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New Diagonsis during Covid

30 REPLIES 30
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Re: New Diagonsis during Covid

Hi , finished my rad 20th Feb and Chemo on 20th December.I had stage 1 grade 3 lump was sent to California for testing came back with scoring 40 so required chemo if over 20 . 
My sister in law was diagnosed with the same Stage 1 grade 2 as your self in February had her WLE in 12th March and has just started a 5 days of intense rad instead of 15 sessions her last one will be on 18th May . We both had not felt any lumps  and was just a normal breast screening , so lucky we were due a mammogram 

Good Luck x 

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Re: New Diagonsis during Covid

As chemo has been allowed to commence (slowly), they think this is a better option. This is what would have happened to me Pre-Covid. I will still have surgery at some point but maybe just a lumpectomy. 

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Re: New Diagonsis during Covid

Hi Martj - I just wanted to respond to your question about having a single mastectomy. I had one in 2004 and lived with that until 2012 when I had another mastectomy and a bilateral reconstruction. So I lived with one boob for around 8 years age 26 at diagnosis. I got used to it and got along fine. Once you get sorted with a decent prosthesis and some mastectomy bras (there are some nice designs nowadays too and a much wider choice than there was 16 years ago) you can manage fine with it. Then if you are able to have a delayed reconstruction at a later date if you want one that is always an option. My recon went well and I’m pleased with the result x 

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Re: New Diagonsis during Covid

Hi,

im glad you’re moving forward with recovery well did you have reconstruction?

I am considering a single mastectomy and wanted to k ow first hand how it feels??

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Re: New Diagonsis during Covid

Oh wow! Why has it been cancelled and chemo started??

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Re: New Diagonsis during Covid

Well this has truly been a rollercoaster of a week. My surgery was booked to take place today.. which has now been cancelled and I’m now due to start chemo. Just waiting to get booked in. That truck keeps hitting me with full force..

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Re: New Diagonsis during Covid

Sorry new to this forum, just seen all the messages 🤦‍♀️

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Re: New Diagonsis during Covid

Just seen this was posted two weeks ago, and no replies?? Have you had your treatment?

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Re: New Diagonsis during Covid

Hi, 

So sorry to hear you’re diagnosis 😔 

I too have had a new diagnosis I last Thursday of invasive ductile breast grade 2 and my options are also limited. How can we make an informed decision about what treatment we want, a decision that affects us for the rest of our lives when all of the options aren’t straight forward anymore, so many ifs and buts and sorry you can’t have that?!? 
I am having a meeting with the consultant on Thursday, gonna see if I can get some more info before they bung me in for surgery on Monday 😐

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Re: New Diagonsis during Covid

Hi 

it’s really hard waiting on a date I only got my diagnosis a week past Monday I just want to get the show in the road all the waiting to get seen biopsy results etc is not good for our mental well being Hope we all get our dates soon Lots of love xxx

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Re: New Diagonsis during Covid

Hi mumbear

I couldn't imagine having to homeschool whilst going through all of this too. I take my hat off to you.

It's terrible how anxiety creeps up on you. I've just opened my post and I've got a letter confirming my node biopsy results for next Thursday 14th May. Feel like I've been run over by a bus again.

Take care everyone xx

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Re: New Diagonsis during Covid

Glad it all went well for you. Just the waiting is so awful! I am rocking in the corner with it all whilst trying to homeschool! 
Hope you get results quickly and they come back clear. Xx

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Re: New Diagonsis during Covid

Yes - it’s being outsourced to the local private hospital.. I have to have the Covid test first. Did you have that? The thought of it 🤢 and I think what it then going to happen and I slap myself for being so daft 🤣 

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Re: New Diagonsis during Covid

I was like that last week when I had a sore back! The reality was I had been working on the laptop all day on the sofa in an awkward position but my mind told me otherwise! 
I really hope you get a date soon, have the hospital mentioned outsourcing to private hospitals? 

best wishes

Mel x 

 

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Re: New Diagonsis during Covid

Our patience is definitely being tested at this time! Mine is being outsourced to a private hospital too. Hoping for views of the Thames 🤣

The relief of having the surgery over is definitely a positive and now the drain being gone you can see that you are moving forward. 
best wishes 

Mel xx 

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Re: New Diagonsis during Covid

Morning ladies

Wishing anyone of for procedures this week the absolute best of luck.

I had my mastectomy last week and had my drain taken out yesterday - was a relief to lose that I can tell you! Back on the waiting game again now for the results of the sentinel node biopsy.....my patience is certainly being tested throughout this nightmare.

Mumbear, I can't believe that you still haven't been given a date 😞 My case was passed to our local private hospital and the staff there were so happy to be back working with patients last week. When I went in yesterday they were without any patients as the NHS hospital had decided not to send any! I'm sure in reality it's a logistical nightmare but it seems such a shame that there are these skilled people not being utilised. 

Anyway, rant over. I really hope that you get a breakthrough soon. Sending a big virtual hug. 

Keep us posted xxx

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Re: New Diagonsis during Covid

Hi 

Thanks for your reply and wishing you lots of luck for tomorrow Best wishes xxx

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Re: New Diagonsis during Covid

Hi Mel71 - hope your op goes well today. 
I still do not have a date and feel I’m on a ticking time bomb 😢 my anxiety is through the roof and any ache and pain, makes me think it’s spreading! 
Let us know how it goes. Xx

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Re: New Diagonsis during Covid

Hello 

I’m in a similar situation. Admission tomorrow for WLE and node biopsy. Because of Covid the sentinel node can’t be tested during the op as normal so it means another two week wait for results... I have no patience! 
wishing you well 

xx 

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Re: New Diagonsis during Covid

I’ve just been diagnosed with stage 1 grade 2 breast cancer and I’m awaiting a wide local excision with sentinel node biopsy Not good being diagnosed with this anyway but it’s worse during the COVID situation It’s a weird one you think you are ok one minute then you burst into tears and feel so angry I can hardly speak to people It’s scary but I’m glad to have joined this forum to meet ladies in a similar situation .Much love xxx

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Re: New Diagonsis during Covid

Mumbear, inflammatory can only be diagnosed from visual presentation.  It doesnt have a different “type” to other breast cancers so you can be ER+ or HER2+ or TN etc and be inflammatory too.  The symptoms are swelling (noticeably larger breast) and heaviness, inverted and distorted nipple,  a red “hot” inflamed area of skin and skin texture like orange peel (the orange peel effect is caused by cancer cells blocking the dermal lymphatics).   It is often mistaken for mastitis early on and it appears suddenly and rapidly.  My cancer was diagnosed by biopsy which is the always the final confirmation for cancer.   The COVID19 is having a terrible impact on the cancer community (and other illnesses) so I understand it’s hard for you to accept.  I hope all goes well with your surgery and hope you get the clear margins.

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Re: New Diagonsis during Covid

Hi mumbear 

Glad you’ve found your way into this forum at this difficult time, it’s been a godsend for me. I was diagnosed with grade 2 invasive bc at the end of March. I was told I need a mastectomy as I have 2 areas in the same breast. Albeit small, there’s calcification in between so a mastectomy is the best option. I would usually be an ideal candidate for recon but I understand why this can’t happen at the moment. After almost 3 weeks of being left in limbo and not really getting answers from the bc unit things have finally stepped up a notch this week. I’ve been booked in at the local private hospital on Monday, courtesy of the nhs. They have taken 300 of us fellow cancer patients to proceed with surgery over the next few weeks and they were busy setting up a chemo ward, maybe that’s something you can ask about?

In the meantime fire any questions you have at this forum, the ladies here have a wealth of knowledge that is invaluable. They have helped me gain back some control of my situation and I’m sure will continue to guide me in the future.

Take care and lots of love xxxxx 

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Re: New Diagonsis during Covid

Hi Fidget McFidget, thanks for you’re reply. My consultant is ringing me again on Monday so I will ask again what risk assessment has been done for both avenues. It’s so hard as it’s all done by phone as hospitals are not seeing patients awaiting treatment. 
Thank you for your tips on post-op too. Sounds like I need to kick hubby out into the spare room and create a fortress of pillows!  I wish you well on your recovery and chemo. Xx

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Re: New Diagonsis during Covid

Hi Mai7, thanks for your reply. Yes it is the danger of contracting Covid whilst having chemo is why I’m not being offered it. Doesn’t make it any easier to accept though but I understand. Covid and chemo is not a good mix and the mastectomy was the safest option at the moment. 
Did they diagnose inflammatory at biopsy for you or after surgery?  My lump is quite painful at times and I do wonder if I’m that too. 

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Re: New Diagonsis during Covid

Hi Jaybro, thank you for your reply.

lots of useful tips and yes you’re right, this is going to save my life. 
I’m a 34D so will need some support for my righty. I have some Front zip up sports bras so will see how that goes!

my hubby will be taking the time off to look after the children - with Covid they are all here anyway!

I had an awful day yesterday, just couldn’t stop crying, today I feel stronger and more ‘I can do this’ 🥊 

thank you so much for your reply and o wish you well too. Xx

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Re: New Diagonsis during Covid

Hi Mumbear 

I'm 3 weeks post op and they didn't grade me until after surgery and the full pathology results. I had a 35mm, grade 3, er+ and her2+ tumour. Removed via lumpectomy with clear margins - despite being close to the pectoral muscle (mastectomy was 1st option). I'm starting chemo next week. It is really scary having this during covid, however after speaking to my oncologist today, I do feel reassured that they are working hard and wisely in a fluctuating situation. I can't remember the full ins and outs of my conversation with her, but there is a degree of fluidity around chemo treatment balancing the risk of recurrence against the dangers and complications of infection etc in a pandemic.

I hope this is a bit of a help? Definitely ask questions (even if it's the same one 3, 4, 5 times!!) and don't be afraid to say that you don't understand or haven't followed what's been said and ask for it to be clarified (not just the same words repeated over and over which is my pet hate!)

Hope everything goes well for you. X

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Re: New Diagonsis during Covid

Mumbear, I wasn’t Triple negative but was inflammatory which is another aggressive type and after 6 months of chemo my tumour was still 90mm and I’d only had a partial response (gasp) 😳.  I got clear margins from surgery.  Hope that makes you feel a bit better in a small way.  Do make sure you make enquiries to get to the bottom of why your treatment has changed from protocol and what the risks are compared to the risks of being on chemo during COVID19.  It may be that the chemo increases your risks higher than the cancer at present and if that’s the case then I can see there may be a good argument for your treatment selection.  X

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Re: New Diagonsis during Covid

Hi mumbear

 

It was only when I joined this forum that I was even aware that having chemo first was an option. I was directed straight to a partial mastectomy, then a full mastectomy and full axillary clearance (as I was heavily node positive) and then told i) I was free of the cancer but ii) chemotherapy would be essential. NICE directs that this should commence within 90 days of surgery for best efficacy but making anyone immune-compromised right now is risky so oncologists might go for the ‘control’ treatment of hormone therapy until the crisis is past? The surgery generally removes the cancer - hence the talk of margins - and the treatments are to improve our chances of it not recurring. The fact is, the mastectomy will probably save your life and your team will have weighed up all the options as they know only too well how traumatic a mastectomy can be. I can’t imagine a worse time to get this diagnosis 😞 

 

I do hope it goes well for you. I found there was a lot of discomfort but not to the point of needing pain relief - but stock up on pain relief in case. You may have a drain attached which is a bloody nuisance unless you have a sensible hospital that provides a means for carrying it about. Otherwise, you’ll have to design your own papoose with a scarf! Front opening clothes are essential, the looser the better (I nicked a couple of my husband’s old shirts and wore joggers) and you’ll need to sleep on your back with your arm on a pillow, partly to stop you rolling onto the wound in your sleep, partly for comfort (I guess it depends if your armpit is involved).

 

This may sound scary but it’s best to be aware that there may be nerve damage, With a mastectomy, you may experience ‘phantom nipple’ which is a kind of mild nipply sensation you can’t scratch but it goes away if you ignore it! You may experience strange sensations down your arm too. You’ll be given exercises to do to keep movement in your shoulder and, eventually, keep your breast muscle and scar supple - essential, especially if you plan on having a reconstruction. The information on this site about pain is helpful.

 

Bras depend on the size of your boobs. I was small-breasted so I felt most comfortable in tight-fitting sports bras (Under Armour). Some people like the ‘comfort’ bras you can buy from George, M&S etc (not quite sports bras and some have some gentle shaping that may make you feel a bit better about yourself). Your own bras probably won’t work because, without the weight of two boobs, they tend to rotate to one side. You may be lucky but you’re advised to remove wiring. A bra with a band underneath works best. The hospital should give you a softie (which is a rubbish fit) but you’ll maybe have to wait for a prosthesis as they need fitting. Meantime, go to www.knittedknockersuk.org for free knitted shapes that are more to a specific size and a lot more comfortable than a softie. They are brilliant.

 

Apart from that, you need a personal maid to wait on you hand and foot, someone to do ALL domestic chores, including cooking etc and a lot of tlc. And water! The emotional aspect of all this shouldn’t be underrated - a cancer diagnosis and the loss of a breast is double whammy and your emotions may be all over the place. That is NORMAL. Just remember to weigh up anger about losing a breast with the fact that you are a lot safer without it. Trust your team (not always easy but worth it).

 

All the best,

Jan 

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Re: New Diagonsis during Covid

Thank you so much for your reply. 
I was told it is a grade 3 and 3cm but they won’t stage me as they think the surgery will get rid - doesn’t make sense to me that bit! If we weren’t in the Covid, I would have had chemo to reduce the size and then surgery, maybe a lumpectomy or it could still have been a mastectomy. 

Thanks for your tips too. Will get organised and get those things and I’ll ping a message to the nurses too. 
thank you so much xx


 

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Re: New Diagonsis during Covid

Hi mumbear,  Welcome to the forum but sorry you find Yourself here, especially during COVID19.  Standard protocols seem to be varied at present and it may also be worth dropping a note to the nurses on here to see if they know nationally whether your treatment would have been different, had you lived elsewhere.  Do you know the tumour size and staging yet?  If it’s a smaller tumour then a lumpectomy is more likely.  Triple negative more likely has chemo and or radiotherapy with surgery.  Do you know whether you would have had chemo under different circumstances?  You could always ring your Breast unit nurse or oncologists secretary to clarify.  When we attend appointments around diagnosis its very difficult to remember everything so it’s expected that you’d need support with understanding everything.  

For surgery you’ll need a front fastening sports bra, front fastening pyjamas, a tote bag for your drain bottles, lip balm (anaesthetic dries your lips out), a small cushion to protect you from the seatbelt on the journey home.  Best wishes and come back and let us know how it’s going. X

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New Diagonsis during Covid

Hi there lovely ladies,

I have just been officially diagnosed this week with triple negative BC. I'm early 40s, no family history and to say I've been knocked is an understatement.  I am struggling more with the fact that there seems to be one route at the moment, and that is straight to surgery in a few weeks time.  My consultant said in normal circumstances, I would have had chemo, then maybe a lumpectomy, possibly a mastectomy.. Also they are unable to reconstruct due to restrictions of operating procedures allowed at the moment. 

But I can see others are receiving Chemo - so it can't be nationwide.  I feel its so drastic straightaway and I have no options.  

Is there anyone else in the same boat?

Would love some advice on what is going to happen over the next few weeks, after surgery and essentials that I need to get me through the first bit.

Thanks