What they said was that the moisturiser did not effect the likelihood of skin breakdown certain factors like breast size having to have a breast cup...to do with where lump was and keeping rads away from organs..made it more likely but it was important to avoid friction and keep dry. I found the moisturiser was not absorbing in the cleavage and under bust area...activated by my on going problem of finding a good fitting bra. Stopping the moisturiser made definite improvement and itching stopped Christmas day...I've now had 15 sessions and burn has just started to itch under bust. Looking slightly dry so going once a day moisturiser only on the dry nipple area....but it's hardly advisable dryness.
Hi. I can 2nd that about the gel dressings. I used them and they were brilliant. I have 1 left and padding which I thought I would keep just in case I needed it but so far so good. Good luck. x
Hi Indigo52. Sorry to hear you are having problems after finishing your rads. I develped the same problem as you but luckily I was still havig treatment and it was my last one. I saw the skin radiologist at the RBH and she put on a special dressing and padding. She gave me some to take home and have to say they are working really well. She did say if i needed to see her again to ring the dept but I don't think I will need to. If I were you I would ring the rads dept and explain your situation and I am sure they would see you. Good luck x
Hi To Everyone
Just wanted to wish you all A VERY HAPPY CHRISTMAS. Have a lovely few days and enjoy the rest and time off from treatment. xx
Off for my ears this morning then 4 days of rest....wishing you all a lovely Christmas with no clock watching worries....Turkey excepted.
SML - congrats on finishing your rads today, sorry to hear your skin is showing side effects. I'm quite sore and have a rash above my boob but this may be down to the amount of cream I've been using. No more trips to the Royal Berks for you, no more ghastly car park. I started a phased return to work at the beginning of November and am due to up my hours by 2 a week in the New Year. It seems painfully slow but I am going to make the most of my remaining free time.
Lola - did you have your bone density scan before you started on your medication. I've already started my medication, Anastrozole, but I don't have my scan until January 6th. I'm guessing if there's a problem they'll change me to something else. Apart from the first couple of weeks when my hips were killing me I'm not suffering any major side effects from the tablets. (So far). I am also with you and the other ladies about being fed up being told how well I look. I suppose its supposed to be encouraging, all I can see when I look in the mirror is a woman with no eyelashes and nylon hair! You're quite brave looking at all the stats, I have decided to take the ostrich approach and stick my head in the sand. I can live with not knowing the chances of a recurrence in the next 5 years and all that's associated with it. I know that sounds cowardly but I can honestly say I'd rather not know the odds, otherwise I might be permanently worried about it.
Jannie - well done for seeing it through and making changes at your hospital. Changing rooms are there for people to change in, and changing rooms need mirrors. It just goes to show that complaining works.
I hope all the rads ladies have a good Christmas, eat plenty, drink red wine (it's good for you!) and generally have a change of routine. Enjoy time with your families and some much welcome normality.
HI SML1903 thank you for your reply. I was put onto Tamoxifen as my bones "failed" the bone density scan. At first I was put onto Letrozole which is in the same camp as your Anastrazole, Unfortunately these drugs tend to be bad for bone density, hence the scan. They then took me off Letrozole and shunted me over to Tamoxifen. If you have not had a bone density DEXA scan then you really ought to ask your GP to organise one for you (although they should offer it). I had no idea my bones were losing density so it was quite a shock - although I now realise that about 1 in 3 women do have bone density problems/ osteoporosis!
I did not suffer from taking the Tamoxifen in any really obvious way, but the longer term side effects really worried me. Tamoxifen reduces the remaining risk by around 38%. In my left breast the remaining risk is now about 1% and so I can live with that risk as 0.62% with Tamoxifen isn't that great a benefit. As for my right breast my oncologist took the view that cancer developing was a low risk and wouldn't give a figure. She did say that as I will now be monitored any cancer developing will be detected early on. After all if the Prime 2 research is accepted by NICE then women like me may not be offered rads at all....certainly not as now after the WLE and only in the case of a recurrence.
None of this is a 100% solution and so I am telling myself to accept the compromise - and I can only cross fingers and hope that I do not regret it.
I know what you mean about people telling you how well you look and how well you are coping with the treatment. Sometimes I just want to say its harder than you think coping with the treatments and everything that goes with it but I don't think they would understand unless they've been through it themselves. I have been into school a few times and the other staff make me feel guilty for being on sick leave and one even thought my treatment had finished ages ago. My GP is even a bit unsure about me returning to school after Christmas and wants me to do a phased return.
I had my final rads today but after being really sore over the weekend and my skin showing signs of breaking down I now have to apply special dressings to it. Just hoping it clears up before I see my GP.
I am 59 like you and have been put on Anastrozole and just wondering why you were given Tamoxifen. The worst side effect I have experienced so far is hot flushes followed by being freezing cold but just hoping it will get better. Take care.
Best wishes to everyone still going through their treatment over Christmas and new year. x
Hi everyone, what fantastic news about the mirrors! It just shows that it is always worth saying something, even if it seems incredible that nothing has been done before now. I finished my treatment on Friday and am now waiting for the full impact of the rads to do its worst. I am very tired and a bit sore but not too much and so its manageable. I am getting a bit tired of being told how well I look though as I feel like I am being a moaning minny if I reply by saying that it's all a case of appearances being deceptive!
In case anyone is interested I told my oncologist on Friday that I really hated the idea of taking Tamoxifen, not because of the side effects as they had not been too bad, but because of the risk of cancer of the endometrium/ problems with dry eyes leading to cataracts AMD etc in the future. Instead of advising me to be brave and carry on as it will be worth it she simply told me to "throw them in the bin then!". My oncologist is quite well known in the Cancer Research world and she quoted results of a couple of studies, where the view is beginning to form that as radiotherapy only benefits 5 women out of a 100 (this is stage 1, grade 1 early breast cancer people) then it may be better not to give it after surgery. Saving it for those few women that have a recurrence. I had been thinking about getting the risks of a recurrence down to the tiniest figure possible, rather than looking at it the other way around as this research is doing.
http://www.cancerresearchuk.org/about-cancer/trials/a-trial-looking-at-radiotherapy-after-surgery-fo.... She did mention that the research was for women over the age of 65 but felt that as I am 59 that was near enough. In a way it's a pity that we didn't have this kind of conversation before I started the radiotherapy, but with all of the delays I was simply desparate to have it done before the new year.
Good luck to those of you who are still having rads this week. If nothing else it should be quiter and therefore less chance of a queue!
So glad to hear they have decided to put mirrors into the changing rooms for everyone. I know from personal experience how important they are to those of us wearing wigs. A little training for the radiographers on empathy for their patients would help a great deal. I am surprised this is not part of their training anyway.
I am feeling much better thank you, I think the rest over the weekend has helped. I am just very sore under my breast and I think the skin may be starting to break down so will have to ask them when I go for my appointment today.
Good luck with your rads.
SML hope you feel better tomorrow and your last visit goes well. One step closer.
I had a call from the administrator to say she was ordering 3 mirrors for the 2 reads rooms and planning...she's also going to tell them they need to use the changing rooms...hope she does as it will make it nicer for others.
She does staff training so I suggested a section looking at wigs and self image to improve empathy.
Read are fine so far just red session 6 tomorrow.
Just 1 more booster to go on Monday and then I am done. Not feeling very good today, very tired and have a headache that just wont shift. This afternoon I had a hypo which didn't help. Don't know if it's the rads making me feel like this or if I may be going down with something. How is everyone else doing?
Yay! Arrived 30 minutes early for my appointment today and hadn't even sat down when I was called in. Treatment done and out of the department before appointment time. Must be a record. Only 3 boosters left to go now so all finished before Christmas. Good luck to all you ladies who will have to have rads over the Christmas break.
I am so sorry you are having such a horrid time of it. They are being totally unprofessional and working as they are in hospital they should be able to empathise with their patients. I would be inclined to have a chat with the patient liason officer. It is definitely not the way any patient should be treated. What are the cameras in the changing room for that is awful. I am going to see if there are any in my changing rooms tomorrow but I haven't noticed any. Will be thinking of you tomorrow x
Hi all, hope you are all doing well!
I had my rads in June this year and still read the forum and find it really strange how different hospitals deal with us.
At the hospital I went to they didn't have any changing rooms - I wasn't offered a gown all the way through. They just called you into the treatment room - there was a chair for you to place your clothes on and then walk over to the treatment table.
Not ideal to say the least but I got used to it after a few days.
Hi jannie13, I am sorry that the atmosphere has become so frosty - if you are anything like I am then at times I have felt really bad-tempered and having a frosty atmosphere would not have helped how I was feeling. How could they be so rude and let you over-hear them! I can only hope that you meet a different team soon, as at my hospital I have lost count of the different teams and machines that I have been sent to. The dignity thing does get lost though... I was offered a gown with a broken zip on the first day. Perhaps I was meant to keep it for the rest of my treatment I am not sure. Anyway from then on no gown was offered for several days and I just took my top off and did not worry about it - but it's not ideal really. (Can't imagine what it is like for the men though!) By the time I was offered a gown I actually felt self-conscious about accepting it (such an exhibitionist!).
Hi Jannie 13
No you are not the only one who would be annoyed if there was no mirror to straighten their wig I would be too. How silly to say you should see a councillor to boost your confidence. I am lucky and all the changing rooms at my hospital have mirrors in them so I can straighten my wig. Is there a suggestion box so you could write a comment suggesting all the changing rooms should have mirrors.
Hope the rest of your treatment goes well
Yes I had thought of taking something in for them on my last one next Monday, may be a tin of biscuits or something like that. I did notice a man and women waiting outside LA3 when I walked through. Hopefully you will have had your treatment by the time I arrive otherwise they will be ruuning really late. I wondered what happens about treatment if you are really unwell with a cough and cold. Do they still treat you I wonder as you can't always surpress a cough and keep still or a sneeze. My daughter is unwell with a bad cold at the moment and I'm trying not to catch it but that's not always possible.
Glad it's all over before Christmas. I over heard someone say that they will have to have treatment on Saturday and Sunday as the dept will be closed on Christmas and Boxiny day,
Hope you had a lovely weekend and are feeling ready for your last rads.
I went for my 11.00 appointment today and wondered if we were sitting in the waiting room at the same time without realising it. Was your appointment on time? I arrived only to find there was a 20 min wait which they changed to 30 mins and then to 40mins. I was called in to change and then had another 15 min wait finally being treated in LA4. I was very concious of what you said about being only a breast though and felt almost like i was a bit of a nuisance. I much prefer the staff in LA3 especially the scotish one Cameron I think his name is have you met him? My appointment tomoorow is at 12.20 so hope LA3 is working properly tomorrow.
Take care x
Hi, my soreness is in balance too. I searched this forum and came up with the genie bra and bought 3 off ebay for £8. Not terribly flattering but so soft. The cream I found in a number of places online (including the obvious online seller that I really do not want to plug) - Robin Logan's Therapeutic Seven 7 Cream. Enjoy your day off!
I think you are are wise not to over do it and then you will be able to enjoy Christmas. Like you I am able to drive myself to and from my appointments so my husband has been able to have a break. He was so good after I had my surgery and couldn't drive taking me to all my appointments. I had problems after surgery and was seeing my consultant about 3 x a week.
My soreness has not got any worse since I started applying the cream more often and I try not to wear a bra if possible when I am at home but a cotton support camisole. What exactly is 7 seven cream and where do you buy it from?
Good luck. x
How amazing that we are being treated at the same hospital for our rads. I had my chemo and surgery at the Dunedin but they don't do Rads but still having to pay the RBH or rather Bupa are. I am having my treatment on LA3 but for 2 days had it on LA5 when there was problems with LA3. I usually get lunch time appointments but next week have a few earlier ones. I have been lucky since the day I had the long wait and have been treated mostly on time apart from a couple of times. I haven't heard anything like you refering to breast cancer rads as 'just a breast'. Thats awful as it's as bad for us as any other type of cancer although I think that Tuesday was the day I found they hurried my treatment and I didn't feel they were doing all the checks as normal. I haven't had to go to Bracknell though for rads. I did get the choice as to where to go for rads treatment and could have gone to Bracknell but as I live in the Reading area I thought the RBH would be easier. I have just 6 more treatments to go including 3 boosters and I finish on the 22nd.
Good luck with your last few treatments, take care x
They changed my appointment times too on the day of hy first treatment by simply giving me a new schedule. I nearly refused it saying that I already have the appointment times! The radiotherapy unit is becoming much quieter now, presumably as most people decline the opportunity to have rads just before Christmas! I am not surprised you are nervous - I was out of my mind with worry before my first appointment. Hopefully you will feel less nervous as the days pass....good luck for Monday!