thanks bear have sent a pm
Hi Lincs Lady
Sorry about your MRI results delay - not what you need right now.
It will be your allocated Breast Care Nurse coming to see you. (mine's Barbara). She'll go through the procedure with you and she will have photo's to show you aswell. Write down any questions you have before she comes - it's easy to forget what you want to ask.
Your pre op tests will be blood pressue, bloods taken,a swab test to make sure you're not carrying MRSA, a trip to cardilogy for an ecg to make sure your heart is fine and possibly a chest X-Ray.
It's pretty standard to go in the day before for booking in and mark up and then go home. I much prefer spending the night before in my own bed - but some ladies do choose to stay in.
Hi Lulu, Yes have put date in my diary for Gyle outing. Not sure time you are meeting though and where but will find out nearer the time....Plenty time yet. Have you met a friend of mine called Heather when you have been doing stuff at the Maggie Centre? We did Art Therapy there at the same time and met in ward one 10 years ago but she is much younger than me. Hope you feel a bit better over the weekend. Take care. Will keep you posted re chemo. Not heard back from Ward 1 yet. Love Val
val sorry your not getting your chemo yet but wouldnt it be great if you ended up getting the same time as me... youll nbeed to keep me updated.
hopefully see you a week on monday anyway at the edinburgh park
Hi Lulu, Went to Dentist. Mouth healing nicely, no infection but not healed enough for chemo on Monday....so deferred approx 2 weeks....waiting for Ward 1 to get back to me. So looking at my diary I wonder if I will be having my next chemo around 17th and think that is date you will be there....but nothing set in stone with me yet as dentist to see me again on 15th, says it can take between 4/6 weeks to heal. But relieved it is all over and no complications so far. Hope you are feeling a bit better love coz I know you haven't been too good recently. Keep well LOL Val X
that unfortunate about the doc being off sick... but you would think they would have something in place in case such things happen rather than waiting for you to chase it up... anyway i hope they can do it quickly now.
never heard of nurses doing home visits to discuss surgery... thought they would do that at your pre-op assessment... anyway its good that you will hopefully be able to go home inbetween your marking up and your surgery.
nurse rang today
and the man who does mri results is on sick for however long
so there is now a wait while they get sent out of the hospital to be looked at!!!!
next wed i have pre op tests??? i rang to change the 8.30am appointment to be told i was booked for 10am and my paper work was wrong
i shall ring to check every time now
nurse also does a home visit next week to discuss surgery
she thinks i will be able to go in the afternoon before for mark ups?? and come home and then go in the day of the op next day as its an afternoon slot
I would trust your team,as others say,if they felt it would be a benefit they would offer you it.I wasn't given chemo first time ,grade 1 ,13mm,5mm and 4mm.Or this time where I had the 4mm one removed after they missed it last year! It came back as grade 2 ,but still no chemo ,just rads ,starting in 3 weeks.
I am doing fine on Tamox,no real SEs. I would say my thermostat is a bit wonky but thats all.Not flushes as such ,just not able to handle the warm muggy weather!
The no chemo is great news!
Sounds like we got similar result with similar treatment prescribed Anna. I was also told dont need Chemo but didnt question this and was very relieved to be told I didnt need it.
Was also told can start Tamoxifen straight away which I thought unusual as most here seem to start taking it after Rads have finnished.
Wonder if we have the same consultant lol.
anna that is good news.... sounds very similar to my first tumour which was a tiny bit bigger but a grade 1 i didnt need chemo either as the benefit was only 1% and my unit wouldnt put you through the risks of chemo for under 2% increase in life expectancy... i know some units consider 7% borderline so wouldnt be offered if it had a higher benefit in some places.
i think you can ask for details about the risks... although if i had been offered it i would have accepted it.... but that may have been because they told me i would need it in the first place because being 37 they thought it was most likely to be a more aggressive cancer... and to be quite honest i think now id have been a bit miffed about having had it since i got a new primary tumour anyway which wouldnt have existed at that time so id have felt really cheated LOL
i was on tamoxifen for 3 years and like any medication there can be side effects however most people sail through with no problems but people are more likely to mention it when they do have problems... also a problem for one person may not be a problem for somebody else... i had a few hot flushes to start but they settled down and i only maybe had 1 or 2 a day if that sometimes i went for days with none.... and some erratic bleeding at the start which was resolved by getting a mirena coil in... the rest of my problems were associated with drying effects... constipation, dry mouth, dry flaky scalp, itchy skin on boob and legs which were easily sorted with some lotions and potions.... hopefully you will be one of the majority and not have any major problems.
it sounds like you are having WLE which is a lumpectomy and removal of lymph nodes... it doesnt specify a sample or sentinal node biopsy but also it does say a clearance.... GA is a general anaesthetic... the op list is just really to help the staff to prep theatre and the patient... so the theatre staff know what equipment and trays they need.... when you sign your consent form they will have the correct procedure and you can ask how many nodes do they envisage taking.
hope you get your mri results soon.
I did say " are you sure I don't need chemo, just as an insurance. ?"
I also said I thought "younger" women ( I'm 43) were more likely to be given it. But both the consultant and BCN said that everyone in the meeting where they planned my treatment had agreed it was not necessary. They have all kinds of statistics and thresholds, and due to the small size of my tumour and lack of node involvement the benefits of having it were thought not to be significant.
I can't remember all the details or statistics she quoted, but I am prepared to trust their judgement. They said they would definitely "insist" on me having it if i needed it...
Have now come down off my "high" and am worrying about risks/SEs of Tamoxifen... it never ends does it ???
PS. if any one has PMed me, sorry but it won't let me open the inbox !!
if you don't need chemo,and if you trust your team's judgement then why on earth put yourself through chemotherapy - it is a very gruelling regime after all
sounds "good" anna
good news about chemo
someone said to me if they said i didnt need chemo to say i wanted it to make doubly sure? any views on that anyone?
i have a friend in hospital who has looked me up lol
still no mri results but im down as going in for wle breast lesion and excisision lymph node, ga
does that mean hes going for a clearence sweep round? or biopsy of nodes? something else to ask nurse
OK thanks chipper, I will have a look for that thread, although am finding this site a bit confusing to navigate ( only started using it yesterday)!!
Or perhaps I won't read it...if i read about all the SEs etc. I will probably convince myself I have them all from day 1 LOL!
good news annalou (if good is the right word !) I am about to start tamoxifen next week..my choice to delay after rads -am six weeks about since finishing them. There's a taking tamox. thread going which should be a good moral support for us !
All my results were good as could be expected i think. My BC nurse was very kind and had already given me some of them unofficially over the phone last thursday !
I HAD 11mm IDC with 2mm of DCIS round it
they got it all out ( margins clear)
ER positive ( level 2 i think she said)
HER2 borderline so sent for second test to come back as negative
2 sentinel nodes plus 2 more sampled. all clear
I am going to be having 3 weeks of radiation plus Tamoxifen. She said I could start it tomorrow (!!!!) but I asked for a week's breathing space so they will prescribe it next week.
NO CHEMO!!! ( they said the benefits would not be significant enough)
Wounds and arm movement fine. No seroma. Steri strips are now off.
Have also been dealing with the "telling people" thing via a network of friends and have had lots of supportive texts from various more casual acquaintances.
Am a bit worried about the Tamoxifen now ( even though mostly all I am is relieved.) Anyone else in the same boat, just about to start it?
Hope you all are having a good (or not too bad) day?
good luck anna xx
Annalou ,good luck for today!
Carol, I start radiotherapy in 3 weeks so will be interested to hear how you get on.
Lincslady ,hope you are doing OK ,glad to hear you managed the MRI OK.
annalou, good luck today, I have sent you a PM
I sent a round robin type email (though I hate them) to family and close friends to let them know what was happening (looking back at them I underplayed it a bit) - mostly people were fantastically supportive and kind and some even put me on their prayer circles-was very touching. Some people,and these were family,seemed not to be bothered.
I think because I seemed calm people took their cue from that - I think once I knew what the dx was then I deal with things best by just getting on with it. I just worry about boring people silly by talking about it, I think it comes from feeling that I should be getting on with my life now,six weeks post treatment...I think most know how anxious I am about tamoxifen though !
i think i worry about being ill in the house alone with a 4 yr old
im a single mum
i worry in the dead of the night if i have a tummy bug
lol , like , who would find r if i passed out now etc etc
i dont want him to have a mum who cant take him places cos im ill, dizzy,too tired etc
Yeah, I sent a group text to everyone who knew on the day that I was going to get my initial diagnosis results !!!( ie closest friends and family)
It's now the peripheral people I have to deal with, but i have asked my closer friends to spread the word...
Lincs lady- just reading thread!
RE telling people
It sounds a bit weird but i sent a group text to everyone i cared about and told them my news and asked them not to contact me until i called them or saw them. It worked for me as by the time i started to see them face to face was 10 days down the line and i did not cry and neither did they...The people who took it the worst were the ones i seriously was not expecting like my poor hard man brother who has been truly devastated. He didn cry when our dad died but cried when he heard my diagnosis..
Back to the present-
I am having chemo 4 on thursday and i can honestly say i was terrified about being ill with a 1 and a 2 yr old and i have pretty much coped ok. The eldest i am sure knows i am poorly at points but she is fab at helping me out. The baby only double took when i shaved my hair off!
Good luck and remember the treatment is there to save your life and make sure you will be holding your grandchildren in the future. It sucks but its a necessity.
i so know what you mean about telling people
i just break down when telling people
ive just told my main circle of people and said no tea and sympathy please as i have to stop sobbing in front of my son
everyone is so shocked
i wonder i they look at me and think oh god thats her done for then?
is that what people think when they hear the c word?
its my son i worry about
there is only me and him and the thought of not being here for him or being ill for the next yr(his 1st yr at school) just devestates me
it is mad that i feel so well now,sometimes i feel like having no treatment as its that that does you in lol
I see both my posts eventually appeared...i think maybe the mods have to check them before they will put them on the board...?
I am wondering why I have not been offered MRI or any other scans and am going to ask them tomorrow. It's all so confusing and there's so much to take in...
Have just asked one of my friends who "knows" to ring/text our other friends and acquaintances with my "news", as I am finding it really hard telling people.
Hope you are ok today.lincslady maybe I will try and PM you, then it might let you reply if you feel like it ?
hi anna lou
it does seem we are in the same sad boat
i hope your results go well
i rang my nurse today but still too soon for results of mri
i would love to pm you and chat to you but it wont let me sent private messages on here for some reason
i just posted a reply but for some reason it hasn't shown up??
Thanks for your reply. Sounds like we have similar dx s .I already know my lump was 1.1cm, Grade 2 and no nodes involved. My BC nurse phoned me with this info even though she isn't really supposed to! She is lovely and was very concerned/sympathetic over my anxiety levels, which were through the roof with the "waiting game" !
I just hope tomorrow's meeting confirms this and no nasty surprises!
Take care xx
(hope post shows up this time ....)
Hi Carol thanks for replying. I will bookmark this thread so I can come back ! There are so many forums on this website.!!!
Sounds like we are in similar situations. I find it really helps to have someone to compare notes with and who knows what you are going through.
I have been very anxious, not eating or sleeping very well since dx on 31st July. But have some meds from GP to help with that which I think are just starting to work. How have you been since dx??
Take care xx
hi annalou, sorry you had to join our club, I am 42, diagnosed 1st June Grade 2 15mm no node involvement, I had 2 wles, started tamoxifen and due to start radiotherapy in a fortnight, I didnt get chemo.
let us know how you get on tomorrow
HI Lincs lady and everyone else,
I am new to this website although i do post on another one...
Don't know how active this thread is, but I just wanted to tell lincslady she has a BC twin - me ! I am also 43, my lump was 11mm
(removed by WLE on Fri 21/08/09) and Grade 2. My BC nurse phoned me to say my nodes ( sampled by sentinel node biopsy) were clear.
However, MRI has never been mentioned to me at all, I just had ultrasound of breasts and armpit area, as they said my boobs were still too young/dense (ha!) to show up much of any use on my mammogram.
I am going to the consultant tomorrow for the full low-down on my results and discussion of treatment plan. I am expecting I will have to have chemo as have been told it is more likely to be recommended for younger women ??????
I have 2 kids, a boy of 12 and a girl of 9. Telling them about this was the hardest thing ever. I still haven't really been able to use the "C" word and am dreading them going back to school next week and having to face all the mums at the school gate.
Anyway enough about me, I just wanted to say I felt kind of reassured when I read lincslady's posts-i had the same feelings of sheer dread and panic at initial diagnosis too. Hopefully my post might have a reassuring effect for lincslady or perhaps someone else?
Love to all, take care
Anytime - will be thinking about you on Friday
and bear i didnt get it
thanks though and will get back to you after friday
Hi Lincs lady,
Just wanted to wish you all the best for Friday's MRI scan.It'll be good to get it over & done with and to know what you're up against.Your mind conjures up all sorts of horrors,it's better (not necessarily easier!)when you know what's going to happen.
I keep seeing places like Brigg,Lincoln etc mentioned and it's making me feel very nostalgic.I was brought up in Keelby & Grimsby (Havelock School)& my mum still lives there.I may be married to a Southerner & live in Surrey now but am still a northern lass through & through.
Just remember we're a hardy breed & can get through most things!
All the best,
Little H xx
Hi Lincs lady
did you get my messsage? Offer still stands to meet up in Brigg for a coffee/chat.
im with grimsby hospital and dr donalson(not sure how its spelt) he seems to be highly regarded
thanks for all your kind words
i now have my mri through for friday pm
she said im not down to have dye and i will be on tummy for 1/2 hr approx
i have someone to come with me this time,though i know they cant come in
she said i then ring a week later? to ask or appointment to see dr for results
i was suprised at this as everything else has been fast tracked at the clinic
at least it seems i will get r started in school before i go in
Hi Lincs lady, I dont come on here so much any more but this site has been brilliant when I needed questions answered, advise or just a moan. Your post caught my eye, as I remember the feeling so well (dont think I weill ever forget) of looking at my kids bursting into tears all the time. My little boy was 3 & 1/2 and my daughter was 9. They saw me go through chemo, loose my hair, (well they cut it off) and have numerous hospital visits and stays. I went into hospital two days after my boy started school for a mastectomy and was gutted. I spoke to the school and they were brilliant, I felt that they gave him just that extra bit of mothering in the early days and I really dont think that its affected him settling into school life. He is now about to start year 1 in september and hey guess what mum has just come out of hospital again after having reconstruction, I think kids are much more resilliant then we think they are.
Anyway just wanted to say as your treatment plan is put into place I recon you will not be so tearful, I wasnt, and it seems to be the general concencious on here/ All too much to take in at first and Im sure you will be fearing the worst right now - it will get easier to deal with as time goes by.
Just wondering from your user name if you are from Lincolnshire? if so what surgeon have you got? I have been treated in Lincoln and found the service to be fantastic, and if you have been lucky enough to get Mr Gvaramadze, you have hit the jackpot (hmmmm actually im sure you dont feel that way right now, sorry wrong choice of words maybe - I really am tring to make you feel better) he is the best breast/onco plastic surgeon in the whole world - well in my opinion.
I wish you well with your treatment plan - you will get there.
hi lincs lady,
i will be having rads after chemo - then hormone therapy for 5 yrs. Didn't have MRI scan - but have been told that some areas do this as routine.
On the plus side to all this - at 43 you are classed as a 'younger woman' when talking in context of BC!
good luck with the scan
Hi have been following your story . I was diagnosed on 22nd July and am going in for surgery on Wednesday so am very,very nervous. Do not know exactly what surgery will be as doc. needs to see results of MRI I had on Thurs. gone.
MRI is as described earlier and I found that playing my favourite CD during the scan,keeping my eyes shut and imagining that I was lying in the sun helped to take my mind off it! Also took two painkiller before as precaution against headache from noise. It is not that bad if you relax. Hope this helps. good luck.
Hi ,I got your PM!
No problem,I have had 2 MRIs of my breasts.
The machine is like a big tube and they will (probably) lie you on your tummy with your boobs in 2 "holes" in the table!
They will make sure you are comfy before they begin.The radiographers will leave the room but will speak to you via an intercom.When the scans start they are very noisy ( like someone digging up the road)and will last a few minutes each.They will give you earplugs or headphones to keep out some of the noise.You need to keep still but really its not that hard,I kept thinking my breathing would make me move but I was assured my images were fine.They will do several "sequences" with short breaks in between.
Its likely they will use a contrast injection,this is usually given via a venflon (like a drip) during the scan.It does nothing to you,you won't notice anything untoward.
Tip ,try not to wear anything with lots of metal ,belts,loose change etc as they will need to come off or will go flying in to the magnet!
Just ask if there is anything else I can answer,
so you had an mri?
can you tell me what to expect please.
i would send you a pm but it wont let me
I would think it would just be your boobs and axilla area.Thats what I had.
Hey!43 is young........I am 45 and my boobs, well my remaining natural boob is still dense!
will they scan all of me to check everything or just top half do you think?
im 43 so not too young lol
Don't worry too much about having an MRI .Its probably because you are young with dense breasts on mammography.If they only see the lump on one imaging modality they often like to do an MRI to back up their findings.Its a very sensitive imaging tool so you are lucky having one!
so you had chemo after rads?
at the moment he is saying rads and maybe not chemo?
im a bit worried that i have to have mri as no one else seems to
he said its as the mammo didnt show a thing as too dense
so i suppose he wants to check the rest of my body or just chest?
thanks for your story
i also had a 11mm grade 2 lump (dx in april). It felt HUGE to me...but then my boobs arent that big! In reality it was the size of a pea. I have been very luck and after WLE only have 1 3inch scar at the side of my boob - with a bra on i look no different than before! Initially you do think the worst...i had my funeral planned and everything, but as you start to understand more about the disease and your treatment plan kicks into action you can get things into better perspective. Though i still sometimes have my 'moments' - like finding a new lump in my armpit, but it turned out to just be a seroma! On the positve side to all this now you have the foot in the door so to speak they take all your worries and fears very seriously where previously for me anyway i was fobbed off for months as it was thought to be hormonal due to my age.
I'm sure your son will suprise you even being so young. I had to tell my 11yr old on the week of his SATS which was a worry but he actually did better than expected. I have to say though nothing much phases him....he has been away at his nans for 4 weeks and hasnt seen me bald. When i showed him and the wig i had he just said the wig didnt suit me as it made me look too normal....so i'll stick with the baldy look!
Best of luck with your treatment.
I could have written your post 5 years ago! My daughter was finishing primary and starting high school and all I could do was look at her and cry. Its very normal to feel this way. 5 years on I'm very well and we're waiting for GCSE results! You will move forward I promise you xxx
I am waiting for results, but on ultrasound, it is pretty clear it will be C. Mother died of it 30 years ago. I alternate between feeling like throwing up, crying when I look at my grandchildren (had to take their pictures off my computer screen), and an occasional deep sense of calm. Very, very bizarre. It helps that my aunt had BC 40 years ago, lived normal life; my sister in law had double mastectomy 30 years ago, still going strong; my best friend had prostate cancer 7 years ago and then throat cancer 2 years ago and is doing well and he assures me that after awhile, you don't think about it every single moment. The worst part is the effect on children, husband, you have spent your life trying to care for them and spare them unnecessary pain and this just sucks for them horribly. Especially since for some reasons, the media and just about everybody seems to treat "C" as a death sentence. I don't even like the word "survivor" I like "thrivership" better. Hopefully, I will be a thriver once I get a treatment plan and get going. You will too!