I went back to the hospital yesterday for the final set of results and all my pre-op assessments and here’s what I learned:
I will definitely be having a right breast mx
I have 3 different types of cancer - lobular and ductal invasive and dcis as well as the cancerous micro calcifications, and classed as a provisional grade 2. I also have 2 suspicious lumps in my left breast that require further investigation. I was supposed to be having SNLB but that’s been abandoned in favour of removing most or all of the nodes instead. There is also a 60%+ chance that I will require chemo afterwards too. The only bit of good news is that I’m oestrogen positive so I will be able to have hormone therapy.
My surgery will be on the 10th November.
I am feeling completely overwhelmed by it all. Up until now I’ve been able to take a practical/positive approach to it all but that’s getting really hard as the reality of it all sinks in. My breast care nurse told me to go back to my GP and get some more sleeping pills as she was concerned about me getting run down through lack of sleep, so I’ll be doing that at the start of next week.
Meanwhile I’m just numb from it all, plus it doesn’t help that we’ve had terrible broadband problems meaning sometimes it’s either off all day or only available for an hour or so. BT is struggling to sort it out and living so far away from family and friends I rely on the internet to be able to talk to them all and to be able to come here!
Sorry to hear your additional news, but at least now you have a plan of action starting to cone together. Oh dear, just re-read that and I sound like hannible from the a team!
I know how vital staying in contact is, it’s been a lifeline to me. Chemo etc are hard but having the ability to keep in touch with people does help. My broadband and laptop play up too, so I got an iPhone and this helps me stay in touch much more and is easy to use. I am posting from it now as laptops dead again. Maybe treat yourself to a new mobile as a back up? You can watch programmes etc too on this . Oh god, now am sounding like an iPhone advert too.!
You will get past this horrible time I promise you. Just be ultra kind to yourself and get that sleep as you need your strength.
I thought about breast cancer alot while i was waiting for results thought i was prepared for the news how wrong was i what you are feeling is very normal and hard to come to terms with. when your treatment starts you may feel differnt again and see things in a different light, at the moment try and take each dasy as is cums and enjoy your momments take care
Hi there, I just wanted to send my love and to tell you that although you of course feel totally overwhelmed now just try to hold on to the thought that once you know where you are and have a plan it will all start to feel so much better and manageable. I know that will sound mad and I used to think so too, when my doctor said at the early stage of my diagnosis that I this was the worst point I used to say in my head, no the worst point will be if you tell me you can’t do anymore. But you do get to a point where you can cope and life is happy again, although the pain and worry doesn’t go away of course we all know that, but if I had known then that I would have managed the anxiety and fear, the surgeries and the chemo (where I am now) I would never have believed it. I had tricky diagnostic journey with lobular cancer and three large tumours, all grade 2. I had my nodes out after they were checked during my mastectomy (having been told they were clear prior) and three were involved. That led to chemo, soon radiotherapy and drug treatment to follow. I used to sit paralysed with fear, could hardly look at my kids and shook at the thought of the MRI i had to have. I coped by making telling myself all I had to do was to get to lunchtime/bedtime/ the next cup of tea - whatever worked and by getting my sleep even though this meant sleeping pills. I soon learnt that i coped so much better when I wasn’t tired. I looked for things I could do to help myself rather than concentrate on the diagnosis. So I started a new healthy eating regime which would help me be fit for surgery and taking vits etc.I went for a session of hypnotherapy to help with my anxiety management and learnt for the first time to lean on others and to ask people to be with me when they could. There is only so much your mind can take and it will help you by blocking out things when it all gets too much. We are incredibly adaptable and manage the once thought unmanageable. The human spirit really is an amazing thing, None of it is as bad as you imagine it will be and you will be helped every step by some stunning people you will meet along the way. I thought I would collapse at the thought of stepping into the oncology dept, now it feels like a safe and good place and I go in and out like its Sainsbury’s! Its a place thats getting me well. I am so not brave but I have learnt that I can cope with the unthinkable and I am strong. You are too, look what you have coped with so far. Once you have a plan you can start putting it all in place - I wish you lots of love - remember one day all this will be a distant memory, thats what I hope and believe for us all xxxxxxx
hi i have mx tomorrow. had lumpectomy and reexcision but failed to clear 1 margin. 1 lymph node affected will need chemo prob rads. not had aux clearance and told i will not need surgery to lymph nodes. Scared i sure am and would like to hear from others going through same at the moment.
hugs to all x x
Nymeria, not sure how I missed this thread - but hope you’re doing ok, and managing to get more sleep during this awful time. xxx
Summer11 - good luck for today - I’m still at the waiting for pre-op stage… just wanted to send hugs back, and hope to hear from you after when you’re feeling a little brighter and are safely home again.
Hi Nimeria, I heartily second what woodlandmanor says!
I too have had a painful slide to a dx of grade 3 stage 3 IDC (four nodes so far,but that’s only the ones taken at SNB, maybe more). I too am a really practical person who has been overwhelmed, I know how you’re feeling.
I thought I would get away with WLE and Rads at first, now its Chemo, Mx, Rads and tablets (ER+ too, same as you). It’s been complicated for me by something they found on the CT scan too and I have to have a biopsy tomorrow before they will get my plan together and start chemo!
Pay attention to the good moments, don’t fret about the bad ones. This will bottom out and we can start climbing back up to ‘normal’ soon, albeit with a changed diet and a whole new perspective on life!
Good luck for the 10th, P xxx
Ps. Am also on sleeping pills, + Laptop packed up the other morning and I nearly threw it out the window with frustration!! family and friends are scattered aroung the country too…
summer11,i had a lumpectomy first went back for the results and i had 17mmgrade 3 tumour with cancer in the one lymph node they took out,i went back and had a mascectomy,lymph node clearance but th results of that was all clear,i had chemo,radio and im a year down the line waitin for my reconstruction,you can do this and things will get better love x
hi nymeria just to say good luck for the 10th nov i had right mx this time last year the 12th nov its the waiting and trying to keep b usy thats hard. hugs missmessy
summer11 good luck for today thinking of you love missmessy
Thanks everyone, I’ve been away for a bit - a combination of a few days away and more bad broadband service.
I’ve now got some sleeping pills and they are helping, my GP also said that if I ever just wanted to talk I could ring up and ask for an appt at the end of surgery and whoever was free would sit and listen, which was a wonderful thing to offer when they are so busy.
We’ve been away with friends for a few days and that was mixed as I had times where all I could do was cry but there were good moments too. I am trying to take each day as it comes and not think too far into the future for the moment, plus I’ve also started a blog to document my progress, as I am finding it helps to write things down.
My family being so far away has made things difficult but I am so lucky having BCC to come to - you make all the difference!
Now I am just planning the day to day things like stocking up the freezer, hopefully finally buying that elusive post-op bra and making a list of all the things I need to do before next wednesday.
Hi Nymeria - good to hear that you’re hanging on in there, and just good to hear from you again!
A blog is a good idea - I’ve thought about that, but haven’t got a clue how to start. Maybe I can rope my son in to help me set one up, get in a bit of sneaky mother/son time (he’s 16, it’s not always easy!), and find an outlet for my thoughts at the same time. I’d love to read your blog, if that’s allowed!
A week today for you, then - it’s slowly creeping up on us. I’m in two days later - so I’ll be anxiously watching for your posts, to see what I can expect! (Ha - YOU go first…shove…and I’ll watch for a bit…).
Huge hugs coming your way, have ‘fun’ freezer shopping - and let us know if you find the perfect post-op bra. The way I’m progressing on that one, I’ll be going home bra-less, or wearing a tankini top…!! Don’t forget your pjs… that’s the one thing I will def. have to buy before next Friday!
Hi girls asda do a reasonably priced cotton post -op bra and i also got a couple of cheap cotton soft really comfy bras for £ 3 for two ive still been wearing them for Rads as it doesnt matter if they get ruined with the pen markers and they are so comfy and soft dont rub or dig in . xx Julie
Yesterday I finally managed to get a post-op bra in my size, all thanks to the truly wonderful staff at Banbury’s dept store in Barnstaple who spent a lot of time hunting one down for me. It’s nice and comfy and front fastening, just what I needed.
I’m also in proud possession of some nice new PJs and undies, and have done all the shopping needed for the house in one fell swoop - it’s such a relief to have it all sorted!
This morning I had a lovely call from my BC nurse - my surgeon decided that it was going to cause me far too much worry and hassle trying to sort when I should take all my anti-seizure and vasculitis meds before my op, so he’s arranged for me to go in a day early. They will put me on a drip and give me all the meds by IV, plus make sure that I have a really quiet night’s sleep. Isn’t that a nice thing to do? So I’m going in on the 9th instead of the 10th - not long now!
With regard to blogs - there’s a link to mine in my profile and you can also get to it by going straight to the site: ondineblue.blogspot.com/
There’s not a huge amount on it yet as I’ve only just started it but I’ll be trying to update it as often as I can. Blogspot is very easy to use and set up if anyone else wants to start their own blog. I can personally vouch for it being very therapeutic.
Hi Nymeria - I’m glad that the hospital is going to cater to your every need, and let you get a good night’s sleep ahead of your op. I’ll be thinking of you on the 10th (as I go for my pre-op!), and look forward very much to hearing from you afterwards. Big love and hugs to you xxx
I got new pyjamas today - I went for button front top, good old QS, £8, and they have dog paw prints all over them! I shall be the most overgrown toddler on the ward. I went into M&S and talked to the bra fitter there, who was lovely, and recommended I go in six weeks post-op to be properly measured, but in the meantime, I picked up a couple of their vest tops with the built in bra - covers cup size B-D, and I know my remaining boob will fall somewhere in that category!! I’ve tried them on, and I think they’ll do me just fine to start with.
I also treated myself to travel size washkit stuff, which I don’t technically need… but I like the little dinky shampoos and hand creams, lol… and I’m worth it! But I did forget about new knickers…
Food shopping tomorrow, to stock up fridge and freezer with stuff that everyone will be able to cook whilst I’m out of action, then I really should do the housework…
I’ll check out your blog, and thanks for the link - I’ll check out blogspot - maybe if I waffle on there, I can learn to keep my posts here a little shorter…lmao.
oh girls this so takes me back to my pyjama and new knicker shopping days . I so definately recommend front opening pj tops as they are so much easier to get on and off when youre still a bit sore and for being examined etc xxxx hope all goes well for you both take care Juliex
I did think front opening would make life easier - particularly for wound/dressing checks etc - so I’m glad that was a good decision! Shame, though, cos there were these gorgeous fluffy fleecy pjs, but with a vest top… (and which would have been far too hot for hospital, thinking about it!!). Shopping is def. therapeutic in my book, so quite happy to do that today! Not sure when I’m going to have a chance to get new knicks, though…lol… and actually, I really do need some that are a bit less shameful and saggy!!! Maybe I can squeeze in a quick side trip to Tesco between my pre-op appt and going back into work… yup. Quite sure I can wangle that one!!!
The canvas ‘satchel’ type shoulder bag I was thinking of is possibly not really big enough for the drains… a lovely lady on here sent me a pic of what they look like, and I wasn’t expecting there to be so much of them!!! Not quite sure I’d particularly want to use the bag afterwards, though… so not sure I’m investing in a new shoulder bag just for that! My daughter has a spongebob squarepants shoulder tote… that would be nice and cheerful, wouldn’t it?! That would prob. do the job fine - so long as I didn’t get mugged by a toddler…hehehe.
Just a couple of days to go and I’m starting to get really nervous now but my OH is being very good, plying me with chocolate and other goodies. Plus I’ve had some lovely presents from friends to help make my stay in hospital nicer.
I went for front fastening PJs too because my BCN said that was by far the best thing to have - I’ve got some very loud pink ones!
The M&S camisoles sound like an excellent idea so I think I’ll definitely invest in a couple.
My BCN says that she thinks I’ll probably be kept in until my drains are out rather than sending me home earlier. This is because of my underlying illness - it causes circulatory problems, as well as significantly slower healing times. I think that because it’s such a complicated illness to treat generally, and quite rare, they are going to monitor me for longer just to be on the safe side, which is absolutely fine by me!
I found it hard to sleep when I was in following my Mx (4 nights in hospital, 7 weeks ago) and there is nothing worse than being unable to sleep for me. I took my i-pod (loaded with guided meditations and podcasts as well as music) and that was very useful, as I did not disturb anyone and found that it got me off to sleep without too much bother rather than listening to others int he ward snoring(!) or the nurses doing their rounds.
I also took in a “sausage” cushion - they are £3.00 in Tescos, and are filled with those polystyrene micro beads. What a useful item that was. I popped it under my neck, or under my Mx side arm, under the small of my back (I had to lay on my back and it ached a bit) and when I went home, I popped it under the seatbelt in the car as it was painful otherwise. I still use it at night under my Mx side arm if I need it.
I found the post-op bra was awful, so uncomfortable despite it being fairly soft. I wore support vests and got a pack of 2 Sloggi pull on sports bras which are soft and comfortable. In fact, I am still wearing these with a softie stuffed in on my “real” side to match my reconstructed side till I have final op.
Can’t think of much else - the only other thing I did was take a picture with my mobile of the Mx every morning when I went in the bathroom, now I have a record of how it progressed. A bit ghoulish but I wanted to do it.
