You sound like me, I keep jumping ahead. It is a big decision, but sure that the consultants will be able to guide us all to the best possible outcome, as this is such a individual journey.
I am swaying personally towards the mastectomy option for personal reason (I just don’t think I could go through this is again) and can always get reconstruction down the line and that decision doesn’t need to be immediately it’s frightening me that they won’t get clear margins (plus after 3 kids boobs ain’t looking as impressive as they used too 🙈)
it’s such a waiting game, well just so you know I’ll be thinking of you next Thursday... it’s such a worrying time but you are not alone, it’s a club that we don’t want to be in but the support is amazing!
how are baby prepping going, do you have support around if baby needs to make a early appearance? Am sure they will do what right for you and baby. Xxx
Thank you! I'm mostly just feeling unprepared and scared of a c section (I was really hoping for a birth without interventions this time after my first very long back-to-back labour, when I ended up having an epidural) but I guess that should be the least of my concerns! I'm hoping for 36 weeks+ though as it's my son's 4th birthday the week before that... 😉 x
That’s good you are 31 weeks - give it another 3 weeks and even if they deliver at 34 weeks after steroids for baby delivery would be fine (I’m a midwife) - try not to worry xx
And thank you for thinking of me! I had my second biopsy last Friday, get the results next Thurs and hopefully a treatment plan asap after that. Feels like the further into this pregnancy we go, the more likely it is they'll want to deliver baby early, which I'm scared about. Also feeling very nervous of making surgery decisions if I need a mastectomy, deciding on reconstruction or not feels huge! But trying not to get ahead of myself 🙂 x
Sorry to hear you're having a wobbly day, totally understand - I keep googling triple positive BC and likelihood of metastasis and so on, and it's not helpful! Not helped either that I can't have all the tests as I'm pregnant so it's going to be ages before they'll know lymph node involvement etc. Good luck for your appointment tomorrow, will think of you xx
Any news on your biopsy results lilyb84?? Been thinking of you all over the Christmas period, hoping for a positive outcome for you!!
Do you have your treatment plan in place yet? Xxx
Hope you all had a lovely Christmas well as good as could be expected!
Am having a wobbly day (my turn today) meeting my oncologist tomorrow and will be getting told my MRI and CT scan results, am so scared and worried! Need to walk away from my computer as am back to looking at different stages and am petrified of what the results are going to come back when they stage the cancer.
Am grade 2, that had been confirmed but worries it’s spread (am a very unlucky person and just feeling very negative at the moment)
How is everyone else? Any fears over this, feel like am going to have a panic attack am overthinking everything 😢. Xxx
sorry some of my last message didn't make sense. I meant to say to jemmalou thinking of you for your January appointment and to Shelton I'm sorry your having a crap time, as we all are right now. Xxx
Good Morning ladies
Just checking in wishing you all a Merry Christmas. Hope your biopsy was OK on Friday lilyb84. Thinking of you all right now. Hope your doing OK lvp after your second surgery and you are well too Sarah. Best wishes for your January appointment jemmalou. Sorry to hear your having a crap time Shelton, I think this Christmas will be hard for us all, well it will be for me anyway but I am trying to deal with it by putting on a happy front right now even though I don't feel great. Sorry to come here and whinge again. Best wishes to you all xxx
I am 57 and five years ago my partner had prostate cancer. His surgery and treatment left him completely impotent and no longer interested in any physical intimacy. I have lost all sense of womanhood and femininity after five years in a celibate relationship. Now I have breast cancer and I will never feel like a woman again.
My message to you is: you are only 35 - have the reconstructive breast saving surgery, cling to your womanhood and femininity while you are still so young. You never know what is round the corner and being so young, there may be many times when you will want to feel as feminine as possible.
And, listen to many opinions, including your other half's, and your mother's and female friends - and then take time to think to make up your mind yourself and do what you feel is best for you.
We are all different people on this journey in many different ways.
good luck - see you on the other side.
Mine is stage 2 that's all they have told me so far but that could change. Yes the stage and the grade are different. I don't yet know my grade. I don't know about the hormonal stuff yet either because when I saw the surgeon not all my results were available. I think I prefer to wait til after surgery to know. I think I'll feel more positive after surgery, it's on 31st, New year's eve would you believe!
That's not great news for you having to have chemo from the off. It's all really terrifying isn't it and no matter how much I try to put it to the back of my mind, it's just "there" all the time. I'm sure it's the same for us all at the moment. Sending you a massive bunch of Christmassy positive vibes. 🎅
Sending you lots of love and positive vibes that they get clear margins this time, it’s good to see how quickly they got you back in... your in safe hand lvp84
wishing you a speedy recovery! Xxx
Are you booked in for surgery on 30th shablah? It’s really not that far away, just try and take your mind off it and try not to stress.
Is it grade 2 or stage 2 as these are different things? I haven’t had my stage yet (had MRI and CT yesterday) and hoping will have a full diagnosis on 27th when am back in with my oncologist and they will stage it.
At the moment I have a provisional plan (results pending) and am HER2 is positive and mine is ER+ an having chemo before surgery to hopefully shrink it (1st round booked for 8th January) and then surgery in approx 6months time. My appointment is 2 weeks away due to the fact the clinic is on Wednesday and next two are bank holidays. 😢
am cold capping too 🥶 so wish me lucky seen positive and negatives around this but need to at least try to keep my hair.
Thanks for posting. Yes I know things can change for all of us and it's not straight forward. Sending you positive vibes for today, let us know how you get on won't you. I'll be thinking about you xx
Sending hugs Shablah! If it's any consolation I'm grade 3 and they're still not in a rush to treat as they need to get it right.
I've learnt quite quickly that this is a slow reveal process, with lots of twists and turns - not just a straight diagnosos-treatment journey as I initially thought. I'm personally trying to lower my expectations and roll with it so I don't feel knocked back every time there's new information or a change of plan.
Currently waiting for my biopsy, then going to try and relax until the results come through next week!
the aches and pains were so intense for me, but since my op 2 weeks ago I’ve really relaxed and unsurprisingly the aches and pains have massively reduced. You’ve been (naturally) so anxious and tense and also continuously feeling this way now - your body IS going to ache. Do you have a breast cancer nurse yet you can chat to? If not suggest you get in touch and ask to speak to one about all this to help alleviate. What you are feeling IS normal honey, I’m sorry though it does suck. But as you say I’m a couple of weeks ahead of you and I feel immensely better then pre-surgery. It’s such a drastic change when you feel more in control with a treatment plan etc. I’m still waiting on the final puzzle of my Oncotype which won’t be for another couple of weeks but I’ll deal with that when I get there.
breathe breathe breathe and preserver with mediation and breathing technique, there is actually nothing you can do right now so try to enjoy your birthday and Christmas xxx
oh and I’m guessing cancer review is just to talk through perhaps what to expect and your results. Knowing helps, they seem to drip feed us everything!!
keep us posted and here when you need for support ❤️
So glad to hear your doing ok. I still don't know any more yet other than I'm stage 2. I had a phone call from my GP asking me to come in for a "cancer review" have you had this appointment? If so was it any help? I'm trying to be more positive but my body still aches all over. Thanks for the tips about meditation. I've been trying deep breathing exercises not sure they are helping me much though! My body still aches all over at the moment. I know I have to get through Christmas and my birthday with this in me which obviously I will do because I don't have a choice, and I think your right once this is out of me I will feel so much better. The surgeon I saw also reassured me this won't change/spread or grow between now and the surgery. Thanks for replying you have no idea how much I look forward to these posts from you girls, knowing that you are a few weeks in front of me and knowing that you are all ok, it really helps to know that you are doing ok, so thank you x
remember it’s the “wobbly” morning thang and will get better as the day progresses. I’ve been using the headspace app to meditate, used to meditate in silence but find that harder now since diagnosis and mind running wild! Highly recommend some quiet / meditative / prayer time in the morning as it will help move the dial to the present / away from the very tail risk worst case scenario risks! You’re a grade 2 so when I was initially diagnosed with that I also wanted to get it out ASAP, and I did but my oncologist was very adamant that nothing was suddenly going to drastically change between diagnosis and surgery, it’s not a fast growing / dividing one. Have they told you more about your cancer yet, can’t remember if you know whether it’s hormone driven?
I’m feeling fine! Sore but nothing pain killers can’t curb, will be discharged soon 🙂 hopefully they got everything this time and I get clear margins 🤞🏽🤞🏽🤞🏽
thinking of you, I know you’ll feel better once it’s out (honestly the surgery bit is not scary, it’s quick and they do this every day! You’re in safe hands) but try and enjoy the time over the next week as it’s so soon now 🙂
Good Morning Ladies
I'm having another "wobbly" morning. Keep on thinking about all the what if's again. I know I shouldn't but my brain won't switch off. Hope you are doing ok after yesterday lvp and thinking of you for today lily. Hope you are doing ok too Sarah and you too Gemma Lou. Sending hugs to you all xxx
Good to hear you are so positive about it. I'm literally crapping myself because I hate anything medical but that's just me and how I am🤦. Let us know how you are on Friday. I'll be thinking of you x
Aw, thank you for remembering ❤️ Feeling good about it, fingers crossed for clear margins this time! I asked my oncologist briefly about the trail, he said he was using it at Guys himself but didn’t quite get why he wouldn’t with me? Maybe this time round it’s fairly straightforward...
That's good you've made contact with someone. I'll be thinking of you on Friday, let us know here how you get on. Sending you a huge hug 😘
Thanks Shablah! I heard from the nurse this morning and will be seeing her on Friday after my biopsy so that's progress 🙂 Glad to hear the someone like me service was good for you, I'm on some Facebook groups as well in particular one for younger women diagnosed while pregnant/with young children and it's heartening to see others in the same position (although sad too of course) x
Not a nice feeling is it when you feel so numb, shocked and alone. Ring the nurses number on here if you can't get hold of your local ones. I think you will feel a bit better to talk about it. Also I did the 'someone like me' thing and spoke to a volunteer lady who has come out the other side so that might help you to speak to someone who has been through the same as you are going through now. I emailed them and they got back to me quite quickly too. When is your biopsy? X
I feel the same - mornings are hard! All the breast cancer nurses have been off sick since my diagnosis as well so I don't feel I've moved forwards at all, especially as I'm still waiting for the next biopsy before they can decide on a treatment plan. Daytime is okay for me too, I think staying busy is the key x
I'm glad I'm not alone in my worrying and stresses. Thank you for replying. I'm sorry you have to go through chemo before surgery, thats crappy. I would imagine your treatment will start after Christmas now. All the waiting seems as bad as the cancer sometimes. I'm having surgery at the end of the month. I'm getting better at "managing" things in my head now although it's still on my mind constantly, it can't not be can it? I am sleeping and eating better though right now but nearer the surgery time I'm sure I'll be back to barely functioning nervous wreck 🥴. Let us know how you get on at your appointment tomorrow, sending you some positive vibes x
OMG YES! Am the same, seem to wake at 5am with all different emotions/ thoughts going through my head. As the day goes on I am ok, and able to rationalise all the emotions.
Glad am not alone, thought I was going mad! I like to feel in control (and this is something I have no control over) feel like I have read every booklet going but still worrying.
Am back in clinic tomorrow to see consultant and then Oncologist on Wednesday as my HER2 has come back positive so am having neo adjunctive chemo before surgery. I just wanted the BC to be removed ASAP, so my minds been in overdrive all weekend !
Oh gosh yes! Went to sleep with it on my mind and as soon as I woke up it was there, but......... it does get easier and easier - I can only describe it in the early days of having a heavy rucksack on your back carrying it about and as time goes by that rucksack get lighter and lighter until now for my the rucksack is still on my back but empty and don’t know it’s there. Those early days are awful, you dream and think all sorts but like I say it DOES get easier xx
Just thought I'd put this here. I'd appreciate knowing if this is just me or not not. I'm finding that I'm at my most "wobbly" first thing in the mornings. I don't mean physically I mean mentally, my brain seems to go in to overdrive at all the what if's but as the day wears on I become calmer and more rational. Does anybody else have this? Thank you for posting your positivity Alex, it's good to know you are now well and living a busy life. Thanks
Awww Alex1967 it’s so reassuring hearing positive stories like yours, it shows that there is a light at the end of the tunnel. Delighted for you are 3 years no trace, thank you for commenting.
merry Christmas to you too! 🎅🏻🎄🎁⛄️
I don’t come on here much, mainly due to the fact I’m just plodding along with life, very busy at work but every now and again I pop my head in - today more than ever really as it’s 3 years today since I was diagnosed with the same grade 2 ER+ and 3 years on still kicking! No evidence of disease so it’s more of a positive note for you and others in the same boat. Have a lovely Xmas x
I'm feeling okish at the moment, thanks. My flu like shock symptoms are starting to subside a bit, I think I'm starting to get my head around things. I'm sorry to hear things have changed for you but that's good news there is no spread. I still don't know what I'm dealing with yet. I think like you I'd rather wait to know after the surgery. I'm sorry you have to go through it again. That is crap! Why don't you ask about the surgery trial, no harm done in asking? It's called EMI-137 Tracer. Although I've agreed to it, it only works if the cancer you have has certain characteristics in it so I don't yet know if it will work for me and I'll only know after surgery. I also used the 'someone like me' service today which I found really helpful. Give it a try if you feel like you need to talk and some support. Sending you a big hug x
that's great you're going through that clinical trial, wish i knew about it before mine because i just found out they didn't get clear margins 😞 so i'm having anything op next thursday. the good news is no node involvement, yay! bad news i went up a grade from 2 to 3...which terrifies me even more about reoccurence now. keep telling myself this is great news as no evidence it has spread (i am actually really pleased) but i'm bummed out its so aggressive!
how are you feeling today?
I'm under Guys Hospital in London where this study is being run by Professor Arnie Purushotham. I think other hospitals are involved too. It's worth asking at yours. Here's some info I found on it.
That trial defo sounds like a winner, will make sure they get it all 1st time! 👍🏼
Hoping my consultant is aware of this... I’ll defo be opting for this, where are you having surgery? My care is at St. Helens hospital. Xxx
I'm sorry I can't upload photos of this clinical trial it's saying the file is too big. I'll tell you about instead, basically it's a surgery thing. They explained it to me like this: The surgery we have to have is guess work by the surgeon as to how much healthy breast tissue and margins they take away. This new procedure is injecting the breast with flourescent dye which highlights the cancerous tissue so the surgeon can have more accuracy to remove the right amount of healthy margin thereby eradicating the need for a second surgery. It's called EMI-137 Tracer. If any of you would like to research it yourselves. Hope that it helps. I've signed up for it with my surgery. Anything that helps us for the future is good if you ask me. Thanks
I just got back from my pre op assessment, my surgery is now not until the end of the month after phoning me and telling me it's next week so I'm disappointed about that. I am going to be part of a clinical trial I mentioned it's called EMI-137 Tracer. I'm going to try and put a photo here so you can enlarge and read about it
Glad to hear you are doing so well. I just had my pre op assessment. I'm disappointed that my surgery won't be til the end of the month after phoning me and telling me they could do it next week 😞
remarkably better than than I expected than you. I came home at 9pm last night, ate dinner then went to bed and slept really well with just paracetamol and ibuprofen. I have pretty much normal movement, just stiff and achy. So far, everything has been easier than I hoped, including the anaesthetic which I was terrified about!
How are you feeling today? Hope you feel ok after yesterday's surgery sending you best wishes x
Thank you. I'll let you know how I get on later. Yes I think we are all the same with the aches and pains and being totally stressed out 😞
Totally understand the worry Jem. I got my diagnosis last Thurs, had a mammogram on Fri and am waiting for an MRI. Consultant said last week they'd start chemo asap but I don't yet have dates and I don't understand how much more they need to do in order to get cracking. Was meant to see the nurse yesterday but they're all off sick, can't be helped but sent me into a spin as I was really hoping for some more questions and someone to talk to!
Sorry you've been waiting so long already, I hope they can tell you more really soon xx
Good luck for today shablah, my body is the same as your. Feel aching all over and muscles and bones had me thinking it had spread there. Defo mind playing over time and making us worry. It really is a shock to the whole system. Xx
Awww am so sorry about your diagnosis lilyb84, it’s not fair especially with little babies too!being pregnant is mean to be such a wonderful experience and to have it tainted by this is unfair.
My diagnosis part seems to be taking forever my initial apt was on 22/11 and I was due back in yesterday for final result (HER2) but consultant cancelled as the HER2 result has still not come back, I feel like it’s spreading as the days / hours go on and am making myself ill with worry.
just feel in limbo, we finally told all our close family and friends and it’s so emotionally draining I feel like I have just slept all week.
Where are you at treatment wise lilyb84? Hoping one i know the plan I will be able to calm down, am a bit of a control freak and hate having no control and the unknown is completely petrifying me! Xx
I totally hear you, and that is normal. You’re suddenly told something you never thought could happen to you. I’m a very positive, practical person and have found myself go crazy these past few weeks. Many strong ladies here who will inspire you with their strength (and you will soon find yours again)
I know it's so unbelievably shocking to even be told you have cancer. Even my own reaction to the news has shocked me. I've always thought I was quite strong but I've never felt or reacted to anything like this in this way before. I've always been very practical more than emotional, now I'm hypersensitive! I'll post again tomorrow and let you know about the clinical trial.