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New diagnosis during covid - waiting for results

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Re: New diagnosis during covid - waiting for results

Hi Sarah,

just wanted to say hi and that I’ve just come out of the other side with similar experiences to you I think. I’m 39 with a 1 year old and 4 year old too! Had mastectomy last summer and thought that was all going to be it, then got pathology results and told as it was her2 I needed to have chemo and herceptin. Which was a bit of a shock to say the least!! 
I may have been lucky but I have to say I found chemo really pretty easy. It was so much better than I feared and less scary!!! And I coped with two young kids. Albeit we weren’t in lockdown so I had my in-laws around. Anyway, I just wanted to say that I understand what you’re going through (I think) and that if you want to email/talk I’m more than happy to. If I can help in any way. 
happy to do the same with anyone else here too if it might help. 
the treatment really isn’t as bad as you fear it might be, I can promise you that. Your fears are usually so much worse. 
x

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Re: New diagnosis during covid - waiting for results

Hi curlybear 

I’m so sorry you’re in this position. A breast cancer diagnosis is a blow any time but right now, with so many potential restrictions, it must be way harder. If you haven’t heard from them after being told Tuesday, it’s quite reasonable to ring them now and ask why the delay. It may be that your results are delayed or that the multi-disciplinary team needs to meet to decide the best way forward. That could augur well for you as it’s the borderline cases they hesitate on.

I’m afraid after surgery my results were even worse (so much for nothing to worry about) and I needed the full works. I’d had my surgery done privately (foolishly thinking they could accommodate my mental health needs better - the NHS proved just as good in the end). I came home the same day by choice. I didn't even know it was possible to have treatment before surgery - I just wanted rid!

I was found to be heavily node positive but a CT scan showed no evidence of spread so thank heavens for those wonderful nodes. But it meant I needed chemo and my consultant oncologist persuaded me to move over to the NHS under his care. There was a long delay. NICE recommends a delay of no longer than 90 days between surgery and starting chemo, for best efficacy, and they just managed to squeeze me in - I had my first chemo on Christmas Eve 2019!!

Chemo wasn't a nice experience (I was ‘one of the unfortunate few who react badly’) but I would still say to anyone that, if it’s an option and there is no strong reason for opting out, do it. The combination with radiotherapy is a better way of improving your chances of a recurrence (and mine unfortunately were quite high). There are worse things than losing your hair - like cancer? Hair loss is nothing if you can look on chemo as a lifesaver and see the funny side of all the body changes!!

It must be very lonely for you. Presumably you’ve been assigned a breast care nurse so make a friend of her (this was something I missed out on till after the main treatments). Email her if you have any concerns. Ring her if anything feels urgent. They’ll be very stretched right now but a good b-c nurse on your side is a boon. My advice would be to trust your team. It’s multi-disciplinary and has loads of expertise as well as knowing your specific details. They may make decisions that you’re not happy with - check NICE’s revised guidelines for the pandemic - but I think my decision to stop thinking and just let them do their job was the best decision I made. I went with the flow. This includes not googling anything (potentially disastrous/terrifying) and now worrying about what all the cancer language means. You can think about all that when you are emotionally stronger. What difference does ductal or lobular mean? It doesn't really matter unless you need to feel in complete control or want to risk feeling scared. That’s what worked for me. You may have a very different personality - we all manage things differently.

Above all, as I said to Sarah, be proactive about your mental health. Any kind of treatment is a challenge - there are so may what ifs and horror stories but why assume you will be the one who suffers? I found radiotherapy a doddle after chemo but I have a friend who was devastated by it - so get yourself into a positive place, confident you have resources to turn to if insomnia is bothering you or if you need to be soothed.

I hope this all makes sense. As you can tell from this forum, there are so many of us who’ve been through it. We have different ideas and have used different strategies - you will find your way to manage it. I wish you all the best,

Jan x

PS. I started a blog with chemo to help me stay positive (occasional lapses lol) - if you’re interested, it’s https://janonlybc.blogspot.com

 

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Re: New diagnosis during covid - waiting for results

Hey Sarah

Sending you big virtual hug my lovely. You have got this journey and we’ll be with you every step of the way. Reach out on here whenever you need to. I too have found the breast unit support services a little sporadic at this tough time but there’s an army of wonderful ladies on here at various stages of treatment that can offer us emotional support and advice.

love and strength to you and your family xx

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Re: New diagnosis during covid - waiting for results

Thank you so much to Jaybro, Curlybear and Suki for replying. It’s so reassuring to know there are others who are experiencing similar circumstances though I wouldn’t wish this on anyone. 

Recovery from surgery has been more difficult with two children to think about. My daughter is too young to understand but I’ve been able to lift her the past couple of days which has been a lovely milestone. The physio definitely helps as I can see a little improvement each day so keep at it Suki!

Jan, thank you for the meditation recommendations, I’ve used an app before to help with work stress but it just wasn’t cutting it the other night! Any tips on getting the other half to talk would be appreciated too! I hope you’re finding your way through all this together. 

Curlybear, I feel very similar to you in that the normal support services are not available or restricted so definitely feel alone. I was able to speak to a cancer nurse yesterday after seeing the consultant and that really helped as she could answer our questions. The nurses hadn’t been available for previous appointments which was hard. 

I’d been hoping for hormone tablets as the next step but unfortunately it’s going to be a longer journey. I start chemotherapy in a couple of weeks and will have 18 weeks (6 sessions) of that then overlapping with trastuzmutab and continuing for 42 further weeks then radiotherapy daily for 3 weeks then starting hormone therapy. All far too much to take in but want to feel like I have a plan so have written it all out onto a calendar. My hormone treatment will start at the end of August 2021! I’m really hoping to be able to get back to work at some point but just have no idea how I will feel or react to the treatments. Terrified for the kids more than anything else as I’ve been trying so hard for them not to see me unwell or in pain. I really hope that by sharing our experiences together we can help to support each other and gain strength from this awful experience together. 
take care everyone x

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Re: New diagnosis during covid - waiting for results

Hey ladies

I too am now in this waiting phase. I had my mastectomy on Monday and pain management and movement is better than I expected. I’ve been told that my pathology results will take 3 weeks due to covid testing. Hoping for radiotherapy rather than chemo too, I think that scares me more than the surgery itself. Let me know how it goes once you get your results xxx

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Re: New diagnosis during covid - waiting for results

Jan,

I saw your response and too am waiting for my pathology results and have been worried as was expecting a call tues and still not heard back yet. I think your mind runs away a little bit. I am really hoping I just need radiotherapy and not chemo too. It’s seems that you have had similar to myself and only required radiotherapy but  Have you had chemo prior to your op or did you just not require it ?  I came home day after op and not seen or spoke to anyone since so feel very alone and worrying more due to all the time at home. Were you offered both as an option? 
thanks 

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Re: New diagnosis during covid - waiting for results

Hi Sarah, 

sorry only seen this message and I hope you have now Results now and your mind is at ease more and they were positive. It is very hard during the covid as feel very alone at times. I am similar age to you and had my op the day before you on 15th April and had a mastectomy and auxiliary node removal and I too have found it difficult at times as all been a whirlwind as only diagnosed 24th March but sticking to my exercises daily and finding ok and getting better each day. I have not had my results back yet due anyday soon so I’m worried as you were about the outcome. 
im so worried about what will be the next step as some have radiation and others chemo which is daunting as don’t know what to expect. Let me know how you get on as nice to know someone going through similar experience and understand hugs 

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Re: New diagnosis during covid - waiting for results

Hi Sarah

I hope by now you’ve had your results and they are better than you anticipated. How you have managed to go through surgery with two little ones I don’t know. I take my hat off to you. I’m sorry no insomniac caught your post in time to be helpful. 

I can empathise with your pessimism - like you I went from “I don’t think we’ve anything to worry about here” to partial mastectomy to full mastectomy with radiotherapy, then widespread cancer and the full works (I hope you don’t get to that stage). What’s important right now is accepting that breast cancer is no longer something to be terrified of - recovery rates are much higher than even ten years ago and there are thousands of us here - we’ve managed it all in our own ways.

What’s also important, regardless of your results today and your treatment plan, is to take active care of your emotional health. You have a husband “not great at emotions” (me too) so you need the support of some trusted friends, people you don’t mind seeing you at your lowest and rawest should the need arise. You could also spend some time every day on whatever rocks your boat - yoga, meditation, mindfulness...I used YouTube videos by Progressive Hypnosis and Michael Sealey. You’re probably laughing and asking when??? The early hours when you can’t sleep are perfect for PH’s Manifest Healing - you’ll be asleep in minutes. It took me through chemotherapy, radiotherapy and side effects!

Do let us know your results and treatment plan. Take care,

Jan x

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New diagnosis during covid - waiting for results

Hello everyone,

I was diagnosed on April 1st after finding a lump on Friday 13th March. At some point in the future I’m sure I’ll find the humour in those two dates! The lump was confirmed as cancerous then a mammogram showed up lots of calcifications. Further biopsies were taken and I was initially told these were benign but unfortunately they were not. Some were pre-cancerous changes and others were already cancerous. I had a mastectomy on the 16th and a sentinel node biopsy. I was told that the cancer spread across too large an area to do a lumpectomy.

All quite a shock but I’m grateful that the surgery was able to go ahead in the current circumstances. It has been really difficult not being able to see family or friends face to face, even just to help pass the time. I am 37 and have two young children (4 and 1) so kept myself really busy by keeping them busy up to the operation date. I don’t think I’ve allowed myself to process any of this. Recovery has been steady and I’m feeling a bit stronger each day, I managed to lift my daughter yesterday for the first time which was lovely. 
My full pathology results are expected tomorrow and I’m terrified, hence the middle of the night post! I’ve been told that the next stage will be either hormone therapy or chemotherapy but at every stage I’ve been reassured of the best outcome and tried to keep positive then have been told bad news. I don’t really have a question I suppose, I just can’t sleep and could do with someone to speak to. My husband isn’t great with emotions at the best of times and it has even been hard speaking to my mum over the phone. 
Thank you x