Now that the biopsies are done, the diagnosis, the lumpectomy and histology is over now for the radiotherapy! Isnt it funny how inbetween life takes on normality and worry and pain subside for a while. So much so for me that to start again after a few weeks of no appointments and “dreads” that yet another stage is to be embarked upon. After that little bit of ranting, can anyone let me know their experiences of radiotherapy? Along this journey how would you rate this experience with the rest. Am not sure what to expect but I cant help feeling that although I use my aqueros cream and eat plenty of veg and rest when can and exercise, what else is there to do but ride with it. Just another milestone eh?
I know what you mean about getting a rest in between…
I thought radiotherapy would be a doddle after all the
surgery stress (I went into anaphylactic shock in the
recovery room, allergic reaction to the SNB blue dye).
Now that it has actually started, I’m realising that it
*isn’t* a doddle, more stress and worry, and that actually
at least the surgery was sort of ONE DAY but this carries
on and on…
Anna x
(Rads 3 of 15 coming up on Monday)
Hi springblossom,
Hope your keeping well, rant away whenever you need, there’s always someone listening and ready to help, just remember we are all different and cope in different ways, I am on my last 5 rads next week, which are boosts to the scar area, I have found the rads ok, it is over really quickly, it takes them longer to make sure you are in the correct position! Be prepared for them talking over you, and you do feel like a piece of meat, as they shove you around the bed (so that you are straight ), I personally can’t wait for it all to be over so that I can try to gain some normality - whatever that may be!
I have found the hardest part, is waiting around, and there are some in the waiting area, who think all this is like some kind of competition , like oooh I’ve had 39 sessions, I must be much worse, so I try to ignore it all take some music on my ipod, and something to read!
As I have said before in previous posts, my skin is ok, the swollen feeling is the worst for me, but not everyone has the same se’s, so carry on using the aqueous, and eating well, good luck for the 5th (is that right?), one more thing to tick off
Take care x
Hi Anna,
Yeah I am with you on that one, I have found it stressful having to phsyche yourself up every day to go, even though all the rads staff are great, I can’t wait to see the back of them!
I’ll be thinking of you, hoping the rest of your treatment passes swiftly! X
Hi Anna,
I didn’t know about the tamoxifen / rads and am due to start on Monday. I phoned radiology dept (half past 4 on Friday when I read your post!) and they got a rdaiologist to phone me back and she has organised me to see an Onc (not mine as he doesn’t work on Mondays) before I start so I can make an informed choice. BCN phoned me (so they must talk to each other = good sign!) and said I can stop Tamoxifen if want for a while as it is only a 1% gain for me anyway. So thanks for that.
Wendy x
Bit worrying finding out that Tamoxifen may interfere with rads but too late now only three more to go. Worst thing about rads for me is the travelling min 5 hrs a day more if lots to pick up. Feel very tired don’t know whether it is the rads or the travelling. Just started to get rather sore on my nipple and blisters on chest area using lots of aqueous cream and have left off my bra. Roll on next Weds!!
OMG smiley, 5 hrs a day, no wonder your knackered!, its hard to know if its treatment or travelling that tires you out, I too am concerned about tamoxifen interfering with rads, but like yourself am on the last week, and they’re boosters, just something else to worry about!
Take care x
Hi Gwendolyne
In answer to your question about how much I moisturise with aqueoeus…answer is as much as poss…I am using the tube of aqueous that I was given by the Radiotherapy staff and only just getting to the end of it now after 14 of 21 rads…will be getting more from them next week.
As we’ve all realised protocols and advice/info seems to differ between patients and NHS Trusts. But as for Tamoxifen not working well with rads?? If there is “some uncertainty about using Tamoxifen at the same time as rads” yet “nothing definitively against doing them at the same time” why would there be a preference to start after rads?
As I commented in an earlier post I think we all have to ask the questions but apply logic as to the answers/info given rather than worrying/stressing. I am in contact with ladies in the USA as well as UK and have never heard the faintest chinese whisper of Rads and Tamox. not being ideal…after much contemplation my view is that as Tamox binds to the cancer cells by mimicking oeatrogen this in itself is the mechanism by which Tamoxifen stops the cancer growing/kills the cells. The radiotehrapy is killing the cells anyway…I mean it kills the healthy ones as well as any cancerous ones, that’s why we get the fatigue. There are alo ladies who take Tamoxifen even before surgery with measurable results showing tumour shrinkage, so not sure this would be stopped to give then rads.
This sounds like another scaremongering, unsubstantiated statement that does more harm to the mental health of bc sufferes than good.
I also personally think that it is inappropriate for any BC nurse to say “one must assume that there are always some cells after a lumpectomy, even with clear margins”. Some women get given the choice as to whether to have rads or not and chose not to due to the side effects of rads…so what message is this giving them?
Bettina
p.s. Have attached a link re. the Tamox. during rads debate. As the final sentence says…“There is no right answer at this time”.
breastcancer.org/treatment/radiation/ask_expert/question_24.jsp
Thanks everyone for your comments re rads and Tamoxofen and rads together or not. I am feeling strangely positive and am going, as mentioned before, with whatever the onc recommends for me. The surgeon said 5 weeks but the onc may say 3. Whatever just another stage. Yes the lumpectomy was just a day but took nearly 4 weeks to get back to normal. i.e. Fatigue, pain and discomfort. This bc takes over, if you let it. Am thinking Spring/summer and hoping this next stage will pass just as the other stages have. You are all so helpful and hopeful I hope my posts help you lovely lot too?
Ann xx
Hi Springblossom, great to hear you in such a positive frame of mind. I agree about “being strangely positive”…to think the dark thoughts I had 2 months ago and now I walk in and out of hospital evryday past the walking wounded, feeling “well”,it’s like being an elastic band that get stretched… but after surgery, rads, having been told we do not need chemo and then the Tamox for 5 yrs(approx) we can do no more than to be as “normal” as we posiibly can be…making the most of the quality of life we have despite this traumatic experience. It has made me appreciate my husband soooo much more more in ways I definitley took for granted before.
I agree that you should go with what your ONC suggests for you. I did the same which is why I started the Tamoxifen when told to…I’m not saying that anyone in a white coat always knows best and that I would blindly do whetver they told me to but… my own opinion would be that I wanted that systemic intervention asap…and in the weeks whilst awwaiting final pathology report did so much research that I knew what was likely to be suggested (and which was exactly the treatemnt plan I was given and I found no mention of “concern” over rads with Tamox.) I trust my team explicitly and know they would not have told me to take Tamox. asap if there was any danger it would compromise the effectiveness of the rads.
Have a great Christmas and here’s to a better year- 2011!
Bx
Hi Sebflyte
Thanks for your welcoming comments. I must say that this experience has also changed me and the way I see the world and the people in it. Reading some of these posts makes me realise how lucky I am to have gone through all that (and more to come) but with a good histology report - hope I am not jumping the gun? I wish I had a nice husband like you say you are appreciating right now. Mine died some 10 years ago, quite young and I also am bringing my grandaughter up - so am a single grandmother of one. Life throws some stuff at us but we find the strength to still appreciate life.
Hoping you have a good xmas and a very happy and much healthier new year. Ann xx
Hello ladies,
Bettina, thank you for the link to the breastcancer.org (USA) website,
which is very clear about the “Tamox/rads - simultaneously or not.”
It spells out both points of view and says that neither view has
been conclusively proven to be better.
I’m very sorry if my repeating what my onc said has made anyone
anxious. (Wendy, so glad that you were able to reach someone on
Friday afternoon!) It sounds like we are being told different things
by different oncs but that it’s OK because (in Bettina’s link) there is
no definitive “better way.”
Just for me, I am happy to be doing what my onc recommended (rads/Tamox
consecutively) so that I can see --if any–separate side effects.
Hope everyone is keeping warm out there!
love,
Anna
Wendy - good luck with the start of your rads today
Anna - I’m sure you didn’t upset anyone , you were just sharing your experience, which is something we are all doing, this site is designed to support others, and we all just want to help and be supported , we can only give others advice, from what we have been told or experienced, my onc gave me info on all MY treatment told me not to ‘google’ as American sites come up, and the way they treat bc is different to how it is treated here.
Hope everyone is finding the ‘next step’ bearable, whatever that may be.
Thinking of you all, x
Hi Everyone,
On my 3rd lot of rads. They seem to make me really tired and cold and I’ve only had 3 so must be pychological! The good news is that my son and his girlfriend are spoiling me!
Take care everyone
Wendy x
Hey Wendy,
Good to hear your being spoilt, make the most of it. Not surprising your feeling cold in this weather -14 and counting - and we have to take our tops off! And its always freezing were I’m having rads.
3 down, you’ll soon be at the other end, I’ve only 2 more to go and can’t wait.
Look after yourself - plenty of water (or cola! - depending on which thread you read), and lots of the lovely!! Aqueous cream x
Finished my rads today feeling very tired but relieved to have finished it feels like I have been going for months rather than weeks looking forward to ‘recovering’ at my sons where I am off to tomorrow. Merry Christmas everyone.
Merry Christmas everybody.
PS They did give me mincepies!
Merry Christmas to you all!
Wendy - glad you got mince pies, all the best for the rest of your rads, mine are all finished now, thank goodness - just waiting for the ‘next step’, onc appt. In 6 weeks .
Take care all, cheers! X
Hi everybody
Hope you don’t mind me joining this thread - I’m about to start rads in January and trying to find out more about it.
I was dx in May, had WLE then more surgery to improve margins, just finished chemo. Starting rads soon plus tamoxifen, then herceptin.
I do google everything and read American sites, then get confused. Much better to talk to women are going through the same thing here in the UK.
So, what advice would you give someone about to start?
Thanks
Lilac
Me too Lilac. Have initial appt for rads day of my last chemo 6th Jan!
I’ve been told tiredness is a problem as well as sunburn (possibly).
Anything we can do to help ourselves?
Jo XX