Hello all
I am due to start rads on April 10th, and feeling a little apprehensive. As I had neo-adjuvant chemo then Mx, I am a bit concerned about the radiation affecting the healing of the wound. Also I’ve got some cording in that arm, and hoping it won’t get any worse! Anyway please join in while we’re waiting!
Teresa
Hi Theresa
I had WLE and sentinel node biopsy on 16th February - grade 2 ductal with some lobular, node clear. I am having my planning session on Friday and rads start on 16th April. I was given Arimadex last Friday by my onc but am still working up to start taking them. I am also a bit apprehensive and just wnat to get it started now. How many sessions are you having? I am having 3 weeks plus one week targeted just at the tumour site - so 4 in all. Lets hold virtual hands through the next few weeks.
good luck to both of you,
im starting my radio tomorrow,
bit nervous, but be glad when its all over with,
15 sessions spread over 4 weeks because of the bank holidays,
Hi ladies
I’ve got planning session on 5th April, then to start rads about 2 weeks after but don’t have the dates as yet. Should hopefully find that out on 5 April.
I had WLE and SLNB for ILC 20 Feb. Nodes all clear so no chemo. Started Tamoxifen 3 weeks ago. So far, all going well but do have some cording, presumably due to the (6) nodes taken. However, I think that’s improving slowly so am working on stretches still.
Because of a probable thyroid problem (on thyroxine but suspect levels have changed due to 2 reasons) I’m absolutely exhausted at the moment but am hoping this will be rectified soon. I can’t see how I can manage the tiredness from RT on top of how I’m already feeling. I’m barely managing now (living alone so no one to do my ‘chores’)
Anyway, good to meet you all. Be helpful to go through the next month or so together.
Good luck to all of you
Hi Teresa and everyone,
I had an app. today with my Onc and we discussed rads, she thinks my planning app will be in about three weeks time and rads a week later. So could be end of April for me. Like hedonist, I too am having fifteen sessions followed by five booster sessions.
I had SNB end of Sept, followed by 2xEC and 4xTax, final chemo 12th Jan, had WLE 23rd Feb. My diagnosis was TN, metaplastic tumour, aggressive stage 3 and grade 3. My prognosis is reasonable, but not great.
I’ll be checking in here to offer support and keep up to date with you all whether I’m an April lady or not. So hoping I am, as I’m eager now for active treatment to finish.
Take care ladies,
Libby x
Hi All
Libby good to meet up with you on this thread too!!
I am having 13 sessions spread out over 5 weeks - which in one way is good (more recovery times between each zapping, don’t have to traipse up to Cheltenham every day) but also bad (drags it out for a lot longer). I don’t know why they do it this way at our unit, but Weme is having the same, and she’s in Cheltenhm too, so probably it’s just the way they do it at our unit. I think those ladies who have WLE rather than Mx seem to get a few more sessions than us full Mx ladies, from what I can tell.
I went up yesterday for my planning session at 9:20 only to be told they’d just found out the CT scanner wasn’t working so I was sent home. I’m waiting for another appointment, but they’ll have to fit it in before my rads start so I must chase them up today. I am due to start Tamoxifen as well, but the onc said the surgeon would sort, and the surgeon said the onc would sort!! Great! Must make call about that too.
Still working on the stretches but it is so boring and it hurts - not enough hours in the day!!
Glad to have some company on the last part of this unpleasant treatment journey.
Teresa x
Morning ladies,
I have had my appointment to see the oncologist on 25the April not sure how long after that rads will start.How long did you all have to wait. I was told by my surgeon I would be having 15 sessions.
Have a nice day ladies enjoy the sun.
Minx x
Received a phone call yesterday from Rads Unit, my planning app. is Friday, so pleased things are moving.
Libby x
Looks like I’ll be joining you all. Unless I have to start a May thread! Saw my oncologist today and told her I didn’t want chemo. (She made it my choice - as I was borderline benefit - it’s been a horrible week!) Signed RT consent form. Away next week and Easter week after so she said planning appointment would be in 3 to 4 weeks to start following week. 15 sessions, 3 weeks. Been told not to wear a bra - that’ll be a sight for sore eyes! 44(droopy)E!! I’ll be knocking myself out - or tripping over? Perhaps I won’t try to work.
Given Tamoxifen but told not to start it until after Rads finished. Also going to have Zoladex to induce menopause. Pellet injected into stomach every 3 months for 2 years. Yuk! My punishment for saying ‘NO’ to chemo?? Hot flushes here we come! 
Please don’t feel punished. I said no to chemo too and the oncologist was very snotty about it. When I spoke to the oncologist at the hospital who was handling my radio she supported my decision. She said as I only had a micro metastasis in the LN chemo would only add around 6% to my possible survival rate. I had menopause at 36 so am on femara but I would urge you to try fish oils and glucosamine/chondroitin supplements as these have really helped with the joint pain. I wear cotton sports bras with no bones and these give support without pain. Lots of luck going out to you. Remember it is your body and your decision.
Hi All - Looking forward to rads planning session tomorrow and now have all my dates and times.
I was given Arimadex by my onc last week but haven’t started to take them yet - need to work up to it but I think today might be the day. I remember being advised to take at a certain time of day but cant remember if that was morning or night time. Has any one any advice on this at all? Also how common is joint pain - I already have degeneration in my joints and spent last year losing weight and getting fit which has really reduced the pain significantly and now it looks as if this might become a problem again.
Heyho
Funny how everyone is different! I phoned my onc yesterday to see if/when I should start Tamox, and got a message back to get a scrip from my GP and start it, so this will be before rads, which start on 10th. Oh goodness, I just don’t want to start piling weight on and look frumpy. It’s bad enough just having one breast and extremely short hair!!
Libby when will your rads start, do you know yet? I have my planning tomorrow as well (it was cancelled Monday as the machine was broken)
xx
I don’t know yet when my rads will start, Teresa. Maybe I’ll find out tomorrow. I’m expecting it to be soon after Easter. I’m not looking forward to tomorrow, my app. is 9.40am and I’m so not a morning person these days (don’t sleep well). It will be good though to get the ball rolling and see an end to all active treatment. Bring it on!!
Libby x
Hi Everyone
I am starting my rads on Tuesday, I’m hoping the rash I have had on my arm will be cleared up by then and they wont care that I will probably still be taking ab’s (they think the rash may be a heat rash). I had my tatoos last week so all set to start, I will be having them like Teresa said every other day over 5 weeks, my onc says that one of the reasons they do this is so that they can treat twice as many people at the same time by giving slots every other day.
I looking forward to getting phase 3 over and done with so hopefully I can get on with life.
Good luck to all those starting soon.
Weme
Onc gave me prescription for Tamoxifen on Wed, said I had to get it from hospital pharmacy not my own, but mustn’t start taking it until AFTER rads have finished. Only given 30 tabs so presumably have to travel to hosp every month just to get prescription, even though having Zoladex injected every 3 months at own doc’s surgery. Madness!
Rads planning went well, all over and done quickly. Very pleasant staff, tattoo not at all painful just felt like a little scratch.
I was given a printout of appointments for five days, I show this to the man operating the car park barrier and he gives me a ticket for free parking, very well organised system.
My rads start 19th April.
Good luck for Tues Weme, let us know how it goes. Anyone else starting next week?
How did your planning app. go, Teresa?
Hi all
I also had a good Planning session this morning - all very pleasant and informative. Great that you have free parking - we just have a deal for parking for a pound - better than nothing I suppose. I also found the tattoo pretty painless and now have 2 tiny dots along with my still blue breast! I am wondering if I will always look like a smurf. They were also very happy for me to use Aloe Vera - they said they reccomend aqueous cream at least three times a day and although they haven’t undertaken any trials for AV that the women they treat swear by it - so long as you use 90%. I have been given times for all sessions. I asked for mornings if possible and they are all around 8am so it’s going to be early starts for me.
Has anyone been swimming yet? I have been swimming a few times a week since wound healed and have found the stretching really helpful. I started using the gym again this week as I thought I wouldn’t be a le to swim while having radiotherapy. I asked today and they said swimming is ok so long as your skin doesn’t breakdown as then you may pick up an infection and you must make sure you rinse chlorine off properly. Anyone else going to carry on swimming?
Hedonist, my boob is still blue too, I had the dye injected 23rd Sept - thought it would have gone by now! I’m going to use Aloe Vera (from H&B), and the Aqueous Cream which is provided by the unit. My BCN advised lots of moisturising to avoid blistering, apparently the boosters are intense and we need to be careful, so copious amounts of both Aqueous for washing and moisturising and AV.
My sessions are all in the afternoon which is better for me as I don’t sleep very well.
Not long now for this awful journey to be over, we’ll be done by mid May and able to get on with life.
Libby x
Hi JCJ
I am sure your GP will be able to do your tamoxifen prescription after the first one. My onc wrote to the GP asking him to do it for next five years. Still a hassle to do it every month but remember prescriptions are free.
Moya xx
jct
got my perscription from onc at hospital as well for tamoxifen to take to hospital pharmacy for 30 tablets. 2 weeks ago. my bcn said they then write to GP and i then get perscription of him to take to any chemist.
i have checked with my surgery and they have received notification to perscribe it. i just have to ring surgery for repeat perscription few days before tablets run out. got give mine 48hrs notice for it to be ready.
TTM