Hello Pat, lovely to chat to you. Gosh its been a surreal time, from going to the gp initially with a weird feeling to just now when I am on second last radiotherapy. (BOOSTERS THIS WEEK). Its been a very hard time although I am very fortunate with my diagnosis etc. The ms relapse really threw me totally and I am still not fully right as in energy and mobilty but am getting there. I thank each and everyone who has helped me through this chapter in my life. Love to all. xxxxx
Hello Ruth and Mary. So nice to see other MSers on here! (I just edited this as of course it's not nice for anyone to have BC let alone BC and MS! But what I mean is nice to network with others in same boat).
I think for me it was fatigue that got to me during rads, but I'm ppms so unfortunately no let up!
YES RUTH my breast still does hurt on a daily basis. Electric shock type pains and some dull low-grade pain. It is still numb around the actual cuts & I still have a blue patch from the dye!!! I had surgery May 20th. I am also dreading mammogram as it will hurt! I go to breast clinic on 24th of this month so think I might have it then.
I think, having ms, we have advantages and disadvantages from having BC. The advantage is that we have already been through having one diagnosis and perhaps take the cancer diagnosis a bit better (or is that because I'm older...I'm 63?). The disadvantages being that ms reacts to anything so I think the treatments make our ms worse...as with you MARY having a relapse.
RUTH I think you should go to your GP about those black holes! Even though not weeping or anything I think a GP should look at them just to be on the safe side.
Hope you are both doing well today and nice to 'chat' to you both.
Hello Ruth, I am on 16 of 19 radiotherapy and so far so good. I, too have had m.s for 7 years and during this cancer journey had my first ever relapse whcih left me unable to walk, or use right side of body. It really took the wind from my sail and I truly never thought I would get back to norm to face the treatment plan. After steroids for a week things have slowly got back to normal and I am feeling kinda like me again. I truly hope the radiotherapy and further appointments etc can put an end to this dark summer. I have been very fortunate in my prognosis and hope all you brave folk are doing as good as you can. xxx Mary
Hello dear, my name is Ruth I have MS and also I have had my radiation in July. I had 15 sessions and at the end of it all I had the most hot skin with broken skin and new moles that appeared and have now broken down,
the skin of the new moles has rubbed off and I am left with holes sort of black holes. My next oncology appointment is on the 13 th of October in doncasterso I will be asking about this then since there's no soreness or weeping or smell. So also my next mama gram is in November and I am not looking forward to subjecting my newly recovering boob to the squashing .after 8 weeks on letrozole I couldn't take any more of the weeping, sweating, and violent tempers . So I refused to take any more. After 4 days off them I was recovered. Then I was put into exemestane and I have been so much better. Also I have almost no sweats,
but I am more unbalanced.
Do you still get pain at your operation site I do every day.. Thank you for your time.xxx best wishes for your recovery.
I do understand about your mood I'm presuming it's to do with the hormones. I find I'm also really sensitive to things people say or even don't say! It must be difficult when you don't get out much. Hope the flaxseed works it's worth giving anything a try & it can't do you any harm. I'm always here if you're having a bad day sometimes just talking about it helps. Sending big hugs your way x
Hi Anita, yes always seem to be hungry too! Also, I'm not exactly depressed but I don't feel quite right. My mood I suppose feels a bit flat. Do you know what I mean? I don't do much on daily basis because of MS fatigue but this feels different...the effort to do things doesn't just feel physical but feels even worse somehow. Hard to explain but not pleasant.
Agree...will give the anti psychotic drugs a miss! The night sweats are awful. I'm trying flax seeds for them (also known as linseeds). Can buy them online and grind them up in coffee grinder. I have a tablespoon every morning in muesli and luckily are tasteless. Apparently they're good for hot flushes so worth a try! Good for constipation too which I also have! Life eh?!
Good to hear from you Anita,
Hi Pat, so lovely to catch up with you. The side of my breast is still numb & as I had op on March 24th I'm presuming the feeling won't come back now as I was told it might not. Aren't the night sweats awful - at my follow up the oncologist's registrar said the only thing he'd been told that worked was anti psychotic drugs - but I think I'll give them a miss! Haven't had a decent nights sleep in months but apart from that I'm ok with Anastrozole- oh apart from putting on weight as I always feel hungry but that might be just me! Glad you sound like you're doing ok. X
Hi ladies, It's been over a month since anyone posted...and I hope that's because you all are ok and getting on with life???
I'm doing well. I'm still getting some sharp shooting pains through my breast and hope (HOPE!) that it's still recovering from radiotherapy and surgery. The numbness of the surgery site is slowly going although it's still numb directily where the scars are. I see the consultant & BC nurse on 24th Oct.
I've had a few problems with side effects of Anastrozole...hot flushes at night, some aches and pains and problems getting to sleep...but actually so far it's not as bad as expected. Fingers crossed it won't get worse.
Thinking of you all and hoping eveyone's recovering nicely.
All the best,
Well done Lesley! Keep putting the cream on. Hope it heals quickly. Rest, rest and then get some more rest!
I'm still doing well thanks. MS fatigue but used to that.
Enjoy your lunch tomorrow.
Pat xx Ps...I do think we were lucky going through this in summer. Would have been even worse getting there everyday in freezing weather and sometimes coming home after dark! xxx
Thanks Pat. All done now. Very swollen and painful nipple, pink and itchy boob and very tired but so relieved it's over. Celebratory lunch planned for tomorrow.
Hope you're still doing ok xx
Congrats Elizabeth and for you tomorrow Lesley!!!! Make sure you do something nice to celebrate!
It's really odd when you finish...I couldn't quite work out what I usually do! But soon becomes absolute bliss not having to get yourself to the hospital every day!
Give yourselves huge pats on backs for getting through it.
All the very best,
Congraulations and well done Elizabeth xx. What a relief. I finish mine on Tuesday, can't wait. What a shame you won't be able to make the most of the spa facilities, but you can enjoy lounging about (hopefully with a glass of something nice) and enjoy the company of your sisters and as you say, a nice head massage and maybe a pedicure. Fingers crossed the sore heals up quickly. Keep in touch and let us know how you get on with the healing xx
Hello All. I had my last rad yesterday...15 plus 5 boosters. Was a big anticlimax! I was supposed to finish on Friday. I'd put champagne in fridge, due to go out for lunch and had been sent some lovely flowers by my family. I then got a call to say that the machine had broken and they were waiting for parts so all appts would be moved to Saturday. It's good to see Jay's post - bring on the healing. I've still got an awful weeping sore under my arm. I'm using intrasite gel but it's not betting better, because of where it is I suppose it will take a bit more time. Fatigue hasn't been too bad but because I took time off work I haven't been doing a huge amount. I have booked a couple of days at a health spa next week with my sisters but actually I should have left it a few more weeks. When we booked I hadn't realised that I would feel so sore and swollen. I can't use the pool because of risk or infection and I don't think I want to be touched anywhere. I'm sure I will relax lying around reading my book and I can have a head massage and pedi. Good luck with the rest of your treatment. Elizabeth 💕
I'm doing good thank you. Fatigue is much better. Breast is healing well. No longer hot and just a bit itchy. It has shrunk a bit which oncologist said it would. I look a bit lopsided mainly because the nipple is now higher than the other, but that's from the surgery, and fine with a bra on. It doesn't bother me. Just glad to have the cancer gone!
So far I seem to be doing ok on the Anastrozole. Had one big hot flush and times when I feel very hot but it's manageable. I'm still slathering on the E45 on breast and very pleased I haven't had one skin break.
Hope everyone has a good weekend and are doing well,
That's great news Jay, so pleased for you. Thanks for posting, gives hope and encouragement to know that this hot, sore itchy stage is not going to be as long as I was dreading! Just two more to go for me. Xx
How about you Pat? How is your skin? Have you got over the fatigue you were suffering from? Hope you're not missing your friends too much now they've gone back to the USA xx
Hi ladies, sorry I've been quiet on here. Got friends staying from the US so it's been lovely but at same time very tiring! They leave tomorrow so I can have a good rest.
I'm doing ok though. Been two weeks on Anastrozole and last night had a HUGE hot flush. Good God I thought I was going to pass out.
My breast is still pink but not nearly as sore and the feeling around the surgery site, which was numb, is starting to have feeling back.
I'm glad to see you are all doing ok although sorry Elizabeth that you have had an infection.
Hope everyone is ok,
All the best,
So happy for you JayG, now you can start getting your life back. Hope you're going to do something nice to celebrate. I'm not that far behind you, just 4 more to get through.
keep in touch on here, I'll be interested to know how your skin holds up after as I'm told the effects continue for a while xx
Thanks Jay. I assume you won't be having rads over the weekend...I hope that you are able to liberally cream up. Elizabeth 😉
Sorry you've had an infection issue Elizabeth I've just had booster 3 of 5 and had to be re-marked with pen as my skin got the better of me at 3am and I got up and slathered myself with cream saying to myself 'to hell with the pen, I hurt!' They managed to find a few remaining very faint marks after peering closely at me I look like I've been badly senburned but otherwise I'm fine thankfully. I have read comments from other ladies on another thread about radiotherapy burns, their treatment and recovery which was quick once the antibiotics kicked in and the rads had finished. As I understand it, skin recovery starts in earnest around 10-14 days after your last session or at least that's what the forums say and what the radiographers at the QE B'ham are telling me. Keep doing everything they're telling you to, keep hydrated (wine doesn't count apparently!) and listen to your body - it'll tell you what you need. Hugs and best wishes for fast healing. Jay
I had number 15 today and I have 5 days of boosters next week. I asked whether I would be marked up again but I was told that I won't notice much difference. I will still have to do the breath holds. The skin on my breast is holding up well but. Have a nasty patch under my arm. It's very sore and weepy. By hey took a swab and it is infected so I am on antibiotics now. Did this happen to anyone else?
I found the same....whipping your top off in front of a couple of young men becomes very normal. They were so kind and caring and never made me feel embarrassed. Also, once in position, they always carefully covered my other breast. In fact the whole team were really great. A real credit to the NHS.
I had a team of two blokes quite often through mine (ours was always done by two, not three people), its amazing how quickly you get used to exposing yourself to the opposite sex....now that didn't sound at all right did it. LOL To be honest, they were the best there at communicating and very informative and a good laugh to boot, so if they are prepared to look at my saggy old boob and treat me with kindness and professionalism, then that's good enough for me.
Thanks for your response Charys, I was confronted by 3 blokes this afternoon when I went for my first booster. Erm.....! They were however super lovely, incredibly professional and extremely caring so I felt comfortable as soon as the lead radiographer stuck out his hand to shake mine, introduced himself by name and title and asked what I'd like him to call me. He explained the procedure to me, asked if I understood what was going to happen, asked if I had any questions and listened carefully and responded appropriately to my concerns re the existing skin damage and being unable to use my cream to relieve the itching. I asked about a template and he explained why it wasn't possible in my case and apologised for having to re-draw the pen marks which had faded due to a sweaty night (thanks Tamoxifen!), and not avoiding the water and soap completely during my shower - how the hell am I supposed to avoid getting my boob wet?!! I guess I could avoid the shower but that would feel wrong and make me feel less 'normal' - I'm clinging onto any semblance of normal by my fingernails! Roll on Tuesday 9/8. I'll be so glad when this part of the nightmare is over!
That is a big ask isn't it! Crikey, I'm glad I didn't have that for my boosters, I had a clear template made before rads and then they placed it each day and drew the spots through the template. That's not fair that you need to use creams and stuff to relieve your skin and can't, it's not very practical is it really.
You might find your legs go extra brown this year, mine have, not sure why......but there's been something odd...maybe the tamoxifen, or the rad treatment or something?!!
If you're looking for something soft to use as a 'wedge' I recommend a muslin nappy (bought from a baby supplies shop). Once washed they are beautifully soft and can be cut up to suit your needs.
They are also wonderfully soft for use when you have a cold and sore nose.
Had to laugh Jill at your post although I know it couldn't have been much fun at the time! I am pretty sure I'll also come into the large and floppy category so at least I have an insight as to what could happen. Didn't realise you could have radiotherapy through a bra.
thanks. Sue X
Hi Caroline, do you mind me asking why you had rads through bra?
I can only suggest that you keep using the cream at least 3 times a day. Also is your bra comfortable? If it rubs the skin at all it can cause skin breaks. I bought 2 bras on Amazon that were breastfeeding sleeping bras. Very soft and comfy. Let me know if you want more info.
All the best & hope skin burns heal soon. Did you ask the rads nurse for advice?
New to this. Last 3 rads to go. Had radio through my bra which makes skin burns worse and am in agony with at least a week until it peaks. Any advice gratefully received.
Hi, I'm new to the forum as only diagnosed recently but read the last post on rads and wanted to ask how they position you. I have a shoulder replacement on the sid being treated and can't raise my arm too far back without discomfort. Wonder if this will be a problem.
Hi I have now had 9 sessions. The first 4 were agony As I also have a bad shoulder. However, on rad no 5 the hand rest was in a different position and I was much more comfortable. I now make sure my hand is positioned above my head. Before my arm seemed to be stretched out and pulled my shoulder. Ask them to move it to suit you. They can move it a bit and you might find a position that helps. I was in agony during the first 4 because of the positioning, but am ok now. Good luck!
So pleased it all went well for you at the checkup Pat. Now you can relax a bit, and as you say, no more hospital appointments for a while, bliss! Monday is going to be a long day for me, rads in the morning, home hopefully in time for a cuppa and a sit down, then have to set off again to another hospital for a bone scan in the afternoon. Enjoy your weekend xx
Had my follow-up at rads and nurse is very pleased with my breast...no skin breaks at all. I don't need to go back for more checks.
Got appointment letter from consultant this morning...October 24th!!! SO happy that I can finally get back to normal & not spend half my life at hospital (well ok, it wasn't half...but what with the preparing to go, then the getting there and the getting home...it felt like half!).
Hope everyone is having a good weekend. Don't forget to keep using the cream...and get plenty of rest...and TLC!
Love to all,
Hope all goes well at check up Pat. Glad no skin breaks. I've been on Anastrozole for 4 weeks now, only side effect so far is night sweats. However, I've come off HRT and suffered dreadfully with hot flushes every time I tried to come off it in the past but never had sweats before taking this. I'm really hoping that once my body gets used to it they will settle down a bit. you have ms to deal with on top of all this so everything is going to be so much worse. Sending you a massive hug xx
Hi all, just checking in to say hi and see how you're all doing.
I finished rads on the 19th. I'm still slathering the E45 on and so far no skin breaks at all. The breast has got pinker and is a bit sore and sometimes electric shock like pains...which come and go so quickly they're not a problem.
I started Anastrozole on Tuesday morning. Feeling extremely tired & don't know if it's the rads, the drug or my ms reacting to it all. Probably a combo of all.
I go back to rads tomorrow for a check up.
Sarah I'm not sure about the breathing and left side rads. You could always ask the radiotherapists.
Love to all. It will be over before you know it.
Well done you to carry on working while Going through all this. I was made redundant last year, and although I don't get my pension yet I decided enough was enough having worked ever since I left school. Good luck with the Tamoxifen. I'm on Anastrozole, horrendous night sweats so not getting any sleep so glad I don't have to go to work.
11 down, so you're well on your way. I hope future session go more smoothly for you xx
Hi Ladies I posted earlier before I started but have been so busy since as I am also working full time so just haven't had time to post what with work, going backwards and forwards to the hospital and trying to continue 'as normal' with my life. Today I have 8/15 of the 'normal ones' with 5 targeted ones to go. Its going absolutely fine (just a bit tedious if anything) I'm lathering on the E45 and my skin is holding up just fine I hope everyone else is finding the same,
My tumour was right hand side of left breast. I have seen comments about having to do special breathing during rads, I haven't had to yet but am wondering if I may have to on the 'targeted' ones as (I 'im imagining) it is above my heart . Has anyone else done these yet - is there any difference between them and the normal ? I'm at the QE in Birmingham.
First one today. All went ok. Worst was having to hold arms above head as I have a shoulder problem and by the end was very uncomfortable. Had to have 5 minutes then they came back moved the machine and then another 5 minutes. I kept my eyes closed the whole time and mentally went for a walk in the woods. Can see that it's going to get very tiring when the effects start kicking in as long journey, hanging around then long journey back. However, I've started and can start crossing the session dates off my list. Thanks for the support all xx