Diagnosed yesterday [invasive lobular breast cancer]

[Matty2]

Sarah you sound so much more up beat this afternoon - beauty session and freebies sounds wonderful

Well done you.

I now have to see one of the BCN who will go though in detail about the op and sort out consents. No date but should be roundabout 2 weeks time

Did I see you have a date Sarah?

Best wishes

incidentally Matty was an ex cat's name, my name is Beryl 

[JETS]

Matty !!!!! Yeeehaahhaaaaa jumps on horse and races round !!! Great I'm smiling massively for u xxxx you've got this nailed now !!! V v happy for you it's great to get a bit of good news... Xxx
Sandie - thanks so much for this - had my pre op today and asked about drain but got quite an uncommital " they will go through that with you ..." So it's v helpful to have some info on managing it ( if needed) - I had to go for a chest X-ray today and wasn't actually expecting that .-.. I should have learnt by now that each time I go to the hospital I should exoect the unexpected !!!

I found the big c on the hospital grounds today - went in and they were lovely - ( let me cry -again!!! - honestly I'm a fountain sometimes!) - booked in for a free beauty session dsy x so that's two bits of good news today despite cancer ! Matty and a free beauty sess with lots of products x smiling again and off to the chippy as have to take son back to uni tomorrow and the blueberries can wait !! Love to all sarah

[deedee540]

What an excellent result for you. No wonder you are smiling. It makes a change to hear some good news.xxx

[13gerbera]

That's FANTASTIC news Matty, delighted for you!

x

Sharon

[Matty2]

Where are my manners - thanks all for your thoughts today
As ever thinking of you - especially Jets today

[Matty2]

First time I have left hospital smiling

Cancer has not spread to lymph nodes, means I will not need chemo, probably not need radiotherapy as both patches have been grade 2.

Radiotherapy depends on tissue samples after op

Also consultant says I am suitable for implant at same time as mastectomy. He said it will give me a pert breast - 

Can't believe I'm smiling but still have cancer

Matty B

[Alison_46]

Hi,
Not sure if this helps but I'm under an Essex hospital, had single mastectomy and only had the drain in overnight. I went home the next day drain free!! I had previously had node biopsy so there was no surgery to my nodes.
Xx

[Matty2]

That was useful, Sandie. \i have been wondering what drains are and what to do.. Thanks

MattyB

[keepmumsane]

Hi, , drains are the wee tubes they leave in you so your body doesnt swell up or spring a leak I guess.  

My friend who had a lumpectomy didnt have drains,  her doctor bandaged her up.

As I had a masectomy they stitch you up. Then for me they put a couple of tubes in the lowest part of where my breast was. They stitch them in (bizarre) and wrap them with water proof tape so you are sealed.  I had a double drain with a Y junction. This tube then goes to a flat round plastic container, about saucer size. Its got a spring so they compress it, this creates a vacumm and put in the tube ... the container holds any fluid from the wound. The container fills up it keeps the fluid moving with its small vacum effect.

 The fluid can be blood and that goldie plasma that helps your body heal. They left mine in until it got down to 30ml a day . It started at 120ml.

I had a district nurse come and empty mine and check on me, but I know some ladies are taught to empty the drains and measure the fluid themselves. It isnt hard and other than accidently looping the tube over the door knobs on our bathroom vanity everytime I washed my hands, , was no trouble. 

I had mine for about 9 days, average is about 14. 

Getting them removed was a horrible thought but completely pain less. I had a nice fancy sticky plaster on it for a couple of days.

Honestly,  no trouble at all. I was given a wee shoulder bag to carry mine around in, they are quite discreet, but my container had a wee clip for hanging it off my jammies if I needed.  I was allowed to shower with it too. As I wasnt up to rolling around much in bed, I just clipped mine to the bottom of my fitted sheet..you just need to remember you're attached if you suddenly need a wee at 2am.

Hope thats helpful and not disturbing.  

Xxx 

Sandie

[JETS]

It's so comforting to hear that others have coped well with the surgery - I confess to starting to get a bit nervous today as I am sitting in hospital waiting for pre op assessment this morning - the idea of drains worries me - could someone explain in a bit more detail what is involved? Are they uncomfortable? Hard to use etc ?

[keepmumsane]

Oops just realised I was posting to something pages back... xx Anyway lovelies, the surgery is much better than you expect. Im very tired a couple of weeks later but not desperately uncomfortable , was sent home with voltaren and panadol. The arm stretches are horrid but do help . Even drains are simple. I was completely freaked out the night before surgery but the staff are so kind it makes it easy. My head theatre nurse walked me along the corridor and into the theatre. That was a bit 'green mile' , but I managed not to run out Screaming, and woke up in recovery a couple of hours later. The other thing that concerned me was if I would feel like frankenstien... but as my kiddlets pointed out I have a chest not a breast.. its ok too. Same children just pointed out if I expect the worst for chemo, then it probably wont be nearly as bad as I thought. #snort practical advice from 10 year olds. Clearly I was calmer than I felt explaining the whole process to them. Amazing how much we've all learned in such a short space of time, reckon we'd all get As Xxhugs ladies 2015 going to be ridiculously interesting Sandie

[keepmumsane]

I had a single mastectomy and sentinel nodes removal. I came up as grade3 her2+ but nodes are clear. My lump was 5cm which apparently even my dds couldnt lose and still look normal. My surgeon said the cosmetic effect is important becausevof how you will feel later. Surgery was ok , much better than expected. I also need chemo as well. Not sure that helps cazz29 .. xxx Sandie

[13gerbera]

Hi Matty, just wanted to wish you well for tomorrow, will be thinking of you

x

Sharon

[Alison_46]

Happy New Year ladies, hope you are all continuing to stay positive. Wishing you all well as appointments now start again, I'm waiting for the results following mastectomy on 10th Dec 😬
I would like to reassure any of you awaiting a mastectomy that it was no where near as bad as I had thought. I was very concerned about the psychological effects that I might experience, but was actually much easier to accept.
Good luck to all with appointments, resuts, treatments etc. take care and hugs to all xx

[JETS]

Hi deedee - all the decisions are so hard aren't they? I'm having masectomy first then they will decide if I need chemo - I've decided to delay reconstruction but only because I couldn't cope with trying to work out whether to have diep / implant / see plastic surgeon / have additional op on lymph node / impacting radiology treatment etc all of which would delay getting rid of my lobular which is growing scarily xx. I'm having a double masectomy - they found more possible cancer in the left they had agreed it was prob ok but then second opinion in multi group disagreed so I was called back and it affected me so badly - I literally fell apart x long story is I feel a lot more positive now that with doublethe risk of return is more limited - I think it will also potentially make it easier to match up bras and recon eventually x not an easy decision for you - the process is so hard x x x good luck with the chemo x sarah

[deedee540]

Hi Marty.Just wanted to wish you luck for tomorrow . Once you have your plan you will feel much better. I am having 6 chemo first to shrink it then a mastectomy but need to decide if I want expander at the same time or should I just leave it and get a prosthesis. Can t decide yet. Also this thinking of requesting a double mastectomy as terrified it will come back. Any way Will be thinking of you.x

[deedee540]

Thanks Seabreeze I have been using the cold cap. Had 2 sessions of chemo and have lost quite a bit off the top but not noticeable to anyone else yet so wig can stay in box for a bit longer _ hopefully forever but it's there if I need it.x

[JETS]

Hi matty - I'm in a couple of threads also know the feeling x. It's a strange start to the new year for so many of us waiting for more results and surgery etc x hope it's good news tomorrow for u - I wilk also be at the hospital for my pre-op appointment ; have been feeling a bit better as sleeping again a few nights now - had a bit of a wobbly late this afternoon as reality hits every so often x but having an early night - will deal with tomorrow taking my son back to uni on Saturday then pack hosp bag etc and "get on with it" - I know what u mean about the steps though ... It's a tough climb sometimes x will be sending lots of positive thoughts your way for good news tomorrow x sarah x

[Matty2]

Sorry forgot to wish you all a successful New year

[Matty2]

Well tomorrow I find out full treatment plan.

Results of Lymph Node biopsy and whether it's radiotherapy, just a mastectomy or the whole lot.

Feeling hopeful.

But as I've said before sometimes it is hard when the step keeps being made higher.

Am I the only one of our 'group' that finds it hard to know which thread to post on so end up saying same thing several times??

[JETS]

Happy new year to my lobular friends xxxx here's to Health and happiness in 2015 xx

[Matty2]

Thanks suzi

[SuziD]

Hi.

I was diagnosed with ILBC in October 2009, had lumpectomy but luckily no spread so rads and tamixofen for me. I am now about to come off tamoxifen so for what it's worth it does get easier. You do have days when you don't think about it and with time they get more and more.

Not helpful to the post subject but hope its good to know it does get easier 🙂

[JETS]

Laughed out loud pianist x swinging from chadeliers this time next year ....

[Seabreeze]

Hi Deedee,
Just saw your post...I met someone at a bc event who is a fair way through chemo and tried the cold cap. She still has a lot of hair, she thinks its thin on top but you wouldn't really notice. Just thought I 'd mention it in case you were thinking of trying it. She alternates between looks real wig and her own hair.
Seabreeze

[ThePianist]

Keep smiling. You are not alone and many people know what you're going through. This time next year Rodders.......

[JETS]

Yes - smiling xxx thx matty - I went off to the cinema by myself in the end ! Three hours of Orc killing in the hobbit but took my mind off tomorrow !! - laughed at the idea of piling high the presents - esp as I have twin girls - it would b mayhem x

[Matty2]

Another suggestion - pile all pressies(unwrapped) up in room and tell them to sort it who's i who. Sress no arguments or swapping

Treasure Hunt!!!

Smiling yet

I know that would have created a great deal of hilarity with my lot, for that matter still would!!!

[Matty2]

Sarah

Big hugs and positive thoughts coming your way.

I have no idea about an MRI biopsy but can only assume it's because it's the only way to see what they want to investigate.

Here at Matty house we are keeping Christmas very low key as well - Just keep looking forward to spring when hopefully treatments will either be over or nearly finished.

I am sure that your family will make it a cheerful day - as for wrapping stuff etc - stick one of those ribbons on everything

Positive my girl - did think at one time if it was double mastectomy it would be a level playing field - so to speak.

Non probs with getting a bra to look even either

All the best, keep smiling, remember it's been found, they are being careful, you will get through it

I have been planning my stages - get through Christmas, see new baby, get bone density etc

Every step is a step closer to being clear of the Beast

[JETS]

Thx Alison - I was coping with 'one' but now it looks like 2 .... I suppose at least I won't have to be lopsided ... Fighting spirit finding its way back - just another shock today

[Alison_46]

Hi Sarah
Sorry that you've had a bad day, just when you think your travelling one path you reach a crossroads with no clear sign postings!! I can't help on MRI biopsy, I can though confirm that post op mastectomy is really not that bad. I will be 2 weeks post op tomorrow and haven't had any real pain just been uncomfortable at times with a little swelling. If you have no node involvement you won't have too much trouble with your arm, just make sure you do the exercises they tell you to do! Don't get too upset about Xmas, there will be better ones to come and one day you will look back on this one and say 'remember he year I was diagnosed?'. That's what I'm hoping anyway! 😕
Take care and sending a big hug to you xxx

[JETS]

Despair city today - had a good day at work and was looking forward to tomorrow as I have a few hours to myself to "sort" Christmas - wrap presents/cry/reframe as fun mum- but hospital rang me at about three to say they had had a second opinion on my left breast and wanted to see me again tomorrow # sigh - lots and lots of tears - had to leave work. Apparently the multi group reviewed all the information and are convinced about the decision. To do mastectomy on right but think they might need more tests to ensure correct decision are made for left - this will involve a referal to specialist at Addenbrookes to do an MRI biopsy ..... I thought all the decisions were over - I've come home to a pre-op appointment letter for original op on 12th - I am trying so hard to be positive but feel like I get bad news at every turn and now I won't even get the Christmas Eve I had so desperately needed to try to lift the mood in the house ....my next decision is going to be double mastectomy - absolutely terrified of post op recovery - it was going to bad enough with one bad arm now two I don't know how I am going to function.... Sorry to be full of despair - I see so many positive ladies on this site and out ans about I am smiling and laughing but feel safe here to say what I am really feeling and right now I am in a very dark place, has anyone had an MRI biopsy ? What is involved - anyone having the double?
Sarah

[Matty2]

Just had phone call - next appointment where i'll get results of Lymph nodes and treatment plan is on January 2nd.

Have to decide - if Lymph nodes are clear - if I want an implant or not by then. Been humming and haing about it for a couple of weeks.

Strange isn't it seems like forever but in fact is a very short space of time,

matty

[JETS]

Hi cazz - if you have several lumps it becomes difficult to op without masectomy as they may have to remove too much of you Breast anyway - they take away surrounding flesh also around lump - I had a long conversation with a very experienced ultrasound consultant abput this when we discovered many more post mri so I'm also in for masectomy xxx it's natural to worry - you are doing great x sarah

[Cazz29]

Has anyone had mastectomy & node removal when there has been no evidence so far that it has reached lymph area? I have 2 lobular areas in left breast & nothing on ultrasound or mri to suggest spread but having boob off on surgeon's advice as lumpectomy will leave very uneven breast. Just beginning to wonder if it has spread & haven't been told, so although I am doing well most of the time, evenings & night time I can struggle a little trying to stay positive & my mind runs riot. Just dreading being told it's spread & I go from a minor op on 1 lump to a major op & possible chemo. Sorry, just want to wake up & find this is all a dream 😢
Am on Tamoxifen so at least some treatment is happening before my op on 7th Jan.

[Matty2]

I am had biopsy first as hoping for an implant whch is best if no radiotherapy. 

No date but will see surgeon in New Year - as he explained I hit the staff holidays (sigh)Should be soon afterwards

I am already on the hormones though- Anastrozole

Am Ok about it - so far all my choice - except havig the Beast Cancer of course!

I have said before each thing is another step forward

[Cazz29]

Hi Matty2
Hope you feel better soon. At least im having all done at once! My sil is a nurse & she says often routine not to have biopsy on nodes when having masectomy, depends on surgeon too. Have you a date for your op yet?oh & congratulations on your new grandchild too!

[Matty2]

Hi there

Have just had Lymph nodes (sentinel) removed (Tuesday) prior to mastectomy. Caz29 like you I have a couple of small patches so it's boob off.

Feel a bit rough today. My throat is very sore and painful, has been since the anaesthetic.

Phoned doctors (Little voice) they said phone hospital. phoned hospital, they said phone doctor, phoned doctor (receptionist) who said is it urgent. Obviously the fact I have had an operation and feel unwell does not count as urgent. Eventually have an appointment late afternoon with the emergency doctor grrrrrrr!!!!!!

Sorry needed to rant.

Hospital thought it was the tube they put down throat maybe caused infection

Thaks Katherine 62 for your suggestions in your post

Oh and I became a granny yeserday - 6 weeks early but He is doing very well

All happening here this week!!!!!!

[Cazz29]

Hi Sarah, like you the thought of chemo is worse than the op &, I too, cannot afford not to work. Another worry is why all the lymph nodes are being removed although ultrasound & MRI etc show it hasn't reached them yet. My Consultant said biopsy on them is not suitable while having a mastectomy whereas others seem to have had biopsy during mastectomy?! Still, at least I won't face another op afterwards if they had have tesited positive I suppose.
Had a bad time sleeping last night but I just have to focus on the fact that I am not having a mastectomy because the cancer is large or advanced but because i have 2-3 very small areas of early malignancy that if removed separately would leave me with my left breast very misshapen.
Good luck Sarah, & everyone else for your treatments & recovery.
Would love to hear experiences of anyone who had mastectomy for the same reason (multiple small early diagnosed growths). X

[JETS]

Hi cazz - I'm in for masectomy of right Breast on 12th jan - hormone positive also but not started on any of that yet - the whole "no boob" identity is a bit of a shock so know exactly how u feel - I've been told that because I have said now I'm delaying reconstruction they will test lymph nodes after (during ?) masectomy - this is another test to help them decide the best kind of post op treatment - guess we then know about chemo etc - on one of my low eb days I did look at the post op treatment boards and there are plenty who seem to work through chemo etc - I can't afford not to work so am holding out that if I do know chemo (scares me more than the op) I might still be able to work ... But the best advice I have had was from my BCN who when I dxplsined my persona circumstances etc said " be kind to yourself - don't exoect too much and look after yourself" - be kind to yourself has become a bit of a motto for me - hopefully others can give you real advice - I just wanted to say you are not alone and I share your concerns x hugs and best wishes - sarah

[Cazz29]

Further to my last post, my latest biopsy has come back positive too so I have two areas, 5mm & 7mm, together with a smaller area that they cannot reach so all 3 areas need to be removed & as conserving surgery is no longer an option due to them being in different parts of my breast, it's a mastectomy on 7th January for me. My surgeon says that centinel node biopsy isn't suitable when a mastectomy is needed so will remove those too (although info i have read says they can be biopsied?). The news is still sinking in but Im looking on it as once the breast is gone, that's it! Would rather it went than have it come back in later years as has happened to two of my friends. does everyone having a mastectomy have Chemo, this is the bit I dread if I have to have it? Will def need tablets for 5 years & already on Tamoxifen. Anyone have any positive stories about continuing to work while undergoing treatment please?

[Lucy_BCC]

Hi Kmaryj and welcome to the BCC forums

In addition to the support you have found here our helpliners are on hand with practical and emotional support for you weekdays 9-5 and Sat 10-2 on 0808 800 6000

Here's a link to the treatments area of the site, here you will find further support ideas from BCC and lots of information which I hope you will find helpful:

https://www.breastcancercare.org.uk/treatment

Take care
Lucy BCC

[deedee540]

Hi Kmaryj

Hope you eventually got some sleep and no bad side effects. I feel so lucky not to have had any at all and have kept working up to now. Fingers crossed same happens on New Year s Eve when i have my second dose of chemo. Are you on three weekly cycles too ? I am having 3 FEC then another MRI to check it is shrinking and then another 3 cycles,then mastectomy,radiotherapy and hormone treatment for 5 years- God willing.

We will travel this road together following the many who have travelled it before us. Love and hugs to all.

Alison- hope you are still doing well after your op xx

Dee xx

[Kmaryj]

Hi deedee, I'm around 5 days behind you, diagnosed on 20th Nov.. (Or possibly a year as the year's not showing against the date) Had first chemo today, which is probably why I'm awake at this unearthly hour, as I've gone for chemo then surgery..

[keepmumsane]

Exactly, we're women and we Run our lives and those around us. Its horrid to not be in control and to have do much unknown. 

Exhausting to be under this stress even if you're rational about it.

Xxx be kind to yourself,  its a big load. 

[JETS]

thankyou all again - I have been up and down all day - it's not like me and I'm so angry today - not an anger kind of person so think that's taking it out of me - everyone on this forum says it gets better when the practical stuff happens x hoping I'll feel better after Thursday x - decided about an hour ago that I would buy a lot of ready meals ( I'm a fresh kind of mum so the children will prob love it! ) and you've all confirmed it - I guess I'm just use to being the glue and in control and I'm going to have to learn to accept help - never imagined this would be so hard xxx again - thank you thank you thank you x

[keepmumsane]

Hey sarah, you're not a downer. Its terrifying,  the whole thing. 

I have family at home,  but man doesnt eat much so making do during the dsy. I think if you have food thats simple to heat, dont be wonder woman,  you'll be ok. Its so much better and easier than I thought it would be.

Lots of napping and started my stretches when they said. The stretches help lots. 

Pain is totally manageable,  I have voltaren and panadol. 

I was terrified before the op, but now its done...shrug. 😉

Xxxx you will be amazed at how much stress drops away just moving forward

Hugs to you all

Sandie

[Katherine62]

Hi all

Just to reassure anyone worried about a similar op... i had WLE and ANC middle of Novemeber, I stayed in hospital for three days (because they let me, and I didn't fancy going home with the drain) but when they finally kicked me out I went home and was fine.

my tips for ANC and WLE post op

EMU oil, for twice daily massage all over hand and arm, avoiding anywhere near scars

do the excercises as soon a you can, but very VERY gently to start. Little and Often is best.

do NOT stretch your arm out straight above your head for a week. Keep everything slow and gentle, you want to gently stretch but never over-stretch.

when you're lying down,supported by pillows (try and get a big V support cushion, really comfy) try and have your hand, with bent arm, just above your head, to help the flow of lymph for ten or fifteen minutes at a time throughout the day, closing and opening your fist.

drink loads and loads and loads of water. I also took lots of aloe vera juice (yeuch but you can mix it with fruit juice) as it really helps that internal healing.

after drain out and you can move on, just keep stretching and flexing as often as you can. I now sit watching telly with my arm up straight up in the air clasping and unclasping my hand and flexing from side to side. It might look a bit odd but it works.......  you want to feel a gentle stretch but it should never hurt, think slow soft and flexible.

don't lift anything very heavy with that arm. Ever. Not once. Or pull heavy things. Never never.

That's all really.

I have complete movement back now,  a bit of stiffness that goes with excercise. Numb armpit still, which doesn't worry me a bit, pins and needles sensations as the nerves grow back.

Honestly it's fine. All op. sites healed really well, so it's my arm movement and lymphedema prevention I'm all about at the moment, at least until the chemo starts in January, oh joy

jane x

[Alison_46]

Hi Sarah, hope you are feeling a bit better today 😀
Am finding small trips out of the house are helping me, today I'm off to the cinema at lunch time (cheap Tuesday!!)
Can anyone offer advice about getting back driving, think my teenage daughter is desperate for her Taxi Driver to be back & operating. Advice from hospital was between 1-2 weeks and insurance company say as long as I have medical advice they don't mind when. Bit confused and wondered what others had been told.
Xx

[JETS]

Thank you so much Alison x so grateful xxx