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preparing for radiopherapy

17 REPLIES
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Oak
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Re: preparing for radiopherapy

Hello Pinklily, I have completed 12 radiotherapy treatments with 3 still to come. I also have sensitive skin, very fair, sun intolerant, so I was concerned about a bad reaction. I can say that so far I have had no bad skin reaction apart from pinkness. I've experienced significant heat after treatment and occasional stabbing pain in the breast. I am lacking in energy but still able to walk an hour a day. I am 66 years old. I can share with you what I have done to try and help my body cope - I have been drinking 4 litres of water a day, in particular immediately before and after treatment (in the car park!), I have not used any creams as the Dr at the planning session said it doesn't make any difference, different radiographers gave the opposite and varying advice (confusing). After each treatment when my breast has felt extremely overheated, I have cooled it with either a hand held battery fan or an old fashioned "Spanish" style fan (works best) until my breast feels a normal temperature again. This can take 30 minutes or so. I have walked 3 to 4 miles most days, taken cod liver oil and a turmeric drink (teaspoon turmeric in warm water) daily. Good luck with your treatment. 

Member

Re: preparing for radiopherapy

Hello Tani,

 

You are in shock - we feel for you, and we know those days where we are sure this is a bad dream or a mistake, and we just need time to take it all in.  If you have been struggling with depression, now is the time, in my opinion, that you make sure you are still looked after in that area, because when we know our signs and symptoms, it is always best to acknowledge them before they really take a tight hold on us?  Please don't let depresssion add even more to your worries.

 

Always someone here to talk with, who has been where you are now, and lots of friendly 'faces' - look after yourself,   - b-r-e-a-t-h-e-,  a step and a day at a time,  and sending you hugs aplenty .x

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Re: preparing for radiopherapy

This is my first post , I am waiting for an appointment with the oncologist so I do not know when the radiotherapy will start. I am 71and had regular scans. I had a letter in June to say I had not been sent an appointment for my final scan and was sent an appointment .I never ever thought I had cancer , I had no lump but they found DCIS and something else, both in my right breast . I have had the two operations , I was being treated for depression before all this , I was recovering but now it is back .

I feel awful that it has come back and once again my husband has to do

my chores ! We are going to see my son's and my sister and her family tomorrow , I just hope I do not throw up which is what I do when stressed !

Wish me luck !

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Re: preparing for radiopherapy

Thanks so much for your support, reading the posts are like having a group of friends you can talk to who totally understand about what you are going through xxx
Member

Re: preparing for radiopherapy

Hi cjp. Don’t feel guilty for not being at work. You need to do what your body is telling you to do and it sure does tell you when it’s getting tired 💤. I only had one day off work and that was my surgery day. It has been my way of coping with this journey and I am fortunate enough to work from home. I have just started phased back into the office and my surgery was in April. Don’t rush it. As you say the emotions and my first day back in the office was good but at the same time emotional and tiring, plus I have to dress for the office now lol instead of shorts at home. Never feel guilty.
Member

Re: preparing for radiopherapy

Hi, its really good to read all your posts, l have my first appt with the radiotherapy oncologist tomorrow for consent and explanation. I am then going to wait for the planning scan. I had surgery for high grade dcis at the beginning of July and l have taken time off work since the surgery. I have felt quite guilty at times about this as many women have seemed able to combine working with radiotherapy as well as getting back to work fairly soon after their surgery.  Emotionally less too stressed and tearful l think to work but that hasn't stopped the guilt bit. The breast care nurses are great and more or less said not to work in between surgery and radiotherapy. The last week or so have been better emotionally and l am just hoping the radiotherapy goes ok. Has anyone else needed much time off work? 

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Re: preparing for radiopherapy

That's exactly what I said to my husband, which he thought was crazy because I've already had a number of major operations and was very pragmatic about them.
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Re: preparing for radiopherapy

Just to add to other comments, I didn't need specialist creams either  -  the Dr Hauschka Almond Oil and Aloe Vera gel were my only staples during and after treatment.  It's usually a 6 week wait roughly until planning, and then 8-9 weeks I think until radiotherapy begins, as they have to be sure that your wound/s are properly healed.  We all understand your apprehensions because we've all had them, and then we feel irrational and childish, but we are entitled to feel scared and wary of the unknown  -  I remember bleating to my bestest schoolfriend in an email that 'I don't want to have surgery, I want to run away'  . . .  

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Re: preparing for radiopherapy

Thank you Gill3105, it's so good to speak to people who understand and don't think I'm blowing out of proportion, as my husband says, not that he has ever had radiotherapy.

 

No, I've decided I don't want to go on the hormone treatment, with all the pain I suffer from my arthritis, that's bad enough. I'm on Naproxin, which is a wonderful anti-inflammatory drug and makes a lot of difference to my mobility, but I won't be able to take it with any of the hormone treatment, I did some research and I might be given a few extra years to live on hormone treatment, but my mobility will be decreased considerably, so for me, quality of life, no matter how short, is better. Thankfully my husband agrees with me and as he is nearly 10 years older, we would like to have an active good life as long as possible.

Plus, my body does not react well to a lot of medication, which is why I'm worried how it will react to radiotherapy.

 

Thank you so much ladies, it is so good to be able to reach out and know I'm not alone.

 

 

Member

Re: preparing for radiopherapy

Pinklily. Rads really is not as bas as you build it up in your mind. I finished mine on Friday. I am tired and skin is a bit pink some blisters a bit itchy but nothing that I can't handle. My hospital provides cream but I have also used Aloe Vera gel and Aveeno. I would start to moisturise now so you are in a good position before you start. Increase your water rate now. Listen to your body rest when you can and visit here when ever you have a worry.
Member

Re: preparing for radiopherapy

Bless you pink lily th anxiety gremlins are nasty things and the waiting game is the worse. It was my surgeon who gave me my results Wle snb no node involvement so was straight to radiotherapy. Radiotherapy is no where near as bad as we imagine and possibly fear. I used aveeno and had the aloe gel in the fridge for when my skin broke down under the breast. I hasten to add hear it was minimal and cleared using no creams at all as advised by my rads team. Your rads team have creams they can give to you to help with any soreness or skin breakdown. I would up the cream once you commence treatment and a cream you prefer. They do say to test on your forearm first specially the e45 but ladies have used this all through so it really is a matter of choice. I know I can’t stop your fear but it really is not so bad and is very doable. Will you be going onto hormone tabs if you were er+? You will know better at your results meeting as the plan will be put into place. Keep doing the arm excersise that you are probably still doing post op. If I can help in anyway with your fear just private message me and I can help with the experiences I have had and here I am out the other side with minimal side effects from both radiotherapy and hormone tables of which were my biggest fear of taking them and kept putting off and thankfully one hot flush a day is the only se I have from them. Stay with your positive mind. You will do this. Take care
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Re: preparing for radiopherapy

Should have said, as it's to see the surgeion again, it does not look like it's straight to radiotherapy, but fingers crossed my nurse was wrong.

Member

Re: preparing for radiopherapy

Thank you for all your help and advice. Yesterday I received an appointment for August 31st to see my surgeon regarding my results. I've got to say, up till then I've been really upbeat and I'm the sort of person that goes into battle, fully confident, my husband calls me, a 'rockviller in nickers', today I feel more like a chihuahua.

 

I've always dealt with things, no matter what, but this one letter has made me want to run and hide.

 

I'm not frightend of the cancer or of dieing, I am scared of the radiotherapy, the thought of being burnt is overwhelming me and making me feel physically sick. I'm hardly sleeping, because I can't get it out of my mind. I know this sounds silly and I've had many more serious operations, some life threatening, but I'm trying very hard to rationalise what will happen with the radiotherapy, I've researched and even viewed the treatment as I always do, but for some unknown reason, I cannot disperse the fear.

 

I've always mosturised my body and I'm still doing that, although as it's only eight days after surgery, I'm still waiting for the sterio strips to be taken off, so can't mosturise under my arm where the lymth nodes were taken or my breast yet, although I do the rest of my arm.

 

My surgeon has cut the cancer out from under and around my nipple, so I suppose that's where they will target, although it has spread outside the milk glands, next week I will find out how far and if in the lymph nodes.

 

As you adviced, I am trying to drink plenty. Should I moisturise three times a day now, or did you mean once I start. I'm also getting confused, a lot of people said they were told to use E45 cream, but my Mc Millan nurse says Alo Vera because it does not contain lanolin, is it best to use gel or cream if I use Alo vera. I've bought loads of alo vera because I love using it, but it is the gel?

 

 

Member

Re: preparing for radiopherapy

Thank you Paulus. I say if I can help one person then I am doing good. Hope you are all ok and not to many se’s
Member

Re: preparing for radiopherapy

Ah thank you Gill, your expertise helped me I remember xx

Member

Re: preparing for radiopherapy

Hi pink lily. If it helps I am 63 and here to tell the story!!! Hoping your results are All good and straight to radiotherapy. We are all very different and react in different ways but my advise and experience is. Start drinking loads stay well hydrated. Start to use a cream on the boob around your back and up the neck. Twice daily then up to 3-4 time daily once you start. Find a cream that suits you. I used aveeno and still do as and suited me. Use the baby version or of course a cream you prefer. Excercise if able I only did short walks and still do when I hit a tired patch which for me is 2:00 most days. Quick ten min walk and I am fine. I won’t sleep in the day so walk through it and it works for me. Depending on how many you have usually 15 or 20. Mine was 20, 15 normal 5 boosters. During I had no problem what so ever, the only problem was parking!! Finished rads and 10-14 days after I had finished it all started. Nothing major, tad breakdown on the skin, itching, lovely shade of brown. For me this is when it hit home what I had actually been throug and at this point I stepped off the rollercoaster after seeing oncologist and told to go off and get on with my life. Getting there physically 99% there mentally varies between 95% and think yes I’m getting there then the emotions kick in but only for a short time as won’t allow them to take over, I get up and I do something. I think I can say now 7 weeks post active treatment the emotions are like the anxiety gremlins which we all get/got back in the early days but not quite so traumatic. It’s just getting used to what is supposed to be our new normal. Strange thing and not easy to explain but getting there. Just stay positive, take each day as getting nearer the end, don’t let it beat you. Hope my experience helps and good luck
Member

Re: preparing for radiopherapy

Hello pinklily,

 

I'm 63, always walking everywhere ( can't drive ) and I had surgery in May.  I had radiotherapy (15 standard doses and 5 boosters, because I had very little margins).

 

What I have always read is hydration - drinking plenty of water daily  -  and keeping the breast and surrounding area moisturised.  Different ladies swear by different products, as suits their skin.  The most frequent ones mentioned seem to be Aveeno and E45.  Personally, I used Dr Hauschka Almond Oil as it has no alcohol or nasties in it, and it suited me fine.  When you have your planning session for R/T, I am hoping the procedure will be the same as I experienced - where one of the technicians sits with you and goes through exactly what happens, gives practical advice, and lets you know the sort of help available to you  -  where I went, there was a lovely specialist nurse who was always available if you needed her, for advice or something you might need from her store cupboard, and I saw her once weekly as standard practice.  (They also had some complementary therapies available, but I never took advantage of them).

 

I'm sure someone will come on to give you much clearer advice than me - but I just wanted to reply for the moment.  All the best. x

Member

preparing for radiopherapy

I had surgery on the 14th August for invasive breast cancer, grade 2, ER+3. Three lymph nodes were taken as well as a small mass, there was no lumps and it was only picked up during the routine mammory scan.

 

I'm waiting for the results of the lymph nodes, hopefully within the next couple of weeks, fingers crossed they are clear and I can go straight on to radiopherapy.

 

Can anyone help me prepare for this please, my skin is very sensitive and I know will react in some way, I've also read it makes you very tired. 

 

Would appreciate any help and advice that can be given. I'm 62 years old, but very active as well.