Evening all, d’you mind if I join you please? :smileyhappy:
I’ve just turned 50 and am single, living alone. I left work a year ago as my Mum died and my Dad needed a bit of support so I decided to take the year off to help him settle and to give myself a bit of a break too (had a hard few years). I was planning on finding a new job after Christmas as my savings are running out soon. Best laid plans and all that…
I found a lump on 23rd November, had mammogram, ultrasound & biopsies on 4th December and was told it was almost certainly cancer and invasive ductal cancer was confirmed by pathology reports on 11th December. Although it looks as if it is just one lump that is the problem at the moment (axillary and one other lump showed no malignant cells) my consultant asked for an MRI scan too as he said my breasts were complex and the cancerous lump is hidden behind a much larger non-cancerous lump. In fact it seems my boobs look a lot like lumpy porridge so it’s hard to see exactly what is going on :smileyfrustrated:
The bit that is worrying me at the moment is the delay in getting the diagnosis sorted out. The Consultant said that I should have the MRI within a week to 10 days of diagnosis but the appointment I was originally given was more than six weeks away so I had to jump up and down to get it brought forward and really hated feeling like I was being a nuisance. My BCN said she would arrange for me to see the Consultant again once the MRI results were through but I emailed her today (MRI was done on Friday in the end) and got an out-of-office saying she wouldn’t be back until 5 January and as my Consultant’s clinic seems to be Thursdays only and Christmas Day and New Year day knock out the next two, it seems I’ll have to wait another fortnight before I get the results. I understand that if any of the other lumps look troublesome from the MRI I might have to have more biopsies. So, at this rate it will be two months post-diagnosis before I can get a treatment plan even if I don’t need more biopsies, which seems inordinately long to me. Is this usual in your experience or should I be pushing to speed things up? The last thing I want to do is to antagonise my medical team and I do appreciate that they are entitled to Christmas/New Year holidays too but I don’t want to just sit back and do nothing if I should be chasing it up.
Along with the support you will find on here, our helpliners are back on Monday 29th Dec 9-5 so please feel free to give them a call to talk any concerns or queries through on 0808 800 6000
Here’s a link to the BCC ‘Just diagnosed’ information and further support ideas which I hope you will find helpful:
Each visit is another test, each test is another week.#
I look on it as a step upon the way to getting rid of it, I have phoned up BCN a couple of times and found I get some sense of why the delay. Sometimes it’s just that they have to wait for the test labs to do their jobs first
Gerbera, there doesn’t seem to be a ‘normal’ in relation to the format tests and results and treatment plans take. It is frustrating at times but I waited about two weeks before getting the results after an MRI. Hope all goes well for you. Boa
Hi - oh the waiting we do all live this pain - as a pointless fact there is nhs guidance of op in 30 days of diagnosis of BC - but you may find, like me, that there are many tests before the diagnosis - long/short story short - found lump start of November and had first mammogram ( clear) then ultrasound ( not sure ) - biopsy - week later results showed cancer grade 2 but they needed mri to confirm not more hoping for lumpectomy at this point - week later mri - week later called back and masectomy for jan booked - then… Phones and asked to come back as two radiologists disagreed over my other Breast - referral option to mri biopsy to be agreed but eventually declined and now having double (bi) masectomy on 12 jan … So they have met the 30 day target with final decision made on xmas eve but it has felt like an eternity of tests - I started this journey pretty naive - even the ultrasound consultant said “we are going it for your peace of mind” - I’ve learnt to juggle a few “what ifs” as you may find the news you get isn’t what h exoect at all etc x you are doing the right thing working out your options in your head! Best of luck love sarah
Got a call today from the Radiologist who said that following my MRI I needed to go back for a biopsy on another (third) lump in my left breast. I asked her what the MRI had showed about my right breast and she said she didn’t know anything about that and the clinical team should have spoken to me about it, all she was doing was trying to book an appointment for another left breast check. I burst into tears and started shouting at her as I’ve tried to get someone to tell me what is going on with the right breast for over a week now but got out of office messages and no one seems to be available to speak to me (I asked about right breast at original checks and was told that it was clear, then a week later when the Consultant was giving me the formal pathology results he mentioned in passing that there was a lump that appeared benign but MRI would pick it up. He was too rushed to talk to me so I had no idea where it is, what size it is etc)
A BCN called me back an hour or so later and when I explained that the right breast lump had been sprung on me with no details she fished out the MRI report and told me what it said. I am thoroughly ashamed of having lost it with the Radiographer. Half of me wants to call her and apologise, the other half wants to carry on sulking (she was the one who said on first examination ‘oh well there is definitely something there, still, I bet you’re glad as you haven’t wasted your time or ours on nothing’)
Given how badly I am reacting so far, I dread to think what my next appointment is going to be like. Am I ever going to stop being an over-emotional baggage or should I just start wearing a big sign round my neck saying ‘Danger, do not approach’?
Firstly, you are going through probably the most terrifying experience of your life. You are also in a pretty fragile place from what you’ve said of your background.
Secondly, the radiologist will get over this, probably has heard a lot worse.
Thirdly, the incomplete information and sidelong mentions of possibilities of this and that potential problem is not fair on you and no wonder you are stressed beyond endurance.
So, forgive yourself. If I were you I think I probably would phone the radiologist, just because it’d make me feel better, or even just drop the department an email. You don’t need to apologise, just explain why you became so upset.She was obviously concerned about you, as she instigated the call from the BCN?
This disease changes us all fundamentally. We go from feeling perfectly well to being informed we havea life-changing illness, with no clear plan of action, stumbling from one set of results to another, via various medical treatments to which we submit because we have to, in the hope that it will all be ok in the end. We feel out of control of our lives and our futures.
So we are entitled to snap every now and again, and people have to allow us to do that. And i think you would find that your radiologist feels utterly dreadful at having caused you to become upset. Maybe she should feel that way, maybe not, but that is not your concern. Your mission is to find out as much as you can about what is happening to you and to deal with that in the best way for you.
Thanks ladies, I am just so disappointed in myself & I will apologise to her when she does the next biopsy on Monday as it’s not her fault. Just wish I felt a bit more in control, or at least managed to keep it together with the people who are trying to help me.
Thanks Sandie, I’m feeling a lot better now I’ve decided to apologise to her on Monday. My first priority though is to try to get some clear answers to what is happening to me, at the moment I feel like a piece of meat that has been thrown into the NHS machine and I don’t know whether I’m going to come out the other end as a sausage or a burger or a veggie alternative! I suspect it’s just that the hospital is a bit out of synch because of the Christmas holidays.
Hi pianist - I think it also depends on cancer type - I’m lobular and it’s very sneaky - didn’t show up on mammogram was there on ultrasound but found more with mri … X but I honestly wouldn’t worry about not having one if ur treatment plan is finished - I’m sure they will monitor and would have referred you if they had any concerns x
Hi - a lovely thread idea rose x x bit low this evening but read on one of the threads somewhere that someone’s surgeon had said Something like if you worry to much you will forget to live - I quite like the idea of this and am trying to focus on the positives as much as possible xx but like I say … A low one tonight x
Hi rose xxx you love xxx don’t know what’s up - suddenly down and tearful x x good day up to about hour ago - prob tired from driving up to lincoln - imagination a bit wild tonight and missing my boobs even though they haven’t gone yet !!! Jeez - I’m like a bloody Alton towers ride on emotions xxx lots love xx don’t you DARE start doing stuff- still feet up ( or arm up!) except for your fun visits out xxx
Oh Sarah, wish I could help you but the best I can do is a big hug winging it’s way to you over the internet. The low mood WILL pass in it’s own good time and there is nothing wrong with feeling sad and or angry about what you are going through.
I agree with you about ‘grieving’ for our soon-to-be-lost boobs, even though I’ve always hated mine! It’s just that it is a loss of part of us not just physically but psychologically and I can’t help feeling that we should be allowed to grieve. Was seriously thinking about having a ‘Bye Boobs’ gathering with some friends before surgery to give them a proper send off, and I’m definitely going to take some photos of myself (fully clothed I hasten to add!), as a reminder of what I used to be. Still hope I’ll be happy with the ‘after’ pictures but that doesn’t mean I won’t mourn the loss.
Hi Sharon x thx x
I actually like my boobs - gone off them a bit since the whole cancer thing mind you ! Psychology hard tonight but must remember this is to keep me alive x another week feels like a long time today
Hi beryl and rose
I also took the selfies - in sporty bra - really in case I do reconstruction down the line ! Yes rose think I was missing my son already and v tired and yes don’t think I’ll make the whole week at work. My last day leave today and i woke up after a pretty restless night and thought can’t go in for the whole week. Sooo plan to take back work tomorrow ( it’s not a job that stays in the office ) deal with a few out standings see how I get on then will defo not be in on the Friday as a minimum. Hoping it might be a distraction though and have promised myself to only work my hours. Beryl - I found the big c here and they have been great. Dud chat about counselling but they suggested I waited until I’d had my op and git further treatment plan - quite sensibly they pointed out that I had enough appointments to worry about at the moment. It’s good to know it’s there though and I can have 6 free sessions of massages which I will take tgem up on. If I had a carer they could also have six sessions but I’m on my own here and rose is spot o. About not burdening the girls (15 twins) - they get what I am going though and know that I am dreading the arrival of my parents next week ( mid 70 and 84) - I love then am recognise I need to lean but every time they phone they are soooo worried and can’t talk about anything else - plus I do t think I sm going to cope with their sad faces ! It feels such a drain …my closest friends live the othe dude of the country as we moved around a lot with my ex husbands job - I v recently joined a social group but then got diagnosed … Anyway enough of my troubles ! I’m back to looking forward and I’m going for a run this morning as might be last time in a little while and I am doing race for life this year as my girls asked me to xxx hope you are both ok and lots love to everyone else x sarah
aNd on a lighter note - I pinned up my post surgery exercises on the bedroom door and was telling my girls that eveb the advanced ones are easy pre surgery so be prepared for a totally hopeless mum - they had a go and one of my girls was lifting her elbows up and said “I’m finding this really hard - I must be sooooo unfit !!” - much giggling xx I giggle and laugh a lot with my girls - please don’t all imagine that I’m sobbing every minute ! My posts here tend to be when I am on an edge as don’t want to overly wordy tgem with my macabre thoughts and feel safe in these forums xx
Went back for more biopsies today and had a much better time of it, hurrah! I saw the ‘problem’ radiographer again and we both apologised to each other. Actually I think she is the radiographers assistant as it is someone else who does the actual jabbing while she does something on the computer then sticks the steristrips on, and I had a different radiologist/jabber this time who was so much better. She took loads of time to explain things to me and told me exactly what was going on which was hugely reassuring.
I had a lovely friend with me this time throughout the whole thing and she distracted me from the gruesome bits by singing show tunes loudly and out of key. In the end the radiology assistant and radiologist joined in so we had a bit of a singsong to the Sound of Music and a debate about which was the weepiest bit of a film (couldn’t decide between Bambi losing his mother or the ‘Daddy, my Daddy…’ bit of The Railway Children). It worked a treat, I managed to get through the whole thing without crying or feeling faint which is a first for me.
So, back on Thursday 15th for final set of full results and treatment plan but it’s all looking pretty good at the moment. Phew!
Rose x you take it easy babe xxx I went to big c with one of my girls to get a couple of lovely heart cushions that are made and can protect my boob gaps in the car etc on way home - got v v tired x now sitting on sofa with fire and cat on lap x ( not fire on lap - you know what I mean !) take care x
Ah, definitely no homeworking for you then Rose. Perhaps you could write a coaching book instead though, inbetween jigsaw puzzles? It’s the sort of thing I would buy Mind you, if I could cook I’d be baking too just for the pleasure of eating it all (lemon drizzle cake is the food of angels :heart:)
As well as looking after my Dad, I’ve spent my year away from work exploring London so I feel I’ve been out and about a lot. What I haven’t done is as much reading as normal and I’ve missed all the TV series that everyone has been raving about so my cunning plan for post-surgery is to read a lot and watch all of Breaking Bad, Broadchurch, Game of Thrones and that other one that everyone raved about (can’t remember the title now but it sounded fairly violent which puts me off, but I think I need to see at least a bit of it before I write it off)
I’ve got all sorts of other things I could do (wool, needles and a book that is supposed to teach me how to knit; new jigsaw puzzles that I got for Christmas; a calligraphy book and several cookery books from which I have made precisely no recipes, ever) but they all seem to involve a lot of arm movement so I don’t know how much they’ll help to fill the time. Still, the pictures are pretty…
