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New and waaaaiiiittttiiiinnnnggg (oh man, the waiting!)

14 REPLIES 14
Charliegirl78
Member

Re: New and waaaaiiiittttiiiinnnnggg (oh man, the waiting!)

I’m waiting for mri & ct scan apps I hate the waiting!! How are you doing now? x

dippy
Member

Re: New and waaaaiiiittttiiiinnnnggg (oh man, the waiting!)

Hi Beth,

pre-assessment for me today but not an issue as I work as a nurse so I asked for one of my previous colleagues to do that.

Feels strange and a bit more real now things are being processed.

I like to compartmentalise so I’m looking at it as tick - that’s that one done now onto the next.

one big worry that I don’t have now is returning to work too early - I have critical illness cover and they just confirmed my claim on Monday so that’s a big relief and gives me options now for my future.

will send good vibes your way on Tuesday xxx

BethSW
Member

Re: New and waaaaiiiittttiiiinnnnggg (oh man, the waiting!)

Hey @dippy 

Sorry for the slow reply!

The answer is no - I wasn't very surprised as they did warn me that this might be the case once the MRI was done - so I was prepared for the news and to be honest, I'm actually more comfortable with the idea of mastectomy than lumpectomy at this point. I had a bit of a wobble about another symptom that came up - but after a chat with my surgeon and nurse, they're happy that it isn't linked to the cancer, so I am now nice and calm and just doing very practical prep for the op on Tuesday.

How are you? Sending big hugs,

Beth ❤️

dippy
Member

Re: New and waaaaiiiittttiiiinnnnggg (oh man, the waiting!)

Oh Beth,

So sorry that you got that result - quite shocked at the difference in the 2 results.

have you had time to process this yet ??

Will be thinking of you in the lead up to the 9th.

take care and please try and stay upbeat 

xxx

BethSW
Member

Re: New and waaaaiiiittttiiiinnnnggg (oh man, the waiting!)

Hello Dippy!

Oh yyyyyaaaayyyy!!! That's wonderful news - I'm so happy for you. Mine's gone the opposite way - what they thought was a tiny 9mm turned out to be 7cm on the MRI! So I'm in for mastectomy on the 9th Nov - though I'm chuffed that things are moving forward now.

So happy that you like your surgeon too. I met mine briefly and he seemed nice enough - though there was a lady one I've had more contact with that I loved. But hey - I'm trusting the team at this point!

Wishing you well with it lovely ❤️

dippy
Member

Re: New and waaaaiiiittttiiiinnnnggg (oh man, the waiting!)

Hi Beth,

I’ll give that book a look when I’m reclining on the couch post surgery.

saw my 4th consultant today and got fab news.

letrozole has shrunk the bugger from 23mm to 8mm.

surgical option now is lumpectomy and radiotherapy (mastectomy off the cards now phew) and will get the op in 4 - 6 weeks.

happy that I’ve finally got a treatment plan and more importantly a surgeon that I like and trust.

BethSW
Member

Re: New and waaaaiiiittttiiiinnnnggg (oh man, the waiting!)

Hi Dippy!

My goodness, sorry you've had such a wait - that must be incredibly frustrating! I ended up having a phone appointment yesterday with the consultant as my MRI showed more tumour than expected - and he needed extra biopsies before we went any further. I think the universe was listening to me whinging because 5 minutes after we ended a call, a scanner appointment came up unexpectedly and I was whisked in for biopsies again this morning! ZOOM! Now just to wait until next Wednesday when, hopefully, the extra info they're after will be in and there can be some decisions made.

I wish you all the very best on the 28th - I hope that there are positive steps forward for you then too. And wow - long distance runner? Running isn't something I've ever really managed but I'm feeling inspired after reading the amazing novel Cancer Ladies Running Club - just finished it yesterday and it makes me want to give it a go. Maybe after surgery and everything has healed up!

Beth xxx

dippy
Member

Re: New and waaaaiiiittttiiiinnnnggg (oh man, the waiting!)

Hi Beth,

Boy do I know all about the waiting!!!!

was diagnosed with invasive lobular at the end of June and still waiting for treatment plan to be decided. Originally told breast conserving surgery with recon then radiotherapy and surgery would be mid August. Mag seed inserted mid July then saw my 3rd consultant who wanted me to stay on letrozole  (auld Wifie equivalent of tamoxifen - I’m 53) for 2 months more to try and get shrinkage. I’m a 34d and apparently not big breasted (big enough for me) and where my wee bugger is it wouldn’t have a good cosmetic outcome at present.
Fast forward and it’s now mid October and still to be seen at clinic - 28th October. Desperately to get this ball started so I can start planning for races next year (long distance runner🤦‍♀️)

ive seen 3 different consultants so far and the one on the 28th is Endocrine and will be the 4th.

Hipefully neither of us will have to wait much longer.

take care xx

 

BethSW
Member

Re: New and waaaaiiiittttiiiinnnnggg (oh man, the waiting!)

Hi Lou,

Sorry for the slow reply! Thank you so much for filling me in on that a bit - as they were pretty sure at that point that I might be her+, I guess that might be the reason. They kept telling me the chemo was likely because of my age (37) too but I'm guessing there will be a clearer idea of things after the MRI. Just hope they've got a plan on Wednesday so I can focus in a bit more.

Well done on getting through your first cycle! I hope it continues to be manageable for you. It must be a lot to wrap your head around. I'm doing my best not to get to attached to any idea of what might be in the plan this end as I've read so many times on here about plans changing and developing as they find more out!

Ha - I spend a fortune on kindle too! I've not gone public about going through BC yet - and I might well not do that - I want my books and writing to be a place to escape - both for me and my readers! But if you regularly check out the chick lit selection on amazon (especially quintessential English Village stories,) you'd be fairly likely to trip over one of mine 😉

Wishing you a smooth week. I'm now gearing up for my MRI tomorrow and appointment on Wednesday.

Beth xx

louby_lou69
Member

Re: New and waaaaiiiittttiiiinnnnggg (oh man, the waiting!)

Hi Beth

Chemo is a given if you are HER2+ as the Herceptin has to be given alongside chemo apparently. 
my surgeon told me that lobular cancer doesn't always respond well to chemo (45% shrinkage rate was mentioned) so I was offered a lumpectomy first and chemo, then radiotherapy afterwards. The Herceptin will then continue via an injection for a further 8 months (one every 3 weeks). I will also begin taking Tamoxifen for 5 years too.

If I'd have opted for chemo first I would have been given perjeta as part of the chemo regime.

I've since found out from my pathology report that my cancer was a mixture of lobular and ductal so when I see my surgeon for my one year appointment I'll be asking her about that.

Ive had one cycle of chemo so far and it really wasn't as bad as I thought. I was rough for about 4 days but 16 days on I feel ok, just tired. No hair loss yet but I know it's only a matter of time.

Im always up for a chick lit room com.....now wondering what you've written?? I spend a bloomin fortune on Amazon kindle 
Lou x 

BethSW
Member

Re: New and waaaaiiiittttiiiinnnnggg (oh man, the waiting!)

Hi Lou - lovely to meet you, thanks for replying! This place really does help you feel less alone in the whole thing, doesn't it?!

I'm glad to hear your nodes were clear - can I ask, what was their reasoning for the chemo for you? They also implied that it was likely for me either way - is this to do with it being lobular? I fully intend to throw everything I can at it - but I'm one of those annoyingly curious people who like to know reasoning behind things too! 😉

I'm actually looking forward to getting my plan in place too. I hope to take a leaf out of your book and just get on with it - and I think it'll help to know what' I'm just getting on with!! 

Hmm... if you like chicklitty happy-ever-after romcom reading, you may well have spotted one of my books. I've written and released one a month since last November! Now firmly in Christmas romance territory for the rest of the year!

Thanks again for saying hello, and I hope your experience with chemo is as smooth as possible ❤️

Beth x

louby_lou69
Member

Re: New and waaaaiiiittttiiiinnnnggg (oh man, the waiting!)

Hi Beth

Ive been hanging round here since joining in June. I’ve moved from one thread to another and am now residing in the starting chemo in October thread.

My cancer is also lobular and I had a lumpectomy and 3 lymph nodes removed (all clear) in August. I’m also triple positive so will be having Herceptin alongside my chemo. 

It’s a totally crap situation. I’ve cried, sworn, shouted and just questioned why a lot of times. But I’m just getting on with it now, I have my plan and I’m just getting on with it 

Lou x

have I read any of your books 

BethSW
Member

Re: New and waaaaiiiittttiiiinnnnggg (oh man, the waiting!)

Hi Bookish! Lovely to meet you too - though like you say, sorry it had to be here. Thanks so much for your reply though - it really is good to be able to chat to others who're in similar circumstances.

i'm doing pretty well on the food and walking for exercise to keep my mind off things, it's when I sit down to try to work that it all comes crowding in. I've got deadlines for 2 more books before Christmas, but boy it's going to be a bit of a challenge. Hopefully, when there's more of a plan in place, I'll be able to get back to some kind of routine - even if it is a vastly different one!

Aw - your surgeon said that? My comments have been mainly from people who simply don't know what to say - which I completely understand. I get it - it's a tough thing to be told by a friend or a neighbour, and they desperately want to be reassuring, both to themselves and me - but on my bad days, it can feel like a dismissal. "You'll have no problem. Be strong. You owe it to everyone."

Gotta say - I love NaNo! That's where it all started for me. And no - my drafts in that definitely weren't publishable - but certainly became so after some serious edits 😉 I love the idea of dabbling in a little bit of fantasy though - good suggestion!

I hope things are going as smoothly as they can for you too. Hope to speak again xx

bookish
Member

Re: New and waaaaiiiittttiiiinnnnggg (oh man, the waiting!)

Hey Beth - lovely to meet you, even though I'm really sorry it's through such rubbish circumstances! It's an amazingly lovely place/people here, but still, none of us exactly want to be here!

The waiting really is so hard on the nerves. I hope you can calm those worst case scenario thoughts, they are awful. Mine hit at 3am in the morning, mostly. Things look better in the morning, and after enough sleep, so try to keep taking care of yourself as best you can on the food and exercise and rest.

Also totally know what you mean about the "young and healthy" comments. I told my surgeon he was only saying that 'cos he's only a year or so older than me 😉 

Very impressed at the writerly-ness. I've gotten as far as NaNoWriMo, not quite the publishable level of quality but love it. Such a great outlet for all the fears and woes and everything. I'd encourage a lot of journalling, and writing anything that you want - escape into fantasy, or yeah, kill off all those frustrations!

Glad you've found the community here, and hope everything goes smoothly for you xx

BethSW
Member

New and waaaaiiiittttiiiinnnnggg (oh man, the waiting!)

Hi everyone!

Thought I'd pop in and introduce myself - as I've got a feeling I'm going to be loitering around these 'ere parts for a little while to come! I'm Beth, 37, and got my diagnosis of Invasive Lobular Carcinoma about 2 weeks ago. That was from the preliminary ultrasound and biopsy . . . special story there - the lump I was worried about wasn't anything - they found this blighter by accident about 2 inches higher!! Anyway, thank heavens for that lovely radiographer (is that the word? so many new words!) As a preliminary, they've said 9mm Grade 2 - but because of the nature of lobular, I'm waiting on an MRI on Monday and they whizzed me into mammograms last week - because there could be more. And so . . . I wait. And you guys know about the waiting, right?!

So far, I know it's ER+ and (after a call the the BCN because in the meeting one of them had one thing and the other had the opposite written down) it's HER2 neg. So - surgery of some sort is a definite and so is the hormone thingymajig (I'm guessing Tamoxifen because of my age).

Anyway - MRI Monday and then the big planning jobby on Wednesday.

I've gone through calm, angry, confused and scared. I lost my mum to BC in 2018 so I'm having to work hard not to keep going to worst-case-scenarios in my head. I nursed her for her last 2 weeks, and it's all still pretty raw. And now I'm waiting. (Can you tell I'm a bit... impatient?!) I'm a full time writer, and this looming thing has been playing havoc with my focus and happy ever afters. Huh - maybe I'll have to swap genres to thrillers for a while. At least that way I'd be able to write in every single person who has so told me that "this will be a breeze because you're so young and healthy" after I told them what's happening.

Okay, no more ranting. I'm done. Honest!

Anyway - I'm sending love and hellos to all of you.

Beth x