I went to my GP because my right breast was getting bigger and I felt a thickening at the side…the mammogram was clear but the doctor found a small 9mm lump and after biopsy it was diagnosed as a DCIS and was removed. There it was meant to end. Now I’ve been told that I need 15 doses or radiotherapy which start next week…unfortunately in the middle of a post grad year to get my lecturer’s cert at college, part time. I feel a bit of a wimp complaining, since so many are having to suffer chemo treatment…but I am still devastated and wonder if I can finish my course…will there be more treatment that I havent been told about?..Any advice? Thialoz x
Hi Thialoz
I know what you mean about not telling you everything and then they make out they aready told you. I think everyone has slightly different treatments. I had chemo, then operation, then more chemo and then radiotherapy and now I am taking tamoxofen. I think the idea is that it doesn’t freak you out if they give you little snippits of information, and sometimes until the do the operation they don’t know what treatment you will need. My gripe with the oncologist was that he would say you need 2 or 3 treatments and they increased.
With the radiotherapy, I ended up with 20, it is tiring but doable. I think for me it was the journey every week day. I was lucky that someone either my OH or sister gave me a lift to hospital, I’m not sure I could have driven there myself. Your Post Grad may help take your mind off the treatment, I needed to do something that took my mind off it anyway. Do you have to teach when you are doing Post Grad? I found that using aqeus cream (not sure of the spelling) helped, I had an allergic reaction to one lot of chemo, so was even recommended to use it for washing. I didn’t seem to burn too badly, only went a little pink. I don’t know if that was because of the cream or the lengh of radiotherapy I had, it was only short bursts.
I finished treatment in October and started work again in November, it was a phased return, and I do feel tired some days after work. there is light at the end of the tunnel.
wish all the best with your treatment, and hope your Post Grad goes ok.
Sue
Dear Thialoz
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Hi Thialoz
My experience was completely different to yours. I was told everything about the treatment I would be receiving on the day I was diagnosed. To be honest I did go armed with some questions such as what grade/stage my cancer was. In fact when I asked my NPI score they asked how I knew about this (NPI is a prognosis indicator) they don’t tell people this unless they ask. I think they decided I was the type of person who would be on the ball at asking questions.
I do not think reading up loads about treatment and prognosis is helpful, it could scare you to death, but if you appear interested in the course of action to be taken they will tell you. I guess they are never sure just how much info individual people like, they go my us in other words.
I hope this has helped a little.
Take care
Carol
Thx everyone for your comments and support…I’m so glad to have found this forum and realise that there are other ppl out there to talk to and share with…I’m dreading my first radio treatment next Tues but sure it’ll be much better than I imagine…
Luv and best wishes to all…Thialoz x
Hi Thialoz
I am just back from my 3rd rads treatment and all good so far! It’s really not scary, just be prepared to lie really still, which for me today was hard as I am sneezing a lot due to nose hair growing!
Hope it goes well for you , and sorry that you feel you were kept in the dark earlier on. They seem to have made my treatment up as they went along (I’m sure they didn’t but they did spring a couple of things on me!), it would be good to know right at the start what their plans are.
Cecelia. x
Hi Thialoz,
You really don’t need to worry about radiotherapy, there’s nothing to it. It’s a hassle having to get to the hospital everyday, but that’s it. You should be able to ask for appointment times to fit in around work commitments.
I had 20 rads and had no skin problems. A little bit sore at the end, but a nurse suggested putting a cotton hankie between my skin & bra which stopped any rubbing, and I only did that for a week. My hospital gave me a tube of acqueous cream, but I didn’t use it, I used 99.9% Aloe Vera Gel instead - you can get it from Holland & Barrett. I had seen it recommended elsewhere for use during radiotherapy. If you use Aloe Vera it is important to get one with a high percentage, as lower percentage ones have other ingredients in which could cause irritation.
Thank you Cecilia and Road Runner for your comments and tips…appreciate it a lot…it feels like a difficult lonely time…
Thialoz x
Thialoz,
Forgot to add - I worked all the way through rads (& chemo), so there’s no reason why you shouldn’t finish your course. You will probably get tired, but I think that’s due to all the travelling & waiting at the hospital rather than the treatment.
It can be a very isolating and lonely journey Thialoz, but I have found this board to be of great comfort to me when my friends have difficulty understanding.
Roadrunner, I have the Aloe Vera 99.9% Lotion rather than gel, do you think that would work just as well?
Cecelia. x
Thialoz, don’t be scared about your radiotherapy treatment, I have had my 8th (of 15) today, and it really is nothing to worry about.
You lie down, feet against a “board” and arms above your head with hands lightly clasped. The radiographers position you, then leave the room while a circular machine attached to an “arm” moves a couple of feet above you and zaps the appropriate place on your body. You hear very little, see nothing and feel nothing. It only takes a few minutes. The radiologist comes back in the room, helps you off the machine and that’s it…!
You will be advised to use unperfumed soap/shower gel (I use Simple Body Wash) and to apply aqueous cream morning and night (more often if the area gets pink). So far I have had no problems with my skin. You will be told to carry on with the cream for at least two weeks after treatment finishes, as the after effects to your skin will continue for this long.
The worst thing is the travelling to and from the main hospital (I have to travel by rail to London) every day.
As regards not being informed of what treatment to expect, until your “team” have all the facts, they may not know exactly what your treatment will be. In my case I was told after the results of the biopsy of an enlarged lymph node in my armpit, what treatment I would be having…mastectomy, axillary lymph node clearance, chemotherapy, radiotherapy, Herceptin and Arimidex. It was overwhelming at the time, and I was very upset. But, here I am now, half way through the radio, mastectomy, and axillary clearance done, and chemo completed, and I’ve survived, and know that my hospital “team” is doing it’s very best to try and ensure that my cancer is obliterated.
Good luck with the radiotherapy and your studies…GO GIRL!!!
xxx
Thx Justme …thats the first time anyone has described the process of radiotherapy in practical terms…I appreciate the time you took to tell me…Thialoz x and all the best in your fight against this awful disease which only happens to other ppl …not us…xx
Hiya Thialoz
I have just had my 12th rads with 13 to go and it is not too bad. The journey to and fro the hospital is the worse bit of it. You can ask for appointments to suit you and you will get tired but just make sure you rest when you can, let those you work with know of your situation and accept any help that is offered and you should be able to do your studies
Best wishes
Hilary
Hi Thialoz,
Just reading your post. I’m glad everyone has been so helpful in their posts to you. I found rads to be absolutely fine. My skin didn’t burn or break down and the staff were so lovely and friendly anyway too.
Will you have to travel far for your treatment? Hopefully it won’t be far if you do and so you might still be able to handle your post-grad. I worked a few hours during chemo and rads teaching/facilitating art classes and I was able to handle it most of the time.
Best of luck with everything and keep in touch,
All the best,
Teacup xx
Hi Thialoz
It just me again with a quick comment. I agree with the other ladies radiotherapy is just a hassle because its every day. And you know, I quite missed the banter with the excellent nurses and regular faces I saw.
You’ll be fine
Take care
Carol
Hi Thialoz
I have just remembered something that might help Breastcancer Care have a resource pack that is available. I didn’t know about it at the start of my treatment and wished I had, it has technical terms in it and places to write questions in, and some suggestion questions. I was talking to one of the Nurses on the helpline and she arranged for it to be sent out to me. Everyone reacts differently to treatments, some people will have managed better than me.
On a practical note, I didn’t wear my bra until about a month after my rads had finished.
take care
Sue
I am just about to start radiotherapy and have been informed that abit of lung tissue will be damaged and maybe a bit of my heart (depending on its size…haven’t been measured yet). Does any one who has been through this actually feel these effects…like feeling more breathless, not able to run as far, more tired etc. In particular, as I’m a singer, do any singers out there notice that their breath capacity/ energy levels are lower? Because of these ‘side effects’, I’m even considering having a mastectomy to avoid the rads. Any opinions/ experiences gratefully received. Thanks. Allegra
Hi Allegra
I have only had 3 rads so far and don’t feel breathless or anything yet. But it’s early days so probably not much help to you.
I have had a mastectomy too (and chemo), so that might not be a way of avoiding rads.
When do you start?
Cecelia. x
Allegra - I was also warned about lung damage, and that I would develop a slight cough (only temporarily). Well I never did, or have any symptom that suggested lung damage. I run regularly, and did not find any problems with that either. I’m still not back to pre BC fitness, but I’m getting there slowly. The damage to my fitness was done by chemo and I have been slowly improving ever since it finished. Rads did not set me back
Cecilia - I see no reason why it shouldn’t. I think as long as it is v pure that is all that matters.
Hi everyone…I have posted so many messages on different sites that I am getting lost…there is just SO much to find out and think about isn’t there? I’m finding worrying about everything completely exhausting. Anyway, I haven’t started rads yet and I’m not sure if this is what I want to do… I don’t think side-effects too soon after the rads exposure are too bad. It’s further down the line, like 5 or 10 years. Some people get crusting and their areola seems to go white, boob shrinks etc…I am discovering plenty of horror stories which makes me think I should just have my breast off now. Having said this, this is no easy choice either…I realise that my body image has been far more important to me personally than I’ve ever readily admitted ( I was anoerexic as a teenager…so there’s quite a ‘perfectionist’ streak in me, which is proving not to be a good thing). On the other hand, a friend who’d been through the rads experience 15yrs ago was encouraging me to do this. She has had no problems so far. I need to hear more positive stories from older women. Ropad runner is right to be keeping as fit as she can and maybe that’s the answer. If the body is kept healthy enough and fit, perhaps it can compensate for minor damages to even its vital organs.