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First appointment post diagnosis tomorrow - some queries

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Re: First appointment post diagnosis tomorrow - some queries

Many thanks for the reply Pawsome, and confirming the sentinel node biopsy will be done at surgery time. 

 

Yes big relief with the sick note, you're quite right i just need to keep on top of the requests for the notes now i've got a 'start'. I've got a reasonable sick pay allowance, but this is going to take a massive chunk so i'm going to have to be aware of it diminishing and plan as you mention. Feel guilty i'm not going in for the next few weeks before surgery really, but mental health needs nursing too so i'll let myself have this one! 

 

I work a very physical job on full time nights so returning during/after treatment isn't going to be easy, although they'll be happy to do a staged return with fewer hours at first etc. Going to have to hit the gym to try and keep my strength and fitness levels up in order to make returning less painful. 

 

But i'm feeling pretty positive tonight all things told! 

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Re: First appointment post diagnosis tomorrow - some queries

Yes you will have the sentinel node biopsy done at the same time as your surgery. Good that the hospital gave you a sick note too as that’s one less thing for you to worry about. Ask for another one after you have your surgery as well.  You will still have Unknown’s. That’s normal. I think it’s best to just try and deal with what is in front of you and take things one step at a time. I can also sympathise re working for a large organisation with a HR department that has a ‘computer says no’ approach. My best advice is to make sure you’ve got everything they ask for and then it avoids the stress - eg. Ask for sick notes from your GP a few weeks before your current one runs out and that avoids the stress of your HR department threatening to withhold pay. I would also double check exactly what sick leave you are entitled to as that will help you plan. I have secondary breast cancer and am on active treatment and I am working full time alongside it so it can be done. You will just need more time to do things, rest breaks and time off for treatment / appointments. I have days where I feel pretty much normal and other days when I feel like I’ve been hit by a bus so you need a bit of flexibility built in to your work schedule so you can rest if you need to. You need to look after yourself first and foremost x

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Re: First appointment post diagnosis tomorrow - some queries

Just an update. I've got a 40mm grade2 ER+ lump....

 

Need an MRI for them to determine if a lumpectomy or mastectomy is required. Sentinel node biopsy will also be done (am I correct in thinking this i usually done during surgery rather than prior? Got info overload a bit today). 

 

Hospital gave me a 4 week sick note which was a massive relief. Not up to dealing with work even though I'm physically fine. 

 

So I still have many unknowns, but feeling a bit more together than I did before today's appointment. 

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Re: First appointment post diagnosis tomorrow - some queries

Hiya Jan,

 

So very grateful to you for taking the time to read my post and reply. Having coped to a reasonable degree the night before my appointment I feel like i'm awaiting sentencing... "to the scaffold with you Pye!" So i'm reassured by your words.

 

1. Re seeing the surgeon, if I'm up for surgery first I'm pretty happy with that as i have no fear of surgery in itself.  Although losing breast/s is a whole different psychological ball game which I'm potentially about to deal with. 

 

2. Thanks for the comments about work, as mentioned in my reply to Pawsome i'm happy with my local managers, it's the archaic structure above that chills me somewhat. But in the grand scheme of things, if I miss out on a weeks sick pay so be it I suppose.

 

3. It's not exactly good to know, but being aware your diagnosis and treatment strategies changed so much is a great heads up for me. I need to accept that things will change as my tests and treatment progress, my preference (as i'm sure everyone's would be) is for a nice set agenda I could just be given to plough on through.

 

Interesting you saying the appt after surgery is the key one, but I can see that makes sense. As of course does avoiding googling - i googled but was defeated completely having no idea what flavour of BC I have as yet. After tomorrow's meeting is going to be the google danger days for me. I will try my best not to...

 

Your time and kind words are very much appreciated,

Pye

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Re: First appointment post diagnosis tomorrow - some queries

Hello Pawesome,

 

Thank you so much for taking the time to read and reply, i really appreciate it. I've lurked here since before my diagnosis... knew what was coming really so it's helped me gird my loins somewhat.

 

I've only my partner available to take with me (no friends or family locally) who is wonderful and supportive... but I'm not sure how objective his listening skills are! I'll certainly take a notepad and pen, maybe a tick list for grade, her2, hormone receptor etc?

 

My appointment card has a phone number and a list of contacts on it e.g. Macmillan Clinical Nurses, Macmillan CSW, Health Care Assistants, but noone explained who they were or if/when it was appropriate to contact them. I'm sure tomorrow that sort of thing can be addressed.

 

Good to know about GPs - i'm happy my local managers will be very supportive, but I work for a very large employer and the HR dept is just a remote machine... 'this box isn't ticked? you are not getting paid!' zero flexibility available. I'm fairly hopeful that the request I was able to make via the GP receptionist for a sick note will be actioned, although she confirmed they'd not had anything from the hospital regarding my diagnosis as yet. If need be I'll just have to trot up there on the day my self cert expires with whatever paperwork I have from the hospital and see. I only have so much sick pay to come so would like to work as and when I can through treatment, but now just isn't the time!

 

Many thanks again,
Pye

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Re: First appointment post diagnosis tomorrow - some queries

Hi Pye

 

First, I’m sorry you’re in this position (me, September 2018) but very impressed with the head on your shoulders. Personally, I’d advise anyone to take someone they trust with them to this appointment and subsequent ones. Nothing can describe the impact of hearing those definitive words ‘breast cancer.’ No matter how prepared you are, your head reels and meantime the conversation is going on. I wasn’t expecting cancer, nor was my breast surgeon, so I went alone to my first two appointments. All I remember is apologising because I said ‘f***.’ After that, a friend came with me and took notes which proved so useful as everything was a blur - and you feel awkward asking the surgeon to slow down so you can write things down. You need to be engaging with her/him as much as possible.

 

1. Going by my experience, yes, it sounds like surgery first. If it were a large tumour, they might do treatment first but you’d be seeing an oncologist. I think it depends on the type of cancer you have.

 

2. I don’t know as I am retired. However, your employer must now register you as disabled under the Equality Act 2010. This site has a good informative section for you: https://breastcancernow.org/information-support/facing-breast-cancer/living-beyond-breast-cancer/lif...

You won’t feel disabled at this stage but it can be a progressive condition and, depending on what treatment is required and how you react to it, it can be a protracted period of absence or phased-return employment and you want HR on your side. Accept disabled as a means of protecting your rights when you may not be up to battling with idiots.

 

3. We’re all different. All I cared about was ‘what can you do to make sure I’m not sick?’ (I have a lifelong phobia) but there is simply no predicting most of the answers. My diagnosis changed four times over as many weeks! The surgeon will have decided from your results what kind of surgery is required and will talk you through all the options. They may want additional tests like a sentinel node biopsy before moving on to surgery. Don’t be rushed into your decision if you have a choice of surgery options.

 

You can get general answers to things like how long will I be in hospital? Or Can I be discharged the same day? But anything could happen and 3 days might become 7 or 3 days might become 1. I went in at 8 and was home by 8 the same day, after a full mastectomy and axillary clearance! I didn’t find either of the hospitals I was treated by (went from private to NHS) was concerned with what I’d call the minutiae so a site like this is probably better for advising you what to take with you and what to expect/how to prepare for the days/weeks after surgery. 

 

It’s probably too early to go armed with cancer questions this time. The appointment after surgery will be the decisive one. You need to decide what sort of person you are and take it from there. Either you’re like me, better off not knowing anything, handing yourself over and letting them get on with it. Or you are someone who needs to know all the precise details, can reel off all your abbreviations and needs to know all the pros and cons of each treatment before deciding. Obviously I can’t help you with questions there as I asked as few as possible (apart from the sickness questions lol) and I think I got through it more easily than everyone expected as a result. There will be others who can help with that BUT

 

DO NOT GOOGLE. It’s disastrous. It doesn’t know your precise circumstances and can’t respond to your emotional state. It can be out-dated, unreliable or pitched way above our pay-grade. The result generally is we get scared witless unnecessarily. Trust me - I broke the rule once and did I regret it. “What’s read can’t be unread,” as my breast-care nurse wrote in response to my desperate email.

 

I hope your appointment goes well and you get the best outcomes. Whatever happens, there’s support here - and we all seem to have got through or are getting through in our own fumbling ways.

 

Jan x

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Re: First appointment post diagnosis tomorrow - some queries

Hi Pye. Sorry you find yourself here but it is a good place for support and to ask questions.  I think the main thing is not to make assumptions and wait and see what your surgeon says tomorrow. No point second guessing what your treatment plan might be at this stage. My tip would be to take someone with you if you can for support and also it’s useful having a second pair of ears. It can also be useful to write things down. It’s surprising sometimes how you can be given lots of information at these appointments but it doesn’t always sink in. I would also make sure you have the contact number for your breast care nurse and check that you can ring them if you have any questions after your appointment. It’s quite common for you to have additional questions afterwards or perhaps something the surgeon said isn’t clear and you might want to double check things.  I am also a list person and like to have all the information about everything. If they discuss surgery or other types of treatment there are often information booklets they can give you so I would ask for those as you can then read them later if you want and for me that helped me feel more prepared. 

Re work and a GP note. I had a similar issue a few months back. Most GPS are normally pretty good at signing notes but you do sometimes have to wait a while to receive them as they’re so busy - especially at the moment with covid-19 and everything going on. Can you ring work and explain that you have requested it and are just waiting for your GP to action it. It strikes me as quite unreasonable for your employer to place such strict deadlines on something that is outside your control. At the end of the day it’s not like you’re off ill with a cold so I’m sure if you speak to someone and explain the situation they will be OK. Those HR letters are normally just a standard template that they send out to everyone and can sound quite scary / formal. Hopefully if you speak to your boss or someone in HR they will be more accommodating. The Macmillan website has a lot of useful information about cancer and your rights at work - when you are diagnosed with cancer you are covered by the Disability Discrimination Act and so that basically means that your employer has to be a bit more flexible in how they deal with you.

 

Hope tomorrow goes well x 

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First appointment post diagnosis tomorrow - some queries

Hello all,

 

I was told I had BC after my mammogram and ultrasound about 10 days ago following referral from my GP. 

 

Tomorrow I have my first meeting at the hospital, scheduled with a breast surgeon, the biopsy results should be in. So I'm expecting to be advised on the grade of cancer and what the treatment plan is with what we know now, although am aware further tests may be needed to be certain of the stage. Trying to get my head together to make the most of it tomorrow, plus a couple of side queries:

 

1. It's scheduled with a breast surgeon - does this mean it'll probably be surgery first then follow up treatment? 

 

2. Are GPs good at signing sick notes for BC? I went in to work for a couple of days after diagnosis but then just lost the plot and signed off self certifying. I can't get a GP appointment for ages but the receptionist has submitted a request for a sick note on the day I need it from. I'm panicking somewhat as the letter work sent me said I must submit a certificate within 24 hours of my self cert expiring or sick pay would be withheld. (And more to the point I like my job and don't want to lose it by not conforming to some pedantic HR rule). 

 

3. Most important question! What are you glad you asked at that initial appointment or kicked yourself afterwards for not asking or clarifying? (Yes I'm a list person...)

 

Many thanks to anyone reading,

Pye