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Losing the plot part 2

36 REPLIES 36

Re: Losing the plot part 2

hi linda,

i was told i would have to wait 6 weeks after my op - to give time for the scar to heal.

i have been given letrozole (femara) - not tamoxifen.

i had to start taking mine straight away - was given my prescription the day i went for my post op check and results.

check with your breast care nurse.

good luck for friday.

take care.

gill x

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Re: Losing the plot part 2

Hi to everyone, I had my first op 6 weeks ago I am now due for another op this friday 29th jan as the margins were not clear enough. I saw my surgeon last wednesday and got a phone call today re: friday. I am very lucky as the dcis is contained but maybe this will chance in the next biopsy! is that possible?I was told I will need radiothearapy and and tablets but not tomoxifin I don't remember the name. Does anyone know how long after my op on friday will I need to wait for my first rad? and do you start taking the tablets at the same time or before sorry for going on and just talking about me but this is so new to me but good luck to you all its so lovely to have this forum and to talk to people in the same boat. take care love Linda x

Re: Losing the plot part 2

hi gwh,

glad to hear everything has gone well for you. my results were much like yours. grade 2 clear margins and no lymph involvement. i feel very 'lucky' 🙂

had my rads planning last friday - all tattooed up! can't wait to get it all over now and return to normality. hoping to start my rads in the next 3 weeks.

great news for you. take care.

gill x

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Re: Losing the plot part 2

Great news gwh. Sorry about your nipple. Your results are similar to mine. I had 14mm,grade 1 tumour removed with good margins and nodes were clear (only 2 removed). Have been having daily rads except weekends and my last one will be on Monday making 15 total. Hooray!!
Will start Arimidex on Tuesday as blood results have confirmed I'm menopausal and then see ONC early March.
I was advised to start applying Aqueous cream at least x2 daily a week or two before Rads started and thereafter and so far so good.
Good luck for the rest of your treatment.
Alison.x

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Re: Losing the plot part 2

Well a week and a half after WLE and SLE and a day after results. Operation went fine and I am sure I will appreciate the surgeons handiwork in time but being told just as I am about to go to theatre that I would be losing the nipple came as a shock.

Results however couldn't be better, 13mm grade 1 with clear margins, 5 nodes removed and all clear NPI was 2.65 so all round am very relieved.

BCC advised that she felt it should only be Rads now and the oncologist is booked for 11th Feb.

Back to work next week until half term and then I am taking time out before I start my new course/job in May. Things are finally looking up!!

Re: Losing the plot part 2

hi gwh and jbug,

my pre-ops consisted of bloods, chest xray, ecg,
weighing and blood pressure.

gwh, i wouldn't worry about the driving restriction of 6 weeks. i was told that if my biopsy results are o.k. on monday and i will just get the rads - they won't start for 6 weeks after my op - giving the op time to heal.

rang my insurers today and they have said no driving for 4 weeks after op - even though my g.p. has said 2 :-(. having said that the roads are so bad here i don't think i would risk it even if i hadn't had the op.

i was like lori - only in a day and was more uncomfortable than in pain.

gill xxx

Re: Losing the plot part 2

Hi Gwh and jbug I was diagnosed with bc in november got my wle and nodes done on xmas eve was only in a day bed I had less pain after op than I did with second biopsy I never slept the night after biopsy was told only to take paracetomol did nothing for me At the hospital after op was given pain killers to take home but didnt need them If like me you are preparing yourself to be in pain after op you might be like me and just sail through it Hope all goes well for both of you lori xxxxxxxxx

Re: Losing the plot part 2

Glad your pre-op went well. I have mine tomorrow and hoping the trains and tubes into London will be running.

What do they do at the pre-op? I am a little nervous as I think it will be down to the anesthetist as to whether I can have immediate DIEP bilateral recon...let's hope so!

Paula xx

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Re: Losing the plot part 2

Pre -op went well, thankfully had the really nice nurse who was very positive. Now just have to hope that this snow doesn't scupper the operation! Can't wait to get it over and done with. Thanks for the info on the driving insurance have to say wasn't going to risk the first two weeks but 6 weeks will be a nightmare especially with a 25 mile round trip for rads and a husband who works away a lot, not to mention school and food!!

Re: Losing the plot part 2

thanks ladies,

not going anywhere at the moment - snowed under 🙂 !!

gill x

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Re: Losing the plot part 2

gill you need to check with your insurers about driving, i had wle and snb on 1st dec and was told not to drive for 6 weeks and if i did my insurance would be invalid. its worth a phone call
sue

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Re: Losing the plot part 2

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Re: Losing the plot part 2

good luck for today with your pre-op gwh. you will be fine. the waiting is awful isn't it? - you just want the op to be over with! the time will go quickly between now and next monday.

all i can say is i think it was worse for my hub as he was wandering around - i was out for count and didn't know a thing :-).

3 days on from op and i am feeling great - was hoping to drive the car today but our roads are so icy i think i'd best leave it!

gill x

Re: Losing the plot part 2

you have just reminded me re pre op. when I went for mine way back in May 09, I sat next to a lovley old lady , and we chatted about her hip replacement my up coming op. when I emerged from pre op one hour later she was still sat there. I thought something had gone wrong for her , but no she had just sat waiting to see how I went on as I looked so scared. it truely tovhed me and still does,I call her my pre op angel.

good luck , take care xx

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Re: Losing the plot part 2

Hi gill
Glad to hear the op went well, fingers crossed for good results next week. Am due to go into the hospital tomorrow for my pre-op, I am supposed to go with a list of questions I may have! not quite sure what to ask at this stage hoping that they will just tell me what I need to know and take it from there. A week still seems so far away I just want this lump out now.

Will be thinking of you next Monday and hope it all goes well.

gwh

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Re: Losing the plot part 2

Hi Gill
glad that you got that over and it wasn't too bad.
hope things go well for both you and gwh on 11th. Will just be emerging from my final 'chemofug' by then - can't believe I'll soon be done with it.
hope you're all still being kind to yourselves
love, monica x

Re: Losing the plot part 2

hi gwh and ladies,

had my WLE & SNB on new years eve and was allowed home on the same day as i was feeling fine.

i won't say it wasn't painful afterwards - but the painkillers work well and i feel uncomfortable at times - but it's not awful!

i have found that putting my pillows into a 'v' shape at night has kept me in a comfortable position and i have been able to keep my arm a little elevated.

i was worried about finding pyjamas too lol!! but stayed in the hospital gown while i was there and am dressed today in my track pants and a little zip up top - comfy 🙂

good luck for the 11th gwh - that's the day i get my results from lymph biopsy - fingers x'd.

gill x

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Re: Losing the plot part 2

Hi gwh
You're Dx sounds like mine. I had WLE and removal of 2 nodes on Nov 20th. Had sentinel node biopsy a week before using a new technique being used at my local hospital using microbubbles which suggested that my nodes were clear. The pathology came back with 14mm grade 1 tumour and clear nodes.
I had no real pain afterwards, only a mixture of tenderness and numbness. The BC nurse came to the recovery room soon after I came out of theatre and gave me something that turned out to be a godsend for several weeks after. She gave me a small heart shaped cushion (pink with sheep on)to place under my arm and it made such a difference. If your local hospital doesn't provide this I would suggest you take something similar with you. Apparently a sewing group donated them.
I am now about to embark on radiotherapy having managed to avoid chemo.Had planning CT scan before Christmas.
Good luck gwh.
Alison.xx

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Re: Losing the plot part 2

Spoke to a really nice breast care nurse today made me feel a whole lot better about the situation, although she did say i sounded anxious! that has to be the understatement but it did make me laugh after. Managed to get some PJ's in the end not necessrily my first choice but hey beggars can't be chosers and it's another incentive to get this over and done with and then burn them to clear the cupboard and get on with life. Just wish the op was a bit sooner 11 days still seems a long way away and then another 9 till the results hey ho back to work on Monday for the week so that will keep my mind busy on other things. Also need to sort new shoes, jumper, pencils ect and a haircut for the return to school. Strange how life carries on around you as if nothing has happened.

Re: Losing the plot part 2

hi there gwh, good luck for your op, i can only say it wasn't no where near as bad as i thought it was gonna be. with regards to nightwear i actually never changed out of the hospital gown, i was only in overnight(im not a dirty lady!) and it was easier for the nurses to check the drain and remove it without me trying to lift my arm to get out of nightclothes. once agin good luck x mandy

Re: Losing the plot part 2

Gwh,

I can echo your attempt at buying pj's in M&S for hospital. I was wandering around aimlessly a couple of days ago, I'm due to have a double mastectomy so was looking for button front pj's....could I find them anywhere?? No! In the end I just grabbed a lady that worked there and told her what I needed and why I needed them and she went out back and found me a lovely set of pj's. Best to ask as they keep alot of stuff out back whilst the sale is on.

Paula xxxxxx

Re: Losing the plot part 2

thank you girls.

good luck on the 11th gwh.

booked in to be at hospital at 7.30 in the morning - best get on the night nurse tonight 🙂 !!

gill x

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Re: Losing the plot part 2

Hi Gill

Hope tomorrow goes ok, I am in for exactly the same on the 11th Jan, really wish mine was as quick as yours as the wait is the worst part. Like everyone I suspect i just want to know exactly what I am dealing with. I found myself walking around M&S today trying to decide on the type of PJ's I needed for hospital I normally wear cami type tops but suspect these are not the best for WLE and SLN op, ended up in such a state and depressed that I didn't get any and then forgot half the food I needed to buy in Tescos after!

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Re: Losing the plot part 2

Hi Gill
just wanted to say I hope tomorrow goes well and you make a quick recovery from surgery, and also that the results are good, when yhey come through.
sending love
monica xxx

Re: Losing the plot part 2

hi gwh,
hope you are feeling o.k. i had my diagnosis on 21st december and will be having WLE and SLN tomorrow - yikes!

i feel lucky to have been seen and treated so quickly. have been for my dye injection today. it will be 5 weeks to the day that i found the lump to the day i have my op.

like you i had a decision to make regarding telling my elderly mum and really wanted to wait until after christmas for her sake but because it's all been so quick for me with lots of appt's squashed into a small time frame, i told her. sh is o.k. but it was a hard decision to make.

i have found the help and advice on this board brilliant. although i have great friends and family, speaking to the ladies on here and reading the advice has been invaluable.

i too have this 'weird sense' of courage but i don't think it's a bad thing 🙂

good luck to you and best wishes,

gill x

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Re: Losing the plot part 2

Hi gwh. So sorry you have found yourself here, but like the others have already said it is the best place to come for advise or to rant alongside others that know how you are feeling. This forum has been a blessing and I don't think I would have got through the last 5 months without it.

I'm Alison and I'm 37. I had a 13 mm grade 2 lump removed in august - no nodes involved and about to finish Fec chemo in January before starting radiotherapy. I have 3 children aged 13 10 and 6.

So sorry that 2ns nurse has caused you extra hassle at a time when you are just getting your head round the situation - not needed buoy need to come to your own decisions in your own time.

I too didn't want my children to know any more than it is a bad lump and they are taking it away. However, I did eventually tell them the proper name cancer and they took it really well. I didn't want them hearing the word from someone else and then worrying about it.

I'm thinking of you at this difficult time - I remember all too well how traumatic the waiting and worrying is. Please post on here often and let us know how you are doing.

Al x

Re: Losing the plot part 2

Hi gwh,

Sorry you are going through all this, I do think that is very off that they spoke to your mum on the phone, I would not have thought they would be allowed to do that?

Keep us posted with your results and try and rest as much as possible. I know how stressful all the waiting is.

Good luck.

Paula xx

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Re: Losing the plot part 2

hi gwh,
so sorry you have had to deal with this news at this time of year - its terrible at anytime but especially christmas when you have to put on a brave face for family festivities.
I just wanted to say that in my experience professionals can be very negative, though never have they imposed their opinion on me as to who i should tell, when and how - that is very much a personal choice. But i do feel that they give you worst case scenarios - then anything less hellish is a bonus - and there's no come-back on them then.
its easy to get bogged down with the scarey negatives at the beginning, but i personally have felt more positive as i have gone through each stage of treatment. I just had my last chemo and due to start rads - i occassionally have a wobble but the support you get on here always straightens me out.
Good luck with your treatment.
xxx

Re: Losing the plot part 2

Hi gwh1969

Welcome to the Breast Cancer Care chat forums. As well as the support you receive from the many informed users of this site you may find BCC's resources 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/healthcare-professionals/publications/quick-order-list/*/changeTe...

If you feel you need to talk to someone in confidence 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. The number to call is freephone 0808 800 6000.

I hope this is of some help to you.

Kind regards
Sam (BCC Facilitator)

Re: Losing the plot part 2

Hi gwh, Thanks for telling us the next bit of your story. I do not like how this second nurse came across either and I agree with Monica that it is up to you to decide whom to tell and when and how. I hope all goes more smoothly the next time you go to the hospital and you do not get spoken to like that again. You sound as if you have a good network of friends and family. Keep in touch, love Val

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Re: Losing the plot part 2

Hi gwh,
Like scottishlass I responded to your first posting, and I'm really glad you managed to get back on here. This is a tough time - knowing you have it but needing more info, but from what you know - grade 1, 9mm sounds as good as it can be, so I hope the news continues positive as results come in. A wide local excision isn't a big op - had mine as a day case, so recovery from that will hopefully be fairly smooth.
As for the second nurse having an opinion on your telling your son and father, well that really isn't for her to comment on - you know your family and the circumstances and are well able to decide for yourself and don't need to be justifying how you manage the situation to anyone. I would be inclined to focus on the response of the nurse who was with you and the consultant when you were given the news.
You have a lot of friends on here who are a fantastic support network - we have all been where you are and come on here in different shades of shock, panic and distress. There's nothing you can't say or check out with us.
be kind to yourself and let us know how you get on
love, monica xx

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Re: Losing the plot part 2

Thank you for your words, guess this is the first chance since finding out that I have had two minutes to myself to think about it, with parties and Christmas to organise, doesn't help that my husband had to go away to work today to ensure he was here for the operation and the following two weeks.
As for the nurse she didn't tell me anything different it was just the negative way she spoke to me about my decision not to tell my father and son 2 days before Christmas. I have always been a very positive person and having spoken to the first nurse was looking at the positives of the situation, it is a small lump, 9mm, the ultrasound showed no signs of the lymph nodes being affected and it was grade 1, so in the grand scheme of it this was the best possible outcome. My friend is a child pschologist and knows my son very well, having had a very long conversation and discussed all the ins and out , my husband and I agreed with her that at this stage there is no need to scare him with the word Cancer, he knows that I have to go to hospital to have a lump removed and he knows that after that I may have to see a doctor for a few weeks to make sure I am ok, if god forbid i have to have Chemo then we will deal with it then, but the nurse made me feel that I was denying the results and that it was my sons right to know that it was Cancer, my father has been told, after Christmas day and I am still glad that I didn't tell him before he didn't need to have his Christmas ruined by this news. Sorry if I have ranted on guess I need to get these feeling off my chest and try to look on positive side of all this, as somebody kindly said things have come on so much and the support is so much better than it was 20 years ago.

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Re: Losing the plot part 2

gwh

I'm so sorry you had to join us but we truly understand what you are going through. One positive thing is that it's a grade one. You couldn't have caught it any earlier! Mine was a grade 3 and in one lymph node but treatment is still do able. You can rant at us any time, we know the feeling!

Take care

Julia xx

Re: Losing the plot part 2

Welcome again gwh1969,
I replied to your first post. I am surprised that the nurse called you with more news and I am disappointed that she spoke to you Mum instead of phoning your mobile. But perhaps she couldn't get a hold of you that way. What did she say to you that has got you more worried?
I was 39 with 2 children when I was diagnosed in 1989! Yet I still remember how scared I felt and how overwhelmed I felt with the "newness" of it all. But there were no sites like this for me back then. It is good that you have come on here to share your worries.....we will hold you hand while you go through this new and scary experience and try to answer any worries you have. Much love Val

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Re: Losing the plot part 2

Hello lovely ladies 'losing the plot part 2' LOVE IT!

Lose the plot all you like, one thing about having this lergie is that you can now do, say and moan all you like about absolutely anything!

I was diagnosed 22nd Dec 08, stage 1, but with one manky node, so out the rest came. 6 lots of TAC chemo (very harsh but due to my age and family history) I had it, 20 rads and am now fighting fit and nearly back in the land of normal people. I am back to work, haven't a clue what I am doing, but no one minds!

I know only too well how scared you both are, but if I could give you some words of wisdom they are......look for the positive in everything. No hair? So what, think of the £££ you save on shampoo and time blow drying! Radio therapy boobie? Just think your breast has been on it's hols and got a tan! My scar is just fine and dandy, I have stretch marks worse and I think it looks just lovely thank you very much.

If I was having a bad day, I just thought of the kiddies that get this disease and wont make it to my age, that soon stops the wailing.

ANYTHING you want to know, ask away. PM me if you want to discuss things privately, I really don't mind.

The next year is going to be a tough one, and you will be sick of the sight of NHS buildings, so, try your very best to enjoy this Xmas period with your families and once the new year comes, think ....'bring it on'....

with love... Daisy xxxx

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Re: Losing the plot part 2

hi i was diagnosed on 25th nov with stage 1 tubular carcimona. i had wire localisation and then sentinal node biopsy and wide local excision on 1st dec and i will be having radiotherapy in jan (im booked for christies on 31st dec). i can almost feel your panic and i really feel for you as i was exactly the same. i have to say the tratment i received from salford royal was fantastic. the op removed 6mm tumour with clear margins and clear nodes whcih is good. really the cant tell you much more until your op when they've had chance to examine the tumour. please feel free to message me and please come on this site where there is loads of support
love
sue x

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Losing the plot part 2

After my first unsuccessful attempt here I go. I am 40 years old and have just been advised that I have breast cancer, 4 days after my sons 10th birthday and 8 before Christmas, timing is everything! Think I have been in denial due to Christmas but now everyone has left I suddenly feel very alone and scared. When I found the lump I was advised by my local GP that it was free moving and therefore shouldn't be a problem but to be on the safe side she sent me to the one day breast clinic at our local hospital, the mammogram was clear, the consultant doing the ultrasound said that it was small and smooth so not to worry he didn't think it was cancer, however the fine needle showed suspisious cells so they did a large needle biopsy, results a week later showed Grade 1 cancer but it looks as though the Lymph nodes are clear. I am booked in for a Wide Local Exiscion on the 11th Jan and then who knows! The first Breast care nurse I spoke to was very encouraging and made me feel that this was going to be ok in the end but the next 3 months would be tough, however 2 days before Christmas another nurse from the same hospital called and spoke to my mother asking me to call back the unit , thankfully I had just told her and dispite the fact that I had asked for all calls to come to my mobile she had called our home number. When I called back this lady was a lot less positive and I came away feeling like the opitmism I felt about the situation was unfounded and that I needed to wake up and smell the coffee! Does anybody have any advise words of wisdom, I know nobody who has been through this and all the terms and books are really just swimming around my head at the moment.