Hi [@Iz_rey]‍ 

Firstly sorry to hear that you were given all that information before you have even seen the breast clinic as the wait for appointemtns drag along in normal circumstances but to have that hanging over your head before you have even seen anyone must be awful..

How old are you please? I ask as when I was diagnosed it was back in August and I wasn't allowed anyone in with me - I am 46, they do make exceptions but it would have to be for very good reason, but all the nurses are so patient and kind and really put you at ease and they don't rush you.

When you are fearinf the worse you do find that any other pain whether it be a long time or pain or a new pain your mind goes into overdrive and you start fearing the worse.

Even though I was diagnosed in August and already had surgery, I am going back to the breast clinic tomorrow, I believe I have a cyst in the same breast as the cancer I have been having pain in my neck and shoulder blade and have rippling at the top of the breast, so of course my mind automatically goes back to "oh ***, the cancer is back" but that is the irrational side of my brain especially when your tired and not sleeping because of worry, when I can put my rational brain on I know that the pain is just going to be referred pain, the rippling is because I have a growth in my breast so of course it is going to have an affect on the skin and it's a cyst!! - or so I hope!

The point is, our brains our cruel and play on our feelings.

Until you are seen of course your mind is going to jump all over the place, around the forum you will see lots of people saying the same, the wait is the worse, you just want answers now and they can't give them to you.

I've not yet found a way to destress over the waiting, I have started painting again though, something to relieve the boredom of sitting around at home more than anything.

The nice thing about the breast clinic is the all female team, the staying in the one seperate area from thr rest of the hospital and they are equipped to do everything in that area, from seeing a consultant, then going for your mammogram and then into the ultrasound room, all done on the same day in the same place. Then of course it's back to waiting for any biopsy results - in my case it took 6 days to get results but could differ in different areas of the  country or different biopsies needed.

When they discovered my lump, which I hadn't noticed and the consultant couldn't even feel it, I was at the breast clinic for a scan for a different reason, I had a scan two years previous with no sign of Cancer, so going back and them finding something I kind of got my head round it before I got the results and I looked up what it could mean, I thought it would come back as DCIS, so when I got called in and told cancer I was already prepared and was OK, the breast nurse kept asking if I was OK as I just didn't react to the news, then the oncologist said it was invasive cancer, that got a bit more of a reaction as I assumed DCIS, although of course during surgery they removed invasive and DCIS cancer from me.

But as scary as it all sounds, they really do help you along the way and give you all the information you need, of course we all hope that you are not going to get the cancer diagnoses.

I'm sorry that this probably hasn't helped you......... But if you need to chat you can always message me.

Hi [@Kay-D]‍ - thank you so much for your very thoughtful reply! And yes, it is helpful - even just chatting about it all is helpful.

I actually appreciate that the Dr was upfront with me about his suspicions, while I'm trying not to play 'what if', I know an experienced GP like that probably feels a lot of lumps in their career, and it's allowed me and my husband to prepare if there's bad news. I'm 38, so fairly young in respect to all of this. Thanks for letting me know what the appointment is like, sounds like with Covid, I might have to update my husband afterwards how it all went. I'm not afraid of the appointment though. I'm more afraid of not-knowing, and more waiting after the appointment. The in between parts of the process. Which, I guess, is just being afraid of myself really. 

How did your surgery and recovery go?

How exciting to take up painting! What are you painting?  

I have a demanding job, so hopefully once I start work this week I'll effectively have forgotten about my ill-behaving breast until the weekend. I'm totally new to the forum, but I'll try to figure out how to ping you a DM! Would like to make some friends along this unknown way :)

I really hope your appointment goes well tomorrow, please post an update xx

Hi [@Iz_rey]‍ 

As an idea, if your husband is not able to go in with you, is to phone him as you go in and have your phone on speakerphone so he can hear what is being said, as it is very hard to relay all the information you are given.

I paint anything really, my latest was a beach scene with just a few waves crashing on the shore...I have hung it on the wall opposite my bed and I look at it to calm me. 

The surgery was a wide local excision and node removal, I was very lucky that although it was done through the NHS they partner with our local private hospital so the guiding wire and chemical was put in at the NHS hospital and then I went over to the private hospital for the surgery, so that part was brilliant, I was in contact with a person through the "someone like me" website, they match you with a person who is around the same age and has had the same diagnoses so you can talk to them through email or phone, she helped me to know exactly what to expect, but of course everyones recovery is so different and it took me three weeks to recover after surgery, mainly being able to move and do things for myself, so that was really hard.

But I moved in with a friend who helped me and looked after me and that really helped, it was nice being looked after for a few weeks. Unfortunately because of lockdown and restrictions I wasn't able to see my daughter, still haven't, she doesn't live in the same area, although she isn't huge amount of miles away it feels like it when you can't see them!

SO hopefully your husband is ready to be a maid for the next few months, drag it out!!!

The not knowing and the waiting is the worse part of all of this, as you just can't switch it off, and even after you have the diagnoses regardless of what it is, your brain still doesn't switch off.

So, given how serious the GP was and the toll of the wait, we've decided to go for a private appointment tomorrow. So I should have at least a mammogram / ultrasound, and maybe a clearer idea of what we're dealing with (or not). Fingers crossed x 

[@Kay-D]‍ - I hope you appointment went well! 

Morning [@Iz_rey]‍ 

Good luck today, hope all goes well for you and you get your long awaited answers.

Mine went OK but I now have unanswered questions...

Let me know how it goes today.

Wow, well, I can't beleive it. Went to the private scan, and Dr did physical examination and said defo a lump there, it's irregular (yikes), and he could see why my GP referred me. But on ultrasound .... there's nothing there. Just normal breast tissue. Nothing unusual at all.

So it's FANTASTIC that there is not big tumour there, though does raise the much-less-urgent question of why some normal breast tissue has decided to swell up all of a sudden.  I was told to keep my NHS appointment and bring the results of today's scan with me, and that it may be a while before I have a definate answer to what's going on, if anything. While the private Dr couldn't give me an all clear - I need a biopsy for that - I'm also not alarmed now.

I've never been to a private doctor in the UK before, but so glad went for the scan today. We had to dip into our savings for it, but it was 100% worth it. 

Thanks everyone for the support, I really was prepared for bad news :,) 

[@Kay-D]‍ So glad your appt went OK, though sorry to hear you have some unanswered questions - do you have a follow up appt? x 

Hi [@Iz_rey]‍ 

That must be a bit of a weight off your mind, good that albeit dipping into savings, when your sat around waiting I would say definitely worth it to at least have some knowledge.

Still a wait for your other appointment though isn't it.. was it the beginning of March?

Mine is a wait and see, No biopsy done so that was good, but consultant then mammogram then ultrasound, doctor said it was lobular something or other, I'll know properly when I get the letter, but it is lobular pain which I think they said lobular neoplasia!

So pleased that your alarm bells aren't ringing anymore...

Hi [@Iz_rey]‍ 

That must be a bit of a weight off your mind, good that albeit dipping into savings, when your sat around waiting I would say definitely worth it to at least have some knowledge.

Still a wait for your other appointment though isn't it.. was it the beginning of March?

Mine is a wait and see, No biopsy done so that was good, but consultant then mammogram then ultrasound, doctor said it was lobular something or other, I'll know properly when I get the letter, but it is lobular pain which I think they said lobular neoplasia!

So pleased that your alarm bells aren't ringing anymore...

Thanks [@Kay-D]‍ :)

That sounds like positive news, your wait and see? 

Yes, it's a big weight off my mind, though I'm finding it impossible to get an appointment at the breast clinic (not because of the private appt I had)

My GP on Friday said appointment would be made for me and I didn't need to do anything, seems it wasn't and I needed to book one online. Tried to do this ealier in the week and website said no appointments available and to select another clinic, but couldn't select anything. Rang breast clinic and got passed around to various numbers, only to be told they couldn't help me as I didn't already have a booking. Got a letter today from NHS saying I still have no appointment and to book one online. Tried to again and - of course-  website said no appointments are available.

Just spoken to someone at NHS appointments on the phone, who said they aren't able make appointments at that clinic and they'll pass my details on to the hospital. It's been almost a week since I saw my GP, and no closer to having a date to be seen at the breast clinic. How are patients meant to manage this? I've now spent hours trying to get an appointment, all during working hours, plus taking leave for the private scan. I feel much better since the ultrasound yesterday, but still need to be seen at the breast clinic, and couldn't really afford to have further tests privately. 

Sorry for the rant, it's just so frustrating. I'm told it's a great breast clinic, if only I could manage to be seen...

Oh my goodness [@Iz_rey]‍  that sounds like a right palaver!

It should have been easier for your GPs to sort it out for you, rather than you having to keep ringing round. It must be incredibly busy at the clinic, of course that's not helping you when you are also needing to be seen.

Have you asked the GPs to send another referral.

I hope you manage to get something sorted soon. We always know that there are others waiting and also needing to be seen, but when it is yourself worrying about getting a diagnoses or answers that all goes out the window...

You're absolutely right [@Kay-D]‍, thanks for the needed perspective. I did pound that out in a moment of frustration. The hospital did ring me back in the end, and my appointement is in 2 weeks. It was more the fear of falling into some admin gap, but all resolved now thankfully

Glad to hear you heard back with an appointment [@Iz_rey]‍  

 I have had a referral go askew once before myself, that was when I partially ruptured my Achilles tendon and in the end was chasing it around for months, so I understand how frustrating it can be.

Hi I'm just wondering what the outcome of your lump was? I'm in the same situation