I was told on Friday that I had 6.5cm cluster and have chosen a mastectomy. I see my surgeon on Wed. and will then be given dates for my masectomy op. The nurse advised that I won’t know until after the op. of it has spread anywhere else and this more than anything bothers me. I am 37 and looking for advice regarding what happens to me after the op? How long does it take to get the results of whether or not it has been contained.This has all happened really quickly for me as I only found a small lump 4 weeks ago and now I have Breast Cancer and my right breast has got to go! Feeling bewildered and uninformed. Can anyone fill in the gaps?
Dear Shelley
Firstly, welcome to the forums, I am sorry to read of your recent diagnosis. I just wanted to let you know that Breast Cancer Care have published a Resource Pack, it has been designed for anyone newly diagnosed with information to help you better understand your diagnosis, test results and various treatments, it is available via the following link or by contacting the helpline:
breastcancercare.org.uk//content.php?page_id=7514
You may find our helpline useful to call during this time as they can give information about our other support services and also offer support and a ‘listening ear’. The number to call is 0808 800 6000 Monday - Friday, 9am - 5pm, Saturday, 9am - 2pm.
I hope you find this helpful.
Lucy
Hi Shelley
So sorry you have had to join us but you will get tons of support and advice here - I know I have. The information available including the pack mentioned above is excellent - as is the wonderful support from people who know just what you are going through.
The length of time it takes to get results appears to vary depending on whereabouts you are - so I can only give you my experience - i am sure others will post and give you their experience.
I’m 46, based in Scotland, and was diagnosed 1st Nov 07 after finding the lump myself. Following the mammo, ultrasound and biopsy on the 1st - I was informed that I would need right mastectomy. I was also informed that prior to the mastectomy they wanted to check for any spread (this was based on the suspected size of the lump and suspected lymph node involvement). I had these scans (of lungs/liver and bones) on 7th/8th Nov - these were all clear. My mastectomy was carried out on 13th Nov.
Following the mastectomy, I received full details of my path report on 21st Nov and was given a detailed run down of the further treatment I would need. The path report gives the precise size of the lump (mine was 3cm), details of any spread to lymph nodes (I had 5 of 11 affected) and whether you are oestrogen, hormone or HER2 receptive (I was er and pr negative but HER2 +).
My treatment regime which includes chemo, rads, more chemo and herceptin, started on 28th Nov - less than a month after I was originally diagnosed.
From reading some of the posts on here - I know that I was lucky (if lucky is the right word) to have been ‘progressed’ through the system so quickly - there are many others who have had longer waits for test results - and it is the waiting that is the hardest. Once you know what you are facing it is so much easier to deal with.
I would add, with regard to the op itself - I was terrifed (I have a fear of anaesthetic and hospitals !) - not so much of the mastectomy, just of the procedure itself. But again, you will see posts on here agreeing that the mastectomy and the after effects are not half as bad as you no doubt will imagine.
Sorry if I have given you more info than you wanted !
Good luck on Wednesday - please keep posting and let us know how you are getting on.
take care
Margaret x
Hi Margaret
Did you have a reconstruction with the Masectomy? Why are you having CHemo etc - it is because it has bypassed the Lymph Nodes? er & pr neg means nothing to me yet!!! I’m sure it will all become clear though!! Is the Chemo as scary as I am thinking it is!!! I’m not scared about the Op - I’m (hopefully) going to get the Surgeon to give my left breast a lift too at th esame time, but anything after that terrifies me!!! Husband point blank refuses to go any further that discussing the Op - understandably (!) - he just can’t get past that point yet - too much Info for him I think - but I need to have the facts otherwise I’m going to go mad!
Thanks in advance for being a mine of info!!
Shelley
Hi Shelley
I didn’t have reconstruction - for no other reason than personal choice - I just hate hospitals and operations, and quite frankly the thought of losing my boob didn’t bother me at all - so the only reason for a recon would be to keep hubby satisfied lol - and at that stage unfortunately he was the last person on my mind haha!.
The chemo is because there was lymph node involvement, and because of the aggressive nature of the tumour.
Is the chemo scary? - well all I can say is that prior to the first one, yes I was scared. But that was just a fear of the unknown - other than readin the threads on here I had no idea what to expect - and to be fair, readin what happens to one person doesn’t necessarily mean you will have the same side effects. If and when you get to that stage you will see from some of the chemo threads that everyone reacts differently - some people continue to work right through their chemo - others it knocks for 6 and they need time to rest - i guess I was somewhere in between the two ! It isn’t the nicest thing in the world - but haing just finished my first 3 months worth - it is do-able.
My hubby was just like yours - just wanted to deal with it one stage at a time - which as you will realise as you get further through - is probably the best way to deal with it. When I was first diagnosed and was told that I had to have surgery, followed by 3 months of chemo, followed by a month of radiotherapy, followed by a further 3 months of chemo, followed by 12 months of herceptin - I was like ‘oh my god I can’t do that’ - it seems like forever. But when you cut it down into manageable chunks you realise you can do it. I can’t believe that I have got the surgery out of the way, and now the first chemo is finished!. I try to plan things for when each stage is finished - I have a wee holiday booked at the end of my rads, before I start next chemo - and then after the chemo my eldest daughter is getting married so have that to look forward to.
I was a bit like you - wanted to know everything about everything. The only advice I would give you is not to trawl the internet too much - it can get pretty scary if you go on the wrong sites, and sometimes the information is so out of date anyway. I tend to just stick with this one and cancer bacup/cancer research uk. The cancer research UK has some excellent info on why/how you may be given a particular treatment regime.
I won’t be about much tomorrow as I have a five hour round trip for my radiotherapty planning appt - so in case I don’t catch up with you - Hope you get on ok on Wednesday - let us know how it goes
take care
Margaret x
Hi Shelly
just thought I would reply to your posting as I am in the same sort of position as yourself.I was diagnosed on 18th Feb. I have to have a mascectomy on my right side and I believe my lymph nodes are being removed too. I’ve sort of decided to have an immedaite reconstruction and am seeing the Plastic surgeon and my consultant tomorrow too. My final decision will depend on that discussion tomorrow. I’m 40 and have 2 kids (6+13) and a very supportive husband. He seems to believe I should go for the recon as I am not a very confident person at the best of times and this would only knock it more! The other reason is I just want to get the surgery done and out of the way-I know this may not be the case but hey!
As for the afterwards, I was told I may need further therapies. My breast care nurses’ words were “as you are young and healthy they may throw everything at you”. Personally I’m taking one step at a time. But I know it’s going to a tough year ahead. I was told though that they have caught it early which is a good thing.This forum is a good place to start and I have found out so much although be careful about which discussions you look at as some might frighten or overwhelm you as everyone is at different stages and treatments may be too.
I know it’s so much to take in at once so do expect good and bad times. I’ve told everyone what is happening to me as it is my way of coping and the support has been overwhelming. It’s only been a week for me to be told but already I have found I’m stronger than I thought even if my legs feel like lead weights and my concerntration is a bit eratic!
Good luck for Wednesday let us know how you get on and vice versa!
Hey JennieF ! meeting with the Surgeon on Wed was ok. Had the same sort of comments as you- “we are going to throw everything at you as you are young”“We feel that due to your age and the grade of your Cancer you will need further treatment and a 6-9 month treatment programme”. I have asked for a left boob lift and have had agreement for this. My Op. is booked for 8th March with CT Scan next Monday. As you, I am having all my lymph Nodes removed and am told that it takes 7-10 days to get results back from the tests on these Nodes. is that really how long it takes? Told my kids (oldest 2 anyway!) this week and will need to talk to their teachers next week. Have told my friends that I know I will need to lean on and have told them all to keep my bizarre sense of humour at the forefront of their minds. Soft am now uncertain whether or not I will aced treatment after the op. but I’m looking forward to pert boobs! How’s your journey shaping up? x
Hi Shelley
good to hear from you! Well I saw my plastic surgeon on Wed too,unfortunately my breast surgeon couldn’t make it. I’ve opted for a DIEP reconstruction (from my tummy) immediately.The surgeon was getting all excited telling me that I can come in a few months for a lift on the left side and to have a nipple done too! Whoa! I thought I have never been one for this sort of thing but now I’m going to have a pair of pert boobs and a flat tummy-yeah!! Because I didn’t see my other surgeon I don’t know full details of the op but I know I’m having my lymph nodes removed.From reading other threads it seems to be the norm to wait about a week for the results. I haven’t got a date yet but have been told I’m on the list as URGENT could be within the next 31 days. My husband is getting really frustrated as he (and me) want it done now!
As for the kids,I’ve told both schools and the support has been fantastic. My youngest is six and the school has a learning mentor especially for this sort of thing.She is taken out of class once a week for 45mins and given time to draw chat and be given space.They don’t push just give her time.She has been given a diary to express herself that I am not allowed to look at it,only her trusted teacher.My eldest who is 13 is of course at secondary level and I spoke to them and they have forwarded a TLC e-mail to all his tutors and I received a beautiful letter of support from his student manager. Both children know what is happening and I have found the best way is to be honest and open with them and they now know I will answer any questions they may have.
To be quite honest the person who is taking it the hardest is my husband.He feels so helpless.I look at him and think I have a third child.Then I panic thinking about how much there is to organise!!!
When it comes to all the other treatments I can’t handle them yet.I just want to get through the op first
well better get back to my NORMAL routine on a Saturday morning,although I get a bit dizzy now knowing which thing to do first!!! So what do I do? Sit down have a coffee and worry about it later!!!
keep in touch Jen x
School support sounds amazing! we are on half term break at the mo. so will spoil their day first thing tomorrow morning ! my kids are 9, 8 and 2 My eldest is a proper drama queen so lots of tears and anguish. My boy is just a normal mad 8 yr old, so not too much turmoil, and my 2 yr old is a self-obsessed witch who keeps me on my toes and stops me worrying about the minutae! My husband too is finding it the hardest and I am having to support him more than he does me at the moment ! He is angry that I still have to wait another 2 weeks for my op. I keep telling him this is because of the recon. and the left lift and so he now wants me to have the vasectomy and want for the Recon. so that we can get it done as quickly as poss. I feel his pain but don’t think I could have just one boob for the sake of a couple of weeks wait. Are you booked in for CT scan or anything yet? Let me know how it goes - I’m hoping to get my results really quickly so that it puts my mind at rest (or not!) Have quickly scanned through some of the other postings and just can’t believe the amount of mental pain some of these ladies cope with. Fair play for being an inspiration to those who are just starting out on their journeys. Quite humbling ! Let me know when you get your op. dates. which Hospital will you be going to? x
Hi Shelly
I’m a newbie, so can understand your shock
I was diagnosed on 13th Feb, and had my first chemo last week as my mass (13 x 11cm) is far to big for surgery despite it not being there before Christmas
Sorry you’re having to go through this. I can understand the children worries. Mine are too little to understand (2 & 6 months), nut my little girl is getting clingy
Love, Rebecca
Amazing-I have just posted on your link! Can’t believe you have already started Chemo - what an absolute reality check that must be. will they give you a masectomy when your lump has shrunk a bit? Have they given you any time scales? Have they given you any explanations re. why everything is growing at that rate? I have found that keeping a sense of humour is key. There is so much to laugh about if you can be a little bit objective!! Are you managing to keep your imagination away from the future? It’s hard, but essential. keep posting hon - it might keep you sane! xx
Hi Shelley
The chemo really did come as a suprise, I’d thought removal would be the first step (and wish it was to be honest to get it gone), but the tumor is too large right now
They’re hoping it’ll shrink (6 chemo planned), and then I’ll have a mastectomy & radiotherapy to blitz anything that’s left
There’s been no reason for such fast growth, but I was still breastfeeding so maybe it’s all the hormones.
I’ve been told they’ll clear my nodes when they do the breast but so far the CT & brain MRI are clear (bone scan next week)
Sense of humor has kept me going so far, but have had parents in law staying this weekend which has made everything much harder.
See you around, Rebecca x
Hi ya!
thought I would tag on! My first consultation was 17th Dec. I had to go backwards and forwards for various biopsies , mamograms and ultra sounds.Then I was diagnosed 18th Feb. It has been an eternity. It’s taken this long as I have 3 lumps- 2 have turned out to be benign but it wasn’t until the consultant radiologist magnified my mamo that he found microcalcifications too.This can sometimes be malignant too therefore a mascectomy. I still haven’t had a date yet as I have to wait for both surgeons to be available,but it will be at Broomfield,Chelmsford in Essex.Like your husband Shelly as it’s taking so long I start to think should I have opted just for the mascectomy and not the reconstruction.But then I think it can’t be that bad if I’m waiting can it??? Ahhh I am so confused!!
I know it’s getting to us all now as my son who is 13 this week had a sleep over and of course I didn’t sleep much and by the end of today I was like a dragon! Good cry did help though! Trying to be “normal” is hard work.
Earlier on Shelly you asked what I meant by therapies,well I mean chemo,radio and hormone.I don’t know about those yet.From reading the threads I seem to think you find out after surgery if this is the case.
Anyway must go typing is taking longer when tired! Let you know about my op date Jen x
ps Good Luck Rebecca.I hope you have alot of support around you.Children are clever little things they sense when things are different but I admire their ability to bounce back! Talk soon x
Hey Jen,
I’m wishing you a really quick Op-date. I had my CT scan today - a whole week before I get to know the results. My husband is going out of his mind waiting, and if he doesn’t Stop moaning. he will be going out of the window too.!!! I’m getting fed-up with his impatience! My kids sat and sobbed tonight, I think they have been thinking things over for a few days and now they need some reassurance. Everything slows down for me now until next Sat. then it’s Op. time. My mum has started asking me really bizarre questions about the BC and I have had to tell her to sort herself out otherwise I won’t let her ring me any more!!! She is SO, SO flaky sometimes !
Why can’t people do their own research instead of asking ignorant and plain stupid questions?! Can’t they use Google?!
Hey Rebecca - how’s tricks? Glad to have your house back to yourself again? ! How old is your youngest? were you b-feeding when you found the lump? Feeling any better? Good days and bad hey hon?!
Hang on in - it’s Mother’s Day this weekend and you never know you might get a nice treat.
Laters.
xx
Hi ya!
I 've got my op date at long last! I go in 17th March for op the next morning.It would be 5 weeks after I was diagnosed.It has been an eternity.But at least I can plan things.So Shelly as you come out I’ll be going in.If your up to it when you come home let me know how you get on.
When I stop and think of what there is to organise I do have a little panic! My husband is great but when it comes to multi tasking-no way!!! My biggest problem now seems to be how can I keep everyone happy? So many people have offered their help and support I just don’t want to offend anyone!! Bizarre really. You are advised to put yoursef first but it’s easier said than done!!
I haven’t been told anything about a CT scan etc but then again the speed everything seems to be going I’ll probably here the day before I go in!
Shelly,my husband is being exactly the same! Luckily (if you can say that) his boss’ daughter had a mascectomy last year so knows how long things take etc and can talk quite openly to him.But at home you would think it was him going into hospital,he seems to be suffering with tiredness and seems to dissappear and want to be alone all the time.That’s fine but the kids are then left to me-grrrr!
It was my son’s 13th birthday in the week and the weekend before he had friends for a sleepover-2.30 asleep and 6.30 x box!!! But do you know what-all I could think was at least I’m ok to enjoy it all!!! Of course I didn’t let them know that-to them I was grouchy mother of the year!!!
Well Mother’s day this week-yeah. I’m expecting a lie in and a cuppa in bed-what do think?? I can probably guarantee it won’t happen,but at the moment I’m just thankful for “normality”
speak soon Jennie x
Hey lovely!
Wicked - really glad to hear that your Op date has been finalised. And of course I’ll tell you how it was - warts and all if you really want!
CT Scan was clear - oh yeah(!) so the relief is palpable - almost as though the BC is now a minor condition in comparison! Have to see the Surgeon again on Wed evening - he still hasn’t 100% agreed to carry out lift on left side and I think he may try to talk me out of it - bring it on!
Really good luck for 17th.
xx
Hi All
Good luck to those who have got the results for their op, got my date on Friday & its a great relief. For the past couple of days since getting the diagnosis I have felt very positive, but woke today not feeling that way at all. Hope this is only a temporary ‘glich’. Out for lunch tomorrow for Mothers day with all the Family, dont want to be miserable one with a bag over her head sitting on my own !! Determined to get back into positive mode! Guess these high & lows are all normal [whatever normal is].Have a fantastic day tomorrow.
Lynn xx
happy mothers day!!!
really pleased CT was clear Shelley-it must be such a relief.I might ask my BC about a CT as I think we all wonder at the back of our minds if it has spread. Yes I do want warts and all-but then again once through it you’ll probably have parts you want to forget!
Lynn,you haven’t said when your date is-but I agree once you know when you can plan ahead.As for good and bad days,I know what you mean.I’ve said before everyone else seems to take the lead from you so it’s so hard to show how you really feel.I asked my son (13) how he is today and he said that it depends how I am that day- no pressure! But don’t you find it exhausting? When I have good days I tend to attack everything at once and then fall into a heap at the end of the day.Mostly because I know the next day could be different-on reflection though I’ve never been any different just put it down to hormones in the past!!!
speak soon xxx Jen x
just wanted to say good luck to Shelley for tomorrow.Thinking of you-just remember you don’t have your brave face on all the time. And don’t forget to let me know how you are afterwards-I’ve got 11 days and counting!!!
xx Jen xx
Hi All,
Am back after Masectomy & Recon to right, Mastopexy (Boob lift) to left - a girl has got to get something out if it for herself?!
Feeling on top of things - Nodes were clear (get in!) and having the Staples out was THE worst thing!
Hey Jennie - how’s your journey going?
Hello Reg - nice to hear from you!!! Lovely to find another Swindon Diagnosis. If you want details, you need to send me a private message and I’ll give you all the details! Hpw is your journey going??
Back at work (reduced hours) and driving again - liberty - hurrah!!
Am sore, but right boob looks magnificent (even without a nipple) - work of art!! And my scars are totally symetrical on both boobs so they are a perfect matching pair (with the exception of the nipple!). My Consultant is a God!!!
Start Chemo in about 3 weeks, due to Grade 3 IDC, age and 2 x Tumours totalling about 6 cmplus clearance. Not sure if I am having Rads yet - Consultant not made up his mind yet. Can’t have Hormone Therapy, not got results back about Herceptin yet and anything more than that is outside my spectrum at the moment!!
Laters.x