Scary stuff! 10th Jan -BC confirmed 18th Jan WLE, Axillary Clearance and Mammoplasty

Hello all, I’m 43 and a mum of 2 young boys. This is my first post as its been a whirlwind until now. I’ve read the site and it’s been hugely helpful but I know i’ll need more help on my journey… I’m hoping we’ll be able to help each other.
Aug/Sept 2012 - Noticed a change in breast - GP gave it all clear, no lump just appearance change so no referral. I thought it was age that had changed the appearance and as he’d said it was fine carried on as normal.
Dec 2012 - Still looked “different” and was concerned so I saw a different doctor - He said it was trouble and I could see in his eyes he knew it was a cancer.
Jan 2nd and 10th - Mammograms, fine needle biopsy, cancer diagnosis and core biopsy of node as inconclusinve - since confirmed as affected too.
Jan 18th Wide local excision, mammoplasty, axillary clearance - 2 nts hospital
Jan 20th - Home after op with a drain left in one side only.
Whoa! Will someone stop this rollercoaster that I never wanted to get on. I used to love thrill rides but this is one I really never wanted to get on… Well no one would choose to get on would they!
In less than a month my life and that of family and friends has changed forever! I will treasure the 43 years of bliss before this as I know things won’t be the same again. I know I am so very lucky to have got such a seemingly quick operation, thats thanks to my private healthcare with my job. (which I can’t now do cos my head is all over the place!)
They tell me its stage 1 but from the scan the lump was 3.5cm and all nodes were removed. I’m expecting them to change the stage but won’t know until lab results are back…
Will there be clear margins, will i need more surgery, when can I have a proper shower or a bath, that would be bliss right now! And when can I get a decent nights sleep. Everyone says I’m doing really well and I know I am, but I can’t help feeling like this is consuming me. What will my treatment plan be, radiotherapy then chemo and how long will it be for. I’m a planner and not being able to plan is the pits! I also work but haven’t been able to face that either. My Husband and Boys have been brilliant but they should not be having to go through this. I can’t help feeling bad for them. I wanted to be a normal wife and normal mummy and feel like this has been stolen from me.
Can anyone tell me how to relax please and cope with the waiting when all this is going on. I’m struggling to relax? Before the operation I managed my anxiety and fears through wandering around the shops so being reduced in mobility is a right pain.
Thank you in anticipation of your help.

Dear Tomka

I can see that you have not had a reply as yet to your post, so I am just bumping this up to the top of the latest posts for you.

I feel quite sure that you will be recieving lots of support very quickly, but in the meantime, fi you would like to talk to someone or have any questions, please do give our freephone helpline a call on 0808 800 6000 and an experienced helpiner or specialist nurse will be on hand to talk you through any of your concerns.

There is also a peer support service available either by phone or by email, the details are here breastcancercare.org.uk/breast-cancer-services/someone-talk/one-one-support and here breastcancercare.org.uk/one-one-peer-support-email

with best wishes

Anna

Hi Tomker you ask about how to relax when all this is going on - thats a really hard one! I think the ‘waiting’ for a treatment plan is the worst and if you are anything like me your mind leaps from complete denial, to very optimistic, to total ‘this is the end of my life’ in a matter of minutes. It is a roller coaster and some days you will feel incredibly calm and feel in control and others just a weeping mess who can’t think straight. Once they have the path results and you have a treatment plan it will be much easier and you know what you have to do and can get back some sort of control. In the meantime its the waiting game and that is part of the anxiety. I remember the early days well and for me they were dark and I felt there was no end to it. I used to go for nice long walks which did make me feel better and calmer and took my mind off what was happening - you don’t say when you have your results but in the meantime try not to think too far ahead. there are many many of us who have been through what you have and we are all here still and living ‘normal’ lives. I had to have chemo/rads and now on hormone theropy and can’t believe its 3 years since I was diagnosed (27th Januaryary 2010) I got through it and whilst my life has changed considerably I am still the girl I was deep down. lots of hugs xx

Hi Tomker,
im so sorry you find yourself here, you’re right it’s a rollercoaster, but one without many ups! Like you I was 43 on diagnosis just over a year ago married with a 4 year old daughter.
The waiting is just crap, it’s the worst possible time, your mind just goes into overdrive. I have to say though, why they told you it was stage 1 is beyond me, they can’t stage you until all of the pathology has been done and with a node being involved its not stage 1, I’m not saying that to frighten you, just makes me cross that they’re not being honest with you. The registrar who gave me my diagnosis told me I would only need radiotherapy, no chemo, my bcn however told me from the outset I’d have chemo due to my age, they should tell you as much as they can from the start in my opinion. However, I digress, I had a WLE and snb which resulted in a grade 2 19mm idc with a micromet on one node, clear margins, further surgery followed for an ANC, I came out with a drain which was removed 3 days later. I don’t think I had a proper bath for about 10 days or so after each op.
Once you have your results and treatment plan you will feel better and more in control, I promise. I’d expect them to advise chemo due to your age and lymph node involvement, it’s usually chemo first x 6, every 3 weeks, then radiotherapy, minimum 15 fractions.
in terms of managing your anxiety, I’m afraid my answer was diazepam, not all the time, just a small amount when things were really bad, I also took a couple before going for my results or don’t think my legs would have carried me in there. Unfortunately it will be on your mind 24/7 for the most part until those results are in.
I tried to stay upbeat and cheerful in front of my daughter but didn’t always manage it, she ended up having counselling at school once my treatment had finished as she was worrying about me, I felt terribly guilty about this, but once she’d got it off her chest she was ok and settled back to normal pretty quickly.
Do you know when you’re getting your results?
Take care
Lydia x

Hi Tomker,
Sorry you find yourself here.

You’re right waiting is the worst part, I think particularly when surgery happens so quickly after diagnosis, like you I was diagnosed then had surgery a week later, I got my results from the surgery 3 weeks later, saw the oncologist 3 weeks after that and don’t start my chemo for another 2 weeks. It seems like there’s a mad panic to get stuff started initially then everything stops and your left wondering whether this thing is time critical or not…

I have found the best way for me to control my anxiety is just to focus on the next thing I need to face and not look beyond that, no point in borrowing worries from tomorrow before you have to. Also I’m trying (though not always succeeding) to only worry about things that I can make a difference to, and leaving the rest to my medical team to worry about.

So initially it was the surgery, then trying to improve my movement and get over the surgery, then getting my prosthesis, and doing the arm exercises.

Now that I’ve seen my oncologist and I know I’m getting chemo and will be losing my hair I’ve been looking in to different head cover options, and then will focus on getting through the chemo and what practical things I can do to make it a little easier. This makes me feel like a still have a little bit of control. I’m not looking beyond that yet.

I also have a 2 1/2 year old at home, which does help as he keeps me busy.

Jo

Hi tomka , you sound so much like me it’s unreal how your world is turned upside down so quickly & you have no control of what’s happened either ! I am 41 & have a 6yr old , grade 3 idc 12mm & 1 lymph node out of 23 had cancer , I’ve had a WLE & ANC on 28th Dec & waiting for those results was the hardest time of all .
I carried on working up until surgery but couldn’t concentrate or handle any further stress so I’ve taken time off now , I echo what everyone else says you won’t think of anything else , I’ve never had a decent nights sleep since I first found my lump but walking & fresh air helps me especially when I don’t feel like it ! plus a good cry every now & then , i feel sorry for myself on a bad day , sob why me & then crack on with life ! this site is great for venting or asking , I’m following feb valentines thread as we are all at similar stages but there are loads of helpful threads & we’ve all been there even though everyones story is different , all of us will say the not knowing & waiting is the worst bit … i also felt better once my bandages could stay off although im struggling with the sensations of a numb armpit !! …Hang on in there !!
Karen x

Thank you so much Saffronseed. It’s lovely to hear from you and yes my mind is completely like yours. I’m having a good day today and at op plus 6 days have even been out to try to find a suitable support bra which is easier said than done when you have no idea what size you are and are still healing! I did manage to get a couple of bras, until now I’ve been wearing the soft support crop top type from MNS which have been fantastic as I’ve been able to step into them. They were £12.50 for 2 so comfy and a bargain too! It’s wonderful to hear you have got through it and I really apreciate your words of wisdom and hug. So a big hug right back to you. Kerry xx

Thank you Chascat. Its so lovely that you have posted to share your experience. It’s also lovely that you’ve given me an idea as to what to expect. I’ve asked the school to support my boys age 8 and 10 and they are being great. It’s a big year for my 10 year old as its his last year at primary school and I don’t want my treatment and illness to hamper his development and achievements.I’m seeing the surgeon who operated later so will ask him for more details but I think until the path reports are in he probably won’t know. Day by day and step by step eh. I hope that you are OK now and that things are starting to get back to “normal” for you. Thanks again, i really appreciate your help. Keri x

Thank you Jo80. I think you are spot on, one day at a time and I like your analagy about not borrowing worries. I will try to do that. I can relate to what you say and am like you trying to take it one day at a time. I have been told that I will need chemo and believe that due to my age this will come first so I have done a very little bit of reading but want to be able to plan. I’ve read about “headstrong” the support group who can tell you about scarves wigs etc. It’s scary but i’d rather be bald for a bit and still here! I’ve also read about cold caps which can reduce/prevent hair loss, is this something you’ve explored as I’d love to hear your views on it. All the very best for when your treatment does start. I’ve read there are groups for the month you start chemo etc so you never know we may end up in the same group there. Please keep in touch as it’d be lovely to hear how you are getting on. Children are a massive distraction and incentive but I can’t help feeling bad for my boys as they shouldn’t be having to go through this with me. Big hug, Keri x

Thank you Anna, your bumping has worked and several wonderful ladies have come on here to help me. I can’t thank you or them enough. It does really help to know you are not alone! Kind regards Keri x

Hi Karen, I’m sorry to hear you had to get on this rollercoaster too! I will try the fresh air when the snow has gone and pavments and paths are clearer. I don’t want my stitches to split LOL! I love the snow and should have been skiing this week but someone made different plans for me! Thanks for the info about the threads, this site is truly amazing as it allows you to contact and discuss things with likeminded people. I will have a look around them as I have lots of time on my hands and like to stay busy. I still have a drain in the side that had the cancer removed but am hopeful it will be removed tonight when I revisit the surgeon for him to check me over. The drain in the side that had reduction was taken out on day 2 so at least I only have 1 now! Not being able to shower properly has been the hardest thing about the op which sounds stupid but I hate being unclean and I’m craving a lovely bath!! Its amazing how your wants and needs are totally changed and the simple things in life are brought to the fore! I hope your results were as good as they could be, and that you have a treatment plan? What are they planning for you do you know just the next bit or all of it?
I share your ‘pain’ re numbness. I’ve got it in the back of my arm/armpit and also get an occasional shooting pain which is weird but doesnt hurt as such. I’m doing the exercises and they tell me it will settle, maybe in weeks but sometimes it can take months. You’re a few weeks ahead of me so I hope yours settles real soon.
Thanks very much for posting, I really appreciate it. All the very best Keri x

Hi Keri x I get my treatment plan tomorrow still waiting for date to start chemo but assuming it will be in next 2-3 weeks you everything has a wait attached to it when all you want is answers ASAP , most if us on the feb thread are getting concerned about our hair , I’m getting it cut short on friday into a trendy pixie cut just to ease the pain from long to bald !
Im like you on the clean issue I’m usually showered at least twice a day & not to be able to shave underarm is just gross however I’ve been amazed no smell despite hair & no deodorant … Still not going to go German shot putter once I’m better ( sorry what a thing to talk about !! )
Ive been getting those pains too, especially the sore yet numb feeling on the bingo wing , I would recommend massage for that shooting pain , ask your bcn how to do it, I went to physio & told im at risk of cording , my pain is still uncomfortable 3 weeks in , she did say I was only paying lip service to my massage & n should get stuck in a bit more now … Bleugh I’m just really squeamish … Keep massaging & doing the exercises , I’ve just ordered the leaflet & think it has a DVD in it
karen x

Hi Tomker,

If you’re anything like I was you’ll feel SO much better once the drains are out, the difference was huge, I hated my drains. Then once the dressings were off and I could have a proper bath I felt better again, and keep at the exercises, they really help.

I have turned down the cold cap, I don’t deal well with being cold, and the idea of having to sit for several hours with a really cold hat on is worse to me than the idea of losing my hair! After I told the chemo nurse that was what I had decided, she said she thought that with the regimen I’m going to be on the cold cap probably wouldn’t have worked that well anyway.

I know what you mean about feeling bad for the kids having to go through it with you. My son is only 2 1/2 so he doesn’t understand what is going on beyond Mummy sometimes can’t look after him at the moment.

Jo

Good luck for whatever the treatment plan contains and I hope they don’t delay the start for too long. The waiting is like many have said the worst bit so I’d best prepare myself for it as I’m a very impatient person. Perhaps this Cancer thing will teach me to slow down and live for and in the moment! You made me laugh re the German Shot Putter and it’s good to laugh so thanks! Gross thought but very funny. They told me I can use an electric shaver so I’ve now got hubbys battery one and it’s ace! I will ask about the pain tonight. Very best wishes and I’ll be thinking of you tomorrow. I’m sure there must be lots of info somewhere about the hair loss as so many before us have gone through it. Please do let me know if you find the cancer bible to chemo and hair loss. Aren’t cold caps supposed to help some people? Thanks for your help and for the info. Kerry x

Hello Ladies
Just reading your posts took me right back there. I will be 4 years down the line in May 2013. I was dx in May 09 at 37 and had the works! It is a rollercoaster with not many ups, but hang on in there… Once you have your treatment plans you will feel like you are more in control and plan your lives around hospital visits. You will be surprised how quickly it goes, living your life in 3 week chunks! It won’t be easy at times, but it is doable. Be kind to yourselves, look after yourselves and dig those heels in!!! You will beat this!
Hugs to you all.
Jayney
xx

Thanks Jayney. It’s heartwarming to hear from you and see how encouraging you are. It’s brilliant that you are still taking the time to inspire us newbies so thank you again. Well done for getting through it and thanks for the hugs they are very much appreciated and a big hug back for what you are still doing. Kerry xx

Thanks Jo 80, It’s great to hear what others have decided and why as it’s all so new to me still. Drain came out earlier so that was wonderful although there was still a little dribble so I have to go back tomorrow for them to see if it needs a bag on it (forgotten the technical term!). It’s like i’ve lost my phone though not having to carry the pouch around - Great to have lost that phone though LOL! Huge relief as there was never anywhere to put it! It’s hard with the kids as I don’t know exactly what i will be like so don’t know how to prepare them for it but one step at a time. They know I’ve had the cancerous lump removed and will need other treatments and drugs which will make me poorly but not knowing how poorly means I dont think I’ve prepared them enough. There is still time while my lump is in the lab and a treatment plan is drawn up so I can read and ask the necessary questions over the coming weeks. Again, good luck with your journey. Kerry x

Hi Kerry ,
I did the Cold Cap treatment and it worked very well for me !! I think it is well worth giving it a go as I did not find it too difficult. If you decide to try it I would recommend you to wrap up really warm for the Chemo Suite, taking a big scarf and gloves. I also took a hot water bottle with me to keep my hands warm and my veins easier for the nurses. Another tip is to drink lots and lots of water the day before Chemo and during the treatment. I washed my hair every single day just as normal , using baby shampoo. I still blow dryed it and used mousse and hairspray . I was very lucky that my hair only thinned , it did fall out on my pillow and in the shower but I never had to wear my wig. I used my hat when I came home from Chemo just to keep my head warm as I had treatment during Sept to Feb 2010. Good luck with it all and please let us know waht you decide and feel free to ask me any other questions on hair loss as I know I have not covered everything here.
Sending you love , hugs and positive vibes. Tracy xxx

Thanks Tracy. This is very useful to read and I will definately use your tips if I can go that route. This is just the sort of info you need as whilst I’ve not read much about all of this yet I can’t imagine it will suggest all that you have on here. Many many thanks for taking the time to help me and I hope you are well and recovered now. Love and a big hug to say thanks, Keri xx