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what should i do now???

33 REPLIES 33
CaroleD
Member

Re: what should i do now???

Hi Jane

Glad it went well for the op. I came home on Christmas Eve, and I'm having a nap late afternoon each day so far (slept till 11am yesterday which was somewhat strange, but obviously I must have needed it). Just take it easy and let everybody else do the running around. We all recover differently so take it at your own pace. Hope you had a lovely Christmas and are looking forward to the New Year.

Carole

dotchas
Member

Re: what should i do now???

Glad its all over for you.The anaesthetic drugs will take a while to get out your system also your body is busy healing itself,so take it easy.
Have a lovely Christmas,
Love
Dot
xx

jjane123
Member

Re: what should i do now???

hi everyone,
Well I woke up from op no probs and yes you were rite dot i will be reassuring everyone about it in the future. I must admit i was a nervouse wreck fri morning but everyone at the hospital was wonderful and managed to calm me down before theatre. I think 4 ndes removed but will have to wait sometime for results because of christmas. Hardley any soreness, just weired feeling in upper arm.
Sorrry its taken me a while to let you all know how i went on. Only came home mon, due to having to wait for drains to be removed and i am still feeling very sleepy infact cant stay awake much more than an hr or so, is that normal after op? Feel like am on drugs lol
Hope you all have a peaceful and happy christmas with your famillys and friends
Take care
Jane xxx

dotchas
Member

Re: what should i do now???

Jane,
You CAN do it,and you will get through.
We are all waiting to hear from you once its over,
Take care,
Love
Dot
xx

jjane123
Member

Re: what should i do now???

A big hello to everyone

Thankyou all ever so much for your messages of encouragement re my op. They have taken the edge off my fear slightly but made me feel so much warmth inside, knowing you all have your own worries, yet can take the time to ease mine.

Lilly, i know where your friend was coming from because bc nurse, who i met with today, asked (what if i say dont have the op) And o.m.g that is a far bigger worry than having it. So i suppose i'll just have to count back and think of the beach.

Dotchas, i hope your right about me coming on here after and reasuring others. I'm sure you are, just trying to convince myself but do feel better after meeting bc nurse and reading all these messages.

I have been to hosp for pre op today and apparantly the op is Fri. Got to go Thurs, so they can do prep for sentinal node. Was under the impresion that only one node to be removed but upto 5 to be taken out. I wont know untill dye has been inserted.

Not sure if i will post again now before op, as concentration not very good at moment. Head all over the place. In one way, its good that the op is so soon after dx because i think i will be a lot more cheerful when thats out the way. Or at least its one less thing to worry about.

Thanks again, all of you for your support. Hopefully i'll catch up with you next week. In the meantime as di says. We can do this....Can't we?

Love to everyone xx

dotchas
Member

Re: what should i do now???

Hi jane!

I hope your are coping OK with the run up to your surgery.At least if you get it on Thursday you will get out a day earlier!
I found the waiting on surgery weird because I wanted it to come, on one hand and didn't on another.
Just think soon you will be on here reassuring others that its really OK,

Hugs
Dot
x

horace
Member

Re: what should i do now???

Dont worry about the surgery it is just a bit sore once the meds wear off but not really bothersome at all.Re hair loss most people fell a sharp prickly sensation over the scalp for a few days about 2 weeks after chemo.Then you notice more hair in brush or when you shower then with me it went all at once when I was in the shower.I had avoided washing it for a few days as I suspected it would go and my little granddaughter was staying.As soon as she'd gone I went to wash it and it ALL came away in one go!I was a bit weepy then I thought,'well at least I know the chemo got as far as my hair roots!'Daft or what?Dont worry once the merry-go-round starts you will cope,honestly.
Love Valxx

salopets
Member

Re: what should i do now???

Diagnosed with invasive lobular cancer last Friday, 12 Dec. What a shock! Had my first routine mammogram on 5 Nov and got called for second stage screening. I knew I had "cysty" breasts and thought that would be it, but they did a biopsy, which scared me. Now I'm told I have to have an MRI to see if it is multicentric. That's the worst thing - don't know if I need a lumpectomy and removal of a few lymph glands or mastectomy, so I have nothing to focus on. Thoughts keep running wild in all the wrong directions. Clinic fantastic though - it's great to see the NHS working as it should do.

Great to hear all you girls being normal, it sorts out a few of the demons!
Sal

notyetinthebox
Member

Re: what should i do now???

Good luck Jane and Di. You'll both be fine, really, onest Injuns! As soon as you get into your hospital bed and things start rolling, you won't believe how relieved you'll feel. The surgery really is a piece of cake, nothing to worry about at all. I found - like you - that the emotional bit kept creeping up on me when I least expected it, and was just a bloody nuisance. People sympathising and being kind was what I couldn't - and still can't - stand, ungrateful bitch that I am! But having to be Charlie Caroli in front of everyone (as I normally am) does wear you down and solitude then brings on buckets of tears. I find that the littlest things set me off. But hey, what a great excuse to get out of writing all those poxy Christmas cards! Good luck again, much love, Jackie. xxx

maltomlin
Member

Re: what should i do now???

Hi there

I was exactly where you are now in May. Now I've had surgery, 4 treatments of epi + 4 xeloda and am now looking forward to rads in January + 5 years hormone threrapy.

I can only say that it does get better. Once you know what treatment plan you're getting, you think 'bring it on'. 'Just want my normal life back'. But normal is a different place after being diagnosed. Some people, like me, have carried on working, some people find it helps them to stay at home. Everyone's different. But you will be ok. And you adapt to the new 'normal'.

I had a lumpectomy and node clearance, and it was fine. No pain afterwards and full movement of my arm within a few days. The 'hair thing' didn't really bother me. It started coming out about 10/14 days after my frist epi and I shaved my head. My hair is starting to grow now but I'm really happy in my wig.

We find our own way of dealing with these things and it surprises me how resiliant we are.

Chemo, whilst it wasn't a 'walk in the park'. is not half as bad as your imagination would tell you. So. as Lily has said, 'if I can do it, so can you'.

Good luck

Mal

Lily200
Member

Re: what should i do now???

Hi,
your stories are so moving and unfortunately all to familiar to ladies on here. I was very anxious about the surgery, which was on April Fools Day so everybody laughed when I told them!!! A friend who had already had a primary and was getting over surgery for secondaries, said but think when the operation is over, you won't have cancer, it will be out. I know it is not always as simple as that but it did help me find something good about the surgery. I am just quoting her in the hope that this might help you a little. By the way surgery was much better than I thought it would be, I had a lumpectomy. I have also had 7 months chemo and I am on rads. If I can do it, anyone can, promise.
Lots and lots of luck to everyone who posted on here and will be thinking of you
Lily x

Dizzydi
Member

Re: what should i do now???

Hi Jane

We can do this. We will do this. Other women on this site will help but we will get through it.

I am at a dubious advantage...I had a hysterectomy 18 months ago so I have had major surgery and recovery...and amazing support from other women going through the same (and who have gone thorugh the same).

I get my second biopsy result on Thursday. I will think of you.

Hugs...and keep posting

Di x x

jjane123
Member

Re: what should i do now???

Hi Di
so sorry for your dx same time as me last week. I too, had to have two biopsy but was told nothing after the first. My doc just said he still wasn't happy with lump and i needed further biopsy under ultrasound. I asked him if this meant it was good news and he more or less implied it was. Thank god i said and still no hint from him.

I then received a letter that had been sent to my gp, stating that first biopsy was benign, so you can imagine my reliefe. We were celebrating all over the house. So when i went last week for results of 2nd biop i wasn't a bit worried just thought it was my hormones because periods up the wall for 6mths now. (smear ok). I nearly fainted when i was taken into a side room with arm chairs and complementory teapot. I knew then before doc said anything. Like yourself Di i feel totally uniformed. No idea what type bc I have and only know 3cm because of the letter that was sent to my gp.

Just spoke to hosp, being admitted thurs morning but was told by my surgeon op was on fri. Now hosp say might be thurs pm CRAP. I will let you all know how i go on after pre op tomorrow.

Take care of yourself everyone

jane xx

Dizzydi
Member

Re: what should i do now???

Hi Jane

I was diagnosed last week too. I still need a further biopsy before they decide whether I am having a lumpectomy or a mastectomy. And yes I agree with you it is a whole new language to learn!

Nothing else to add...feel very uninformed at the moment, but this site is proving to be a lifeline!

Di x x

lizziecee
Member

Re: what should i do now???

Helen, you may care to ask the Oncology nurse if you can have the "cold cap" along with the chemo. I had FEC x 6, and the nurse said the cold cap is not suitable for all chemo treatments, but it can't hurt to ask. She also said it only worked in about 10% of cases, but I was more terrified of losing my hair than having the treatment. Luckily for me, it worked - my hair went very thin on top, and stopped growing, but I never needed to wear the wig - which I got free with an NHS voucher up to £120 although I am not on any benefits. It does prolong the treatment time, as you need to wear the cap (like a motor cycle helmet which is attached to a small freezer unit beside the chemo chair) for a half hour before chemo starts, and an hour afterwards. I am retired so the extra time didn't matter, but may well do for you with very small children and a job. When my hair did start growing, I had tight curls like Kylie Minogue - brilliant, just had to wash it, put my fingers through it and go - didn't even need the hairdrier or hotbrush.

Best of luck with the chemo - make sure you take the anti-nausea meds as directed, even if you don't feel sick. It is too late if you start throwing up.

Take care,
Liz.

ForumMember
Member

Re: what should i do now???

Hi Helen

I have added the link to a Breast Cancer Care publication called 'Breast cancer and hair loss' which you may find helpful to read:

http://www.breastcancercare.org.uk/docs/hairloss_2004_v2_0.pdf

The booklet also contains information about our free 'HeadStrong' workshops which explore the many issues faced by people experiencing hair loss which may be available in an area near you, for more details and further support please contact our confidential helpline on 0808 800 6000, Monday to Friday 9am-5pm and Saturday 9am-2pm.

Best wishes
Lucy

HelenL
Member

Re: what should i do now???

Hi All
Im recently dx with grade 3 ER,PR,HER2 +, had WLE on 13th November and just had treatment results. Got to have 6 months chemo ( 3x epirubicin 3 x CMF) then 5 weeks radio then a year Herceptin! I'm absolutly terrified. I have a 1 year old baby and 5 year old so thankfully the dr said it wld be ok to put the treatment off till new years eve so i cld at least make the most of xmas and son's bday. Im 38 and feel like ive been given a death sentence. Havn't managed to get through a day yet without crying and when i look through the comments from the ladies on this sight i long to found the strength and courage to fight this horrible disease. I know this might sound trivial to some people but i am terrified at the thought of loosing my hair. Please if anyone has or is going through the same treatment plan as myself, could you advice me on how it went. Will i wake up one morning in 2 wks time and find my whole head of hair on the pillow? Going to the hospital on Tue to see the "wig woman", on my goodness never did i dream that i wld have to attend such an appointment. Would be gratefull if anyone cld advice me on what to expect after my 1st chemo as i have 2 little ones to look after and i also need to work - will this be possible? Carn't believe how scared i feel at the thought of not seeing my babies grow up. Sorry to sound so negative to you all but im tired of putting on a happy face all the time to the close people around me.

Love Helen x

jjane123
Member

Re: what should i do now???

hi sue thanks for your comments, i hope my op goes smoothley as yours and i wake up feeling like i am at home. well i just hope i wake up lol Just pondered your addvice and your rite. One day at a time get on with op then worry about the rads and chemo after. So came to conciouse desission that from now on thats what i am going to do. Well try to do lol. Still not made mind up over wli or mx. Will decide after chat with bc nurse on tue, ask about chance of bc retuning same breast

SueCheshire
Member

Re: what should i do now???

Hi Jane
Good luck for your op on the 19th. I had a mastectomy Jan 06 (I wasnt given a choice) but I just wanted to tell you that the op went well, I remember waking up with my eyes closed (I thought I was at home)and thought it will all be over later today. I opened my eyes and saw a nurse sat besides me -it was all done! I had no pain at all but was sick later in the day and they gave me anti-sickness. They kept offering me pain killers but I there wasnt any pain.

My advice is just take it one step at a time and cry when you want to. I cried the first weekend (whenever I wanted to) then the next week I had a 10min cry every day, if I missed my cry I fell worse the next day. After the op I cried much less but everyone is different.

Much love

Sue

jjane123
Member

Re: what should i do now???

hi kittyw. so sorry your here with everyone else. how did your op go? were you under for long? i understand how scared you are. i am terrified.... for the op... for the treatment..... most of all for the future.
i know am probably being parranoid but i keep imagioning this god damb horrible thing is everywhere inside me. am trying to be possative and just been listening to youll never walk alone, u know the line, at the end of a storm theres a golden sky and it made me feel quite strong but then again i have been feeling beter as the day goes on, its when i wake in the morning (yes i have been sleeping the whiskeys great lol) it hits me all over again. the messages of support on here are fantastic. as you say its like the wonderful women on here are the only ones who truly understand

take care x

kittyw
Member

Re: what should i do now???

hi also newly diagnosed and terrified. had op on 9th dec[ diagnosis on 19th nov] WLE and removal of lymph glands. comments allready made have really helped me. i know how just how jane feels i tried the christmas shopping tac but kept having to dump shopping and leave store in tears.i am very very good at the brave face for everyone so no one really understands how scared and lonely this is for me.except maybe you lovely people. thanks

Anthi
Member

Re: what should i do now???

Hello Jane

Sorry to hear of your diagnosis but you'll find this site a great help. I was diagnosed just before Christmas two years ago and had my surgery on 20th December 2006 - dreadful time of year to be diagnosed I agree. I had a WLE and was told that a WLE followed by radiotherapy is as effective as a full mastectomy.

I knew nothing about breast cancer when I was diagnosed and learned about it in gradual stages as I went through each stage of surgery and treatment.

Good luck - and definitely take your teddy into hospital.
Anthi x

carrieann
Member

Re: what should i do now???

PS; Lost the hair about week three of Epi (if you are having that) but just bought great wigs, changed colour and style and had a bit of fun.

J

carrieann
Member

Re: what should i do now???

Hi: Just browsing thru this and then started to read. I think everyone has said the same thing – it is all hateful but you can deal with this and get on with your life.

By the way, Grade 4 is the worst – I think with that they just take you outside and shoot you! Joke!!!!! Do know girl who had grade 4, she had the full mast and is now fit and healthy and running three children's nurseries in Leamington Spa. There is life after……..

Like Lily, I just had the WLE on 10 March. Lily and I have travelled this road together having our chemo on the same days but in different parts of the country – she is in Chelmsford and I'm near Rugby. My surgeon said that with my early cancer and small tumour – 2.8cm he was convinced that the WLE and lymph clearance (24 gone, 1 cancerous) it would be successful. If I had wanted to talk about anything else – mastectomy – he would be happy to do so but didn't think it was necessary, I took his word. My lump was also on the top of my boob and I have thin scar which is hardly noticeable. Under the arm ain't so pretty but not many people look under there – mind you at 61 not many people look at my boobs either!!!

I am now waiting to do the rads, I finished the chemo on 25 Nov and celebrated with champers and fireworks with neighbours.

My worst part was between being diagnosed and the op – which had to be delayed as I had a chest infection – caused by stress I think. My stress was so bad that the Americans didn't need to send that probe to Mars, I could have told them what was on the backside as I was up there!!!

When you are up to it, do some research and find out as much as you can about treatment, drugs, etc. It does help when you are talking to the Onc or the BCN (Breast cancer nurse) and can at least understand what is going on. Oh, and don't stop asking questions – if it doesn't make sense, keep asking!!

Hugs to all – you will be fine.

Julia
xxxx

Helenofherts
Member

Re: what should i do now???

As everyone has said, sorry you have had to join us, but this is a great place for support and information. I found lump in August, had lumpectomy and Sentinal node Biopsy in October. They got clear margins around the lump but had a couple of cancerous lymph nodes so had to go back in November for Full Axillary Clearance (the rest of the armpit nodes removed). I was terrified of surgery, never had any before, I'm 53. For the 2nd op I asked for a "pre-med" which helped with the anxiety. I'm now recovering from the 2 ops and waiting to start chemo after Christmas. Then rads, then 5 years hormone treatment.
The worse time was just after diagnosis, I was in a terrible panic, but it does get easier to cope with as you go through your BC journey. Best of luck 🙂

Helen x

leadie
Member

Re: what should i do now???

Hi Jane, A very scary time for you and it's natural to cry and cry if you need to! Don't beat yourself up about it. I was diagnosed 7 weeks ago and am getting over surgery. I find taking each day at a time is my way of coping and pushing away any negative thoughts that are not useful. I am new to the site and it seems great to talk to others.

Lily200
Member

Re: what should i do now???

Hi Jane,
so sorry you have joined us but you will get so much support and information on here as well as new friends walking the same path. Very few of us if any expected to get BC so we know how you feel. I would like to tell you that you can do this. I don't know what your details are, so it is difficult to be specific. I have had the operations, sentinel node biopsy (SNB) and chemotherapy and I am now on radiotherapy. I was overwhelmed by the amount of appointments and things to be done, without the cr.p fact that you have it at all and the dark thoughts that come into your head. My tip would be to just think about the very next thing you have to be done and not to look at everything in one go.
Back to your questions, I could have had a mastectomy or a lumpectomy but surgeon pushed me towards a lumpectomy. I had the op and 15 days of radiotherapy instead of a mastectomy.This involves no needles and is lying on a bed for under 10 minutes in my case. The bonus side of this is that my figure is virtually the same as before, except for the surgery scars. Most surgeons are also plastic surgeons and do an excellent job, worth checking your surgeon is one. They take out the tumour and a bit extra round it, then they move your breast tisuue around to make a good shape. My tumour was right on the top so it would have shown if I had low tops. He made the scar much further down and it looks like a thin pink felt pen line now. Mine was done on April 1st this year and I am amazed how well they did it. I had a slight dent but that filled up over the next few months. So lumpectomy you get to keep your breast, so no need to wear a prothesis (falsy) or have reconstruction surgery, much smaller scar and many people look the same as before (depends on size of tumour ). Downside is that you also have to have some weeks of radiotherapy at the end and if the surgeon does not get it all first go, (so if they find cancer cells on the margins of the piece they remove) you have to have more taken out so another op. The SNB means you have a tiny radioactive injection and they trace the main nodes called sentinel nodes. It is minimal surgery and my scar is just over an inch long. Otherwise they take a much larger section from under your arm and getting mobility back can sometimes be much harder.
Just ask if I can help at all. I am sure others who chose a mastectomy will let you know why they chose it, a lot of people have no choice as they more than one cancer area or it is too large. On a personal note I would still make the same decision as I was devastated at the thought of losing my hair let alone a breast. But that is just me and likewise you must decide what os right for you. We are fortunate to be given the choice, many ladies do not sadly.
Big hugs and it will be ok, you might find others with the same decision to make by doing a search or looking on the surgery part too. Lots and lots of luck
Lily x

dotchas
Member

Re: what should i do now???

Snap ,I am 44 ,and I took my teddy! By the time I left the hospital my end of the ward looked like a branch of Hamleys Toy shops!
I had a mastectomy (July) so was in for nearly a week and all my visitors brought cuddly toys!
The nurses are angels in Breast wards and really kept me sane!
I was originally having a WLE but I had 2 lumps and then another was found (greedy aren't I?) so mastectomy was advised.
3cm is not huge and grade 1 is good (1 is best 3 is worst)
I was prepared for chemo but fortunately didn't need it but just look at it as chucking all you can at this bl**dy disease.I sometimes worry that I should have been given it but I guess theres always a worry with BC.
Its good that people are phoning ,try to chat to some of them yourself .It gets easier.
You are not selfish,I am sure we all resent 2 boobed cancer free women at some point! LOL!
Try not to worry about the surgery as it really is quite routine (not to you I know) and very straightforward.Are you getting out the same day?
Take care,
Dot
xxx

Lynni
Member

Re: what should i do now???

Hi Jane

I know what you mean, I went food shopping after my dx and felt the same it seems surreal and it felt too normal if that makes sense. I did the same with my hair but I remember worrying about how to tie a scarf coz I'd never worn one. Trivial or what. I'm 45, do you have any children.

jjane123
Member

Re: what should i do now???

hi dot... thanks for your message of support because strangley enough everyone seems to be ringing my partner and asking about me rather than asking me myself and i feel like a third party in all of this. i think my tumour is 3cm and type one but have been told it could change to type two when they do the op. your not kidding about the time of year. i went shopping yesyerday to try take my mind of things but just seemed to get angry with everyone one for going about their lives normally and having nothing more than christmas to wrry about. Does that make me selfish? Am having my hair cut tomorrow because they are 99% i will have chemo just after christmas so want to get used to it short. rite going to pack my hospital bag now do you think they will laugh at me if i take my teddy? havent been in hospital before and am quite scared. Am 44 by the way

Lynni
Member

Re: what should i do now???

Hi

It is very scary and Dotchas is right you do learn a new language and I've found out about parts of the body I didn't know I had lol. I had a mastectomy, didn't have the choice but my sister and cousin were given this choice and chose mastectomy as both felt they wanted to"make sure" it was all removed and not return in that breast. Both just felt happier with that choice. It is an individual decision and whats right for one isn't always right for another if you know what I mean. Hopefully some women will post who have had to make this choice who maybe of more help to you. The crying? well I cried buckets, but once I knew my treatment I was able to focus on something and this helped me. I wished I had known about this forum when I was first dx 2 years ago I think it would have really helped me, everyone knows how you are feeling and have been wonderful with their support. Please keep posting and ask away.

Take care

Lynne x

dotchas
Member

Re: what should i do now???

Hi,
Sorry you have had to join us,you will get lots of support on here.
Its a very dark place when you are newly diagnosed and very scary.You will learn a whole new language!
The wide circle thing you refer to will be a wide local excision (WLE) which is basically a lumpectomy.They do however need to take away a "margin" from around the tumour to make sure they have got it all.
The sentinel lymph biopsy is when they use a dye and radioactive stuff to check which gland is the first in line in your lymphatic system so they can check that for cancer.
You will find advice on here re the operation and recovery.
Try not to read too much more though as its scary and not always relative to you.
Have they told you what grade/size it was?
Ask away,any questions,we will help all we can

As for the crying,thats totally normal so don't beat yourself up about it.Try to find things to distract you for short periods,maybe organising a bag for hospital,christmas plans etc.Its a really rubbish time of year to be diagnosed.

Hugs
Dot
x

ForumMember
Member

Re: what should i do now???

Hi Jane

Welcome to the BCC forums. I am sorry to hear of your diagnosis, I am sure you will find support and information here. Whilst you await replies from your fellow users you may find our resource pack helpful, it has been designed for those newly diagnosed. If you would like a copy just follow the link below:

http://www.breastcancercare.org.uk//content.php?page_id=7514

In addition to the support you will recieve here, if you feel it would help to talk to someone in confidence about the concerns and queries you have, then please give the helpline a call, the staff here are all either breast care nurses or people who have personal experience of breast care issues. They can offer you a listening ear, support and information about other services we can offer you to help you through this difficult time. The number to call is 0808 800 6000 the lines open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm.

I hope this is of some help to you.

Best wishes
Lucy

jjane123
Member

what should i do now???

well here i am, in a place thats totally alian to me. i was diagnose two days ago after visiting my doc 4wks ago with a lump. I do not know or have ever known anyone with any kind of cancer so am clueles. I am due to go in hospital on 19th of december for a wide circle something or other and sentinal lymph thing. lol all this termanology is going rite over my head. Anyway i have been offered the option of a masectomy but am told that it will be just as safe to have the wide circle something or other and dont know what to do for the best. Any advice will be welcome. And can anyone tell me how to stop crying lol