BC in other breast within a year of 1st diagnosis

[Snoozysuz]

Hi girls, I know it’s been months but just wondering how everyone is doing? I’m back at work now and almost back to normal. Next mastectomy is booked for March next year but at least I know what to expect now!

Hope everyone is doing ok, been thinking of you all and wondering how you’re all doing xx

[Unicorngirlmummy]

It’s awful isn’t it, if you even cough your mind instantly goes there! As much as I love the relaxed mornings etc, I’m looking forward to getting back to school routine! (I think!). Hope the spots aren’t painful xx

[Warcol]

Bliney Unicorn you are going through it! Hoping your getting plenty of rest I’m recovering from 3rd chemo cycle although worrying because I have lots of boils/spots popping in everywhere so obv my mind is veering towards skin mets! Onc looked at previous ones and didn’t seem concerned but I’ll be asking for them to be checked again when I next go
Kids are going back to school so hopefully a routine will be maintained
Love to everyone xxx

[Unicorngirlmummy]

Hi ladies,

How is everyone? Sorry for the silence. I had a third recurrence & then all the appointments that go with that. Plus it’s the school holidays. I had a DIEP reconstruction almost 2 weeks ago & starting to feel normal again!

Hope everyone is doing ok xx

[Warcol]

Thanks Delly
I’m in my good week so making the most of it! Next chemo is Monday so plan to enjoy the weekend as much as I can! Oncologist has agreed to slightly reduce next week due to how bad the side effects were so I’m
Hoping it’s kinder this time
Have a lovely weekend ladies love Colista 😘

[delly]

Hi Snoozy
If the skin is moist and "open" where your nail was, it isn't a good idea to use an acrylic. You need it to be healed. Try using Betadine solution ( ask for a small bottle at your chemist), it's one of the best antiseptics you can get. What they use to swab skin down with pre-op. Put a couple of drops on the area, cover with a plaster, making sure it's covered with the lint pad, not the sticky and keep it dry. Replace with fresh if it gets wet or comes off and repeat until it's healed.
Colista - hope your tum stays settled.

Lotsa love girls xxxxxx

[Snoozysuz]

Thanks Colista, my last chemo was weeks ago tho I thought I’d escaped. Have got gel varnish on to stop nails breaking and to hide how ugly they look. This one nail has broken really low down but my daughter has suggested fixing it with acrylic but not sure if that’s a good idea. Just when I thought I was getting back to normal too 🙄

[Warcol]

Hi snoozysuz

yeah I lost all fingernails and toenails last time. It’s normally the taxol that does it and it’s normally towards end of chemo. I used to put plasters on which made me look like Michael Jackson 😂 but take off in evening so air can get to them. The new nail should be coming through and it doesn’t take to long xx

[Snoozysuz]

Hi girls, have any of you lost any fingernails through chemo before. Didn’t lose any last year but tonight one fell off and I don’t know what to do with it. Do I put a plaster on it to protect it, the skin is so soft underneath. Don’t know if that could get full of backteria as it’s moist. I’m so squeamish. Bloody typical my hair starts growing back and my nails fall off!

[Warcol]

Hi everyone
I ended up at hospital Thursday as still having toileting issues - positive is there was no infection - Negative I’m just unlucky with the side effects 😆
The weekend though and I’m happy to say I’m
Feeling back to normal so at least I’ll get one good week before the chemo bus hits again!
Taste is shocking but just keeping something in makes me 😃
Have a great weekend everyone love Colista 😘😘

[delly]

Snoozy - Wow, that's great on your clear results. You could have used a bucket whilst sitting on the loo, but at least you didn't need to! Happy inflating!!
Warcol/Colista - Am not impressed with your OH, that's a really poor show. Shall I send a food parcel? Hope you're feeling better today.
Love to everyone xxxxxx

[Snoozysuz]

I don’t know what was worse with chemo, the constipation or the opposite. You take the medication and it just sends you the other way.

Or is it sickness you’re talking about. If the anti sickness tablets they have you aren’t working ask for something else. There are loads they can try you with. I was so lucky as I didn’t suffer from sickness. Good job as I couldn’t get up from sitting on the toilet and the bath is too far away 😂

Seriously though hope you start to feel better soon Colista xx

[Warcol]

Good news snoozy! Take it easy going back to work - make sure your not overdoing it x

I thought I was feeling better but alas I’ve not left the toilet today! Just wish I could eat something and it stays inside xx

[Snoozysuz]

Hey girls. Lovely to hear from you Delly, hope you are well. How you feeling now Colista?

Unicorngirlmummy how’s it going with you?

I was back seeing surgeon yesterday and he’s happy with the way I’m healing, although drained a lot of liquid from wound and l look a lot more deflated now. Back on 27th Aug to start pumping me up. Surgeon wants to wait a good while before doing the right breast due to rads last year so thinking maybe end of the year. Good news is pathology came back clear so I’m cancer free again and I don’t need rads this time. Can go back to work in a few weeks too, although I’m dreading it, but that’s another story.

Big hugs to everyone xx

[Warcol]

Well chemo bus has well and truly hit me! OH is useless so I’ve had to drag myself out of bed just to feed myself! Gonna be a long day :-(

[Jill1998]

I now have a repeat performance with the ESA health assessment next week .

[Jill1998]

I had PIP assessment it is totally soul destroying I agree -they make you feel so pathetic don't they and some of the questions are just ridiculous -I was absolutely exhausted afterwards .

[Warcol]

Gin, vodka everything you can add to the line lol! First few days I’ve been done but OMG I’ve been hit by a bus today! Also had face to face pip assessment yesterday and how soul destroying! Think the weekend will be a bed weekend x hope everyone else is doing well xx

[delly]

Awwwww Girls,

I've just popped in to give some loving sympathy and to wish you some strength through your treatments. Sounds bl**dy awful for you's. Shall I ask them to add some voddie to your chemo in line, Warcol? or should I say Colista - Wow, what a gorgeous name!!  

Snoozy - Hope you're all healed from your op now? Yeh, I know what you mean on "enjoying" your hospital stay. Living on my own, I actually thrive on the company whenever I've had to go in. Sad innit! So you're waiting on your implant inflations? I'm sure that'll make you feel a bit better. Hope so.

Unicorngirlmummy - What news on you? How are you doing?? That's all a bit bo**ox on your where your surgery is/was to be. Hope you're okay, as it's a while since you posted here. Lets us know when you're up to it.

Wishing you lots more PIPS and sending loadsa love

Dellywelly xxxxxxx

[Snoozysuz]

Aw Warcol it’s a long day isn’t it, my 1st one was 8 hours, I had tax, carbo and Herceptin, get Herceptin jags every 3 weeks now till Jan so still not free of trips to the chemo ward, luckily I’ve made a few friends on the way so it’s nice to catch up.

I got my letter from PIP today, I got the standard rate but didn’t get mobility. Apparently I’m capable of walking 50m! I’m not even going to argue, but looking at the points I got I just made it. Pity my interview wasn’t just after surgery instead of the week before.

Hope your side effects aren’t too rough but rough enough for PIP!xx

[Warcol]

Hello snoozysuz
I have been 2 years clear since my last lot but agree I know what to expect now! I had FEC-T first time round but this time as I’ve gone from triple neg to triple positive I will be having TCHP which is Taxol, Carboplatin, Herceptin and Perjeta
Started well and just about to start the first lot- I’m being told I’ll be here for at least another 6.5 hours after being here since 9 this morning so my bag I’ve bought of goodies should feed the ward 😂

[Snoozysuz]

Warcol good luck with chemo, I did the same, ate all the food I knew I went off with chemo 1st round. What chemo are you having? I know everyone is different but I found it a little bit easier going 2nd time round, don’t know if it’s cos I knew what to expect or if it’s because I was so determined not to let it break me again. Maybe it was because I still hadn’t fully recovered from the last lot so I’m still so tired all the time I didn’t notice a difference lol. Big hugs to you anyway - you go girl xx

[Warcol]

Glad the op went well Snoozysuz! I’m having a pip interview Thursday which should fall in line with my chemo side effects so fingers crossed

had a blow out with food and drink today as starting chemo tomorrow so made sure I tasted everything today 🤣

have a good week everyone Colista xxx

[Snoozysuz]

Hi girls, op went well, still a bit nippy. I was in hospital for 5 days but actually quite enjoyed my stay, I was the youngest one there but quite enjoyed the company of the old dears in there. I got sent home with my drain which was horrible as I didn’t like moving about with it in. Got it out yesterday but I’m still leaking, my wee girl is helping me change the soggy dressings. Hate the feel of my boob with the deflated implant, can’t wait till they start pumping me up. Still got my nipple too. At the moment it looks like Sloth from the Goonies 😂.

I got PIP but not actually sure what I’m getting as money in my bank but not had a letter yet. It’s not a huge amount if it’s backdated so assuming I didn’t get full amount. Still think cancer sufferers should get full amount regardless!

Anyway how is everyone else doing?xx

[Unicorngirlmummy]

How did your surgery go Susan? Hope you’re feeling ok?

I hope your results were good warcol 🤞 xx

[Snoozysuz]

Hey girls. Aw Unicorngirlmummy I’m so sorry. Why can’t they operate. I hope they manage to find a solution. Big hugs and thinking about you.

Haven’t found out if I got PIP yet, could take up to another 4 weeks. I hope to god I do tho as been signed off for another 3 months. The interview wasn’t as bad as I thought, don’t know if that’s a good thing or not tho.

I’m bricking it for tomo, I am such a woos. I just hate the anaesthetic and worried what I’ll be like when I come round, and how I react to what’s left of my boob.

Why us, it’s just no fair.

Hope everyone else is good and enjoying the sun despite everything we’re going through. Big hugs to you all xxx

[Unicorngirlmummy]

Good luck for surgery tomorrow Susan, I hope you’re feeling ok. Let us know how you get on xx

[Unicorngirlmummy]

Evening ladies, how is everyone?

Did you get awarded the pip Susan?

That’s awful to have to wait so long for your results warcol 😐

So yes, mine is back for a 4th time! It came back 6 weeks after surgery. My surgeon can’t operate so I’ve been referred to another hospital to see if a surgeon there can operate. If not, then a referral to one of the London hospitals.

I daren’t cry or I might not stop! But yes, it makes you very emotional!

Hope everyone is ok xx

[Jill1998]

Yes I got awarded PIP -the whole process is pretty unpleasant but Im very glad to receive it as I lost my job due to all the physical and mental health fallout .Snoozy -don't Hoover your house and blub away - they really are judging you on what they see and you need them to see you on a bad day .

[Jill1998]

So sorry you got bad news Warcol - fingers crossed for your scans 🤞🤞🤞🤞.

[Warcol]

So today has not gone as planned Its spread to lymph nodes 😢 so now got to have PET\CT and bone scan to see if anywhere else and terminal or whether it’s still curable!! Will see oncologist on 2nd July as gonna have chemo first before they remove all nodes as grade has been upped from grade 2 to grade 3 as it’s
More aggressive than first thought so no need to have oncotype test now x more anxious waiting and heads thinking all sorts 😢

[Snoozysuz]

Hi girls, hope your all well. My surgery is booked for the 4th July and I’m bricking it, but kids are away with their dad so timing is good. After much tooing and froing im going for a single mastectomy with expander recon. I was getting the double but surgeon suggested not having recon till next year but I just can’t do it. It might be fickle but I need boobs. If all heals well I’ll get the right boob done later in year. I want to be recovered next year and put all this behind me, not be having more surgery and be off work again. Chemo is all finished and I’m not too bad but oncologist doesn’t want me going back to work in case I pick up an infection and have to put surgery back.

I have my PIP interview next Tuesday and they coming to my house. Don’t know whether to do the housework or leave it so they see how I normally live. My fingers are so bad with the neuropathy everything is a struggle! I’m dreading it tho, I’m such an emotional wreck just now I’m scared I blub my way through it!

I’m just glad the school hols start in a fortnight so we can chill and I don’t have to get up early. Just back from my daughters end of year show and yip, I cried. Can only imagine what I’ll be like next week when she leaves Primary school for good. Is anyone else an emotional wreck?

[Warcol]

Hey ladies
Apologies it’s been all go! I had MRI after much chasing and got results week later! Tumour was 2cm and they said they still believed nodes to be clear! I had WLE week later and sentinel node biopsy (that was 2 weeks ago) my arms this time has been painful and my scar keeps bleeding! Each week I’m being drained of 50ml! Tomorrow is my results day to see whether clear margins and clear nodes so bricking it a little as I’m convinced my node is infected! It will obv depend on results on what happens I.e whether I need further surgery or whether I go onto chemo!

After doing some research I’m also going to ask for the oncotype test to see whether chemo will be of a benefit so that may delay things but I think if my nodes are positive then I’ll not bother and move straight to chemo!

Why is there so many decisions to make and why do we always have to wait for what seems forever

Keeping positive Unicorngirlmummy and Jill have you heard re PIP as I’ve just applied and due to chemo brain from 1st time around I’ve forgotten to attach any letter etc! Haven’t heard anything myself but been told the interview is awful 😘

[Unicorngirlmummy]

Evening ladies, how is everyone? Have you had your surgery yet Susan? I hope you’re feeling stronger?

I’ve been back at work 4 weeks. Found another lump after 2 weeks, they think it’s an internal stitch or scar tissue, the ultrasound doesn’t show anything so they’ll just monitor it. It’s nice to be back at work as it makes me feel like me. Typically my next CT & oncology appointment fall on days I have courses on, sometimes feels like as hard as I try to move forward, the obstacles keep coming my way!!

Hope you’re all ok xx

[Snoozysuz]

Hi girls, good to hear from you Delly, hope you’re doing ok, Warcol how are you doing? And Unicorngirllass what’s the news with you? Are you getting more treatment?

I had my final chemo yesterday, it was supposed to be last Fri but for the 1st time it was postponed as my red blood count was low, which explains why I’ve been feeling so tired. The downside is it’s bumped my Herceptin schedule which is every 3 saturdays until Jan, so I’ll miss my chemo buddies that I’ve made.

Saw my surgeon and plastic surgeon on Mon. He is trying to book a theatre for a 10-14 hour op in the next 4 weeks for the double mastectomy. But it might not be in the hospital I’ve had all my treatment which I’m upset about, it’s further out and I’m worried I won’t get visitors. If he can’t he just wants to do the one boob and the other in a few months which I don’t want. I need to get back to work I’m skint, I want it all over and done with. So he’s given me another option, instead of the flaps op from my back, he’ll put expanders in which get inflated every month until I’m happy with them. There is a 1 in 3 chance of failure tho due to radiotherapy last year. I’m also now getting to keep my nipples but there will be no sensation which is fine, but at least they will be there.

So still more decisions to make. Honestly chemo is the easy part. At least with the expanders I’ll have less recover and no scars on my back, and if they do fail we can then do the flaps surgery as a back up.

Hope you girls are all doing ok, looking forward to hearing your news. Big hugs to you all xx

[delly]

Hey girls
Thanks for asking. Apologies, haven't checked in on yers for a while, but am still here.
Snoozy - that's such brill news on your tumour shrinkage. You, my dear, are such a "Queen". I love Unicorns praise of you, so justified. Oooo-errr Unicorn, on shared images of your bum and flapping gown!!!
What's the latest on you all??
Much love to you all xxxxxx

[Unicorngirlmummy]

Hey Susan, how are you getting on?
Warcol, how are things with you? Big hugs xx

[Snoozysuz]

Well had my scan, still not the right boob!! Have requested again just for peace of mind. On the plus side the tumour in left boob is now 5mm down from 13mm on 6 April. I just don’t understand, they say they don’t want to scan right breast too often yet left breast been scanned 5 times this year alone.

Anyway hope everyone is doing ok. Delly you’ve been very quiet, hope you’re doing ok xxx

[Unicorngirlmummy]

Sorry you’re having such a tough time Susan. Blimey, 2 stone, well at least there’s a good thing to come out your scumbag ex doing what he did. More fool his new girlfriend for taking on someone who can do that 😡 I hope you have some luck with the pip and fingers crossed for fridays scan. My remaining breast gets pain but I’ve had a mammogram and ultrasound and thankfully they were normal. I’m seeing the oncologist tomorrow so I’ll find out more then 😬 Warcol, I hope you hear soon about your MRI, all the waiting really is the worst part, that constant hideous feeling in your stomach. I remember my MRI, kneeling with my bum in the air, gown flapping around trying to lower my boobs into the square cut outs! Not a pretty sight! 😂 Big hugs xxx

[Snoozysuz]

Warcol - Hope your coil removal wasn’t too uncomfortable. I wasn’t supposed to get an MRI scan but my liver scan was inconclusive so I got one on the end. Was a bit of a relief actually as I was so scared it had spread but I was lucky. I started chemo just over 3 weeks from my 2nd diagnosis, I can’t fault my cancer team really. My only complaint is I asked for my right boob to be checked again and it kept getting missed, my boobs are out of sync with scans but going on Fri finally. I’m just paranoid that after the 2nd diagnosis something might be lurking.

I also never applied for PIP last time but thought I deserve it this time. Got a txt back today that they have my form, now the decision as to the dreaded interview. You would think cancer would be automatic.

Hope your hear about your MRI soon xx

[Warcol]

Thanks for all the comments ladies! I’m still nervously waiting for the MRI - I chased hospital yesterday and I’m hoping I hear today or tomorrow! I’ve booked an appt for my coil removal so go that to look forward to tomorrow! I’ve also started the pip process as I didn’t claim last time when I should have!
Love and luck to everyone xxx

[Jill1998]

The interview is as soul destroying as the form I'm afraid - and yes you really need to tell them you on at your worst . I looked at this site for some tips - it helped a bit .
https://www.turn2us.org.uk/Benefit-guides/Claiming-Personal-Independence-Payment-(PIP)/Get-ready-for...

[Snoozysuz]

Thanks Jill, It really is, dreading the interview stage if I get that far. I had a lovely woman from Macmillan fill the form in for me. She said be honest and imagine yourself at your worst. It was 5 days after chemo, I couldn’t get any worse lol. What we have to go through for a little help!

[Jill1998]

Sending you understanding hugs SnoozySuz re PIP form - soul destroying experience listing what you can't do and focussing on the negatives!!

[Snoozysuz]

Hey girls, sorry not been on a while, I’ve been in a pretty dark place recently, 5th Chemo was a bitch, but I’ve lost 2stone so they going to lower last dose next fri for final chemo. My right breast (where the original TN cancer was) has been tender so getting scans on Fri, hoping it’s nothing. I’m def having the double mastectomy and recon, just waiting on a date. I have spoke to a few male friends who assure me a decent man won’t be put off, so feeling a bit more positive. Unfortunately I’m going through the ‘missing him’ stage which I hate myself for, cos he is a d**k for cheating and giving up on me.

Anyway my problems are small. Unicorngirlmummy I’m so sorry. What are they saying? What treatment are they planning. Wishing I could give you a big hug. Cancer really really is a biatch. It is so unfair.

Hi Warcol, I’m also 43, with a 12 and 16 year old. Sorry your having to go through this again. I don’t know much about your cancer, I didn’t ask too much 2nd time, it’s not TN this time and is Herceptin positive so I’ll be getting Herceptin jags until Jan. my last chemo is next fri. All I can say is I’m trying to stay as positive as possible for the kids, we only had a 6 month break from end of last treatment but they were used to seeing me tired so nothing new for them this time. I won’t be getting tamoxifen tho. Youll get a few tests before they decide on treatment, those for me were the scariest bit luckily it hadn’t spread. We’ll be here for you if need to let off steam.

My fingers are really bad now, can’t do buttons or chop onions. Also been having terrible nightmares so been put on sleeping tablets. They don’t work. I know a lot of this is to do with the break up but I’m turning into a nervous wreck. I’ll even admit I had a tiny thought that it would be easier if I wasn’t here. But that didn’t last long. I’ve come too far and would never ever do that to my kids. It’s a horrible place to be. It was after I filled my PIP form in, have been persuaded to apply for it after going on sick pay and it’s a horrible form to fill in. Makes you face up to your illness.

Enough from me, hope all you other ladies are doing fine. Delly how are you doing? Big hugs to everyone xxx

[Unicorngirlmummy]

Hi ladies, So sorry that you have to through this again warcol. I’m also 43, my youngest is 10. I have TN so don’t have any advice but just wanted to say hello and send a hug. I found out today that my cancer had returned for a third time! It really has no shame! I’ve had 4 operations, 2 lots of chemo in 2016/17 and then 2017/18 and radiotherapy. When do you find out your results? How are you doing Susan? And you Delly? Walkerlass? Xx

[Jobey68]

Hi Warcol, So sorry to see you back here on the wrong side of the fence , what rotten luck.

ER + is mostly less aggressive than TN and doesn't always involve quite so aggressive treatment plus as Jill says you have the extra protection of taking Tamoxifen for 10 years after to help prevent reacurrance. 

I can imagine how devastated you must be feeling, once is more than enough for anyone to deal with but as you know only too well that you have to face it and deal with what needs to be done , that doesn't mean you can't feel bloody well furious at having to do it again though! 

Xx Jo 

[ladybowler]

Warcol

Hello and welcome to the forum, sorry to hear that you have been diagnosed in the other breast.

ER+ is oestrogen receptor positive, so part of your treatment will be a hormone blocking tablet which you will take daily for up to 10 years. 

I am post menopausal but take tamoxifen which is usually given to ladies who are pre menopausal, however I have osteoporosis in the spine so my oncologist advised that I take that as it is easier on the bones.

You will probably have a dexa bone scan before you start on them, this is to check your bone density.  It is a very very simple xray of the hips and spine, takes about 10 mins to do and does not hurt at all.  It then gives the benchmark of your bone density and will be checked every 2 years.

There is a very good leaflet on here which will probably explain it better, here is the link

https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment...

You will get loads of help and support on here from the wonderful ladies, come on here whenever you need us and there will always be someone here to help.

Sending you hugs

[Jill1998]

So sorry you have found yourself back here Warcol .Generally ER plus tumours are less aggressive than TN and you have the added " bonus " of being able to take Tamoxifen to help prevent re-occurrence .It also means that your tumour growth is fueled by oestrogen and so other things may be offered to reduce the levels of oestrogen being produced in your body e.g. Zoladex injections that shut down your ovaries while you are in the medication .🤞 for good news from your scans .Jill x

[Warcol]

H ladies
I’m 43 with 2 small children (7&4) and had TN in 2016 HAD chemo WLE (R) and rads and feeling fab! Yesterday following mammo US and biopsy confirmed new tumour in left breast which is now ER+! 5cm tumour and just waiting to see if it’s contained or spread! Devastated to say the least but don’t know anything about ER+ welcome any advice
TIA