Breast Cancer Care Forum

Sorry, Susie, I put Rosie by mistake in message before this one. Hope you can get away without extra three boosters sessions - twenty is enough to get through. Good luck for Monday, it'll be good to just get started. Sandpiper x  ... View more

Congratulations, Libby!  What a relief. By the way, I'm envious of the cape you were issued with. I can see why you became attached to it. I'm given two  gowns - one to put the right way round and the other to put on the wrong way round. Plus little slipper socks. Clothes and shoes go into a bright orange plastic supermarket type basket which has to accompany me into the radiotherapy room. Have a lovely weekend - I'm glad you are beginning to recover and feel some optimism again.  I have just two more sessions to go - I had my review today. The nurse said that as the underneath layers of skin are burnt by the radiotherapy and so top skin will probably become redder as these layers reach the surface. My skin is perfectly okay at the moment. She said the tiredness may get worse for another week or two but should gradually improve after that. Something to look forward to. Sally - have you finished yet? Rosie - thanks for your message - will be thinking of you when you begin on Monday.   Hope everyone else still with sessions to go are doing well. Good luck to all of next weeks' starters - you'll be okay! Sandpiper x ... View more

Hi Sunflower, What a pain! You must be feeling reading fed up. Let us know how you get on at planning on Monday. The day has to come when you start rads, you'll probably feel relieved by then instead of being scared. Libby - glad you are doing well. The end is in sight with me too - quite suddenly - it feels like. I'll have number twelve tomorrow. When you start it seems a though the sessions will go on for ever, then before you know where you are they are, they are almost finished. Sandpiper x       ... View more

Hi Sunflower, Not surprising that you're feeling fed up, any one would feel the same. Hopefully your infection will clear up quickly. Radiotherapy is very strange, the machine is enormous and you can feel a bit alone - but the sessions don't take long and don't hurt at all. The staff  will help you manage, they are very experienced and you won't be the first person to go in there feeling scared. I've had ten sessions so far and am pretty much okay except for tiredness - I have got used to the whole routine of it all. In the meantime, take care of yourself. This time next month you will have come out the other side. I'm glad you got your Zoladex and sick notes sorted out and now have a GP who understands. Sandpiper x ... View more

Hi Jaybro, Am just going through rads at the moment, following a WLE and SNB. I haven't had the experience you're having but it doesn't sound like a lot of fun. I found out I had a seroma just before radiotherapy - it showed up in the ultrasound I had as I found another lump (which was okay). I think the seroma is more or less the same size still. The consultant said to let them know if it became painful or uncomfortable as infections could develop in the longer term and the fluid would then need drawn off. You could have it all checked out with the Breast Care Nurse and/or oncologist if you haven't already, because of the severe pain you are having around your rib area and the burning sensation. I read that the burning feeling can be a late effect of radiotherapy. I'm sure you have already thought of these things. You regularly give amazingly good advice to others on this forum. Just wanted to tell you that. Sandpiper x   ... View more

Hi Redfox, Welcome - you'll have a plenty of company as lots here are starting rads around the same date as you. Hopefully that should help you. It's a bit like being in no man's land, the time between surgery and radiotherapy. There doesn't seem a lot to do during that time except to worry about potential side effects and count off the days. Libby - glad you had a better weekend. There's nothing like grandchildren for taking your mind off treatment. I was pretty tired and lacking in energy on Friday and Saturday as I overdid things but I felt better again yesterday. I agree with what you and Fleur have also been saying about feeling alone during this time. I feel it most after the treatment sessions whilst getting changed again and then going and sitting in the reception area with a coffee. Yet I don't feel like talking to anyone there either and I haven't noticed many people wanting to make conversation either. I just feel the need to sit quietly and try to process what is happening to me before I go home again. Everyone is on their own journey. I'll have my tenth session tomorrow - skin still okay. Today I went in feeling fine but half hour after the session I started to feel very tired.  Hope everyone else is doing okay and those still waiting to start are as okay as they can be. Sandpiper x               ... View more

Hi Claire, It might be worth you posting on Hormone thread of Going through treatment about the bad hot flushes you've had since coming off HRT suddenly and have needed to go on to letrozole straightaway. Your oestrogen levels must be taking quite a dive so a big strain for you. I've not been on HRT in the past.  I have been on letrozole for eight months but haven't had any side effects except for tiredness.  Sandpiper x             ... View more

Hi Everyone, welcome Poppy and Claire. There are quite a few starting around 21st and going on through November on this thread, so you'll have plenty of company. I've had eight sessions so far and over the last two times have been more tired. The radiation builds up,  the same dose is given each time - I tend to ask a lot of questions. Skin is okay so far.   Sally, I have got the book from the library and am just starting to dip into it. Thanks for recommending it. Sunflower - I really hope feel a little better soon, at least to get more sleep would help a bit. Libby - How are you feeling now? Sorry about your mum, emotions are funny things and we don't always realise that we can still feel upset over the past - thirty years is a long time to be without your mum. Hope rads are going okay for everyone who has already started. Sandpiper x     ... View more

Hi Sunflower, Thanks for message - did you get any sleep at all? I have nights like that sometimes but I seem to be sleeping better now the radiotherapy sessions are well under way. I tend to wake around 5 o'clock in the morning though, which is too early. Obviously you've got a lot on your mind what with starting the zoladex and your GP not understanding what you are going through, then rads starting next week. Thank goodness you have a good employer. You can only take one day at at time. It's a bit of a cliche, I know. No side effects so far to rads apart from being tired.  Sandpiper x ... View more

Hi Tinaann, How did you get on today for your 1st session? Hope you didn't find it too daunting. Sandpiper x   ... View more

Hello All and welcome Tinaann. Am plodding on okay with rads just trying to rest more when I need to. No problems with soreness, heat or pain as yet. Am using Aveeno but may buy Aloe vera if I need to. Have learnt today that the machine can't squash me as it has sensors that prevent this (if they are telling the truth) and the beams are only switched on when the machine is still and at the oblique angles so that it only targets the affected breast. It is not on when it is moving around from one side to the other. Sunshine Sall - you seem to have drawn the short straw re not even a piece of paper to cover yourself with during treatment. You could ask, maybe it hadn't occurred to them. The paper does keep me marginally warmer and does help me feel less exposed as well. Congratulations on having your first haircut since chemo - hope you were able to celebrate it. Was wondering how you are doing, Sunflower, as you were feeling anxious about time off work, letrozole and rads. Hope everyone else is doing okay.  Sandpiper x ... View more

Hi Wonky, I had DEXA scan in May as I'd been on letrozole for more than three months by then. My GP referred me as the consultant wasn't in a rush to get it done. I'm glad I had it done as it showed some osteoporosis in my spine and low bone density in neck of femur. I had no idea and was quite fed up about it as I have always been active. I am also quite petite. If I hadn't been put on letrozole for breast cancer I would have been blissfully unaware of potential fractures in the future. I've had surgery and now am going through radiotherapy.  I am on treatment - calcium/vit d tablets daily and a bone strengthening weekly tablet - Alendronic acid.  The DEXA scan is very easy - no big, scary machines and the radiologist sits in the same room with a computer type machine. You don't the results straightaway.  Your results, if you have it done, could well be normal so that would be a boost and if they aren't at least you can get some advice and/or treatment. Take care of yourself Sandpiper x ... View more

Hi Spicey, Just popped over from the Radiotherapy Starters October 2019 thread as I saw your message. You are welcome to join the thread too if you want to. Have you had sessions all over the weekend as well? Are you going to have any breaks? Most units seem to do Monday - Friday sessions. It sounds quite tough to have treatment so many days without a break. I didn't need chemo, thankfully, but had been on Letrozole to shrink tumours prior to lumpectomy.  I haven't had any side effects. I had been expecting to have DEXA scan before, or soon after, I went on Letrozole but the consultant wasn't in any hurry to order it. My GP offered to refer me so I had the scan about three months after I had started on the drugs. The DEXA scan did show some osteopenia and osteoporosis so I was put on weekly Alendronic Acid tablets to strengthen them, which is similar to Zoledronic acid as Letrozole can thin the bones further. I think the dosage is lower for osteoporosis rather than for bone strengthening to protect against secondaries. I think serious side effects are pretty rare. I had a dental check up and hygienist appointment before I started the tablets so that any treatment could be carried out beforehand. I hope you are doing okay on, as you say, your unexpected journey. You've not had an easy time. Sandpiper x       ... View more

  Hello everyone Thanks for your message, Susie B and for the photos. The outfits look quite cosy - I have to make do with a piece of tear off paper roll that the staff put over me just before they leave the room. I am very envious. The gowns they give out where I am are definitely one size, 6ft size, and so almost reach down to my ankles. Sunshine Sal, I have ordered a copy of the book you recommended from our local library- am looking forward to reading it. Hope everyone is doing okay, either counting off the days to start or the days to the end. Sandpiper x   ... View more

  Hello Everyone, Good that more people are joining our thread - Hi Fleur and Libby. I'm going to check out that book that was recommended as well. Have been more tired today but have had a busy few days anyhow so maybe it's that. It would be nice to be in Corfu like Caz for the next two weeks instead of trudging off for the rads.I worry a bit that the machines will not stop when they come close but continue to move closer and closer and squash me! Like Star Wars or a James Bond film. It hasn't happened yet!  The radiotherapy has been what I was most daunted by because the experience of it is so outside of normal everyday life. Then, of course, it will come all come to a sudden end - we'll be sort of ejected out the other end wondering what on earth has happened. Am still trying to make sense of it all. I haven't told many people about my diagnosis as I didn't want to cope with a lot of different reactions to it - friends/family  being over concerned or being overly positive - being 'lucky' as you've said.   On a practical note, I need to re-start my post surgery exercises as my shoulder and arm feels a bit painful and stiff now when I raise it, whereas it has been fine before. The staff have said that will start to get some sharp pains in the treated breast from tomorrow but that it is a normal reaction. They also said that from fourth session to seventh, treatment time will be quicker as they don't take any more X-rays until session eight. I enjoy having a cup of coffee and biscuits from the Macmillan coffee machine, it gives me time to collect my thoughts rather than just rushing off home. love to everyone Sandpiper x         ... View more

  Hi Everyone, Good you have all the planning appointments out of the way.  I had my third rads today - I still haven't got used to it, it all seems so surreal. So different from anything else I've experienced. Haven't had side effects as yet but expect tiredness will kick in next week. Skin okay so far but early days and am being lavish with the Aveeno. Julia B - ROSCO trial seems a worthwhile research project to take part in - sounds quite complicated though. The chemo route is such a tough one and I agree with Caz in that I also feel I have got off lightly by not needing chemo or mastectomy. Have a good rest over the weekend everyone. Sandpiper x x       ... View more

Hi Susie B and everyone, I had my first radiotherapy session today and have survived! Staff were very good. I found the process quite strange - a bit unnerving even with the machine moving around and lots of whirring and clicking noises. I did also find it quite relaxing at the same time. It was a bit strange sitting and waiting beforehand in a little ante-room alone until they were ready. I expect it will all seem a bit easier as the days go by. It was painless though. Am restarting What is the ROSCO trial, Susie B? How have you managed with all the chemo you've had to go through? It's been a long journey for you. Sandpiper x          ... View more

Caz - I start my radiotherapy on same day as your planning and ct scan.  Are you off to Crete straight after?   Sunflower - With me I was given my dates at planning and they started about two weeks later, different units might vary though, but it shouldn't be very long. I don't know about the CT scan with dye as I just had an ordinary one, maybe you could ask on one of the earlier threads like September Rads group. or check on helpline here or with your Breast Care Nurse. September members helped me with my queries. I'm sorry you're feeling so upset and worried. With the Zoladex and Letrozole prescriptions you could maybe ask GP surgery to ring hospital to confirm what your GP needs to prescribe or ring Consultant secretary or BCN to hurry them up. I got my first prescription from Consultant but then they were slow in sending out letter to GP with what prescription I needed after, so that was stressful. I've been okay on Letrozole, but hot flushes and joint problems seem to be the most common side effects. I was recommended to have dental check up before I started on Adrenonic Acid for some osteoporosis in case treatment was needed.  It's all these uncertainties that are hard to deal with I think. Sandpiper x ... View more

Have a great trip, Olibex27 - these are the sort of presents you need for yourself just now! Just don't get sunburnt! I finish my radiotherapy on 22nd, so ending when you are just beginning. I have Aveeno at the ready as well. I felt a bit odd when I was buying it, thinking of the reasons why it was needed.  Sunflower 14- have you had your planning appointment and ct scan yet?   Sandpiper x ... View more