Surgery on hold due to covid - taking tamoxifen

Diagnosed with breast cancer Recently diagnosed with breast cancer
1

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

2

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:  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. :revolving_hearts: Xx

3

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 

4

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

5

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!!

6

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