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March rads ??

74 REPLIES 74
Jools D
Member

Re: March rads ??

Hi, I am also on day 3 of 15. I've had one or two stabbing pains too. I had my first post-treatment meeting with the senior radiographer today, to catch up with me on how I'm getting on so far. She said these pains are quite normal, all part of the radiation helping to knit together the nerves cut during surgery. I massage it a bit and they go pretty quickly so far. I'm also moisturising twice a day, my hospital gave me a tube of Epimax cream.

lizzieb
Member

Re: March rads ??

Well done Catherine, you're nearly done 🙂 I finished 1.5 weeks ago and am still getting some weird shooting pains and discomfort deep in my breast where it was "cooked" but everything is now so much more comfortable than it was. I have been surprised how rapidly my body has recovered after rads. My boob is now rocking the suntanned look (much better than bright red), which would be fine if the rest of my body matched... perhaps I need to book a holiday!

 

Even the cording in my arm has calmed down an awful lot. But will still go ahead with a physio assessment on that one. It's my right arm and I'm right handed.

 

Lizzie x

ali b b
Member

Re: March rads ??

Hi Catherine.

All sounds very familiar.I finished my course of 15 zappings nearly 2 weeks ago- and still get an achy boob, odd shooting pains, and a sensitive nipple still. It was probably at it worst about a week after treatment finished, and is definately getting better though- but finding something comfortable to wear on it is still dificult.

 Hang in there! only four more to go out of twenty means your really on the home straight. ali.

CatherineJ
Member

Re: March rads ??

Hi all, rad no 16 today (the first of my 5 boosters this week) - bit red but applying E45 twice a day (was using Bio Oil which was great for first 10 but then didnt seem to be enough).  Nipple very sore but there's nothing to see.  Think will burn bra on Friday!  Anyone else expereincing pain behind the boob though? I told my rad team but they just said it was normal. Is it?

Jill1998
Community Champion

Re: March rads ??

Catherine have you tried posting your questions re triple negative in the "triple negative section"?
CatherineJ
Member

Re: March rads ??

Hi Lizze, please can I ask what size your tumour was, and were your triple negative? Thanks. X

ali b b
Member

Re: March rads ??

I went through 15 sessions without a nuclear boob or any real skin problems- so you may be lucky too. My only prob was an incredibly sore/ sensitive nipple which kicked in after about a week. I finished three days ago- and now have a bruised feeling, with odd sharp pains though. Anybody else getting pains post treatment?
lizzieb
Member

Re: March rads ??

Hi D, keep moisturising. You may be lucky and it may not strike. Many people sail through. For me nuclear boob struck at around day 8 or 9 with a hot, itchy pink rash. The worst affected was my nipple, which got v sore for a while and needed calming down with creams and gel pads. (I know though, I should be grateful to still have a nipple...)

 

I have my last session of 20 rads today. As the last 5 are a boost to just the area where the tumour was (side of my breast), the rest of my boob is already feeling the relief. It has calmed down from bright red to a dark dark tan, looks as though I sent it on a Caribbean holiday without the rest of my body... 

 

 

Deeejayd
Member

Re: March rads ??

Hi All, day 3 of 15.  Moisturing like mad.  Wondering when the 'nuclear boob' will strike??

ali b b
Member

Re: March rads ??

Feels good to have finished, but had quite got used to the routine. It's a weird limbo state, between definitely having cancer, and being 'cured', especially as the radio is still doing its weird business to my boob. Don't feel cured, but don't feel like I can claim to have cancer either. Also, it's all a bit open ended- there is no specific time, or structure to when things morph back to normal again. It's early days I suppose. And probably that tamoxifen messing with my emotions.
CatherineJ
Member

Re: March rads ??

Hi Ali, congratulations on finishing. You must be glad not to have to do that journey every day and Car Park D! How do you feel in yourself? Take good care. Best wishes.
CatherineJ
Member

Re: March rads ??

Thanks for your reply Lizzie and I will try your tips. No 8 was today and all ok apart from redness. Wish I could find another Triple Neg lady who also has not had chemo. Feels very lonely!
lizzieb
Member

Re: March rads ??

Congrats on finishing Ali! 🙂 So cool, I love the idea of the bell to ring on the way out. I am now 18 down, just 2 to go... I met a very anxious lady going for her first session today, it was nice to be able to reassure her.

Jill1998
Community Champion

Re: March rads ??

There is a charity donating the end of treatment bells to hospitals around the Uk .
angelcake
Member

Re: March rads ??

The bell is a great touch. That would have been nice at The Marsden Surrey, just to acknowledge the end of a treatment. When I finished it just ended on a whimper; I was grateful to be ending the treatment but it was an odd scenario especially when I had three new staff giving me my last treatment!!!  Minor, I suppose but any sort of acknowledgement for having endured the ordeal of radiotherapy, and in my case, when I really didn't want to have it, just helps, close one door. 

 

A month after, I am still having shooting pains and some discomfort but the skin is recovering. It's a slow process but I am taking one day at a time.

 

Best wishes everyone.

 

AC

ali b b
Member

Re: March rads ??

Hi Catherine. I'm at The Christie too- or was until my last treatemtn today !!!  I gave that bell a real clattering on the way out( for those of you not in manchester, they have a bell on the wall  on the way out of the radiotherapy suites, which you ring three times when you are on your way out after your last treatment, then a ripple of applause goes through the department). I got a lump in my throat everytime i heard it go- and was close to tears myself today- but it did feel good. I dont know about flamazine, but they are happy to prescribe hydrocortisone for the swollen areas as long as the skin isnt broken- i think it helps. 

lizzieb
Member

Re: March rads ??

Hi Catherine, the Flamazine is prescription only, used to treat burns. Worth asking for but only if you get really sore and need it. Hopefully you won't... the gel pads are also something the hospital hands out. The only cream I have bought has been aloe vera gel and calendula cream, both are great. I've been "borrowing" my son's eczema emollient in large quantities and also have bio oil but hadn't used it since starting rads as it is slightly perfumed... however, I'd say if you are OK with it so far then stick with it, it's great stuff for scars etc. I plan to switch back to it again soon too.

I'm at RUH in Bath. They have been great, it's a nice friendly team there. But I look forward to not seeing them again after this week.
CatherineJ
Member

Re: March rads ??

Lizzie, I'm at Christie's Manchester for my treatment. Where do you go? Good luck. X
CatherineJ
Member

Re: March rads ??

Hi Lizzie, thanks for your reply and tips. No 7 today. Been slapping bio oil on twice a day and ok so far. I don't like the feel of my surgery scar but I'm teaching myself to love it, lol! I'm triple negative btw, no chemo. You?
CatherineJ
Member

Re: March rads ??

Hi ladies. Just had rad No 7. Ok so far but where do I get the Flamazine from that you all say is good. Also feel really tired today but maybe that's cos I'm also struggling to control my imagination today! I'm triple neg, no lymph nodes, and WLE clear after 2 surgeries so know I should be grateful too.
lizzieb
Member

Re: March rads ??

Thanks for all the help Jill and everyone, it's reassuring to know that things should start looking and feeling better soon (the Flamazine and gel pads are already making a difference, also I'm finding calendula cream very soothing). The whole radiotherapy team was peering at my boob this morning to see if they could come up with more recommendations of things to try (bless them they are so helpful!), but I'm feeling very positive now that I only have 3 sessions to go, it has gone really quickly.

 

I'm only flying a couple of hours to Europe so guess I should be fine. I will try to remember to pack my flight socks too. It'll be so nice to escape somewhere...

 

 

Jill1998
Community Champion

Re: March rads ??

Mine carried on getting worse for about a week,then improved quite quickly after that.Yes,they advise you not to take Tamoxifen for 2 weeks before long haul flight I think .I intend to get pressure socks,take low dose aspirin and move around a lot when I fly to the Canaries,think they said over 6 hours was considered long haul.You not supposed to take it for a period of time before any surgery also.
ali b b
Member

Re: March rads ??

for those of you that are slightly ahead of me , and already finished . . . did your skin carry on getting worse after treatment finished- or was it a gradual improvement from then on in?  My boob is  slightly discoloured( shall we call it 'radiotherapy mauve', but its just a really sore nipple. the steroid is helping I think though.  

 

wrt to someone flying. The radiotherapy isnt an issue,but I was told the tamoxifen is risk on long-haul flights. I flew a few weeks after surgery- and was advised by my surgeon not to start taking it til after my holiday- then to consider stopping it a week or so before any future long- haul flights. I dont know if thats the general reccommendation- but its worth asking

because of the increase of dvt with the tamoxifen.

Jill1998
Community Champion

Re: March rads ??

Mine was very bad too,like very severe sunburn.
lizzieb
Member

Re: March rads ??

Great, thanks Jill. Fingers crossed, 2 weeks would be great. No, I'm not going anywhere hot just a city break
Jill1998
Community Champion

Re: March rads ??

Mine took about 2 weeks to calm down.I don't think there are any issues re flying ,just issues re protecting treated skin from sun if you are going somewhere hot.
lizzieb
Member

Re: March rads ??

Congrats Ange on finishing and excellent news Ali that you just have one more session. I'm on my boost rads now, just 4 more to go so I will finish on Friday. A glass of something is planned. (LOL at you Jill burning your bra... I might consider that too! I'm sure the kids would enjoy it)

 

I can totally relate to feeling sore. The whole area for me is dark red and I have an angry-looking rash, my nipple has cracked slightly. I am slapping cream on constantly and using Flamazine and gel pads to ease the symptoms. It's not a pretty sight... And my arm is still painful when I straighten or raise it.

 

I know it will take a while to get back to normal, but I am trying to stay positive and really focus on the "normal" again. I have a new job starting on 1st May and hoping to be well enough to throw myself fully into that. I have friends that I want to meet up with. And I am looking forward to my life not being all about hospitals and appointments for a change...

 

No one can really understand this journey unless they have been through it. But I think we should raise a glass as we reach the end of treatment, perhaps another once we are finally starting to feel fully normal again. 

 

Lizzie

 

PS - Can anyone tell me how long it took them for their nuclear boobs to return to normal after rads (i.e. not sore and normal-ish colour?) Also, does anyone know whether there are any restrictions on flying? I may need to travel in 3 weeks' time. Thanks.

Jill1998
Community Champion

Re: March rads ??

Hi Ali ,it's really common to feel like that at the end of treatment ,the safety net has been taken away.One of the ladies I was going through radiotherapy with said "so we are just supposed to go away and try not to get it again now then?",I think that sums it up.Treatment ends but the impact of what you have been through takes some time to recover from .Hard for others who haven't been through it to u set stand that.You should still celebrate finishing though!!!I burnt my bra (I had to wear a customised one during rads due to floppy nature of boobs !!) in the BBQ whilst drinking a bottle of bubbly !!
ali b b
Member

Re: March rads ??

I have got just one session left on tuesday. It feels like a big deal that the treatment will be finished, and everyone around me is all ready to celebrate, but since the effects/ side effects will carry on getting worse for the next couple of weeks, it feels like  a minor hurdle, rather than actually finishing.   I cant seem to get as excited about it as my family seem to be. Its faintly reassuring to see the staff everyday, and them asking you how your doing, but after tuesday, I feel like im on my own again. Did anyone else feel like that at the end of the sessions?

MadAnge
Member

Re: March rads ??

Hope you are all ok. I am glad to have finished but am very sore across my chest 😞 never mind they said 2 weeks then it's all good. Happy days. The light is getting brighter at the end of the tunnel 🙂 xx
lizzieb
Member

Re: March rads ??

Love the tabard Ali, with the smiley faces 🙂 I have finished my 15 standard rads now so boost starts tomorrow. My rads team are great, they ask how I'm feeling and always try to offer help. So now I have Flamazine cream as well as gel pads and hydrocortisone cream. So although my nuclear boob looks red, spotty and angry, it is actually not feeling too bad... Looking forward to the long weekend.
ali b b
Member

Re: March rads ??

Hi Lizzy, I agree about the tiredness( famous last words!). I seem to be able to laze around a bit more than usual- but just coz I feel sore, and still seem to have the energy for most things I want to do.( if only my clothing didnt hurt so much). I had remembered the cabbage leaf suggestion from the breast-feeding days, but now found a bead-filled cool-pack equivalent designed for the purpose on the internet. I am sooo looking forward to the post man arriving with it today. I'm on  treatment 12 of 15 today- I dont know why they dont seem to be doing the  extra boost doses where I am ( the Christie, Manchester), but I think my lump was small, and they seemed pretty sure they had most of it after surgery. Coffee and cake with my friend who is taking me. I dont need escorting, but have found that I really appreciate the company, it takes your mind off things a bit. Just need to find a cafe that didnt mind me sitting topless, and life would be great. 

So, to anyone else  with a radiotherapy appointment today, I hope your waiting times are short,your arm rests are comfortable, and your velcro doesnt get tangled. I'm marking the days down on my hyacinth blue tabbard ( its only in washable fabric pencil). 

 IMG_0300.JPG

lizzieb
Member

Re: March rads ??

Hi Ali, welcome, it all sounds really familiar to me. I have completed 14 of 20 rads now and over the weekend my boob went from completely fine to nuclear - red, an angry heat rash and swelling that affected the nerve endings in my arm. It has also coincided with some huge hot flushes from the tamoxifen (I am 2 months into taking that too) and brain fuzziness. 

 

I did feel very sorry for myself yesterday, but the radiotherapy girls have been so lovely. They gave me some hydrocortisone cream which has soothed things and also some cool gel dressings that I can keep in the fridge and put in my bra if I feel like I need to. They also said cool savoy cabbage leaves in your bra help, so might be worth a try. (I know they are good for breastfeeding mums and mastitis). My aloe vera gel also feels v soothing now especially straight from the fridge.

 

The only side effect I don't seem to have is tiredness.... So I took myself off shopping this morning for a bit of a pick-me-up. (Confusing radiotherapy and retail therapy, ooops!) Feeling a lot better for it too.

ali b b
Member

Re: March rads ??

Feel like I am joining this thread a bit late in March... but I am now 11 days into 15 treatments.( had LWE in January).

I've been on tamoxifen for about 5 weeks. So, with short temper(as if I'm pre-menstrual), close to tears constantly( like when I was pregnant),and a few hot flushes ( oh joy!)., this tamoxifen is yet to begin feeling like my friend, even though I know its keeping me safer in the long term.

My radiotherapy isnt too bad, apart from my skin becoming so sensitve that even loose fitting clothing hurts. Dont think I am feeling too tired yet( just a bit sorry for myself coz things feel sore). does that all sound familiar? ali 

lizzieb
Member

Re: March rads ??

Hi Clare, hope you are doing OK after your op. As Jill and others have said, it is so easy and tempting to jump ahead, but you really do need to take this journey one day at a time. You can't wish away your recovery (as I tried to!), it will take as long as it takes. Don't worry about results, radiotherapy etc yet, you need to focus on recovering from your surgery. One day at a time. 

 

I find that I feel positive some days and other days the whole emotional and physical journey gets to me. That is normal and to be expected. But we are stronger than we think.

 

Take care, hope everyone is feeling well. I'm looking forward to a long weekend for Easter, gives me a break from the hamster wheel, yayy xx

Clarey100
Member

Re: March rads ??

Thankyou, racing ahead of myself agsin! Need to get results appmnt through first rather than 3 week wait! One step at a time I guess xx
Sartas
Member

Re: March rads ??

Hi how are you feeling today? I have been taking tamoxifen for just over a month now have has a couple of mild flushes that's all I don't think that it's a given that you will put weight on, it's good to try and stay as active as you can and just eat sensibly! Everyone is different though, just try not to worry too much and take each stage as it comes xx
Jill1998
Community Champion

Re: March rads ??

I guess you could ring the ward and ask?They should have given you some guidance.My op sounds similar to yours and I took the dressings off after 2 days ,(was a bit yucky ) but over the actual wounds were steri strips which came off after a week.
Clarey100
Member

Re: March rads ??

None at all. Not sure what to do with it. Have got some more waterproof dressing and will take it off and have a look! 😁
Jill1998
Community Champion

Re: March rads ??

They put the steri strips on in hospital,told me to take the other dressings off after 2 days.What advice did they give you ?
Clarey100
Member

Re: March rads ??

They did give me waterproof but the top one was coming off and stinking around arm pit area. The ones they gave me on the ward are not water proof. Can I get the strips you used at any chemist?
Jill1998
Community Champion

Re: March rads ??

Did they not put on waterproof dressings?I had ones you could shower in,took them off after 2 days and then had steri strips for a week.I didn't see my surgeon at all after the surgery so I don't think you missed much by discharging yourself without seeing registrar .
Clarey100
Member

Re: March rads ??

Thank you Jill, I was in a sorry state in the night and desperately need to sleep it off. Wish I could get back into normal patterns. You are right I hadn't anticipated the effect of the op. Thanks for the wise words. In 10 years time hopefully the days of waiting 2/3 weeks for results will have gone!
Jill1998
Community Champion

Re: March rads ??

Well done Ange,end of the marathon 🍾🍾🍾🍾🍾🍾🍾🍾🍾🍾
Jill1998
Community Champion

Re: March rads ??

Hi Clarey,you are bound to feel rubbish if you only had your op on Wednesday,the effects of general anaesthetic and not sleep combined will make you feel anxious and low.The middle of the night is the worst time your mind can't help but wander to dark places.Try and put what happens next to the back of your mind for a couple of weeks and recover from your op.Good chance you are now cancer free and that any further treatment is a preventative measure .Most women will now take Tamoxifen for 10 years.Hot flushes are pretty common side effect and weight gain can be a feature but to be honest I don't think I have gained any weight after 8 months on it.Like Ange said try and deal with this in chunks ,don't think too far ahead or it become overwhelming .Jill.
Clarey100
Member

Re: March rads ??

Hi again, more questions sorry. Is the side effect of Tamoxifen hot flushes? How long do you take it for? I have also read poss Wright gain? Lost 3 stones before my diagnosis, still too big and really can't afford to gain anymore 😁
Clarey100
Member

Re: March rads ??

Thank you for this, my diagnosis seems similar except mine is 2.5 cms. They suggested 15 radiotherapy blasts may be all I need but obviously can't confirm until results. Petrified of chemo and how it will make me look, but don't want to be given the choice either! So low after op, hence on this at 3.45 am.
Clarey100
Member

Re: March rads ??

Hi and thanks for your reply. I don't know how to skip to the thread I last posted yet, seems to take me an age to get back to find it?
Anyway the op was a bit traumatic tbh, waiting until 3.30 pm to get to theatre, then couldn't get a vein. Then it they wouldn't discharge me as heart rate was high so spent night in with only 2 hrs sleep. Then found out my consultant had been away(after surgery had been done) and her registra had done op. A man of very few words shall be say with not an ounce of bedside manor! Discharged myself on Thurs lunchtime as no idea when he was going to come and see me after op!
Feeling very emotional since op and sleep is all over place, hideous dreams. The only saving grace has been the breast care nurses who managed to calm me down yesterday on the phone. Pain not too bad after op though, uncomfortable and stinking armpit is all! Trying to find dressings that remain waterproof- don't want to look underneath really yet!! Results 5th April , just praying its radio only.
lizzieb
Member

Re: March rads ??

Ange, are you done? If I remember correctly, I think today is your last one. Hope you are feeling OK and that all going well. I'm suddenly feeling in need of the break this weekend. x

lizzieb
Member

Re: March rads ??

Hi Catherine, good to have someone else on this board, it has been pretty quiet... (anyone else out there having rads in March?) I'm halfway through now, 10 down and 10 to go. Everyone is different, but I have found it to be OK so far and in fact was expecting to feel a lot worse by now. The hospital staff have been great and rads really don't take very long - driving there and back and finding a parking spot are much more stressful than being zapped.

 

My skin has developed a slight heat rash as of last night but it is not bothering me much (yet!) and the first time I've noticed much reaction. I was headachey and tired after the first 2 sessions but this wore off as I got used to it and I have been drinking a lot of water, which the nurses told me to do as it helps. 

 

Everyone is different but things that are helping me are to stay positive, drink lots of water, slap on lots of moisturiser (I'm using my son's eczema emollient twice a day and aloe vera gel straight after rads), take Ibuprofen or paracetamol if you need it (my arm has been painful and I take ibuprofen before rads so it is not so bad getting pulled into position) and line up some treats as you count down. It is also nice to see the same faces at the hospital each day, this has made it quite friendly.

 

I have been eating more healthily, but that has been my kneejerk reaction anyway to the cancer and the Tamoxifen tablets etc. Hot flushes are building up and bothering me this week... but I'm feeling benefits from my healthy diet and hope to keep it up. 

 

Hope this is helpful, good luck tomorrow and keep us posted on how you get on xx