I found the missing comments after I'd posted, thanks Julie, what a dope I am! Shelagh, hello and welcome! My experience could have been dehumanising but I just took myself out of the equation and meditated so they had to almost wake me up afterwards. I think they did the simulation stuff at the same time as planning for me, but if they didn't it won't be happening.
Shelagh, good to have someone else to go through this with? Whereabouts in the Potteries are you - I'm in Leek, although I go to Christie's in Manchester for treatment. Bet you are glad to get that final chemo over with - I celebrated with champers that night, even though I knew I still had the horrid side effects to work through.
Cat - thanks for the tips. I have some baby wipes left from my op so will make sure I take them with me. Maybe a hat too if it is likely to be so cold - I've just shaved my head again as I think you saw on another thread! Your experience sounds pretty uncaring and quite dehumanising - not what we should be subjected to at all.
Pheebster, I never got back to you about Nolvadex. I'm on 20mg a day, first day today. I think I'm going to take it tonight, partly because I enjoy grapefruit juice with my breakfast and have heard that grapefruit is no always great with drugs, and also because I'm off to Manchester for a post mastectomy check up and to get the seroma drained, so I'll be in a hot flush by then anyway!
Lots of love to all,
Oh, and you've probably all spotted this before me, but when you are adding comments now, the old ones are underneath, so need to scroll down to see them
Hi everyone, I'd like to join your Feb radiotherapy group please. I'm 54 and live in the Potteries. Was diagnosed in April 08, had conservative surgery which found bigger tumour than expected (2.7cm, lobular, Grade 2, oestrogen+) but clear lymphs. Started chemo on 16th June (Epi-CMF) and was expected to finish on 16th Dec but have had lots of problems with low wbc and infections so eventually had my last one yesterday ... yea!!
I had my first rad planning session last week. I had a CT scan of boob area then three tatooes - very small and didn't hurt. I have to go back for a 'simulation' session next week then hope to start the week after - 3 weeks of whole boob and 1 week on tumour site.
It's always surprising to hear how we are treated so differently. I was given a gown with velcro fastenings top and side, which I take home and use for the whole treatment. The thought of cold rooms and just paper to cover you sounds horrendous!
Hope you are all feeling OK ... and good luck for last chemoes!
Hi on this thread to. It's more confusing because they hide the previous posts and with my kimo brain, I can't remember what it is I'm trying to reply to.
Julie, if you have two rads plannings, sounds like your hozzy takes things seriously and wants everything perfect for you. Take what you get and make sure it's the best care for you. Follow Bella's tips, my rads planning was rather like that, but a couple of additional suggestions in case your hozzy sucks like mine.
There were no hospital gowns for me to slip on the preserve the shreds of dignity that I have. I had a choice of that blue paper they make you lie on to cover up the remaining boobie, nothing at all, or as I did, I opted for my shirt (which got torn so don't wear anything you care about). The shirt got torn in the yanking around and laying down little marker wires - so shopping for me on the no income, hoorah. It was one of my favourites, too. So, wear something that doesn't matter if it gets torn or marked with the felt tip pens they use, something roomy and warmish because that room was holly cold.
Also, you'll end up looking like some kind of abstract Intellectual Cubist painting by Braque after they've measured and marked you to pieces. They provided me, on request, with two 1" by 2" rectangles of antiseptic wipes to remove half a felt tip worth's of markings and it was useless, couldn't even get the stuff off my neck, so was then wandering around hospital for a couple of hours for my next appointment looking torn and marke don my shirt and as though I'd let the sprog out on my with colouring before I went out - right mess. So take nice sensitive baby wipes so you can clean yourself up.
My rads start on 18 February, so exactly three weeks after chemo, woo hoo, no time to recover really other than to get rid of the sludge gob, but upwards and onwards...
And where is the spell check, I need spell check with my kimo brain and shaky hands 😞
HI all. Just putting my mark on this thread as well, so I don't lose it. Got the revolting mouth but other SEs from Tax going now. Second rads planning appt Friday 30th, and kick off 9/2, I think. Planning to go into work for a day or two next week - so excited, haven't done anything so normal since mid December.
Guess we'll get used to it, but does seem very unfamiliar just yet!
On the rads and rads planning - I've got two appointments, 6th Feb, apparently to check the mobility of my arm, then 19th Feb for rads planning, then start the rads the next day, 20th. Is this normal?
Just popped on to say hi so I can add this to my saved on profile thread. Is it just me or is this more confusing? x
Hi Weezer, and welcome 🙂
I'm off to rads planning today, girls, so fingers crossed 🙂 Will let you know how it goes.
forgot to give you all my low down.............age 39 2 kids 20 and 6 dx july wle 9mm lump grade 3 no nodes affected triple negative so 4 epi then xeloda just finished the tabs had the tattoos done was to get 6 weeks rads but new machine means it can be done in 4.
I have been given Tamoxifen and advised to take them in the morning by the hospital. Seeing the Gp next week for free prescription paperwork and to ask for Nolvadex - got to be worth a try for reduced side effects 🐵
Currently pre-menopausal at 43. Advised I will be on tamoxifen for 5 years standard
Some say morning, some say night. i suppose it will be a hit and miss thing....what mg are you on is it 20mg?
I'm starting my nolvadex before the rads (and will be recommencing low dose aspirin too). Have not been advised what time of day is best - what is the general opinion?
Hi....Jacquip...5 years seems the standard treatment.
Nolvadex/Tamoxifen is for pre-menopausal
Armidex is post-menopausal
My Oncologist said they sometimes switch patients from tamoxifen to arimidex part-way through. They can see if you have had menopause by a simple blood test. I presume we will continue to have random bloods done?????
Julie... you are doing so well. Are you taking your nolvadex in conjunction with rads or after? I will be interested to hear how you get on with them. Also what time of day have you been advised to take them...I've heard it can make a difference with regard to the 'sweats'
I am 54 and have been told I need to take whatever I am going to take for 5 years, seems a long time to me, is it about normal?
I dont really know the difference between them all. I thought you just got told what to take, so new to this or is it niave!!!!
I'm 49 so similar to you Pheebster, and have my pack of nolvadex sitting ready for me to start next week (2 weeks after surgery). I iold my gp of the experiences people on this site had had with side effects on other brands, and he was happy to prescribe nolvadex to see how I get on - only got one pack as yet though!
Mmmm - it's a tough one. I work for a Dr and have many patients on tamoxifen. Since being dx I tend to take more interest in their progress. I dont know how old you are but I am 48 so only guess to be on tamoxifen for 2 years before being moved on to arimidex.
I would imagine that being on a trial would mean closer monitoring.....it must depend on your confidence in the doctor?
I will see what I can find out from work and report back
For me, I am requesting nolvadex....
Hi Pheebster. Anastrozole is the "new drug" out apparently, dont really know much about it. Side effects are the same as Tamoxifen but lesser. Has only been used for the past 7 years. Apparently it reduces oestrogen levels, so effects are similar to post menopausal symptoms, including hot flushes, vaginal dryness and hair thinning. Anastrozole may also be assoicated with, joint pain and stiffness, sleppiness, headache, CARPAL TUNNEL SYNDROME or rash, gastrointestinal disturbances (annorexia, nausea, vomitting and diarrhoea). Is this quite normal for a cancer drug( dont know much about them). The leaflet also says, it does not appear to have some of the other side effects associated with Tamoxifen, such as blood clots or endometrial cancer, but there is a concern about bone loss with long term use.
Makes you wonder if it is worth it doesn't it.
Would like some views on this as I dont know what to do.
You are doing so well Julie... I have been using all sorts of cream since my op.. some expensive creams and some not so expensive (Nivea) and E45 and Bio oil..... at my apt I was advised that ok to use E45 and the oil up until I start Rads... but then to JUST use plain Aqueous cream.. said E45 still has Lanolin in and to not use... and use baby soap in Shower.... also Not to wear an underwired bra.. as that can cause friction.. to wear a vest type if poss or nothing when home....so I have been to M&S and bought a non underwired cotton bra.
maltomlin- I found that I was reminded of Dr Who when I went on Thursday..... it was the sound of the Scanner.... sounded like the Tardis!
Have a good weekend everyone
Jacqui.....I sleep every afternoon for at least an hour, I am having my 6th and final chemo next week. I'm sure I'll continue doing the same until rads are over...but I do make sure I walk for at least an hour every day with the dog...just to keep my energy levels going.
What is anastrazole?
Would love to meet up in Chelt, i'll let you know when I start. My last appointment was canceled, which made me feel let down a little, up there again on Weds. The drug trial is for Anastrazole???? I still have not decided, what if it's not for me??Feeling so tired at the moment, apparently that's normal after 2 ops (WLE) in 3 weeks, anyone else feel like this.
Catch up soon.
Thanks to everyone for their reassurance about the tattoos - fear of the unknown I guess, and of needles despite 8 lots of chemo (I thought I would find needles easier to cope with as I went along, but actually hate the thought of them more and more).
Good to hear your positive comments about the rads Maltomlin - and I'm sure my son would be fascinated by the machinery too!
How soon before radiotherapy is it advisable to start using E45 or whatever? I can't use anything yet awhile (only had my mastectomy 9 days ago), but would like to be as well prepared as possible.
Best wishes to all,
Thanks for your reassuring maltomlin, and welcome!
Jacquip - will we meet at Cheltenham? I start on 10 Feb until 13 March - having 14 zaps plus I've another planning appt next Tuesday as apparently I'm on the 'new' machine. Will try to find out more.
What drug trial have you been offered? I rejected a chemo trial because I was too stressed out to cope with more than the 6 FEC I've just had. Find out as much as you can about it plus any side-effects (obvious I know!)
Julie - the tats don't hurt at all, especially if you've had kimo! Piece of cake!
Sorry to intrude on your thread but thought I'd let you know my experience.
I had surgery, 8 chemos and 15 rads (jusy had my 1st booster out of 4 today) and I can honestly say that it's been a walk in the park after the previous treatments. I've felt really tired this past week and a little sore, but nothing to complain about. I started with E45 before the first rad ( 3 times day) and have now been prescribed hydrocortizone cream but it's fine - really.
I'm still working and feel much better than when I was on chemo. The machinery is a bit daunting to begin with ( I said my grandson would love it - it looks like something from Dr Who) but I keep my eyes shut and picture myself lying on a beach somewhere. It works.
And the best thing - it's nearly the end of the road!
Hi everyone. Great to see old friends and lots of new friends on the thread. I have rads planning on the 9th and feel wimpish re tattoos but obviously need not be.
Great news re the swimming Dizzydi. I have a PICC line in from chemo and am getting it taken out next Fri (30th) and am planning on taking my two kiddies swimming the next day - can't wait to be immersed properly in the water - probably commando headed I think as a scarf or one of those awful; swimming hats will only draw more attention - will see when I get there. Hadn't thought about swimming during rads though others have advised thst even bathing is out in favour of showers - don't think it matters as long as the skin is patted dry rather than rubbed but will ask advice at my planning appt. Looking forward to the next stage now, and to getting through these final chemo side effects!
Good news about the swimming. I will have to ask about that as I think I had assumed it wasn't possible. Another example of the different policies, I suppose.
So pleased it is not just me feeling its freaky!
Tattoos didnt hurt at all and are REALLY tiny, I did ask it I could have a flower but they wouldn't...only dots sadly! Certainly no where near as bad as a canula and far far less horrid than the biopsies were! My Oncologist said I could start Tamoxifen whenever I like, so I have an appointment with my GP for a prescruiption next week. Funny how policies differ isnt it?
One thing I was happy about was that they said I could swim throughtout the treatment so long as I didnt stay in tooo long showered immediately and put on lots of cream. That really pleased me! I know I have read here (somewhere) that others have been advised not to. I guess I will see how I feel.
I too will be starting rads in February - planning appointment on 3rd.
I was dx 5th November and had WLE and SNB at the end of November. 10mm IDC with area of associated DCIS (more specialist vocabulary!) and my nodes were clear. I'm now on tamoxifen as it was very strongly ER+ and also PR+. I'm going to be having 15 + 3 boosters.
I know what you mean about it feeling freaky, Di. That is exactly how I feel too.
Honestly the tattoos are not painful... pinprick feeling that's all... and nothing like the dreaded canulas or blood tests! I have a "real" tattoo on tailbone.. so that was painful.. but it was all the filling in the black bits that hurt... and being on a bone! the Rads Tattoos are tiny!!!
Hello Di...of course you can join. Being part of oncology is mind blowing isn't it.....bit surreal.
The tattoos are tiny - look like little freckles. I also have a tattoo and they are nowhere near as painful as you think....I would rather have one of those every day of the week than those bloody cannulas!!
I have my rads appointment next Wednesday.....they called me today and asked me to go along earlier (as they did with you Liz) but I don't think I am starting tamoxifen til after rads finished.....new policy at our hossy
That's interesting about Taxotere and fluid - I'd always thought it was the steroids made me blow up. Don't worry about the tattoos, Julie. There are nothing to worry about, much less painful than having a blood test. Welcome Di. Know what you mean about going to the cancer centre. All that vocabulary you have to get used to is a bit freaky. Chemo, oncologist etc. Used to be words I thought only applied to other people...
Can I join in here?
I was diagnosed on 10 December. Had a WLE on 29 December and start rads on 3 February (15 of them). I am also starting Tamoxifen. Had my planning meeting on Tuesday and it was ok, everyone was really nice, it was just a bit freaky having to go to the cancer centre. Yes I know I know I have got cancer but - well anyway......
So about me...2 kids (boys 16 and 13), an other half who has been supportive, demanding job. Had a hysrectomy 18 months ago and was so happy with my hormone implant...am now looking forward to my hot flushes (not)!!
Anyone else having rads in Coventry?
Julie, hope you're fine and doing well this week. I have tattoos out of choice and it doesn't hurt unless you're being tattooed on bone. One of mine is tiny but on my ankle bone and it was quite uncomfortable. For the size of tattoos you'll get, they'll be tiny and shouldn't hurt one little bit.
Pheebster, just to endorse what Peacock said, the fluid retention can definitly come from Taxotere. I only had 4 tax (and that was plenty!), but my last one was Dec 17th and yesterday was the first day when my feet and ankles looked anything approaching normal. Hopefully you will see an improvement soon, and Peacock, I know its been a long time for you, but am glad to hear that the manual drainage is helping.
Lorna - are the tattoos painful? I'm going for planning on 19th Feb, although have a meeting on 6th to check my arm movement to see that I can get to the right position. Never been tattood, and a rather wary of needles!
Best wishes to all,
Had my Simulator apt today... and 3 tiny tattoos.. starting on the 4th feb .. nurse was going to give me script for tamoxifen.. but I mentioned I would like to discuss with Onc taking Nolvadex instead and feeling PMT so will have to have a hormone test to see whats going on there.. as they want it to stay away.. so do I!!!
Hope everyone else is well
Hi everyone, my name is Jacqui and I was diagnosed on New Years Eve. Have DCIS. Have had 2 ops and due to start 5 weeks of rads in Cheltenham. I have been asked to take part in a clinical trial for a new drug, but not sure what to do. I have been reading everyone's experiences. Makes me feel not so lonely. Bella I cannot beleive what you have gone through and still sounding so happy. I am really trying to keep upbeat about it but inside I am so scared. I have 3 grown up children and 2 adorable grandchildren, who I live for. I think it is the not knowing about everything. Hope to stay on this thread and keep in contact. Much love and respect to you all
Hello again girls
Pheebster, it was definitely the Tax that caused the fluid retention. I still have it some 14 weeks after chemo stopped. I was meant to be having 8 courses, but after 6 the Onc said "enough is enough". Fortunately it had worked on shrinking my tumour so a mx was possible at that stage. So far I've not had a problem with rads, except for the position of holding my arm up for 20 mins which really hurts. I am getting a bit of tiredness now, but it is nothing as bad as chemo!
The manual drainage for the fluid is helping, slowly. I can wear my ordinary boots now (although still tend to wear my big sloppy ones for extra comfort) but I cannot yet get into some of my trousers and still have to wear the huge joggers my Mum sent out to me.
I've been seeing what you ladies have to contend with by way of NHS treatment, prescription charges! Here in France if you have cancer you get everything paid for by the governments Social Security system - there is no question about the cost of anything. I was started on Herceptin almost straight away with chemo, all my prescriptions to do with the cancer are free and I get an ambulance/taxi provided to take me to and from hospital visits. As I said my journey each day for rads is around 300 euros, and I get to sleep too! It just shows that we are all meant to be EEC yet the differences in the health services are phenominal (sp?).
All the best to all, off for my daily frying now
Tanya...ask hospital for an NHS script rather than a hospital one. They may agree.....
You know what makes me sick.....the price of your prescription far outweighs the cost of tamoxifen which costs Â£1.62 yet Nolvodex is only a pound or so more....
Wishing you luck!
Hi. Saw doc today and told to expect letter re planning appt w/c 9 Feb - asked for delay on starting rads to visit elderly MIL so prob start 18th Feb. Good to start thinking about next step after last Tax today. Very grateful fir advice and support of this thread. Due to start Tamoxifen 16th Feb - hosp refused to script Nolvadex disappointingly but will still ask GP anyway. Wish me luck!
Happy Birthday Helen,glad to see your having a good one,you deserve to enjoy yourself after what you've been through.
Shelagh i'm with you on being worried over the rads,i started yesterday and i keep my eyes tightly shut throughout. I have been feeling faintly sick afterwards for a couple of hours,nothing major like chemo,but i thought there wasn't meant to be any SE like that,then again maybe it because i get a bit uptight. I really hate it when they leave the room. On the lighter side i do think it's funny when there talking to each other in all the mathmatecal terms,it really is like something out of star trek,especially with the laser line on four sides of the room.
Julie you've brought it all back to me regards the drains. It was the summer time when i had to cart mine about in flimsy clothes,scared someone would guess what i had in my cloth bag provided by the hospital. The breast surgeons at my hospital take the drains out maximum of a week regardles of drainage,as they think any longer has an adverse effect.Needless to say i had to go the full week,and i was still draining quite a bit.I ended up with a seroma which had to be drained off,it wasn't painful at all just a massive relief.
Best wishes to everyone
Thank you all for welcoming me to the thread....i do agree, this is a b****** of a disease.
Shelagh - hope the first radiotherapy session went ok, how strong you must be to have cope with what you have been dealt.
And thank you for the birthday comments! Hope you enjoyed your birthday Cat as mush as i enjoyed mine, i've been spoilt! 🙂
Glad you've got your dates sorted now Lorna68 - but what a mix up! A bit like the gas bill that arrived whilst I was on hospital with an "actual" reading (hello - no one came to my house!) giving me a bill of 1200 pounds!!! Checked the meter, and it is 50% overstated!
Cat - yes, I did get a comfy, but they didn't have the right size, so it is a bit small, but ok under baggy clothes. They should have the right one for me when I go back to see the surgeon tomorrow.
Must admit, I do feel bouncy - relieved that the surgery is finally over, and also feeling better from the chemo side effects. Really hoping I can ditch the teds stockings after tomorrow, and maybe even the drains too - is a week reasonable or too optimistic?
Shelagh - how did the first rads go??
And Happy Birthday Cat and Helen!
Love to all,
Finally got my planning apt!.. though they phoned me today and said I had missed it at 12pm today! I had NO letter.. when I got home there it was on doormat! So am now going Thurday... and start x15 on Feb 4th... have 15 mins in "quiet room" before that 1st one????? No asking me what window I wanted.. just a list of my appointments.. all over the shop.. O well have reading weeks at Uni so it fits in OK. And that 1st week I have two complementary therapies.... Shiatsu and Reiki! so will be "chilled" 🐵
Julie, congrats on getting home and sounding so bouncy. And welcome to Helen (you're so young!) and shelagh (what a bastard this BC is).
Julie, so glad you're doing well and home with the OH. Did the nurse at hozzy give you a comfee/softee to wear? If not, call them and ask for one to fit. PM me if you want website addresses for companies that sell comfy post-surgery bras.
Hi everyone, especially all the new contributors!
Shelaghc, what an experience to go through, to have just completed all your treatment for lobular cancer just to find ductal straight after. This is such a horrible, horrible disease.
I'm back at home now after my mastectomy last Wednesday, and doing well. I've still got both my drains in, and they seem to alternate between which is draining the most. I've also got lovely sexy white teds stockings, so those plus the drains (and the small matter of having only one boob) makes choosing what to wear a bit of a challenge at the moment! In my "at home" gear of baggy trousers, pyjama top and no bra just now, but off shopping soon so need to get myself a bit more decent. Finidning the whole bra thing a bit difficult - don't want to interfere with drains and healing scars, but with one side flat and the other a GG cup, it all looks a bit odd!
Right, OH is ready to go now, so have to try to find domething wearable!
Love to all,
Just joined this thread and have really enjoyed reading everyone's comments.
About me - I had lobular diagnosed in Jan 2003, age 43. After 3 WLE, I took tamoxifen for 5 years.
2 weeks after stopping the tamoxifen and being discharged for that episode, I was diagnosed with DCIS, invasive and in situ, on the other side HER 2 +, grade 3.(Feb 2008). I have had 6 WLE which has worn me out, mentally and physically, but am feeling good now.
I start radiotherapy this afternoon , 19th Jan, 30 sessions over 6 weeks. I'm a bit apprehensive about all this as I didn't have radio last time.
Anyway, looking forward to dropping in to this thread.
Bye for now!
Hi Helen....you have been on a long journey for sure, how wonderful to be coming to the final lap!
You will find us here most days - we keep each other upbeat and have become very close over the last few months.
Hi Helen, welcome 🙂 Happy Birthday for tomorrow, we share the same Birthday, although I shall be considerably older than you. This thread is so supportive, we'll all be here for each other to get through rads, give advice, have a few giggles along the way.
Hi all, i've just registered so thought i would say hello and introduce myself!
My name is Helen and i'll be 28 tomorrow!! I'm married and have a 5 year old daughter.
I was diagnosed with Breast Cancer April 23rd 2008. It was a shock to say the least to find out i had breast cancer at 27. I had a grade 2 tumour which was 2.5cm, had to have a mastectomy and i had an immediate reconstruction. I had 22 lymph nodes removed and 2 were found to be cancerous. I had IVF before my chemo started as i was told i had a 50% chance of losing my fertility and i still want more children yet! I started my chemo in July, had 3 doses of epirubicin, 3 doses of taxotere and 6 cycles of CMF, i have just 2 left and will be finished on 3rd feb and i absolutely can't wait!! I started Herceptin 2 weeks ago and will go on to have 16 more doses, so will finish that in december. I have my radiotherapy appointment on the 20th feb and will be having 15 sessions. Feeling slightly nervous about started that but hae been told its nothing like chemo! Which can only be a positive thing!
Anyway nice to meet you all