Irina.....we are so similar. I was lobular too..also pain and told it was hormonal.
I am so glad you were listened too...it took me over 18 months to get dx - by that time my tumour was over 5cm...though thankfully grade 1.
This lobular thing is a whole other story
Hi, Irina here,
I have had 5 FEC and am due the 6th on Thursday 22nd.
I had pain in my breast for 9 months before going to my GP early April 08, she thought nothing was wrong but referred me just in case, I was seen on 23rd May by a breast specialist who had a quick feel, told me nothing was wrong and to go away and forget about it. I challenged this and was referred for a scan at a different hospital - dx 24th June with invasive lobular BC, had WLE and axillary clearance mid-July, tumour was 1 cm, ER+ PR+ HER2 negative. Had re-excision mid-August and started chemo mid-October. Not susre when rads will start, I have a Hickman line in which needs to come out a couple of weeks after last FEC.
Thinks some granny vests are in order for rads!
Peacock....do you think it was the TAX that caused the fluid retention or the dexa?
Also, can I ask, how is your skin on rads side?
You have had a long journey (I have seen some of your other posts) - congratulations on reaching the home stretch
HI to everyone, sorry girls my dozy brain can't remember everyone's names so forgive me please.
Just completed 2nd week of rads, another 3 weeks to go.
Had 6 taxotere before mastectomy last November, so in all have been having chemo since June last year - it feels like this journey has gone on forever.
Hair is just growing back, no eyelashes yet though but also hair on legs (and down below) is beginning to recover.
14 weeks since last chemo and most of the SE seem to have gone, now and again get chemo tummy (you know that feeling, when you've gotta go, you have to go), fingers and toes still a bit numb, and still have fluid retention in legs.
Slowly but surely I'm getting there. Feeling a bit of tiredness with rads but its not as bad as chemo, and I have a journey of over an hour each way so that doesn't help.
Take it easy everyone and carry on with getting stronger each day
Thanks so much. And I will certainly let you know how I get on with the hair!
Cat, re. bras - the booklet they gave me said not to wear underwired bras, a 'soft' bra or a crop top or vest would be best as treatment progresses if the skin gets sore. I guess we'll all react differently and need to take different measures. I've read on some radio threads that those who get very sore skin find it helpful to wear a silk scarf next to their skin - I hope we don't get that bad!
Have a great party tonight - can't wait for the photos!
Thank-you all for the very warm welcome,i look forward in sharing this next stage with people in a similar situation.
Cat, i did the visualization thing for my rads planning and it worked a treat,i kept my eyes tightly shut,and therefore didn't see a thing. In some ways i'm not looking forward to rads as i have this real fear that i shall jump off the bed when they all leave me on my own.I suppose thats a panic attack,so i shall have to try hard to keep myself calm.
Pheebster, i'm thinking about returning to work and losing weight is one of the things i need to work hard on,i have an extra 2 stone to lose that has gone on since diagnosis. i've decided to treat it like having a baby,ie 9 months of treatment,then i will join weight watchers which always works for me.
Lorna,i nearly had a picc line but just managed to avoid it,the veins weren't too good come the end. On my last treatment she turned my wrist over, and i said "your not going to try there surely" to which she replied,"yes,that's perfectly acceptable place" needless to say i had to do the visualization again,which obviously works as she said i didn't flinch at all.
Brightlight,i didn't have the cold cap but i never lost all my hair.My OH says i look like an easter chick,not the type of compliments he used to give! the condition is terrible which i suppose is because the chemicals are stiil in the system.
Lizbou,my tattoo aren't very visible either.Apparently they have a well trained eye,or if they have disappeared they will do them again
I don't have conditioner put on. They spray my hair with water before putting on the cap. However if you were going to use conditioner II would take along a spray of mixed up water and conditioner and spray it on prior to the cold cap going on. I know many people say a good slap of conditioner works but I've not used it myself.
Let me know how you go and even if/when you do get shedding don't give up as we have all gone through this stage.
Thank you so much for the advice and it is very encouraging to read that you have kept so much hair. I will definitely give it a try. Just one final question, do you also apply conditioner when you have the cold cap applied each time? I have read that it is good to wet the hair and gently rub in leave-in conditioner..
I wish you luck with retaining the rest of your hair through the last cycle.
I had my planning appt yesterday, and it was all fine and even quite pleasant - no waiting arond. I was in and out in less than an hour, There is a lot of heaving you about on the bed thing, and only one of the radiotherapists had nice warm hands, but I barely felt the tattoos (and you can barely see them). The only thing is it is bloody cold in there. Apparently the machines need to be kept fairly cool. The radiotherapists aren't allowed to wear cardies over their uniforms (health and safety) so just have to freeze all day. OK I was shivering in there naked from the waist up, but at least afterwards I could get my woolly and coat on and get out for w warm coffee.
Cat, they didn't say anything about what sort of bra to wear, I'm afraid. But the whole tits/boobs vocabulary thing is funny post surgery isn't it? If you have a really good party, you could be 'off your tit'on Thunderbird. Or that annoying person could really 'get on your tit' all night!
Have a good time
Here's a question for Bella and everyone who has had a planning appointment: were you advised about wearing a softer bra than usual? I'm just thinking that skin's going to be incredibly sensitive but going without a bra in my case means lop-sided boobs (can I say boobs in the plural, I only have one?). Just a thought...
Hello Brightlight: It's before 7 a.m. right now so if you bear with me I will pass on to you all I can re the cold cap.
It depends which cap system you are using. I am using the type which is a frozen helmet kept in the freezer (not the paxman plug-in system). I have to keep it on 15 mins prior to kimo and 45 minutes after.
First off have your hair cut to a shorter style if you can. When it does start shedding it is (a) quite distrssing and (b) messy, so the shorter the hairs the better.
Following treatment I don't touch my hair. I just cover it with a bandana and put a hood on top of that for the drive home. Your hair will be very flat to your head and stiff feeling. Keep it warm. I keep my hair wrapped as much as I can indoors and always when I sleep (check out Coolio's doo rag on Celebrity BB!!!).
I wash my hair every 8-10 days, and never in the first 6 days of having a kimo injection. Sounds disgusting I know, but your hair will become accustomed and you wont need to wash it as often after a few weeks. I am using Body Shop Olive Oil shampoo and the same conditionion. Wash very gently, condition, comb with a wide tooth comb and pat dry. No products and no hairdryer. Each morning I kind of mess up my hair and damp it....that's it.
I would say that the top of my head is where I have thinned the most (I wrap scarves round to cover any patches or wear wide large headbands) but if you saw me from the back there is very little difference. My hair started to come out on the day of FEC#2..strands never any clumps. It has become thinner in top since TAX#2 but I am still hopng it will hold out for my final one. My hair is still growing but it is hard to tell if I have any new stuff sprouting through. I would say I have about 75% of my hair still.
Give it a try. Nothing ventured nothing gained, as they say.
Just for the record I have caucasian hair, fine but extremely thick and I had it cut into an elfin type style at the beginning of kimo.
Hope this helps and I wish you all the luck
Sorry to intrude on your strand.. it is just that I was reading with interest about perservering with the cold cap through same chemo regime I start next Friday (3 fec and 3 tax) . I am planning to use the cold cap too, and just wondered what you do regarding caring for your hair directly after the chemo treatments. i.e. I gather you wet it and add conditioner.. Is it safe then to wash it directly after taking off the cold cap - or do you leave it for another week, and just put up with it looking far from its best??
Grateful for your advice from months' of experience. Also what proportion of hair do you think you have managed to retain??
Thanks very much
Brilliant that you both had a lovely time.
Hahaha you minx Pheebs - fluttering your (false) eyelashes - and why not!
Julie - Well done you in your recovery - God I was hospitalised for 3 weeks 😞
Happy week-end everyone
Afternoon all. Met Pheebster for pre-rads coffee, and I thought she looked really well - she's got hair, unlike me, and was fluttering really natural-looking false eyelashes at me. We had a good chat - some of the other folk in the cafe were taking quite an interest. Glad you're getting to go home, Juliie. The let me out with just one drain (out of four) left in. Emptied them myself (bit revolting).
Just returned from meeting Liz for our first pre-rads coffee and I can report that she is a picture of health! Coffee on me next time, Liz!
Glad to see you will be home soon Julie - some good advice from Bella and her Kimo Brian!
You will be having your G & T this weekend I'm sure. I have to admit that as soon as I was off the painkillers OH used to bring me half a bottle of red in a flask at evening visiting and I would plough my way through it before sleeping...lovely (and good for the bloods)!
I hope you continue to improve Julie, but just be aware that if you get a temperature and feel unwell you could have a blood clot (which is what happened to me) in the drain and it stops working. Again I don't want to frighten you, but just to let you know that this can get serious quite quickly. Will you have a district nurse come to see you every day? Take up the offer if it's there, especially over this weekend, as things can change quite quickly and you really don't want a problem over the weekend and be without medical supervision (which is what happened to me and it took over 12 hours to get a GP out to me). Forewarned is forearmed, as they say, and I really hope you'll be OK.
Hi all, and thanks for the good wishes.
Am so so pleased, as the surgeon has said that I can go home tomorrow morning! I'll have to empty my drains myself, and keep them in until I see him next Wednesday, but should be fine. Just had a shower so feeling freasher, and so happy!!
Love to all,
Hope you're doing well this morning 🙂 I agree with Bella, the drains were the worst bit for me, lugging them around in their little pink baggie. My son thought I was carrying around special drinks and was always wanting a look at them. I was delighted when they came out after 6 days.
My son goes to preschool with a lad called Dylan, his arch enemy, co-conspirator, and best mate along with Devan. They're a right trio of three-year-olds.
Thanks Bella - I'm definitely taking it easy, enjoying being pampered for a while! I have 2 drains, and one seems to have almost stopped already, but the other has to be emtied regularly.
I'd almost forgotten (she's 14 now), but my Florence went to nursery with Dylan and Dougal too - really!
Julie - I didn't want to scare you before your op, but for me the drains were the worst bit. They usually come out by day 10 and you should feel much, much better once the blasted things have gone - so keep positive, you're almost over the worst.
Take it easy, Bella xx
Doing fine here after my mastectomy yesterday. Jealous of Pheebster and liz going out (and of Pheebster's g&t) - my world is walking the corridors with my faithful friends the drains at the moment!
Bella...your Brian must be afriend of my daughter - she is Florence!
hey Pheebs and liz have a good one tomorrow.
Well done Lorna - great news re PICC going.
Liz you said no bath?? i ..i might have done it.. also rubbed myself very hard as i sweet so much so many dead cells on skin..
Bella - i have not thought of going back to work full time yet- well I am working from home now but it is not like really being in the office and visiting my cleints as i normally do. Not sure how i 'd cope when i finish all the treatment and go back to work. Might as well take a month off to recover porperly.
Pheebs so envy that your guys going to meet up soooon hope you have a good one!!
take care everyone here
Yes, I've left out some tasty veg for brian!
I'm jealous at you all meeting up - sound fun! Raise your mugs of coffee to the rest of us!
I wasn't advise don bathing etc but have read the same as liz has posted so will take that as gospel.
I've just had my car serviced so it can cope with all the driving to and for Cheltenham - Â£350!!!!
I'm hoping to start back at work one day per week once rads are done. I've been off since dx in August because my job is full-on and 40 miles away so I couldn't have carried on between treatments. Will be very glad to be back and am going to meet my team for lunch at the end of Jan which will be great. I talk to thtem every week on the phone and they've been really supportive, but I do have that feeling of wanting to get back to normal now, but without overdoing it. Everyone I speak to (my Onc included) says to feel tired up to 8 weeks after rads are finished so I suppose I'll have to take it easy.
Bella xx (Spag Bol tonight!)
Yes...see you tomorrow Liz - I will text you when I reach and meet you in the Rads Waiting Room. Just poke your head round the door and give me a shout!
Once we get our dates we can let you know Lorna and we can arrange to have lunch somewhere on Liz's non-work day. How about Wagga Mama at the Boardwalk in Lakeside?
Just having a G & T while the dinner cooks and face is flaming red again. The steroids have affected me this time and my face is definitely looking puffier...I am stopping them now as I don't want to start getting fluid retention.
Bella: Will Brian be eating with you tonight?
Sorry - my brian is playing up as well. Forgot to say what I was told about bathing: no baths, only showers; no swimming; Simple soap only; pat dry, don't rub.
Lorna - I am sure I'd feel the same about the line - get the bastard thing out. Julie - hope you're going on OK - did you have a recon or just the mx?. Pheebster - looking forward to seeing you tomoz. Bella - hope Brian's keeping well.
This is a busy old thread already - well done for starting it off Bella. So many reassuring pieces of info which is great. Good news re the PICC Lorna - that must be a relief for you. How great that bit is 'over'. Welcome to all the new friends here - impressed that you are online already Julie! Brian certainly is following you around Bella 🙂
Hi Angela, Khyrah and Tracey... and speedy recovery Julie!
I had the awful PICC out this am! so happy now.. I know some felt that a line was a life saver.. but I know my body truly hated it! I did google yesterday.. and seems people can react as I did... palpitations.. racing heart beat.. seems it can Tickle your heart.. so I'm ticklish from the inside! anyway all done and decision made.. still no Rads appointment so am going to email my Onc sec. as don't see onc till 28th and I will be 3 weeks post last kimo then.
Pheebster I would love a meet up.. anytime that suits you.. and only at Uni Tuesdays for the next few weeks... it's the life being a student!
Bella...what did they tell you about bathing?
Liz and I are meeting tomorrow after her planning appointment, so I will be able to get all the info from her, which is great as we are both under the same hozzy now.
Lorna - if you fancy drive over the bridge one morning, let us know and we can meet up.
I have been into work this morning (not to work just a chat and get my jab done) and I have told them I'm not going to officially return until the end of rads. OH and I have discussed it and we both think that another month off work is going to do me far more good than not. I'm going to spend that month preparing myself for the return to civvie street as we once knew it....lose a bit of weight, get the kimo out of my system, get some energy levels back and hopefully, a decent sleep pattern once the steroids have dissipated. I will go into work as and when I feel I can during the time of rads, but nothing structured (there is always loads to do and a desk to work at) so I can ease back in gently. I only stopped working when I changed from FEC to TAX, but I miss it already.
It means going on to sickness benefit - anyone know anything about this?
What are you all planning on doing... ?
How are you this morning Julie? That first cup of tea must have been nectar!
Cat - I didn't think it was claustrophobic, but there again I don't have this kind of problem. The room was big and all that was in it were 3 comfy chairs for putting clothes on/sitting to talk to Onc, a couple of terminals (PCs) on the other wall, then the big table thing you lie on plus the machine overhead. It did come down over me, about 12" from my chest and a bit over my face, but not all over me, IYSWIM, and it wasn't paricularly big or scary. It beeped a couple of times. It did also rotate right around me for the 360 scan, but for half the time it's underneath you and it only goes round the once.
Maybe talk to the radiographers beforehand so they can tell you what will happen if you have particular concerns?
Would this Brian of yours also have some friends called Dougal and Ermintrude per chance??
Hey Julie - wow, I'm impressed you're on here so soon after surgery! You've done all the worst bits now, all you have to do is recover. I'm sure your Medal of Honour is in the post on it's way to you!!! Take it very easy, and don't be tempted to over do it. You really need to take it easy for a couple of weeks now, regardless of how you feel or you'll undo all that good work!
Lisa, hello 🙂 great to have you here and hope the appointment goes well. What tattoos have you already got?
Tracey, welcome, fabulous of you to join this thread 🙂 and look forward to eharing how things go on the 19th.
Julie, wonderful that you're online so soon after surgery (you're as bad as I was, laptop went in with me to hozzy complete with 3G card and there I was insisting I send e-mails to friends and muck around on Facebook!). Glad all went well and thinking of you - take your time over things, rest when your body tells you to and ignore your head making you want to overdo things.
Soo, I think we were going to run both threads, but I could be wrong, brain isn't up to much at the mo 🙂
Tracey and Bella, thanks for the heads-up about being left in the rads room on your own. Gotta ask - is this a claustrophobic kind of situation because I'm not good with confined spaces. I had a bone scan last year before my mx and the machine thingy was right down in my face, managed to handle it through self-hypnosis and doing a trick about thinking myself into my most favourite place. Sounds like that's going to be needed for me.
Bella, I have a very nice photo of a snail called Brian if you'd like me to send it to you 😉
Welcome back Julie.....just think it's all in the bin now and you are on your road to the next chapter. Look after yourself...eat lots and sleep too. I used to get OH to bring me in red wine in the evening - good for the blood!!!!
Hello Tracey - welcome aboard.
I have to say that it never ceases to amaze me how many of uss have been previously misdiagnosed...it's really scary.
And Lorna....can we lose the wimp tag please....you are so not a wimp....you rock
PS: I know I posted this on our other thread but for the benefit of the newcomers on here:
Checked out the pricing for the hormone drugs. These are what they will cost the NHS:
Nolvadex 20mg Â£8.71 for 30 tablets (poss less SE's)
Tamoxifen Â£1.62 for 30 tablets
So there we go...if your Doctor tells you it is too expensive tell them what you know!
Hiya Tracey, and wow Julie, posting already a few hours after surgery. Hope you have a good night and recovery continues apace tomorrow.
One step closer to rads now - had my mastectomy this afternoon. All went well, but feeling tired now. Hi to all the new posters, and best wises to all. Will post more in a day or two,
Can I join this thread, pretty please. If not I,m going to be the only one left on the other thread 😞
I know I,m not having rads, but I,m still undergoing TAX/Xeloda and Herceptin for the forseeable future (just had No 9).
I promise to sit quietly (yeah right!) in the corner.....
Here's brian again..!!
I forgot to explain - on the FEC thread, one of the ladies (sorry, can't remember who) had a card made for her by her daughter who spelt 'chemo' 'kimo'. We decided it was lovely and that we'd stay with that spelling.
Yours forgetfully, Bella x
Of course you can join us Tracey - it's lovely to meet you.
Who is this brian fella that keeps following me about....?
I also forgot to say (here comes kimo brian again!) that there's not much to see, is there Anxious, you just hear a few beeps. It's all pretty boring really!
Hello Ladies,i have followed your chemo thread and always felt i would like to join in, but felt a bit like a gatecrasher,so decided against it. However i'm very glad to join you here although i don,t quite fit the criteria,my rads are starting Monday 19th January.Do you mind if i join anyway?
My history is diagnosed with IDC June 3rd 08,delay in operation as i was anaemic,so i had to undergo the tube down your throat and up the other end...that came back alright so they put it down to womens problems,iron tablets got the anaemia sorted and i had my lumpectomy on 23rd July. I started 6 FEC on the 8th September finishing my last on 23rd Dec. It was a bit of a mixed bag with chemo,some cycles more tolerable than others,but i am glad not to be living my life in 3 week cycles.I was fortunate not to get any infections and my bloods always behaved.I am having 4wks of Rads and next week i start Tamoxifen with a view to changing it after 2 and a half years if i have gone through the menopause by then.
I am 45yrs old,birthday next month,i have a OH and we will get married when i have some decent hair and something resembling a figure! We have 2 children of 8 and 4 and i have an older son of 16
I had my rads planning last Friday and they were lovely as i was very nervous.I hasten to add there is nothing to be nervous about,its just i'm a control freak who panics and i thought i wouldn't be able to stay in the room when they all leave. I overcame my fear by keeping my eyes tightly shut,so i have no idea what was happening and that suits me.I intend to keep them shut for the duration of treatment.
It's lovely to meet you all and thank-you Bella for making us newbies very welcome
Well, well.Bella, so who is kimo brian - your fancy man or just a slip of the finger? (Joke - don't suppose many of us would have energy for a bit on the side in our state!) Will take on board your tip about using cream in advamce - got a tub of aqueous staring at me from the cupboard.
I truly have chemobrain!
I put I'm 41.... I"M NOT.. still 40! I know I've been wishing my life away over the last 4 months... but want to hang on to being 40 still.. not 41 till May!
I forgot to say (kimo brian..duh..!)..
I saw my BCN today. She advised me to start moisturising my radio area every day now in preparation for it starting. Use an unperfumed lotion such as E45 or whatever suits. This will help to prepare the skin for the onslaught. She also recommended Aloe Vera Gel for once it starts to sooth the skin if it's irritated. It should have at least 90% aloe vera content, and watch out for too many other added chemicals. Apparently the Holland and Barratt or Boots ones are good and about Â£5 per tube.
Hi Ladies 😄
I am Lisa, diagnosed 07/08 and had a lumpectomy on the 08/08 which removed a 3.2cm invasive tumor which was ductal (not in situ) and all 4 nodes that where removed where fine. As for children well here goes 27, 26, 21, 9, 8,and a 5yr old and happily married 😄
I have just finished (last thursday) chemo which was 6x FEC, and all in all it was not too bad.
I am aparently having 3 weeks of rads (every day ecept weekends) and my staging appointment is tomorrow, I am not worried about the tattoo bit as I hasve 4 already hehehe. After the rads I beleive I am to be on tomoxifen (which i already have sat in a draw) for 5 years or so 🙂
Good luck to you all and may our journey be adventurious and complete 😄
Welcome again to all, how lovely that there are quite a few of us - maybe we'll pick up a few more over the next couple of weeks? If any of you know anyone else from other threads please invite them along.
Happy Birthday Jules! It's Cat's next week, and mine on 2/2. Strange how, apart from the couple of youngsters, we're all in our early 40's?
Julie - I agree with Liz, you've actually done the hardest bit. For me, the kimo has been much harder than the op, and that was with some complications. I think the battle is mostly mental and that's why the kimo is so hard because it's so repetitive - you have to keep doing it again and again. The op isn't the most pleasant thing in the world, but the advantages are i) you're knocked out and ii) (hopefully) only have to go through it once - much easier on the mind and soul.
Hope it goes OK and do keep in touch. We'll support you through your recovery and all hold hands together through radio.
Im new to this thread.
Im Angela, diagnosed in may 2008 at 33 (34 now), I have a Boyfriend, No Kids, but want them and was just thinking about it when this kicked off.
8 Weeks after starting a new job, I found a lump and went for biopsys and ultrasound. Biopys came back clear, but ultrasound was suspisious so they did another biopsy and that also came back clear. Surgeon decided because of the size of the lump he wanted to remove it anyway 4cmx2cmx2cm. The results of that were that I had cancer and I was then sent for a mx and lymph node removal, 2/20 with cancer. I was then sent to have eggs harvested and started chemo in July I have had 4 epi and 4 Xeloda and am on the last couple of days of Xeloda at the mo, Friday is the last day Yay.
I have been told that im having 20 rads over 4 weeks. I havent heared when Im starting, but I asume Feb. Cant wait for it all to be over now.
Its great reading how bella got on, puts my mind ar rest, thanks.
Hello My lovelies.. told you you couldn't get rid of me 🐵
Hi to all I know and all I don't... good luck Julie and Happy Bday Jules!
I'm 40.. single Mum to two sons (12 and 15) benign lump removed 16 years ago.. regular yearly (but one cock up and missed 2007) mammograms/ultrsounds for 16 years.. diagnosed 15th July. Grade 2+ DCIS.. no nodes..HER neg... ER Pos.... had WLE and sentinel nodes 1st August.. started FEC 6th October.... have just opted to not have 6th and final FEC as too rough (a wimp!) will be starting Rads sometime soon.. had no planning apts yet.. onc told me will have x15.. over 3 weeks.. then Tamoxifen and genetic testing (Grandmother and sister had bc) and possible Bilateral Mx and Ovaries removed to look forward to.