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Covid stress

18 REPLIES 18
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Re: Covid stress

What made you decide to stop taking the tamoxifen? 

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Re: Covid stress

Wow so you had a lot of treatment 😳

I'm not happy with putting chemicals in my body either 😕 I thought I was pretty healthy but since reading this book I really wasn't! Now I'm researching and changing my lifestyle and the things I eat and drink. It feels a bit like the shift in your mind you get when you give up smoking if that makes any sense?? I don't want,crave or miss the things that I'm cutting out of my diet, it's exciting and positive to be trying new foods 😁 can't wait to be over my surgery and start to get my body fit with exercise 💪

IMG_20200621_154407.jpg

 definately a must have for anyone a massive eye opener 👀

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Re: Covid stress

I was 49 but pre menopausal. My periods stopped after 2nd chemo. I can’t say for certain what the side effects were as Id had chemo and herceptin. I just remember being very tired. The only thing I can def link to Tamoxifen was that my white blood count dropped to slightly below normal though doctors were not concerned. I just worried too much about what it could do long term and that freaked me out.  I’m not comfortable about putting chemicals into my body (apart from wine). In all honesty I think it’s worth taking to see how you cope with it.

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Re: Covid stress

I am so sorry to hear your new diagnosis 😟 I hope youre OK x

How old were you when you started tamoxifen and did you get any bad side effects? 

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Re: Covid stress

Re Tamoxifen: I took it for 2 years instead of 5 as the benefit of those 3 extra years was tiny.

I have just had a mastectomy for a new grade 3 tumour. I’m not convinced Tamoxifen made any difference. I also had chemo, radiotherapy (to other side) and Herceptin. I had rads to the effective breast in 2006 for DCIS.

There is no way to predict how each individual will benefit so you have to go with a combination of the advice given and your gut feeling.

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Re: Covid stress

I am sorry to hear this, and I hope it is easily dealt with this time too. 

Did you have a mastectomy last time?

What are you having this time?

I am willing to take the risk and I think the changes in my life and being thoughtful with what I put in my body can only help lower the risk. 

There would of been no guarantees that you wouldn't of had it again even in the tamoxifen so I hope youre not beating yourself up about not having taken it first time xxx

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Re: Covid stress

Hi, 

It was £4977 for a lumpectomy with reconstruction of the breast tissue at the same time.

This has included many consultation visits and phone calls, the same support off their breast care nurses and the follow up appointments too. 

X

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Re: Covid stress

PS, how much roughly to go private?

A x

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Re: Covid stress

I had the chance of Tamoxifen 11 years ago after first lumpectomy and like you thought the 3%-5% wasnt worth it. Now I am back here dx last week with cancer in other breast, just something for you to think about. A x

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Re: Covid stress

Hello,

Surgeon says that It’s being done retrospectively as if they had known about the size and grade this would have been done before surgery.  I guess they are looking for spread although with clear lymph nodes I bloody hope not! 

xx 

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Re: Covid stress

Hi Mel, 

Can I ask what the ct and bone scan is for?

I have refused radiotherapy as the risk reduction is only 4%, that's 2% more than if you do have it. I decided the side effects from the radiotherapy wasn't worth the 4% chance of this same cancer returning in this same breast.

I'm thinking I will try the tamoxifen and see how I go, but for a small reduce in risk of other cancers I'm not going to put up with possible daily dibilatating symptoms from it. 

Xx

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Re: Covid stress

Hi Suki and Martj

Im in a similar position to you both. Get Oncotype result next week and just wondering about risk versus side effects of treatment. My tumour was bigger than expected and upgraded from 2 to 3. Clear margins and lymph nodes clear. I had a CT and MRI yesterday and am waiting on a date for a bone scan. Before surgery the plan was radiotherapy and Tamoxifen but the goal posts seem to continually change. I almost feel it’s like cracking a nut with a sledgehammer. I don’t want to have unnecessary treatment for a low recurrence probability but equally I don’t want to be dealing with cancer again! 

best wishes

Mel xx 

 

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Re: Covid stress

My gut says it's not worth or for the minimal percentage it gives but then will I wish I had further down the line??

I hope you also get good results xx

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Re: Covid stress

Hey Martj 

Thats great results for you, so pleased 😃💖

I have the results of my oncotype score tomorrow which will determine if I’ll benefit from chemo or not. My tumor was downgraded from 2 to 1 so hoping for good news but you never know in this game do you? Everyone’s cancer is so different.

I was told that I’ll go on hormone treatment anyway but as I went through the menopause at 46 I’ll be taking anastrozole. Some people seem to really suffer with side effects from hormone therapy and some sail through it. What’s your gut feeling?

xxx

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Re: Covid stress

Hi Suki, 

How are you getting on?

I ended up seeking a private consultant that would give me the support I needed and the op I wanted, had surgery last Tues and got the results of lymph node etc yesterday, all good, no spreading to lymph nodes and pretty high survival percentage. Just got to decide on taking the tamoxifen now with only a 3% benefit to me I'm not sure it's worth the extra side effects from taking it?

Are you having to take hormone therapy?

Xx

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Re: Covid stress

Hey Martj

Yes, I'll be looking at a reconstruction further along the line - who knows when that will be 😞

Trying to stay strong and take each day as it comes. The BC nurses are being amazing at checking in on me but of course they don't have the answers 

xx

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Re: Covid stress

It’s awful where is the duty of care??😔 so are you having to have reconstruction at a later date? 

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Re: Covid stress

Hi Martj

I completely understand your stress. I had my mastectomy just over a week ago. Prior to that the discussions I had with the hospital were a little guarded. They answered most of my questions but when I asked if, under normal circumstances, I would be eligible for an immediate reconstruction they shut me down and refused to discuss it as the option is 'off the table at the moment' xx

 

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Covid stress

Anyone else struggling with getting straight info about treatments available due to covid?? 
feels like lots of uncertainty around it all which is the last thing needed when trying to make a decision about which treatment to choose. The only straight fact seems to be, you can have a mastectomy but we won’t reconstruct??