August 2018 Radiotherapy

[Madambutterfly]

I did the same thing before finding this site and omg when I say I was petrified to what my Google diagnosis was ... Thank you for being here.

[amyjb]

I know, naughty ay Lilacmoon14 😂, especially worrying when one site said it could be a symptom of throat cancer, thankfully the cancer research site said it was a rads SE and the radiographers confirmed that for me this afternoon, phew 👍😁

[Lilacmoon14]

You Googled! 😂😂😂😂
Step away from the search engines 😘

[amyjb]

Welcome Madambutterfly xx

Has anyone else developed a sore throat?  Not like a cough but quite painful to swallow?  I've just googled it (tsk tsk) and could be a rads SE.  I'm going to bring it up with the radiographers today but was interested to see if anyone else had it??

Amy x

[Madambutterfly]

I just joined and I must say I'm so ever so grateful for what has been said here. Its difficult to make friends and family truly understand and to share with a community that is experiencing the same journey has become so beneficial. And this has only been two hours of joining.

I finished my rads treament last week and i have experienced tender nipple and the skin has come off around the treated area, shooting pains and itching, it almost feels like at times it is on fire which apparently is common. I also have large breasts so although told not to wear a bra found it diffucilt not to. The hospital gave me some silcone pads to use to protect the area from chafing, which has helped. Also because of the itching they gave me some gel which they advise put in the fridge before use, to use on top of the moisturizing cream they gave. My boob currently looks like a patchwork and under my armpit it is very dark. But they say this should settle.

[Appletree]

My radiographers had some cards sitting on the top of their control unit, so on my last visit I gave them a big one I bought at my Vet's. It had a large ginger cat sprawled out down a staircase, looking very comfortable and disinclined to move. The caption was: 'Naps can occur at any time, without warning.' I wrote inside, 'But not on your couch!' and added an appreciative message. It was nice to see it up with the others.

I hope everyone's aches and pains are subsiding and the break in the weather has brought some relief.

[mcnulcc]

Jclarke4 I have also done 10 sessions and apart from being really really tired my se are like yours stinging and stabbing pains but nothing near as bad as I imagined. I also wondered about getting the radiographers a little token to say thank you. Was thinking maybe some nice biscuits for their break time. Will wait to see if anyone has any better suggestions.
Lilacmoon14 great news about your appointments really pleased you are well on the road to recovery.
Have a great weekend everyone. Slap on the cream and drink plenty of water x

[jclarke4]

10 out of 20 sessions done! Yay!!!! Am feeling really tired but not too sore. More stinging and stabbing type pains. Am using Zerobase emollient cream which seems to be doing the trick. The radio therapists are all lovely and so far it hasn’t been too bad. Has anyone given their radiotherapy dept a box of chocolates or anything at the end of their treatment? Just feel like I want to say thank you somehow xxx keep going everyone xxx

[Lilacmoon14]

Lovelies,
Saw my Onc yesterday and all is well.
He asked about SE's and how my skin was, checked I was still moisturisering and asked about my general health.
I had a few questions for him but in the end i decided not to ask what grade my blip had been as I think i was too scared of the answer!!!
I also asked about chances of reoccurrance and he used a website to enter all my details and the details of my blip and basically I have the same odds as any other normal person my age so that made me feel better!
Another appointment in 6 weeks to see my BC nurse and thats when they will sign me off.
Wow, from first going to the doctors when discovering the blip, to being signed off in 6 weeks time, just 6 months from start to finish in total.

So my lovely rad ladies, you're getting there and the hard part is nearly all done.
Just keep it going with the water and moisturiser seems to be the ongoing message even when the actual zapping ends.

Have a relaxing w/e

😊😊😊

[Thistledown]

Annieapple

Thanks for the post, it’s everything I’d like to say too !!  I have 10 sessions left but could not have got so far without the help and support on here, with people who really understand...

Love the tip re almonds and Vitamin E, I adore almonds, what a great excuse to eat loads, washed down with all the water of course ! 

All the the best for your last 3 sessions, after our weekend off..yay...

xx 

[ANNIEAPPLE]

Thank you to everyone in this forum, my path has been fairly straightforward but still worrying. I have welcomed the information here and when I read I think this is my time to think about me and my condition with others going through similar scenarios. My family are supportive in that I am asked if I'm ok but it's not the same as having people who UNDERSTAND and have been there.
I am so looking forward to the weekend of not going to the hospital and so very pleased that I only have 3 to go!
Xx

[Lilacmoon14]

AnnieApple, same as.
I have my appointment today and i finished rads 5 weeks ago. Its meant to be 6 weeks but I think he must be on holiday next week so they brought it foward.
I'll nip back later and let you what was said x But i guess its just to make sure all the SE's have settled and then plan what happens from now on.
I already got sent an appointment for next May for my mammy, and then one for next November for my clinical review. My NHS trust seems to be a well oiled machine!!!

Hope everyone is looking forward to two zap free days xxx

[ladybowler]

annieapply

Its amaxzing how all of a sudden you realise that you can see the light at the end of the tunnel and you are almost finished

I finished my rads in the January and had an appointment with my oncologist in the March so pretty much the same as you.  I think they like to leave it a couple of months to give you time to recover from the rads.

The effects of the rads do carry on for a couple weeks and can get more noticable however it does not always happen and affects everyone differently, just make sure you keep on moisturising and taking in plenty of fluids, your body will let you know if you need to rest

xx

[ANNIEAPPLE]

Hi
I can't believe the 15 sessions are quickly disappearing- only 4 to go!
On Monday it felt like a very long haul.
I got an appointment for my oncologist in October- that seems a long way off, is that normal?
I have gone so far with no side effects, have used aveeno body wash in my daily quick bath with aveeno cream applied after the bath. I eat lots of almonds that should be rich in vitamin E to help skin, gallons of water.
I have read that side effects may still come after end of sessions- hope not. I hope others have an easy passage through
Xx

[Thistledown]

Mcnulcc

I’ve only got three sessions over with so far but am definitely just beginning to feel the effects as they seem to be hitting you at 8, not looking forward to the results of the next couple of weeks at all...skin is already quite dark in some areas, I’ve been quite pink in that area since op. Tingly and a few sharp shooting pains, snap.

I wasn’t very good at drinking water as I should, but have to agree that this treatment plus the hot weather has made it easier, as I’m thirsty most of the time ..drinking lots does help, everyone’s right about that.

I have some Aloe Vera on standby too, and cold flannels are a good tip - I’m reminded that I always resorted to using them over the years,  to help me get through hot nights, (hate being hot while trying to sleep!) - hopefully they’ll work again if needed.

I hope that you will get through your remaining sessions without discomfort, and you are well on the home straight now, only 7 to go..

Best of luck, will be following a few steps behind !

Thistle x 

[mcnulcc]

Amyjb. I was really tired yesterday felt like I was walking through treacle so I increased my water intake and feeling much better today. I have always drunk a lot of water but I think this hot weather is probably increasing issues with hydration. Just applied some aloe Vera gel that I have had in the fridge. Oh the bliss... Feels so much better so will be continuing to apply this along side the cream given by hospital unless they tell me otherwise.
By tommorow night you will be more than half way through treatment what a lovely positive thought to go to sleep with. Good luck with the rest of your treatment hope your skin continues to hold up. Chris xx

[amyjb]

mcnulcc I must be just behind you, I'm 7 down 8 to go!  I haven't had any changes in my skin so far but am feeling quite fatigued, not too bad tho 😊

[mcnulcc]

Lilacmoon14. "Think I will try the wet flannel tonight as you say worth a try xx

[mcnulcc]

8 down 7 to go so half way there.!!
Now very pink and a bit sore and starting to get stabbing pains every now and then. Radiographer said this is normal so trying not to let imagination run away with me.
Hope everyone is progressing nicely and se are minimal. We can do this xx

[Lilacmoon14]

Oh NikNak, sorru to hear your skin is suffering 😔 Mine only ever turned pink and was a bit itchy just below my neck.
Have you asked for help from the technicians?
Something i used to do at my itchiest times, was to put a cold facecloth over the area and this was lovely and cooled it down.

Worth a try x

[NikNak73]

hi both, thanks for your replies - it was ok, quite nice to be manhandled a little less as the equpiment moves instead! Lilacmoon that sounds horrendous - no it doesn't cover my nipple (thank god as it is really sore already) my skin is really starting to suffer so I will be very glad to get to the end of this week...

[Lilacmoon14]

Hi NikNak, hope the boosters have started ok??
Does the booster area cover your nipple?? The reason i ask is because it covered mine and the poor thing literally exploded!! 🤤😂😂
After being taken off and then reattached after surgery, it then got zapped. Of all the SE' of rads this was by far the most gory. But lots of lanolin cream and moisturiser and it was a lot better after a week.
You can ask the technicians to show you a scan of the area the boosters going for.
I found it all very fascinating seeing my scans. Seemed weird to think it was me!!

Hipe this week flys for you xx

[ladybowler]

NikNak

You have probably had your first booster session but just in case, it is that the radiotherapy is focused on the tumour site rather than the whole breast, it generally is a lot quicker than the regular sessons.  You will notice that the area that they focus on will go quite dark brown for a while but it will not be long before it lightens again.  Mine looked a bit like an iron shaped area on the breast and was darker than the rest of the breast.

Helena

[NikNak73]

hi folks I started on the July thread and need to move over to August! I have completed 3 weeks of Radio and start my Booster week today, so not sure what will be different - can anyone enlighten me?

I am still working, although finishing early before heading off for my afternoon appts. I have found that if I crash for an hour when I get home, with a book and cup of tea, it helps me get through the rest of the evening.

I am certainly feeling sore and itchy now. My last review lady was telling me I must stop wearing a bra, but with large boobs that's just not comfortable (especially in this weather). I have compromised by digging out my post-surgery bras and investing in a bra extender to loosen them up a bit. I can't tell if the itchy rashy patches are being caused by the treatment or the cream - Aveeno is quite thick and my skin's not used to it!

[Appletree]

At present, bisphosphonates are licensed for treatment for osteoporosis, but not as yet licensed for use in breast cancer patients to prevent recurrence of the disease, so they must be started by a specialist in hospital who has the appropriate experience and can advise the patient's GP.

I have taken the following notes from the booklet produced by Sheffield Teaching Hospitals, Weston Park Cancer Hospital, which is involved in the research relating to use of bisphosphonates for cancer treatment, and where I'm being treated. (Weston Park Hospital is a Centre of Excellence and one of only four dedicated cancer hospitals in England, apparently.)

Bisphosphonates control the cells that break down bone (osteoclasts) and allow the cells that rebuild bone (osteoblasts) to work better. As a result they increase bone density and strength and thereby reduce the risk of fractures especially at the wrist, hip and spine. They have been used for some time as a treatment for osteoporosis.

Clinical studies have shown that breast cancers can recur in bones, often many years after the tumour has been removed from the breast. Doctors think this could be because the chemicals that control bone turnover could also encourage the growth of breast cancer cells inside bones. Clinical trials of bisphosphonates in early breast cancer began in the 1990s. These drugs were added to standard treatments after breast surgey, like chemotherapy and tamoxifen, and compared to these standard treatments alone. These clilnical trals found that bisphosphonates reduced the risk of breast cancer coming back in patients' bones and often meant that patients lived longer.

Not all patients had the same degree of benefit. The greatest benefits were seen in two groups:

• Post-menopausal women.

• Pre-menopausal women who were treated with drugs to suppress their ovaries.

In addition to reducing the risk of secondary breast cancer, if you are being given hormone therapy e.g. aromatase inhibitors to prevent production of oestrogen, bisphosphonates can help to compensate for the risk of bone thinning as a consequence of loss of oestrogen from fat cells.

Bisphosphonates can be taken as tablets or administered by drip. The frequency of the dose depends on whether you are having chemo at the same time, or whether (as in my case) you aren't having chemo and this therapy is following on from surgery and rads, and is associated with hormone therapy. I have a Zoledronic acid (bisphosphonate) infusion every 6 months at Weston Park Hospital. This will be for 3 years.

The side effects depend on whether bisphosphonates are given through the veins as a drip or swallowed as a tablet. In tablet form, they can cause gastroenterological problems.

When administered only for osteoporosis, the dose is lower and the frequency of doses is lower.

For the full leaflet, here is a link.

Bisphosphonates for breast cancer - Sheffield Teaching Hospital

publicdocuments.sth.nhs.uk/pil3798.pdf

What are bisphosphonates? Bone constantly undergoes a process of renewal. Specialised bone cells break down old bone and replace it with new bone ...

[mcnulcc]

Anniapple and Thistle. Thank you for your response l will start to take a look at the articles. I stopped looking at certain websites just before surgery as I scared myself to death with some of the information. However obviously now much stronger mentally and reading targeted articles rather than everything anyone has ever written regarding breast cancer true or not!!. "Hope you have a good weekend. Chris x

[Thistledown]

Hello

Mcnulcc - regarding bisphosphonates, I recall seeing that word on the NHS Predict website, (my oncologist put this site up on her computer to explain about the benefits of Letrozole, and I saw this 'Bisphosphonates’  mentioned.) I looked it up and saw that it was given out to prevent Osteoporosis, so was confused...

But checking out the info provided by Annieapple and the Breast Cancer Research website, they mention it being a probable preventative for recurrence, so that must be why it’s on the NHS Predict... !!

There seems to be research getting carried out on other things too, like Aspirin, I was asked if I’d partake in the Add-Aspirin trial, very interesting to read up on that ! 

Wonder if we will be offered bisphosphonates .. my DEXA scan in a fortnight, that may say that I need it ! 

Best wishes, Thistle x 

[ANNIEAPPLE]

I've cut and pasted some of the information- but I would recommend that you go on www.breastcancernow.org. And search for
' bisphosphonates'
And see the write ups.
See below what I have cut and pasted from the monthly email from breast cancer now.

We've rounded up our latest research news and discoveries being made in our labs, all through the help of amazing supporters like you.

This month, we look at how we’re closer than ever to solving a puzzle that’s been baffling scientists for nearly 40 years and celebrate as Breast Cancer Now supporters' actions ensure the results of breast cancer research are reaching patients.
Bisphosphonates get the green light

A significant step has been taken towards preventing one in ten breast cancer deaths in England
A significant step has been taken towards preventing one in ten breast cancer deaths in England
Thousands of Breast Cancer Now supporters who demanded action to improve access to a type of drug, which could prevent one in ten breast cancer deaths in England, have helped make a life-saving breakthrough.

Bisphosphonates reduce the chances of breast cancer spreading and becoming incurable. However, access to these drugs for patients has been patchy. Now, in a significant step forward, new guidelines have been published recommending these cheap drugs are offered to the women who need them most to help prevent deaths from breast cancer.
Read about bisphosphonates
How we’re solving a 39-year-old puzzle

How we’re solving a 39-year-old puzzle
We’ve been working at the forefront of research into a protein that’s been baffling scientists for nearly four decades
Now, from his lab in Dundee, Breast Cancer Now researcher Dr Jean-Christophe Bourdon has discovered what we hope might be one of the final pieces of the puzzle.

Known as the ‘Guardian of the Genome’, the p53 protein has the vital job of protecting our DNA from being damaged and our cells from becoming cancerous. But in an important breakthrough, Dr Bourdon has found that p53 might not always be protecting us from cancer and could explain why some treatments don’t work as well as we think they should.
Read about Dr Bourdon’s research

Hope this is helpful. I think the research is getting so exciting to prevent and cure. X

[mcnulcc]

Anniapple do you have a link to this article at all?

[ANNIEAPPLE]

I just read about bishophosphates on an email from breast cancer- sounds ground breaking to me!

[Lilacmoon14]

Not heard mention of bisophospates before.
Could it be an age or family history thing?

[mcnulcc]

Thistledown. Big tubs of cream still given out here in Merseyside. It really does seem that each health authority has different guidelines. I had bought loads of aloe Vera gel before starting my treatment but was told on day one only to use cream given to me in clinic.
Has anyone else been told that they will need bisophospates as this bit of news was imparted to me during my review today with the lead radiologist first time that this has been mentioned. I do wonder sometimes if there is an unwritten rule about drip feeding information. I don't need any more surprises xx

[Thistledown]

Hi all

Thanks for the tips re cream, I do have Aveeno already as I've been using that to moisturise arm, but thought aqueous cream was needed for rads somehow. I recall when my mum in law and her sister were having rads at our hospital, they were given big tubs of cream at their first appointments, remember them saying you could tell the newbie rads as they were all trooping down the corridor clutching cream !!   Obviously not standard up here now... the Aloe Vera sounds nice, (recall using the gel from a leaf years ago on hol, it was lovely and cooling on sun burned skin)...sticking cream in fridge sounds sensible too...

I've found that Vit E oil is helping with the scarring a lot, and camellia oil for the arm as a night time treatment too.Like that as it's not greasy !!

Thanks all and continued good luck in getting through these zaps.

Thistle x

[Lilacmoon14]

Hi all x
It wasn't mentioned to me about purfume and deodorant but to be honest i took time off work during my rads so always had a shower before i went so felt pretty fresh!
I never use E45 as it contains paraffin and I just have a mad mental block from thinking about the paraffin heater we had growing up!!
Stuck to Aloe Vera cream and gel and had no problems at all. I put the cooling gel on straight after my treatment. My skin never felt sore or dry but i still moisturised 3 times a day.
The only issue I ever has was at the end when my nipple got really sore and swollen as it was in the direct line of the booster zap. I resorted to nip cteam and breast pads from Boots and everthing was sorted in a week.
Im amazed at how well everything has healed, surgery scars as well! Its now a month since I finished and although I still have the outline of where the booster was, alls fine. Im still applying moisturiser during the day and bio oil at night. Until i see my oncologist next Friday I'll carry on slapping it all on. I just want the nod to say everything has healed as it should.

Hugs and good luck xxxxxx

[amyjb]

Hi Thistle, I'm using Cetraben and Aveeno.  You can get them both on prescription from gp xx

[ladybowler]

amyjb

I used E45 for the whole time of my rads, would put it on 3 times a day and I took some with me to each apt and to apply it after each session when I got dressed.  I was using aloe vera but half way through they advised me to stop, think I was over moisturising, my rads nurse told me to keep the E45 in the fridge and then it would act as a cooling agent as well.

Helena xx

[ladybowler]

JaneBelinda

Yes I was told not to.  The deoderant thing is that there is aluminium in the usual ones.  I got something called pitroc deo from Boots, it is a natural deoderant stick, takes a bit of getting used as you either need to apply to damp skin or wet the end of it, but it works.

One tip when you are havinga shower, pat your breast dry gently dont rub

Helena xxx

[ladybowler]

Sarah

Hello and welcoem to the thread.  Although mine was right breast, I had 20 sessions as well.

Anything you want to know ask away and I am sure one of us will be able to help.

Helena xxx

[Thistledown]

Hello all

Starting Radiotherapy in 6th August - 15 sessions (I hope!) - interesting that I am a left-breaster but have not been told about breath-holding technique when I went for my planning meeting on 23rd July ...🤔

- but they will probably talk me through that on 6th, - the radiographers were very nice and understanding of the fact that I’m very deaf (since birth) and I was worried that they’d be shouting instructions from across the room and I’d not be able to see faces to read lips 😬😬, but in the end they ‘loomed’ over me and I got it all - thank goodness ! Very impressed and grateful to them for that day...they made it feel it wasn’t going to be such an ordeal when it all starts...

And I also mentioned swelling has started in hand,wrist and fingers, it looks like the onset of lymphoedema in the affected arm, they’ve referred me to the lympho unit on the 14th...Has anyone experience of lymphoedema worsening because of rads please ? Would appreciate any advice, so far I’ve not been given much info regarding that...I had to have full ANC clearance btw because of 2 nodes affected.

Also, any recommendations as to the best cream to slap on afterwards? People have mentioned E45 not being that good ? 

Thank you to all for being there !! 

And the best of luck to everyone on their rads this month.

Thistle xx

[amyjb]

Hello all, had session 2 of 15 today and so far all is going smoothly.  I can't remember if they said no perfume but I'd probably not bother at the moment, however they did say it was ok to use roll on deodorant (not spray) and to moisturize a lot!  From what I can gather from reading other forums is that each unit is different as to what they advise - helpful?!  All the best everyone, Amy xx

[jclarke4]

Started my 20 sessions on Monday too! Day 1 was fine but day 2 a bit more of an ordeal as the machine was playing up! My sessions are also at the end of the day so have planned dinners before I leave for the appt. Has been a strange experience so far but the staff are all helpful and explain what they are doing. Good luck to everyone starting their treatment this month. Sending hugs to you all xxx

[JaneBelinda]

Thanks Mcnulcc! Hope yours goes well too x

[mcnulcc]

JaneBelinda. Started my treatment on Monday. Was told no perfume no deodorant and only use simple soap whilst being treated. Going to be a couple of hot sweaty weeks I think!! Good luck with your treatment xx

[JaneBelinda]

Starting mid August for 15 sessions. Has anyone else been told not to wear perfume?

[mcnulcc]

Had my first session yesterday and it was fine. Radiographer was lovely and talked to me through out the process. Booked in for an exercise class before tomorrow's session and have a review with senior radiographer on Thursday to see how things are going. All my sessions are at the end of the day so I am making sure I have prepared dinner before I go so that I don't have to do a lot when I get back. Think slow cooker will be making a come back from back of cupboard for the next couple of weeks. Good luck to everyone having treatment in August we can get through this xx

[Jencat]

Hi Sarah, I finished radiotherapy in June after 30 sessions and did the breath holding technque. (my 15 sessions were spread out into 25+10 lots of boosters done in 5 sessions) I didn't have goggles etc that other's have mentioned in the breath holding thread, the radiologists told me when to start and stop breathing. The radiologists were all lovely and looked after me well and I'm sure yours will do too. You might find it useful to take some paracetamol before each session because I found my arms got uncomfy being in one position for quite a while x

[mustardandgrey]

Hello!

Having completed 5 out of 6 chemos following two operations I can finally see the light at the end of the tunnel, and have my planning appointment for radiotheraphy on Monday.

I'm a left breaster, so will be doing the breath holding technique.

Originally it was going to be 15 sessions, but I have had an extra week of boosters added on to the end, so 20 sessions altogether.

Sarah x

[ladybowler]

Ladies

I have started the new monthly thread for those of you continuing into August and ladies who are starting this month. Ask away there will be plenty of help and support forthcoming.

Sending  you all hugs and best wishes xx