t have much pain anymore which is great.

i still think back to the day when I was diagnosed in March.  I was so numb with shock I feel it has been a bad dream and I’m just waking up.  My outlook on life has definitely changed.  I treasure the moments with my family and close friends who have been so fantastic throughout this whole journey.  And the nurses and people on this forum have so helped me in a very dark time of my life and I will always be grateful for that.

Big hugs to everyone who is reading this.  Always remember after a dark night the early breaking of dawn brings with it a new ray of hope!

 

 

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Re: Surgery on hold due to covid - taking tamoxifen

Hi Debbie,

That's great news! I'm in a similar boat. Lymph nodes clear, but showed signs of 'lymphovascular invasion' so I had the Oncotype DX test, which came back as a low score. Long story short, I won't be having chemo, and have my CT scan ahead of radiotherapy on Friday. Radiotherapy should then start in 3(ish) weeks, and will be 18 days of treatment. Do you know much about yours yet?

I was worried about chemo so it was a relief to hear I won't be needing it, but have to say I feel strangely guilty. I know so many people (in life and on this forum) that had/have to go through it, and I feel a bit like a cheat for not. A very grateful and lucky cheat of course, but still feeling a bit fraudulent. This experience throws a lot of unexpected emotions doesn't it. I'm not quite sure I've caught up with myself yet.

How are your scars doing? Mine have really settled in the last week which I think it helping me feel a lot more positive.

Lots of love to you, and anyone reading this,

Jen x

 

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Re: Surgery on hold due to covid - taking tamoxifen

Hi everyone,

I wanted to share that I got my results yesterday.  It’s good news lymph nodes were clear.  Original tumour which they thought was 8mm was 3mm the rest was IDIS.  They said it was very good news  as the tumour was so small.  I was stage 1 grade 2.  
I will need radiotherapy which will be done once wound has healed.

i do hope you all get u good news soon.

take care and lots of positive vibes sent your way 

kind regards 

debbie 

 

 

 

 

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Re: Surgery on hold due to covid - taking tamoxifen

Hey Kitkat 

thanks for posting and letting us know. Gosh that’s a long time it’s taking.  Fully understand the anxiety it will cause.  
My appointment is on Thursday via phone now I received a letter to say it’s via phone instead of face to face.  Yes the gremlins are making me feel very anxious now so understand what you mean.  I’ve convinced myself of the worst outcome.  Just want this nightmare to go away. 
have lovely partner and great kids And friends who are so supportive but still I feel none of them understand how I feel.  
Yes please do let us know how u get on.

Virtual hug to everyone hoping we can all put this behind us soon. x

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Re: Surgery on hold due to covid - taking tamoxifen

Hi Debbie!

Still no results....it’s been 18 days now and still no idea when they’ll be.  I’m hoping this week though....Covid just delays everything...the waiting just causes more anxiety...... but there’s nothing I can do but carry on waiting. I will post when I get them though.....you will likely get your results before me.

i hope you are managing ok (ish)....It’s just a horrible limbo isn’t it.

take good care

x x

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Re: Surgery on hold due to covid - taking tamoxifen

Hey Kitkat 

i was wondering whether you got your results?  I know you said it was going to be soon.  I hope it was all ok.

hi ladies ... I hope every is doing ok under the circumstances.  

kind regards

Debbie 

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Re: Surgery on hold due to covid - taking tamoxifen

Sorry Whitebread....yes grade 2! .... the stage is the size and the spread Beyond breast I know .... But always get mixed up !  It’s just the grade can be upgraded, that’s my worry, as I’ve seen with others..eg most of it is grade 2, as per biopsy,but then some grade 3 can be in the mix when final results come through.  But it’s ridiculous worrying about what might be I know.

im also worrying about lymph node involvement although none seen on ultrasound.

first time round I had 4mm size from scans which remained 4mm after surgery.
2nd time , the scan size was 37mm but the actual size was 34mm ...so that was a ‘downgrade’ ! 
x x

 

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Re: Surgery on hold due to covid - taking tamoxifen

Hi Kitkat 

just wanted to know have they told you it’s stage 2 and not grade 2?  I was told they cannot tell you the stage until the tumour comes out and is tested.  
I’m IDC grade 2 tumour was 7mm. Staging has not been mentioned until after testing.

 

 

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Re: Surgery on hold due to covid - taking tamoxifen

Hi Susie 

Thats great news you have your appointment I’m so pleased for you.  

thank you for your good wishes. Fingers crossed for you and it all goes well x

 

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Re: Surgery on hold due to covid - taking tamoxifen

Hi bonbonboosh 

glad it all went well for you!

All I know is that I’m glad surgery is over.  Slowly recovering today seems to be a better day than yesterday.

think we are all getting our results shortly and will feel nervous of course.  But I’m not sure why I’m just not trying to think about it to be honest.  Maybe it’s just that I’m burying  my head in the sand I guess.  
trying to enjoy the sunshine today will go for a little walk with my girls and enjoy the grand kids and try to be normal.

You all have a peaceful day x

 

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Re: Surgery on hold due to covid - taking tamoxifen

Hello ladies

Glad to hear you're safely through surgery. Gosh, the pain and bruising afterwards sounds a challenge, hope you're all managing ok and I wish you all speedy recoveries and positive follow-up results.

I've had my clinic appointment through at long last so hopefully on 23 June I'll have an idea of when they'll do my mastectomy. I feel so much better, just having a date in the diary!

Love to you all

Susie x

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Re: Surgery on hold due to covid - taking tamoxifen

Hi Jen

Glad to know you too are safely out the other side of surgery.... the bruising is amazing isn’t it!  
i still haven’t heard when I will get histology results...think they just phone the day before to give you an appointment....but should be this coming week....my stomach turns over just thinking about it.....my last 2 diagnosis were of DCIS....so cancer but not invasive....So I knew before the final histology reveal that even with an ‘upgrade’ it likely be Stage 1 maximum....but this time I know it’s definitely IDC stage 2 as a minimum.....so there’s no room for any ‘upgrade’ that wouldn’t see me having chemo....
yesterday was a better day ....my daughter came with 2 of my granddaughters to play in the garden and we all went for a long walk with the dog then had a chippy tea on the decking.....simple pleasures and take your mind off the bad stuff.   
Anyway it’s sunny again today here in the North West, I am in shorts and vest top after the last week being back in winter woolies!  and I am going to enjoy my garden and have another long walk with my partner and dog.

Hope you have a lovely weekend enjoying the sun too

Take care

Love K x

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Re: Surgery on hold due to covid - taking tamoxifen

Hello bonboonboosh.

So sorry to hear about your worries .

I have also been diagnosed but not started on tamoxifen .

Same clinical details as you. 

Can we have a private chat .

I do not mind giving you my tel number .let me know how you  feel.

Being a nurse too just does not help .

I don't have wattapp but I have wattaspp. 

I think I will end up in a mental institution omg .

I cannot watch TV or do anything productive either ..

.sorry really new to this

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Re: Surgery on hold due to covid - taking tamoxifen

Hi Whitebread, Kitkat,

Glad to hear that surgery went well, although not glad that recovery is so difficult. Thinking of you guys and sending lots of love. I read on another post that those lavender microwave pillows can be quite good? I hope the pain eases quickly.

Aside from bruising (which seems to be everywhere!) I have no idea what to expect under my dressing. I’m due to take it off on Monday and am a little nervous.

I was doing ok not thinking about histology results until yesterday, but then the gremlins got me and I had the first panic attack I’d had in weeks. I find I’ve always been desperate for ‘the next thing’ so for such a long time i thought that was surgery, and I’d feel better after surgery. That was short lived! Now I feel like I’ll feel better after my results as I’ll know where I stand and what my treatment will look like. I need to stop piling on so much on the next thing making me feel better. 

I have my results appointment (telephone call due to covid) on the 24th, which is 2.5 weeks after the op. The waiting is just the worst isn’t it.

Wishing you both a markedly better day today. Lots of love,

Jen x

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Re: Surgery on hold due to covid - taking tamoxifen

Hi Kitkat

Not a walk in the park I’m afraid as you say you have had both so know only too well.  No one prepares you for this!  I kept reading on the forum and it never said it would be this hard! I have broken down today a few times.

as you say might get easier by next week so look forward to that.

hey try not to think about the gremlins on your shoulder.  I know it’s hard not to but our overactive minds can assume all the worst.  I did that when I was waiting for my HER2 results convinced it was going to be positive.  The more power we allow the mind the worst it gets.  I don’t want chemo either so know how you feel.  For now it’s best to get through each day I feel.

a gentle hug my dear keep u chin up.  We will come out of this safe and sound x

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Re: Surgery on hold due to covid - taking tamoxifen

Hi White bread

Good to year from you.... safe out the other side.....it’s no walk in the park is it ? even WLE... and I have had both that and mastectomy.

Take it easy, only do what you need to, eat well and sleep when you can.

I.m day 9 And still on paracetamol at night....can’t get comfy as it still hurts when I lay on wound..Not bad during day now, but still ( manageable) pain when dressing and showering.

sending a ( very gentle) hug x x x

i thought about taking the steristrips off, then decided against it.

i have no appointment for results, they said they will phone at around 2 week mark, so Will be on pins every time I get a private number call.

the gremlins are now sitting on my shoulders every night doing their worst....I have convinced myself there will be grade 3 found in the final histology or something in sentinel nodes meaning I will need chemo. And so the wait goes on....

 

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Re: Surgery on hold due to covid - taking tamoxifen

Hi everyone hope u are all doing ok

i had my surgery on Tuesday it’s been a really rough few days.  Surgery went well I’m told.  I was in recovery for almost 5 hours.  Finally discharged at 11.30 pm on Tuesday.  
I’m in a lot of pain, boob is a sore sight.  Taking codeine and paracetamol which is making me spaced out.  Feel extremely exhausted and feeling sick today too.

i get my results in two weeks I’m told.  
I hope I start to feel better soon I did not expect it to be like this.  I guess everyone is different with pain and how fast they heal. 
take care everyone! 

 

 

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Re: Surgery on hold due to covid - taking tamoxifen

Hi Susie 

Nice to hear from you.  

it’s good to get on with life and try to be normal so good on u for u lovely weekend! This Covid thing is depressing enough without on top what we are all going through.  I do hope u get seen soon and get your surgery date .. so agree just need to get on with treatment etc.  Yes I agree do what you feel is right for you and worry about reconstruction dates later.

 
thank you for you good wishes!

i look at it as we are all on a roller coaster ride .. just need to strap ourselves in and ride through the bumps!  

I’m being positive and I know we will all  kick the C in the butt and continue with our normal lives very soon 😀

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Re: Surgery on hold due to covid - taking tamoxifen

Hi everyone

So sorry I've not responded for a few days. We've had a surprisingly sociable weekend - at a distance of course - which included seeing our younger daughter in person for the first time in weeks! A real boost.

Hope those of you who've had surgery are recovering well and good luck Whitbread for tomorrow (Tuesday).

I am still here waiting for any contact from the hospital. I should have an appointment letter any time now to go for the July follow up but I've had no surprise calls to say I'm up for surgery. I am starting to think about just having the mastectomy and worrying about reconstruction later - really so that I can get on with treatment and minimise recovery time. I just want so desperately to get some control back in my life and have an idea of what's ahead - we don't even have the fun of dreaming about post-lockdown holidays or family celebrations as there's always the cloud that I could be pre/post surgery or going through radio/chemo. I'm small boobied - the one that's going is a B cup and the other one is A cup (always been wonky!) - and my low cut tops and breast feeding days are long gone - so it wouldn't be a massive shock to be flat on one side. But I'm worried that I may regret that decision and it seems to be such a long wait for reconstructions at a later date as they're not a medical priority. My husband (who is absolutely fab) is supportive of whatever is right for me and won't be fazed either way but even he is veering towards mastectomy so that we know it's gone and we're moving forward. 

It's all so difficult isn't it?

Anyway, best wishes to you all. 

Susie x

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Re: Surgery on hold due to covid - taking tamoxifen

Hi Whitebread, Kitkat and Susie,

So sorry I've missed all your messages this week, I came down with a bit of a head cold so was desperately trying to get rid of it before tomorrow! Luckily, I'm better now, and am strangely looking forward to it! I'm not sure I'll say the same tomorrow morning...

Kitkat - thank you so much for the best wishes! Am glad your op went well last week, thank you for detailing it all for us. I think I would've panicked going into the operating theatre for anaesthetic, so grateful for the heads-up! Good your recovery is going smoothly, have you anything to take your mind off things before results? Hopefully they'll be soon.

Whitebread - If I don't speak to you, good luck for Tuesday! Nice to know we'll both be on the mend together!

Susie - have you heard anything since your last message? I hope you get a date really soon, the wait must be so difficult.

Lots of love to you all,

Jen x

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Re: Surgery on hold due to covid - taking tamoxifen

Thanks Kitkat.  I know the worrying is constant  if not about one thing than another waiting for the test results on this journey is just another level of feeling and being anxious!  I’m the same now in size 8 and everyone keeps saying u have lost more weight.. normally would have said thanks but under the circumstances start to feel more anxious. Trying to mediate and do yoga although the yoga just makes the biopsy area more sore!  Not winning right now I’m afraid.  Keep u chin up keeping my fingers crossed for everyone of us xx

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Re: Surgery on hold due to covid - taking tamoxifen

Hi Whitebread

 

i think everyone is erring on the side of caution with Covid.  Because surgery weakens the immune system and people with low immunity are likely to have much poorer outcomes with Covid, no one wants to take any chances with our health.

I had terrible pre surgery anxiety, and am now having terrible results anxiety.... it’s exhausting being this anxious all the time. I am back in my size 10 jeans no problem and any other time I would be thrilled....but it’s more all the wrong reasons 😳

Keep in touch , let us know when you are out the other side, you will be absolutely fine, they will take such good care of you!
x

 

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Re: Surgery on hold due to covid - taking tamoxifen

Ah thank you Kitkat for the good wishes.  I must say I’m feeling nervous!  Good to hear you are doing well and sounds your healing  slowly!  Oh wow I thought I could go back to work on Monday next week so I guess I’m being too optimistic here - I work part time from home.    

my Covid test came back negative so definitely surgery will go ahead.  I have found if I overdo things I’m getting tired and the biopsy area can still be sore sometimes although that was done back in March judging by that I don’t reckon I can go back to work too soon.  
Is it normal for hospital to give 4 weeks sick note?  If that’s the case I might need to speak to them.  This is all new to me and I’ve been fairly strong but having a few Wobblies in the last week.

please do take care and keep in touch it’s really good to hear from you and know how you are doing.

take care x

 

 

 

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Re: Surgery on hold due to covid - taking tamoxifen

Hi Jen

we haven’t ‘spoken’ yet...but I gatecrashed you thread last week as I was having surgery and seemed to be at the same point as you all.

i noticed you were likely having surgery tomorrow, so just wanted to wish you well and hope it all goes smoothly for you.

take good care

Best Wishes x x x

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Re: Surgery on hold due to covid - taking tamoxifen

Hi Whitebread

just wanting to wish you well for your surgery this week, and say I will be thinking of you.

I’m off the coedine now and just on paracetamol....I’m ok unless I shower etc then it’s still quite sore. I’m still really tired, Took the dog on his usual hour walk and was exhausted.

I have been told to stay home as much as I can as surgery can weaken the immune system and on top of that my recent bloods showed a Vit D deficiency so  Need to boost my immune system with some vit D tablets from the GP.  

My wounds look clean and healing but will keep steristrips on for

now.  The hospital gave me a sick note for 4 weeks so that saves getting another one for a while.

not sure of date for results....at my hospital they just ring you the day before now ( since Covid) to say go in....my biopsy results took 9 days....but will wait and see when I hear.

Take good care

X x x

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Re: Surgery on hold due to covid - taking tamoxifen

Thanks Susie

 

just read your story, you been waiting a while eh... waiting is the pits isn’t it.

i had a mastectomy in 2018 and was really no more painful than WLE ... you will be well looked after.

they haven’t stopped breast surgery at all where I am...just moved it to a private hospital to lower the Covid risk.

see you are ER+ same as me....I’m still taking tamoxifen from last time but will be moving onto letrozole soon as now post menopausal.  I’m grade 2 from biopsy .... so just hoping no tiny bits of grade 3 found in final histology.... but it is what it is and can’t worry about what might not be...it’s those little gremlins that sit on your shoulders and mess with you head that I hate at times like this.

I didn’t have reconstruction , was my choice and I’ve no regrets, but totally understand why people do.  I am a double A cup so I have the smallest ever prosthesis! 

Really hope you hear soon, even just a date to work towards.

 

Are you still working? I worked up to the day before, but am working from home due to Covid.... and just logged on as and when...gave me a bit of structure....but previous time I went straight off cos I couldn’t handle the work environment.  Hope you are being well looked after at home.

 

well I’m going to spend all day in my PJs today!

take care x x

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Re: Surgery on hold due to covid - taking tamoxifen

Hi Kitkat

Good to hear that you had the op and all seems to be going well. You certainly sound upbeat 😊

Reading the detail is very useful for those of us still to have their op, even if we're not having the exact same thing done - gives us an idea of what to expect.  

Good luck with your recovery and for the results in 13 days.

Susie x

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Re: Surgery on hold due to covid - taking tamoxifen

Hi Kitkat

So good to hear it all went well.  Thank you for sharing all the details I now know what to expect next Tuesday!  Weird I did think of you today and thought I hope it goes well.  We are going through exactly the same thing so it’s useful to me personally that you shared your personal experience exactly so I have a good idea of what I’m in store for next week.  My appointment is at 9.00 am on Tuesday for the hard wire to be inserted and then they said I can go home and make my way to the hospital in the afternoon.  I can understand how u felt walking into the theatre I will no doubt be the same.  It’s good that u were taken care of though it makes all the difference in this scary time.

fingers crossed for you for your results.  And I hope you recover from surgery soon.  Take care.  Hope to speak soon.

 

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Re: Surgery on hold due to covid - taking tamoxifen

Hi Whitebread, Susie and Jen ( and anyone else who is kind enough to read! )

hope you are coping ok.

JUst feeling the need to share my day!  but don’t want to bore anyone, so fine if you don’t make it to the end!

i had my surgery today and it was ok.  Had to be at my NHS hospital at 0845hrs - had wire inserted ( needed 2 local injections but it was ok in the end) then had mammogram to check it was placed right - then had radioactive agent via a needle into the nipple( which sounds horrendous but was actually fine ).

then had to drive 30 minutes ( my parter not me! ) to private hospital which is doing all nhs cancer stuff at moment - surgeon marked me up with big fat purple marker pen! - He did my mastectomy back in 2018 so I felt in very safe and kind hands -then went down to theatre at 3pm - had to wait for it to be deep cleaned - think they only did 2 ops today .

so had a wire guided WLE - he was very particular, and made one incision on out breast but lower down , so could potentially wear a swimsuit again, and he also took the sentinel nodes out from this incision.  Then he took some skin away from inner breast Side around the Areola, To even up, so there will be no puckering , and better cosmetic effect ( not that it’s a priority but nice anyway) .  I was a crying wreck walking into theatre, normally they do anaesthetic in a side room, but with Covid, they have to do it in theatre.  But everyone was so lovely, it’s just the enormity of walking into the big room, with blaring lights and about 10 people all bustling around doing there own jobs.  back from surgery at 4pm.  Didn’t come round until 7pm, was totally out of it, but no pain, go a pain nerve block put in at time of surgery.  The surgeon popped in to say it all went to plan.

My BP was very low so had to wait until it got to 100/60, then was discharged at 9.45pm.....wahey!   
45 minute drive home and now relaxing in bed....and am WIde AWake!

so results in 13 days - am really hoping that is is all grade 2 and remains at 12mm as per biopsy. But will worry about that another day.

just wanted to add, even though we are living through a pandemic and social distancing, and I have been without my partner all day at both hospitals, as per Covid rules, so many people held my hand today for comfort that I never felt truly ‘alone’.

 

Good Night, God Bless everyone x x

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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