Hi, good idea to talk over all your options, there's so many choices for recon.. Lots of ladies on here will have had all types so good to get advice from them too. I have friends who have had different ops and all very pleased. I think you can expect a slightly longer stay after recon but enjoy the rest! I think youll get the masectomy node clearance and recon at once. I just had to have chemo in between.
I did have radiotherapy too, 15 sessions after I'd healed from now clearance.. That was by far the easiest bit... After chemo anything it is!!
Hi Kip, thanks for the reply.
Wow! Home the same day after a mastectomy! That’s quick, although I don’t suppose anyone wants to hang around a hospital.
I think I will be going for reconstruction but I have yet to meet the surgeon and oncologist to go over my results, so don’t know my plan yet.
I presumed that I would get everything done at the same time, mastectomy, reconstruction and node clearance but I’m now thinking that seems an awful lot.
Did you have radiotherapy too? Xx
Sorry for the delay in replying. My masectomy surgery was so straight forward, I went into theatre at 9am, and was home on same day at about 3pm, I had a drain in for about 3 days and it wasn't too bad. They gave me a little bag to carry it in. The scar has healed really well and quite painless, altho I didn't have reconstruction. Best bit of advice is to do the exercises given to get movement back in your arm, mines fine. I also had node clearance in a 2nd op and again in and home in a few hours, had a drain for about a week that time. They used the masectomy scar and that healed well too. I still do exercises c each day just to ensure movement v it a good. You've done chemo so the ops v will be fine. Just remember not to over do it.
I have just finished my FEC-T x6 just before Christmas. I have just had my ultrasound and mammogram today and back for MRI on thurs. oncologist appt not for another 2 weeks. I believe I will be having a mastectomy and full node clearance too, how did u find the surgery? Did u have a drain and how long was your recovery. I hope you don’t mind me asking xx
Thank you lilyb84. I also have a results appointment Friday. Hoping all goes as well as it can go for you with your appointment on Friday. Xx
Best wishes for tomorrow jemmalou101. Hope it goes as well as it can for you too. Xx
Hope your doing OK too after your second surgery lvp84 Xx
Sending loads of luck and hugs for tomorrow Jemma!
And glad to hear you're recovering well Shablah.
I'm now off sick from work until baby arrives, no decision yet but looks likely it'll be next week. Things may change though, seeing obstetrician and consultant on Fri.
Hugs to all! x
Sending a hug for tomorrow... Any questions just ask, not sure if i had the same chemo, I had Fec T x 6 but happy to offer any tips to get through it.. Best advise is take it day at a time. Are you cold capping?
Thank you for posting kip, it really does help newbies like myself to see that there is a light at the end of this very dark tunnel. Delight that you are out the other side and well and healthy and that you still keep in contact on this site.
i have just joined the chemo group today and already found a lady who’s having the same treatment as myself so that’s reassuring as it’s a tough time but it’s good to know your not alone.
I have my pre-assessment last night and the nurses couldn’t be more supported and link you advising to ring them over the slightest little thing they are there to help and said they have a lot of medicine that can help with a lot of symptoms so just going to keep positive and hope for the best!
take care of yourself xxx
Just saw you are starting chemo on Wednesday, wanted to say good luck. I had chemo in 2018 (summer) and whilst some days are tough, its doable, I got through it, managed to work pretty much every day (albeit from home) and still went out and did nice things. Take it slowly, listen to your body and don't be afraid to call the chemo hotline you get given if you are struggling, they have so many different drugs to combat sickness etc and you just need to ask and they'll sort you out. I get you when you say you are "looking forward to it"... I found once treatment started I felt more in control. I am now months clear, and almost 13 months since end of treatment.. I had the lot, mastectomy, chemo, radiotherapy and node clearance, so any questions ask away.
Have you joined the January 2019 chemo group? There should be one set up now under the undergoing treatment section, you'll meet other ladies starting chemo at the same time, its a great way to find tips and hints to get by.
Welcome back, did you have a nice break? I know you said you was going away for a few days for new year.
I had my post op check today and all is healing nicely apparently, so that's good news. None of my results were available unfortunately what with the new year bank holiday so I have to go back on Friday for the results.
I know what you mean about being excited to start treatment and at the same time it's very worrying. It's such a strange thing that we are having to go through. Fingers crossed for you for Wednesday and that it doesn't leave you feeling too bad physically. If you feel up to it let us know here how you are. I'll be thinking of you xx
Chemo starts for me this Wednesday 😬 😟 am excited to get going as I’ll still have this lump until I finish my treatment (mid may / June) and the most frightening part knowing it’s still there but fingers crossed it will do it’s job and shrink it so better options for surgery!
How are you feeling now Shablah nearly a week on following your surgery? Do you know your next steps?
any news in when the baby is making his / her apperance? Did you decide on delivering at 34wks lilyb84?
I am thinking of you all in your next steps, as daunting as this is it’s good to talk about it. xxx
I'm sorry you have such a hard decision to make but I'd say go for option 2 too. It's seems like the best thing for you. I'm sure your baby will be fine at this far along in your pregnancy, I know it's a tough time for you and having 2 with close birthdays is nice for them and thinking positively you'll be able to give them joint birthday parties which they will probably love! Try to have a relaxing weekend and keep us up to date with what you decide. Sorry I missed your birthday completely, hope it was a good day for you xxx
Thanks Shablah! It was on the 1st and I had a nice day thank you 😊
Glad to hear you're doing okay and keeping up the exercises.
I had the results of my biopsy on Thurs, the extra calcification they found is DCIS so I'll need a mastectomy. But we have to decide whether to have surgery before delivering baby (in which case they won't be able to do a sentinel node biopsy) or deliver baby first so they can do the full screening for me. If we go with the latter I'll be induced in less than two weeks' time at 34 weeks! No idea what to do but everyone seems to be leaning towards the latter option as it's potentially slightly better outcome for me. I'm not ready to meet this baby yet!! We're going to end up with two children very close together in terms of birthdays as my son's 4 on the 20th...
Hope everyone is doing okay xx
Just wishing you happy birthday not sure if it's today or yesterday, sorry if I'm late hope it was a good one xxx
I'm doing OK at the moment. I've been doing the exercises religiously. They were hard the first day as I couldn't fully extend my arms, I still can't but I'm doing as much as I can.
I have a post op check on Monday not sure if I will get more results or not and I'm praying they got enough margin and I dont have to go through it all again.
Hope you are both well Jemmalou101 and lvp84 wishing you all a relaxing weekend xx
Well done! Rest up and do your exercises, my mum said they're important!
Happy new year to you all xx
Thank you jemmalou101. I feel so much better already - knowing the most of it is out of me. Happy New Year to you xx
I got through it, if I can do it, no doubt you can. I feel so much better now. Thank you for posting. Happy New Year to you xx
I'm home, so I got through today, yay! I'm feeling so much better knowing that lump has gone now, but the bad news is I was supposed to take part in that clinical trial but unfortunately the cells I have were not compatible with the fluorescent dye they use, they said it wouldn't bind to my cells so they didn't use it on me as it would of been pointless. I'm pee'd off about that but glad the surgery is over, for now anyway, praying I wont have to have it again but hey ho if I do at least now I know what to expect. I'm already feeling better and stronger mentally knowing the most of it is now out of my boob! I feel whacked out physically and its an early night for me despite it being New Years Eve. Happy New Year to you and thanks for posting and your good wishes xx
Hey Shablah, thinking of you for the surgery! I’m also excited for you as means lump is out. Best of luck, let us know how you’re feeling when you’re out. I’m sure you’ll be fine 🙂
Well we're all in the same (or very similar) boat right now! I hope you can relax a bit over the weekend x
Yes I'm right with you on the surgery thing. I wouldn't have reconstruction either. There's so much involved in that and it's such a long surgery, especially having it done at a later date and going through the expander thing and having fat taken from somewhere in your body to make a new breast . I know I wouldn't want do it. I'd be happier just putting a chicken wing in my bra! Much easier to deal with, for me at least!
Yes my hospital does have a support group attached to it and I will be going along at some point. I think it would really help to meet people going through the same thing. Thanks for posting when you have so much to deal with yourself xx
If it's any consolation I'm absolutely terrified of surgery, and the prospect of possibly having multiple types over the next few months fills me with dread. If I need a mastectomy I can't see that I'll cope with reconstruction as well as I can't even think about it without feeling sick! But I'm trying to take one day at a time and things will feel more 'normal' when they're actually happening! My BCN said everyone has something that worries them and that thing is different from person to person. My hospital has a BC support group which meets every month, is there anything like that near you? Could be good to meet others who've been through it or are going through it, especially as you found the someone like me service so helpful xx
I've spoken to a volunteer from the someone like me service. I'm just a wuss with anything medical and yes one of the BCN said she will refer me for counselling but apparently there's a long waiting list. It's as lvp84 said below you just feel like you are the only one going through this which is really not the case. I will feel better this time next week because my surgery will be over x
Yes you are right. I'm sure I will feel a whole lot better after surgery. I know there is still some way to go in treatment terms but at least the most of it will be out of me. I'm trying not to think about it but it's impossible. I'm think I will be calmer after surgery too x
Glad your appt went well Jemma, great news that the CT and MRI were clear! And glad your surgery went well lvp84.
Shablah, has your BCN spoken to you about emotional support? Is there any self-referral available on the NHS where you are? I think it's totally normal to be feeling emotional and anxious at this stage especially since you're still waiting for the full information. I was definitely in shock the first week or two but even though I don't have a treatment plan yet I feel much better 3 weeks after diagnosis, just trying to stay busy and remind myself that nothing will.change with worrying. But if you're really struggling please reach out, there will be people out there who can listen and support! x
Great to hear that your surgery went well second time round lvp84, keep positive that they have got it all, sending you lots of positive vibes. You’ve got this!
good sign that your negative HER2, least you won’t need hormone therapy , xx
You are probably still processing actually having BC, i was a emotional wreck for the 1st 3-4 weeks too but I feel in a good place at the moment as I know my pathway. my oncologist , consultant and BCN have kept me really informed all through the process said if there is a cancer to get than BC is the one you want. 1/2 will get cancer and 1/8 will get BC and this is the most curable with treatment. So please keep that in your mind.
meeting with my oncologist went great today , MRI and CT scan came back all clear so not spread and contained in the breast.
Plan set in motion to start chemo on 8th January, with plan for surgery in 4-6 months once (hopefully) its has gone smaller!!
Completely hear you, I totally felt a little more grounded (as much as you can be) after having a much clearer path even though I’m still waiting on whether they’ll recommend chemo. I think a plan and focusing on that, knowing you’ve got any “active cancer” out all helps. I know you’re worried about the surgery but trust me knowing it’s out feels good. I’m less achy now, just not as tense... still rubbish and still get v scared but I’m able to calm down a little more. The difference I feel now compared to my first 3-4 weeks is massive, I was CONSTANTLY thinking about it (read:worrying). But so so many people with worse diagnoses are still standing and smiling and being warriors. What you’re feeling however is so normal, and it feel so lonely too. But we’re all here with you 💚
That's really good news not being HER2 positive. Glad to hear you are recovering well from the surgery.
I'm still up and down at the moment, one minute I'm thinking "get a grip, you can do this crap" then the next minute I'm thinking "you are not as strong as you thought you were" if that makes sense, but I will get through this I don't have a choice and I have to go through this. I keep thinking of loads of people who have been there and come out the other side who have had worse disgnosis' than me. I'm still scared though but at the same time I'm still numb. I haven't cried, I haven't gotten angry nor have I had any other emotional response the only thing I've had are the physical symptoms of severe shock
I’m feeling absolutely fine, I’ve developed a bit of cording on my armpit, it’s not too bad but can’t stretch out completely so will get a bit of physio. Otherwise healing very well with minimal discomfort, just praying he got it all this time!
i was told I’m HER negative, didn’t get any percentages or anything for that. If I was positive he said chemo would be 100% on the table.
how you feeling?
How are you feeling after your second surgery? What about HER2 did you get told if you are positive or negative yet?
im also highly er/pr (8/8 for both). Still not sure what my treatment will be despite having had surgery etc, it just feels like we get drip feed the information. I was told I’ll be tamoxifen but wonder if they’ll recommend the monthly shots as in so highly oestrogen driven. Gosh at 35 I’m really not really for any menopause!! But, if it means I’m cancer free then I’ll take it..
sending lots of love to you all, we’ve got this, we’re in good hands.
I'm sorry I can't help you with the numbers either. My letter didn't make any reference to any numbers or percentages at all. Don't Google anything either, I'm sure you're already not goggling and like me have in the past, and learnt the hard way of reading all the horror stories on Dr Goggle.
Not long to wait now for you til your results, it is so stressful all the waiting we have to do. I really think hospitals should refer everyone for counselling immediately after their diagnosis. Personally I think that's when we need the most help when our bodies go in to shock and our minds go into severe overdrive. I know they keep saying just ring the nurses but I think we need more. I felt like I did anyway, I feel like I'm just starting to cope with this almost a month after my diagnosis even though I still have "in shock" symptoms x
Don't know yet, I think it's more likely now they'll do surgery first then deliver baby early. But won't know anything until 2nd Jan (and not getting my hopes up for a plan then either!).
The one letter I had says I'm ER+ 6/8, Progesterone+ 7/8 and HER2+ 40%. No idea what any of that means but know it's triple positive!
Yes my letters all come with a cover letter saying its hospital policy to copy all patients into their correspondence, you can opt out of receiving a copy if you want to but I think it's useful not having to chase the GP for a copy... At least I did til Christmas eve's little surprise for me! 😲
It must be a huge worry being pregnant. The good news is you are in the last tri of your pregnancy so your baby is already big enough to be delivered. Are they starting your chemo whilst still pregnant? X
Mine is triple positive and grade 3, no stage yet (if they'll even give me one) and have also only seen the consultant surgeon and nurse, so sending solidarity! Don't know yet if I'll have surgery first but it's looking most likely now I'm further in pregnancy (they have to leave a break between chemo and delivery). Sorry you had to find that out by post Shablah - crazy how different it is everywhere, I've had no letters except the one I asked for!
Sorry I forgot to say, no my letter had no percentages on it. I haven't yet met an oncologist only a surgeon and the nurses
Yes it's confusing isn't it. We have the same but are being treated differently but as lvp84 wrote here she went up a grade after surgery so we really don't know what we are dealing with until we have our full test results I guess. I haven't had any scans or an MRI yet either. I've been told that they will be taking away between 4 and 10 lymph nodes too. I guess the surgeons don't know how many/much to take until you are actually in the theatre.
I'm trying not to think too much beyond the surgery. In my head I'm doing it step by step as in, I'm just thinking I have to get the surgery over with first then I'll have the waiting game again for a week or two before I get some solid answers as to what's happening and I'm all too aware things could, can and do change.
I'm not even thinking about the menopause yet. I think that will be small fry in comparison to going through the treatment we're facing but that's me thinking optimistically that it will be fine and I'll deal with that at some point in the future. I'm trying not to think about that for now but I think I might be a cow to live with too when it arrives!
Lucky you going away over New Year that's something to look forward to.
Your diagnosis is exactly like me, my HER2 took ages to come back. A extra 2 weeks from when I was confirmed to have BC. Bit strange that they sent that through to you before telling you face to face that is definitely not information to dump on you without a BCN being there to answer any question you have. Defo speak to your BCN as they should be present when you are getting told information.
my HER2 result is why I am doing chemo 1st so must be a strong inkling that yours will be negative as your booked for your op.
I had to go docs for letters for insurance and seeing letter sent from my consultant to my GP was shocking it’s so detailed and am strong ER /PR + too. My letter from oncologist has percentages on too, did you get that??
my poor husband is already stressing about the thought of me going into early menopause because of the chemo and therapy treatment ... am going to be a absolute nightmare.
I am taking it one appointment at a time, trying to focus on the now and not the future and that seems to calm me down. will be trying the breathing app now to see if it can stop my palpitations! Xx
Thanks for replying and the birthday wishes. I also had a bit of a shock on Christmas Eve as a copy of my latest letter to the GP from the hospital plopped through the door and it said that I am grade 2, stage 2, strongly ER & PR positive but results of HER2 test are still unknown. I hadn't been told anything apart from I was stage 2 so that was a shock to find out by post! I really wish that letter had arrived after my surgery and not before. I feel like just as I'm getting my head around things and feeling a bit more positive, as I take one step forwards I get a kick to knock me back three steps!
Yes I'm still aching and getting palpitations no matter what I try to do. Hope that app helps you. I do the breathing exercise lying in bed to try to get to sleep x
Awwww happy birthday ! 🎉🥳 it’s hard to celebrate with this hanging over (it was so awkward trying to be happy all Christmas Day) but you’ll get through it and friend and family just wants to show their support and celebrate the happy times as well as support you for the crappy times ahead.
I think you will be amazing on the 31st, I work in a hospital and the doc / nurses and all other staff are amazing (even with a struggling NHS) so you are in great hands! It’s the waiting is worse and once you have your op your on the road to recovery.
I am aching all over, back/arms/heart racing my whole body is just tense if that makes sense. I have never really struggled with anxiety but it’s defo bubbling so distractions are defo welcome. Am going away new year so will be nice for the calm before the storm (chemo)
I’ll download that app now, anything to take my mind off things.
if your ever struggling please reach out, I feel better already posting on here tonight. Xxx
Sorry to hear you been having a wobbly day. I've had and am still having plenty of those. Good luck for tomorrow's appointment. I'm due a lumpectomy on the 31st. I'm not very good at anything medical and I'm worried sick about it. The fact that thousands of ladies before me have been through it is giving me hope and getting me through. I'm not sure if this is helpful to you but one of the breast care nurses told me to download the app Smiling Mind. It's a free meditation and breathing exercises app that is supposed to calm you down and help with stress. Not sure anything is helping me much at the moment though. Today is my birthday too. I really can't and haven't been able to enjoy it but I've put on a front all day with my relatives. They've all now left and I'm vegging out now, at least trying to, I'm still aching all over too. Are you? Please let us know how you get on tomorrow at your appointment. Sending you positive vibes and best wishes x