I was diagnosed on 31st March and had my Lumpectomy on 11th April and was diagnosed with grade 3 breast cancer ER, PR and HER2 positive. I went to meet my oncologist last night for the first time to discuss the next steps and what chemo I’m having. I’ve to go back on Friday and meet the rest of the oncology team and have bloods taken and am echo scan for my heart. We also discussed having a portavath fitted for chemo as I have really deep thin veins so taking blood and putting cannulas in is not very easy. The plan is to start chemo next week. We are suppose to be at a family wedding on the Friday so not sure how that’s going to work at the minute but the bride and groom just want me to concentrate on getting through this. My BCN said they can work around the wedding and have chemo before. I’m feeling anxious and scared about the unknown but still positive that the ball is rolling and eager to start my treatment. At first I thought I wasn’t going to try the cold cap, I was told when first diagnosed that it was unlikely to work due to me having thin hair but I’ve decided to stay optimistic and at least try the cap and see whether I can stand it or whether it will work for me. So the plan is to have 3 sessions of EC chemo and then to start 3 sessions of Docetaxel. I’m will also be starting Herceptin with the second lot of chemo for about a year. I know everyone is different and chemo effects people differently but has anyone had the same as me? How did you get on? How quickly did your hair go?
Hi Claire, I’m almost exactly the same as you. I have grade 3, ER, PR and HER2 positive and start chemotherapy next Friday, same plan as you. I however am not trying the cold cap. I’ll be seeing with interest how others have got on with this. I’m also currently 19 weeks pregnant. Xx
I go today for my echo scan and see the oncology team. I’m also seeing my consultant again as another follow up from surgery but I’m concerned chemo will be delayed as the wound on my breast is weeping and I think is infected. A scab came off when they removed the dressings last week and it keeps scabbing back over but then comes off again when I get it wet or with my clothes. I’m gutted, I just hope they can give me some antibiotics to get rid and a plan to dry it out asap so chemo can still go ahead. Was hoping to get a day to start today but I fee like this will change everything but trying to stay positive. How did you get on on with your scans yesterday? Hope all okay and not more bad news. I’ll update later on tonight how I get on today hopefully if will be good news for chemo x
I’m having similar to you…
- 4 x EC 3 weekly
12 x Paclitaxel weekly
(Herceptin starts with 2nd lot)
I’m going to give the cold cap a go… coarse/thick/afto Caribbean hair apparently falls out more… fine hair apparently less likely (but thinning will occur, so if you have fine thin hair you should expect thinning as a minimum)
I don’t think there is a hard rule.
My onc days hairloss can happen after the first chemo (Macmillans have LOADS of guides to all this… lots on hairloss and scalp/hair care that are good to read in advance. Read them now. So does this site (I stumbled across their documents library the other day… I love this site!)No idea how I would cope without this forum right now… andolute Godsend!)
I am chubby so will look like Dr Evil if I go bald, as opposed to some of the beautiful ladies I see who manage to remain fab when they lose their locks! (to add indult the steroids make you put weight on! Oh I shall look gorgeous!!)
Right now I think I will not be too bothered,I’m 49 so not such a big deal, but suspect will be sad when it happens. I imagine it is pretty traumatic for younger girls though.
Let’s see if the cold cap is tolerable (I get sinus headaches a lot so need to see if it brings that on… sinus headache wipes me out for 2-3 days a month anyway so that on top of chemo won’t be ideal.)
We’ll see.
Like you I have deep veins so am having port-o-cath… relief! They can just pop meds straight in each time without poking around playing veinous hide and seek!
I have lots of tests coming but no dates set: heart, CR/Bone scans etc… they weren’t going to do body/bone/brain scans as my lymph nodes ‘look’ clear… but I’d rather have an MOT check right now, silly not to whilst I have the opportunity!
I found lump 4 weeks ago, biopsy 3 weeks ago, diagnosed 1.5 weeks ago… I know it’s not ‘that long’ but oh it feels like it! And every day I imagine the lumps are growing! Silly I know, but I just want to blast the b*ggers with chemo now!
Double mastectomy and recon at end then no RT
Or breast preserving/ lumpectomy but then would have to have RT
(not thinking about that right now, want to get through the chemo then shall see!)
Teying to get Mistletoe extract therapy alongside Chemo (60% of German cancer patients have it… improves quality of life wholst on chemo… fights SEs… some take it instead of chemo to great effect but I have an 11 year old and HER2+ so not going to gamble.)
May not swing it but am working on it
Sounds like we will be chemo buddies.
Wish we were meeting under more pleasant circumstances.
I’m having mine at Basingstoke… what about you?
Massive hug.
Niki
Sorry, iphone app didn’t show whole thread!
Sorry you are having delays ladies!
So frustrating.
Xxx
Sorry for posting sooner it’s been a crazy couple of days. Meeting the oncology team was great they really put me at ease and went through everything with me. I also tried the cold cap on and decided against it. I couldn’t stand it. I’m a little claustrophobic and didn’t like how tight it is. The nurse said with EC chemo chances of hairless are much higher ( not sure if she was trying to make me feel better about not doing well with the cold cap) echo scan went fine and rebooked in for end of September. Booked in to have portacath fitted on Wednesday morning and start chemo in afternoon. I’ve been quite stressed since Friday as my chemo hasn’t been authorised with bupa yet. I’m covered with private healthcare through work and used this straight away staying with the same consultant etc. Apparently the healthcare I have though is not an insurance it’s like trust fund with so much money in. I have to phone for pre authorisation for everything otherwise I could be billed which has been fine until now. Bupa are waiting for the drug chart from my oncologist to cost everything up before I get an authorisation code to go ahead. From what info I’ve found online chemo is ridiculously expensive with chemo and radiation costing upto £35k and then herceptin for a year (which I’m having) costing £21k. I’m just concerned now that it won’t be covered and I’ll be delayed transferring back to the nhs. I just wish there was a way to have the facilities and staff billed privately but the drugs charged through nhs (they’re gonna have to pay it anyway) to save me the stress of everything. I can’t even build myself up for chemo because I’m stressing about this.
Also reading about other people having brain/bone scans etc concerns me as I’m not having those yet I had cancer in my lymph nodes and need further surgery? I’m so tired and confused x sorry for being grumpy today the bank holiday is not helping my mood as I feel like I’m having to wait another day to find out the plans
Don’t worry about being down… we all going to have. bad days, hopefully the site helps.
I am having pretty identical treatment to you.
Will try cap but not convinced I’ll cope. Won’t beat myself up if I can’t.
And the wigs these days are fabulous!
Ask about the scans/CT … I know it can slow down chemo starting, but I also wondered why I was not having them (no ‘visible sign’ of node involvement, but onc agreed to schedule it to put my mind at ease.)
(I have private cover too, no threshold but does not cover Tamoxifen as that is ‘preventative’. Bizarre loopholes)
That is crazy you can’t split drugs element out to NHS and use insurance for consultant /operation elements!
Thing is no-one would understand terms if not been through it, no idea what needs to be included.
Hope you get it sorted
Niki xx
If it’s not covered that’s what I’m going to ask about like co-payments so I’ll use my cover to pay for team and the facilities egg but the drugs themselves be out through nhs. I can’t see what difference it makes I know there will be loads of barriers no doubt and it’s probably not as clear cut as I think but logically I’m helping them out still by them not having to facilitate it all too I’m taking that logistic away. Not long to find out they’re open tomorrow so gonna give them a ring for an update. Good luck to anyone else starting this week.
A little update on chemo this week. I’m feeling a lot better since speaking to oncology nurse and bupa today they have reassured me that all will be okay. Unfortunately due to an emergency on Friday and the bank holiday losing a day chemo won’t be starting tomorrow. I’m still going in for the portacath fitting and my oncologist is doing the prescription in the morning so fingers crossed it should be done for Thursday!! I think I’ll sleep better tonight than I have done all weekend but won’t get my hopes up too much till I get the green light for Thursday. Saw my consultant tonight for last time for a few months until chemo done and then will book in further surgery for lymph nodes. Feel strangely sad about it as he’s been my familiar face over the last month.
Found out today that I don’t get full sick pay from one of my jobs only for this month so I guess I best get chasing the life insurance. Serves me right for thinking that side was all okay I’m sure it will be fine in the end. Hope everyone had a nice weekend. Wel as best as you can do xx
Good luck today Claire
Mine starts next Thursday fingers crossed
(Having port o cath fitted next Weds hopefully, under sedation? (Is it weird having it done or does sedation send you away with the fairies?)
I had private health insurance but no critical illness cover! Wish it was the other way around… I’m intending to keep working as much as I can (am home based, run EMEA for a Canadian software company and 90% can be done via phone/ email/ conference calls.)
Have told him I’ll probably be out one week in three.
Bit worried as I am already struggling to focus and chemo hasn’t even started yet! (I think that is because I still feel a bit in limbo though, and still waiting for dates for some tests and firm date for chemo!
I’m so tired too, yet again, not on chemo, so I guess that is stress or the cancer?
I’m going to find someone to give me reflexology or a massage today.
Liam Gallagher comment made me laugh… suspect I’ll look like Matt Lucas dressed as the weightwatchers lady in my wig (and without will probably just look like Matt Lucas!)
Thanks for the tip! Will definitely check them out, sounds perfect.
Will be in touch about next week (i’m having sessions at the BMI Hampshire Clinic now… thought it’d be the main hospital… but no 
Well I’m 3days post 1st chemo session and feeling okay. The portacath was fine La La, I had sedation too took about 45 mins but felt like I was in theatre for 10minutes if that I just kept slipping in and out. It was a little tender on Thursday and they changed the needle they had left in for chemo as it wasn’t flowing right but it wasn’t too bad them pushing on to change it.
So 1st chemo session, so they started with the anti sickness drugs and the steroids which was fine and then out came the big 3 syringes ( 2filled with red liquid and 1 clear). When I started getting the 3rd syringe with the clear liquid the nurse said I may get a little light headed which I did, I also felt like my right ear wanted to pop like when your on a plane. I then got a weird sensation in my gland and down my neck which then traveled back up my neck to the back of my head and kind of sat there. The nurse said it could be from the steroids or the flow of the saline stuff. So after 3 hours we were on Our way home with a bag full of medication. At around tea time be headache still hadn’t gone and I was starting to feel a bit of nausea so I rang the hospital to let them know and they said to take some anti sickness and paracetamol. In the end I ate a bit of tea took my meds and went to bed and felt much better to be in the dark! I slept till 3am then tossed and turned for 4 hours. ( another side effect from the steroid) on Friday I ended up getting some co-codemol as he headache wouldn’t shift with paracetemol and nurofen and that’s seems to have done the trick. Other than knowing when it’s nearly time for anti sickness and feeling tired so far so good. Nurse said effects will
Prob hit tomorrow so I’m a little but anxious about that, worries I’m not gonna wake up for the school run in morning and hubby at work lol. Have an appointment for Thursday to go see about a wig/headscarf so I’ll keep you all updated. How’s everyone else getting on? cass79 have you had your results?
I just bought some co-codemol as they had no telephone/appointments at doctors. They ah e really helped me. I have managed to sleep a lot better over the last few days. I few very tired today cass79, a lot more than I have done over last few days so I’m currently having a sofa day after dropping the girls at school. My eldest was 7 yesterday but hasn’t felt too
Clever the last few days with a temperature and headache. Calpol and nurofen are fab for her she is right as rain after 20minutes so I’ve sent her to school still anyway. I’ll try keep you all updated each day as I go on. I thought I would wake up today and feel shocking but honestly I’m just tired so that’s definitely a relief. I’ve just rung my consultants secretary again to
Change up the insurance papers for my critical illness. If I can get that sorted over the next week or so I will Feel better knowing that when my money starts reducing from job 2 next month We’ll be okay x it’s so frustrating having to worry about things like that on top of everything else.
I’m sure you will be fine for your holiday. We were suppose to go to Tenerife at the end of August but they said at be time I’d be half way through chemo, if all goes to plan I will have last one just before they go. But I agree 4.5 hours on an air conditioned plane and 30degree heat wouldn’t be very pleasant. Not having the girls for 2 weeks will be a holiday in itself although I know the thought of it sounds nice I’m dreading it. I will miss them so much, not been away from them for longer than 4days when I went on a hen do a couple
Of years ago(they were at home with the hubby though so slightly different this time). How’s your little girl been? My youngest is 4 and away with the fairies most of the time she just comes out with random
Comments about feeling unwell or going to hospital. My eldest turned 7 yesterday and is a lot more observant. She knows my hairs gonna come out soon and today I was tired. My 9year old niece has come home
From her dads this weekend with a sponsor form (she’s running race for life with her step mum at temple
Newsam) my eldest went and took £5 from her birthday money and said I want to sponsor you for my mum!! Melted my heart bless her.
Not had the gene test yet, consultant said to look at that after but my sister is going today for it do will find out soon enough. It is so hard to protect them and like you say when they’re so young you don’t know what links they are making themselves. I’ve decided to do the same with my hair as soon as it starts coming out I’m shaving!
How you feeling today? I’m drained today, the come down from the steroids isn’t helping me sleep either and my mouth feels awful. Nothing tastes right and I’ve got wicked heartburn. You sound like your doing amazing Cass and your babies will look back in years to come at how brave their mum is and how strong you are. What does the gene test involve? Is it just a blood test?
Oh ladies hearing you talking about your little ones makes me feel very humble, I’m almost 47 and my boys are 24 and 26 and I’ve been feeling so sorry for myself these past few months, I honestly take my hat off to you both for having to deal with this awful disease at such a young age with such little babies to care for, I cannot imagine how it must feel yet you seem to be dealing with it with great strength, you make me feel ashamed of the self pity I have felt, I’m not even having to go through chemo either so you have both given me a big kick up the backside tonight reading your posts and I wish you all the luck in the world with your treatment and have no doubt you will beat this B*****d with your strength and courage! Love and best wishes to you both xx Jo
I just feel wired up, I can’t describe it. Slept okay last night though but tried to stay away more yesterday don’t want to end up nocturnal lol. Glad your 20week scan went okay and you will be monitored regularly I’ve still been taking the anti sickness tablets and I feel sick when I wake up on a morning. Can’t believe they didn’t give you anything for the heartburn. I’m sure it was ranitidine I took with my youngest, I was hospitalised when pregnant and I was so badly dehydrated from being sick all the time. That and the fruit rennies I think I kept them in business.
It’s so nice being able to speak to people
Going through the same situation as me I really feel like it’s helping me and giving me a lifeline to carry on with my life as normal as I possibly can.
Jo don’t for one minute apologise for any self pity you have felt. I’m sure I’ve still that to come, I just put it down to I’m too busy with the kids to let it overtake my thoughts where as I can imagine it’s all you can think about?
Bless your Hearts ladies you make me feel all emotional, wouldn’t it be lovely if we were all close by but what an unlucky street we would live in lol!! This forum is a god send and yes it’s can feel very lonely at times and you do feel you are the only one going through it, I have the most amazing hubby and family and friends but it’s not happening to them so talking to you all is such a help as you all totally understand, you are all amazing and between us all we can do this girls!! 
Start chemo tomorrow and it’s finally sinking in.
I have no idea how we all manage to cope… so many people calling us ‘brave’… hah! It’s not like we have a choice here (OK, we could crumble… or we could all spontaneously burst into a chorus of Gloria Gaynor!!!)
A lovely lady at my church iffered to have some ‘healing prayers’ said for me… now whilst I am regular church goer, I’m the farthest thing from a ‘happy clapper’ ever… (I’m a bit of an arguer) but I thought ‘What the heck, I’ll take any help there is going for this’.
Did not know what to expect, bit nervous, but it was 2 lovely older ladies just laid a hand on each of my shoulders and prayed quietly for me for about 20 mins.
First I just burst into tears (the ‘brave’ bit fell away immediately) and after feeling a bit awkward and fidgety (I am rubbish at being ‘still’!) I actually ended up feeling lovely and calm.
No shining epiphanies, no Angels appeared, I just went home feeling very very relaxed with that tight feeling in my chest gone!
That was nice.
Lasted until tonight cos I had portocath fitted tonight for tomorrow’s chemo and it really aches/ hurts like hell when I cough!
Anyone else have one fitted?
I’m worried it may have torn free inside when I got off trolley back onto my bed after theatre.
Guess I’ll find out tomorrow!
I’ve had a portacath fitted, mine felt Really tight and achey afterwards. I started chemo the day after mine too and they had to change the needle they left in as it wasn’t flowing properly. By the day after I just felt like it was bruised and by day 3 was fine. Can’t still Feel it there mostly when I go to bed as I sleep on my front.
I’ve had a bit of a row this morning with my sister and I’m gonna have to confront my mum tonight. Every year my hubby goes away the last may bank holiday weekend on a golfing weekend with his uncles. He works the overtime to pay for it and I think he deserves it. Obviously when I was first diagnosed he said he wasn’t going to go (hasn’t paid anything so no money loss and doesn’t pay for anything till the actually weekend). I said I’m happy for him to go still and genuinely want him too but have since found out my mum friend and auntie have been discussing behind my back how they think it’s inappropriate and selfish of him and he should be putting his foot down and saying he isn’t going. I could understand their opinions if I had asked any of them to do anything with the girls next weekend in anyway but I havent. I will Also be coming up to round 2 of chemo so should be at my best energy levels wise I just don’t understand why they feel the need to criticise us in anyway they can for spite. This is my same mum who I’ve heard has moaned at my auntie because I’ve not had a breakdown about having cancer and I’m probably in denial. My mother in law who I have t always seen eye to eye with has been my rock this last month or so, texting me all the time offering to do what she can when she can and the people I thought would be here as in my own mum feels the need to **bleep** behind my back instead. I think that’s what’s hurting the most not their opinions (they are entitled to that) it’s the fact they don’t have the balls to say it to my face and just slag us off for having the strength to get on with our lives as best as we can.
Sorry for the rant ladies but feel like I need to explode some of my anger somewhere so I don’t say something I will regret later