Claire.. I meant to say I'm about 3 and a half weeks post op.. And I'm getting pins and needles and more discomfort as the numbness improves.. I'm also getting pain in my nipple which isn't there 😂 I'm probably in more pain or discomfort compared to first having my operation I'm guessing it's because my nerves are repairing hence the pain?
Aww San , I wondered why you hadn't been on here . Try to keep positive, hard I know in these very strange times. I'm not sure I could stand the cold cap anyway , I think it would give me a crazy headache .
Once I've spoken to my oncologist I'll have more details I'm sure . I'm now 2 weeks post surgery and feel well in myself , just the funny feelings in my arm I'm unsure of .
I know what you mean about not knowing what all these abbreviations mean . I'm starting to get a bit baffled and don't always like to ask or I forget 😂. Chemo seems so daunting doesn't it but it's not forever and it's obviously the best treatment for us .
Also... I've had a few bad days because I've been told that during the covid crisis my hospital won't be offering the cold capping treatment which if I'm honest left me devastated and so upset... I just have to deal with it I suppose
Hi ladies... Here is my update..
30 mm grade 3 (was 2) ductal carcinoma... nodes 11 removed 2 cancerous
ER 8/8 HER2 Negative ((btw I have no idea what that means?))
I'm having two types of chemo... First lot will be once a week for nine weeks then the second lot.. Once a fortnight for 2 months.. Then radiotherapy and hormonal therapy (a tablet I think) also they said they will give me something for my bones every 6 months for 3 years... I know I sound vague but since I've been diagnosed with breast cancer I haven't read anything about it... I discovered I was a 'dont want to know type person* probably because I'm scared to read something I'd rather not know if that makes sense
Sorry to butt in, just had to say I haven’t had any scans either, apart from ultrasound at diagnosis and planning ct for rads, I had 3 of 4 lymph nodes with macro & micro mets found at snlb that didn’t show on the ultrasound, then chemo and rads now on exemestane ha ing switched from anastrozole.
I thought it was cos I’m a private patient, all my nhs mates have had mri, ct and dexa scan routinely.
it really does bother me when I see others getting them and I’m denied them as it’s not deemed necessary. I haven’t even had a blood test since I finished chemo last Oct, the nurse who gave me my zometa yesterday asked me why as I should have them before each infusion!!!!
news to me I told her!!!
im grade 2 micropapillary er & pr+ her2 neg
Noticed that you too have had bone scan, MRI and ct scan. Was this because it was grade 3 or would you have had these anyway, even if grade 2? I'm not entitled to these and I asked why last week when people from other areas seem to have them just to double check everything. I was told it wasn't needed as my lymph nodes were clear. I had a mastectomy 4 weeks ago. Had a 3.5cm and a 2cm tumour plus several cancerous areas. I've been told no chemo or radiotherapy , just tamoxifen for 10 years. But I can't help worrying as people in other areas seem to be having loads of additional tests 😐
C d Lucy, please speak to your bcn about how everything is feeling post op 👍 always turn to your team on this journey 👍 they’ve seen it all before and will get you safely through 👍💕💕✨✨Shi xx
My nurse has said I'll probably have chemo every 3 weeks for around 5 months then onto radiotherapy, 15 sessions over 3 weeks. Not sure on tablets yet as they are unsure where I am in my menopause ( I think I'd started having symptoms but now not sure if that was the cancer , I'm 46 ) .
Don't know about oncotype but I presume the oncologist will discuss all this on Monday . I'm presuming because it had already spread into my lymph nodes I'll be having a good blast of chemo .
I'm also Er+ , HER2 -. I had my ct and mri scan before my surgery. It's seems all trusts work differently .
I seem to be in a similar position to you. I was diagnosed with grade 2, 19mm ER+. After surgery it was discovered to be 42mm and grade 3, lymph nodes were clear. I had bone scan, MRI and CT last week which were clear. I saw oncologist yesterday for results of Oncotype score. Did you have it?
They have recommended 4 doses of chemo over nine weeks, followed by 15 radiotherapy and tamoxifen for ten years. My Oncotype score was 19 so I’m really unsure of the benefits of chemo. They are going to review me next week with my decision. I’m confused about what to do but relieved that I have regained some control.
Hi every one
Hope you're all ok ( as much as you can be !! )
Have you had any further results/progress San?
I've had all my results now and have an oncology appointment on Monday ( telephone appointment ). I wish I could see them face to face but I know things are difficult at the moment .
With me they had originally said stage 2, 30mm lump and 2 lymph nodes . After surgery they have said 65mm lump , high grade DCIS ( thankfully non travelling ) 2 lymph nodes ( they removed 18 ) and grade 3 . Suddenly feel very worried about the grade now.
I'm heading for chemo and then radiotherapy which scares me but I know they are giving me the best treatment possible .
I'm 2 weeks post surgery now and had my drain out on Monday . Can I ask how everyone felt . My arm and across the top of my chest is so tender and sometimes feels a bit like pins and needles . I started doing the extra exercises they gave me and it seems to be hurting more. Is this normal ?
Sorry so many questions .
Go girls.. you've got this! Have to say Shi was a godsend when I was diagnosed.. always made me laugh no matter what the situation was. She'll have you laughing, dancing and singing your way along.
I was another who didn't get sickness, just a slight sort of morning sickness feeling a couple of times, but just kept taking the pills they gave me and got on through it.
Good bit of advice from the others about keeping a diary and writing down questions. You usually do see a pattern with chemo so know what days will be your best... oh and the sennokot... a definite must.. if you like prunes.. get them in!
Thank you Shi & Claire... I know my next 6 months will probably be my most hardest but I've decided to approach with as much positivity as possible .. If I have to go through it I may as well smash it 😊👍 bring it on so I can back to my normal life 👌
Ladies take care and stay safe
So lovely to catch up on all these messages of positivity .
I have a call with the nurse today regarding my drain. Still on around 80ml of fluid a day so I know it won't be out just yet. A week today since I had my op. I have some fluid coming out where my drain goes in . Spoke to my nurse yesterday and they don't seem concerned but I'm worried about infection . Will see what they say later !.
Just remember , we are stronger than we think . We have already dealt with the most awful news imaginable and we can fight this . Whatever it throws at us.
San 👍 that’s it keep looking forward 👍 Everyone 👭 helps each other through step by step 👍 and there will be 😁and 😂🤣😂🤣😂and plenty of 💃🏻💃🏻🕺🕺💃🏻when you are on the steroids (for which you will need to get some senokot or something like that on standby for) sorry if tmi, it’s a bit like juggling 20 balls in the air while doing Malcolm maclarens double Dutch skipping at times but you get through together. I did a graph of each week and kept track of my temp and when I’d taken my meds, you can get chemo brain so it was good to write it all down to keep track of everything. I also took notebook into my onc appointments and used to have lots of questions and write the answers down. But that was what worked for me. Others don’t want to know anything and don’t ask any questions, like I said earlier there are no rights or wrongs you do what’s right for you, your wY in your own time ❤️ If you get some beam me up Scottie friends who disappear don’t worry about it, it happens and then when you are through they beam back down again, don’t let it bother you if that happens, you concentrate on you now 👍💕💕✨✨Shi xx
When I first put this post up "diagnosed 2 days ago" I was in such a scary dark place.. It was a cry for help 😥 I found myself in a 'club' that I never imagined I'd be apart of but I reach out and found you all.. I feel everyone who have answered or responded to my original post has walk along side me every step of the way ❤️ encouraging me to keep moving forward... Honestly I don't think I could of done this alone so thank you to everyone.. I still have things to face and deal with but I know I will... One day I will be where you are standing shi 😍 and I promise I will always be part of this group so I can give back to someone else who may need some support like you have shown me... Thank you so much 😍
San ❤️ At all times put yourself first now and do what’s right for you ❤️ It’s your journey and we are all different and all step or dance or scramble or go off to narnia the way through it 😁 there are no right or wrongs 👭 the breast cancer now teams are here for you, the threads and everyone on them are here for you ❤️ And I looked at it that chemo was like having extra doctor on the inside 🥊🥊🥊 any strays 🥊🥊🥊 reward yourself after each treatment, do things that make you happy ❤️ Don’t let it take your joy, it tries to but don’t let it ❤️💕💕✨✨Shi xx
That's made me feel so much better honestly.. Thank you 😘 and of cause you're right 😊 and you make so much sense because you've been through it.. Thank you so much for taking the time to respond and sharing your experiences with me
San 😘 xx
San ❤️ Step by step you will get through, if your antisickness meds don’t work you ring your team and tell them and they tweak them till they get right combination. I was lucky, no nausea, sickness or loss of taste during chemo, so please try and keep positive you could sail through chemo, lots of people do ❤️ Get your thermometer and when you get your goods bag of meds for chemo ask for difflam too, oral hygiene is very important during chemo ❤️ Have a look at other chemo threads and jump on the one that you’ll be on when you start 👭 you share the chemo journey together and believe or not you will have 😂🤣😂🤣 along three way 👍 I know that sounds crazy, but you do as you step by step get each other safely through ❤️💕💕✨✨Shi xx
Thanks for your post kip.. It is so encouraging and a much needed tonic.. You're right it is the first and last thing I think of each day.. I'm not going to lie the thought of chemo fills me with dread probably because its fear of the unknown... In my life I'm never sick but if I am I just tend to work through it but nausea and vomiting I hate most of all I don't cope well with stomach bugs etc so I'm dreading that most of all.. I'm ignorant of the other side affects... Which I have deliberately haven't research 😥 I will cope.. I have to but I am dreading it
Sounds like you are all doing really well post op. I had a mastectomy in 2018 (no recon) and can fully remember how it all felt straight afterwards. Those exercises! But they are really important to keep doing them, even when you feel "ok" again. Your arm can stiffen if you don't. I still do mine (not every day) but also do some yoga and walking etc. I still have a numb outside arm and armpit and some across the scar but it becomes the new normal. Just be careful if you shave your armpit as you can't feel a thing.
My scar has healed so well, its fading but runs across former breast under armpit and I remember it used to tingle and twang in breast and arm whilst healing, something to do with nerves, so don't panic. My nurse told me to massage a gentle moisturiser into it as it helps flatten the scar and to wear a bra with the soft prosthetic in to help put some pressure on the scar in the early days. If you are remaining flat for a while or forever (I think I am?) I love to wear a Knitted Knocker (Google search them) they are a lovely soft knitted prosthetic which are knitted by a lovely group and they'll send you them free. I find them so comfortable and easier than the gel prosthetic from the hospital. I have also got a knitted one and put a shower scrunchy in it for swimming, just wring it out and your done!
Looking at the scar and boob/lack of... I made myself do this right away.. not everyones cup of tea and you do what is best for you. I was quite amazed how neat it all was and now its just normal.. in fact the remaining boob is a bit annoying sometimes. But thats just me...don't rush it. I'd pretty much decided I wouldn't have recon from the outset but I may change my mind further down the line.. make those decisions when you feel ready.. remember its your body and nobody elses!
For those facing chemo.. I had that and radiotherapy too. The thought of chemo is definately terrifying but it is doable. You'll get loads of support on here, just find the appropriate "chemo month" group and you'll go through it together. Obviously everyone is different when going through chemo but for most of us we seemed to have a few yuck days but pretty much managed to do everyday things inbetween. I even worked (from home) all the way through, got out for walks, went to friends (just not during the "infectious" weeks - you'll work that out when you get there). So it wasn't all bad. Just keep talking to your chemo team if you have worries, they have answers and medications for all sorts of side effects.
I've just had my 2nd year mammogram since diagnosis, now waiting for results.. won't lie.. that wait is horrendous wherever you are in this journey. But day by day.. cancer is not the first thing I think of in the morning or last thing at night.
Be kind to yourselves.
You've got this.
Morning Claire.. Hopefully you will get the results sooner rather then later.. I got mine a week earlier then expected because of the covid situation apparently the labs aren't as busy as normal because ppl aren't seeking medical help due to fear of going outside.. Hopefully everything will be clear and all you have to do is heal 😘
Hugs San xxx
I'm not sure I'm going to have reconstruction. I've said no at the minute ( can't have it anyway ) but who knows if I'll change my mind eventually.
I know I have one big scar from the centre of my chest to under my arm . I've had a surgical bra on the last couple of days and it feels surprisingly comfortable .
I'm still losing quite alot of fluid from my drain but it's early days yet . Definitely can't wait for a proper shower !! 😁
Just a waiting game again now for results to come back .
Hey Claire... Thank you so much 😘 you have also helped me more then you know 😊
I had my drain in for 2 weeks I was producing a lot of fluid so my nurse waited until it was less than 100ml (over 2 days) but tbh I was happy to keep it in as long as It was needed to be in as it didn't bother me so much
I looked at my scar straight away but to be fair I didn't have a mastectomy... Yeah a have a 4/5 inch scar right across the centre of my breast minus the nipple.. But I realise That's not the same as losing the whole breast 😢 I find myself constantly thinking back to when my mum had her mastectomy she seemed to not be bothered about it she acted so brave.. I asked her recently about it and she said she was bothered and that she hid her emotions from us which is so typical of her ❤️ she decided against reconstruction but she was 67 at the time.. If it was me now facing that at 55 I would probably opt for reconstruction but maybe a year from now when this pandemic is over... Its a personal choice and you will look at your scar when your ready to.. I think it will be a little shocking at first and I'm sure you will cry? I think I would 😥 but like you said to me facing chemo etc and being strong... Well you are too and you will be OK.. In the end ❤️ it a process.. It feels a bit like shock and grief but like grief, time is a great healer.. And thank god that's what you have plenty of.. Time 😊😘 you will figure it out and you too will walk away from this a much stronger woman
I know the thought of chemo is very scary but just keep thinking you are making sure everything is gone . Yes is will be a testing time ahead but you are strong.
You've had your surgery and you can 100% deal with whatever chemo throws at you. You'll come out the other end such a strong person . Talking to you has helped me so much. It certainly put my mind at rest more over surgery and for that I'm very grateful .
How long was your drain in for ? I have no dressings on at all . Haven't fully looked at my scar yet . Not quite ready . I'm sure once I speak to my consultant I'll have more answers too. Still scary but I feel I'm on my way now and will take anything they throw at me in order to beat this .
Hi Claire.. Glad your feeling great that's wonderful news 😍 I had my drain taken out today and all dressing taken off... I can now have a proper shower!! Didn't feel a thing either also the feeling is beginning to come back to my arm so a little uncomfortable
I have a phone consultation on 10 June to discuss further treatment for my future self (their words) It looks like I do have to have chemo because my breast lump was stage 3 not stage 2 like I was first told 😢 it's taken a few days for me to get my head around that and facing up to chemo and dealing with everything that chemo entails .. Also Means I won't be going back to work for a good 6 months now well definitely not this year anyway but hey it could be worse so I'm counting my blessing
Hope you're feeling ok. Just a quick update . So 4 days on from my op and I feel absolutely fine . Just a little tender and tired but so much better than I could have imagined !! Still losing quite a bit of fluid from my drain but I understand that's normal.
Trying hard not to do too much , I'm not used to sitting about .
Have any of you started any further treatment yet or have a plan in place ?
My arm feels quite normal. I'm doing my exercises daily and trying to keep moving it as much as I can . Spoke to my nurse this morning who said my op went well . Just waiting for all the results back now .
Also just a quick mention my armpit and the top of my arm has been completely numb but the last 2 days I'm beginning to get some feeling back so is now a little bit more uncomfortable but nothing I can't cope with... I also still have my drain in because I'm still losing a lot of fluids my nurse said she will take it out on Monday xx
So glad your feeling well and that for now that part is over for you 😘 .. I'm nearly 2 weeks post op.. I have done my exercises every day Well the easy ones lol I think it's important to try and keep my shoulder mobile because I've have had a frozen shoulder in the past and I remember it being painful.. That's why I've been determined to do them the best I can 😊 I only take painkillers before bed because they help me sleep deeper (oh I can't wait to sleep on my side 😂)
Just do what you can with the exercises and listen to your body.. If your a runner (my daughter loves to run as well) you will be in tune with your body and know what you can and can't do.. A little bit is better then nothing at all so do what you can but still try and do it 😊 I hope I've helped you a little bit
Big hugs 😘
My arm and shoulder feel fine now. Just like normal really. My arm pit is sore and between my arm pit and where my breast was. And down my side a little sore. But my arm and shoulder feel back to normal. Scar just numb.
Glad you are doing well. I'm finding the psychological side the toughest. But it's getting easier. I couldn't look at the scar for the first 2 weeks! Getting my head round it now and I'm sure you will too. Keep your chin up xx
I've been a bit emotional today , only normal I suppose but generally feel ok . Yes they gave me a pillow and my mum's friend also made me one. They really do help and I've slept really well the last 2 nights . I'm worried about losing the use of my arm/shoulder more than anything . Did you do the exercises and does yours feel ok ?
I know I'm very early days but all sorts goes through your mind doesn't it . I ran alot before so hoping that because I was fit and well I'll recover well and get back to as near normal as possible .
I'm finding I'm not taking too many painkillers during the day but have taken them before bed to help me sleep .
Glad you are doing well 🙂. I'm nearly 3 weeks on from my mastectomy now. It feels really numb now. Cant feel anything of the scar except on my side and under my arm which is still a little sore. But I'm managing with no pain killers now. The hardest bit I find is mentally getting my head around it but with time it's getting easier. I even braved the hot tub last night with my new mastectomy swimsuit and swim prosthesis! Just did a change of water first and made sure no chemicals were in it. And didn't stay in too long, but it was fine.
Did they give you one of those round pillows to put on your arm at the hospital? That really helped me sleep. If not I can always send you mine as I don't need it now.
Morning Ladies ,
Thank you for your thoughts and messages. They really mean alot.
Had my surgery Thursday morning at 9am and was on my way home by 4.30pm. Feel really well although very tender and sore . Sleeping fairly well with help of painkillers .
They have given me a few exercises to do and I tried yesterday but found them uncomfortable , which I fully expected. Did you just do what you could manage ?
I haven't had a look at my scar yet but I know I have one big one from my chest into my armpit and one drain , which they are calling me to check on Tuesday. No wound dressings . Trying to keep mobile in the daytime but resting when needed .
I've been thinking of you cdlucy the couple of days hope your surgery went as planned and you're healing and resting well.. No need to answer me just know we are here for you if you need us.. Have a lovely weekend 😘
That’s it Sandra, but it in a back pack and keep looking forward and when treatments done whizz it round your head and chuck it ❤️ A little story that’s helped a lot of us over the years is strawberry blondes mountain lion 👭 think it’s in hope and inspiration bit of coffee lounge, but do try and find it, it might help a bit 👍💕💕✨✨Shi xx
We are very similar cdlucy and your absolutely right.. This is our journey and we will deal with what is thrown at us...
We all have our crosses to bare but I suppose we can either drag them behind us or choice to pick them up and carry them 😘💪
So pleased for you that they have removed all of the nasty C Znandra. Although the thought of chemo and radio is scary just keep thinking that it is best to be sure it's gone for good .
Our journeys are so similar . They told me from my biopsy my lump was 30mm with 2 cancerous lymph nodes. Suppose I'll know for sure once I've had surgery and I'm kind of expecting chemo and radio too.
Try and sleep well tonight knowing they have removed it all and you can now take whatever they throw at you on your journey to recovery xx
great news that you don’t need more surgery so you can tick that off the road to recovery list. Although news about the chemo is disappointing it’s very doable and it won’t be long until you can tick that off too. It’s sometimes difficult to see when you’re in the middle of it but I have really taken comfort from the ladies who have been there and got to the end of their treatment journey. Hopefully that will be us soon.
👍great news they got it all ❤️ Sorry you’ll need chemo, read some previous chemo threads to pick up tips and tricks ❤️ Also join the chemo thread that’ll be open when you start 👭 together you do get through ❤️ Just keep vigilant and rapid response your team for anything during chemo, keep check on temp with thermometer during chemo and if antisickness meds don’t work ring your team they will tweak till the get right combination 👍 Ask away there is always someone who can help and don’t forget the ask the nurse and someone like me facilities on here too. 💕💕✨✨Shi xx
Hi everyone.. Thanks for the support girls 😘 he called early because of the covid situation and not being as busy as they usually are here's what he said..
The lump was 30mm so quite big but I don't need further surgery because they got it all so good news there 👍
He said the cancer was in 2 of my lymph nodes so I will be having radiotherapy and chemotherapy 😢.. In their words to protect my future self.. It sounded fairly positive I suppose but I will be honest I'm a bit gutted about the chemo part but if it ensures a healthy long life well yeah of cause I will deal with it obviously I'd prefer not to lol but I will have to enbrace it and except I won't get back to work and my normal life for a bit while longer xxxx
Znandra, hope he’s calling early to put your mind at rest as it’s good news. Everything crossed for you
It shouldn't be different depending on area but it seems that way... I've had a phone call from my breast nurse to say my surgeon will be ringing me today after 2pm (and up to 5pm) with the results of my surgery 😖 why a week early? Not going to lie now I'm nervous.. Wish me luck ladies... Also cdlucy I will be thinking of you all day tomorrow 😘😘
It certainly seems like treatment differs between different hospital trusts.
Mine is as follows :
1. Found lump , saw Dr which in itself was hard as they weren't doing face to face appointments so told me to wait 2 weeks. I didn't and insisted I was seen.
2. Referred to breast clinic and sewn within 10 days of seeing Dr. Had mammogram , scan , breast and lymph nodes biopsy . No results given .
3. 8 days later called back to breast care unit and given results. Cancer in breast and lymph nodes. Referred for Mri and ct scan .
4. One week later had both scans .
5. Approximately 4 days later had results and was told they would recommend mastectomy and full node clearance.
6. 3 weeks later off in for surgery tomorrow .
I would probably have been in for surgery sooner but my husband works abroad so they have been waiting for him to get back and quarantine for 14 days . He couldn't live in the house with us so that made it harder .
They also said I would possibly be having chemo and radio but that will be discussed once I've recovered from surgery.
Hi, for what it’s worth here’s my long timeline
1) 29/4/19 found lump
2) 6/5/19 gp a week later
3) 10/5/19 one stop breast clinic 4 days later ( used health insurance as the nhs appt was a week later) had exam mammogram ultrasound and biopsy. Told it was early stage cancer there and then and would need surgery and radiotherapy- I had to ask what radiotherapy was!!
4) 17/5/19 1 week later got phone call with most results (not the her2 ) and hormone blockers added.
5) 20/5/19 3 days later phone call to say surgery would be in 2 days time, pre op the following day- no scans deemed necessary as lymph nodes showed clear on ultrasound.
6) 22/5/19!surgery - therapeutic mastectomy and snlb. Overnight stay needed. Told by consultant that at least one nodes looked to have cancer so possible chemo. Went back to work 3 days later
7) 5/6/19 2 weeks later told results, micro papillary bc and also in 3 of the 4 nodes removed, chemo recommended along with everything previously told. Still no scans mri, X-ray or ct as they “know” they’ve got it all!
19/6/19 2 weeks later see oncologist
9) 26/6/19 a week later start chemo, 3 ec, 3 docetaxel
10) 9/10/19 18 weeks later finish chemo
11) 16/10/19 a week later see oncologist prescribed anastrozole and radiotherapy and zometa arranged. Didn’t see oncologist through chemo.
12) 19/11/19 5 weeks later radiotherapy started
23) fri 13/12/19 a week after radiotherapy finished, saw consultant and had first zometa infusion
and that’s it to date, still no scan - dexa ct or mri, I’m not happy about this but I’m told there’s no need. I have appointment for June 8th to see consultant and have 2nd zometa iv. But atm it looks as if it’ll be delayed. I have 6 monthly follow up till 2022 and annual follow up and mammogram till 2030. 10 yrs! This is apparently because of the late reoccurrence figures. I can get in touch with oncologist at any time if I need to.