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questions about radiotherapy

23 REPLIES
Member

Re: questions about radiotherapy

Hi Linda,


Thanks for getting back to me. That's great.I will take your advice about leaving lots of time. I am actually quite looking forward to starting the treatment, as I feel it is the last step. I still will have my three weekly Herceptin injections but I haven't had any side- effects from them, and I am finding no problems with tamoxifen either. So once radiotherapy is out of the way, and I recover, I will feel that the old me will be back, full of my previous energy! Hopefully!

 

Best wishes

Jane xx

Member

Re: questions about radiotherapy

Hi Linda,


Thanks for getting back to me. That's great.I will take your advice about leaving lots of time. I am actually quite looking forward to starting the treatment, as I feel it is the last step. I still will have my three weekly Herceptin injections but I haven't had any side- effects from them, and I am finding no problems with tamoxifen either. So once radiotherapy is out of the way, and I recover, I will feel that the old me will be back, full of my previous energy! Hopefully!

Best wishes

Jane xx

Member

Re: questions about radiotherapy

Jane yes you can use it anytime so tomorrow morning is fine. I put some on after but was told first and last thing. I may just put it on after though to be on the safe side and use e45 first thing. Hope it goes well. Mine went fine. Some times have changed. Leave lots of time as I was late as no spare free parking so had to use multi storey that was busy. I have arranged to park in a colleagues drive which is what I have been doing as its just a few minutes walk away.x
Member

Re: questions about radiotherapy

Thank you Narnia girl. 

 

They haven't said they will give me anything, but I shall see what I might get tomorrow!

I can just imagine the Christmas music making you emotional. I have always loved Christmas, and find it so magical. But a diagnosis like ours really makes us appreciate things more, and our emotions are definitely heightened. I find my eyes fill with tears quite easily nowadays! Someone being kind, a nice card, some flowers- it can set me off!

 

Best wishes and thanks for your post and good wishes

Jane xx

Member

Re: questions about radiotherapy

Hello again Janie123. My radiotherapists gave me a huge tub of Aquamax for free (main ingredients parrafin - have been warned to be careful around flames!). They told me I can put it on anytime and suggested morning and evening and if I felt I needed it the middle of the day too. It feels very gentle on the skin and doesn't sting. They played Christmas music in the treatment room today - made me a bit emotional! All the best

Member

Re: questions about radiotherapy

Thank you Linda! That's good to know. I have high hopes for this cream as it comes highly recommended !

Also, if you get to see this before tomorrow- do you mean it is fine for me to put it on tomorrow morning, even if it is less than four hours before my radiotherapy? Also, do you know, should I moisturise before and after radiotherapy in any case?

Best wishes

Jane xx

Member

Re: questions about radiotherapy

Jane yes they said it is fine to use and also no need to put it on only 4 hours or more beforehand. x

Member

Re: questions about radiotherapy

Thanks Jane. I will let you know what they say. They did say aqeous cream is ok but that contains paraffin too and I read only use it as a shower gel. Mmm. Not used it yet just in case but will put on after if ok. x
Member

Re: questions about radiotherapy

Hi LInda,

 

Probably best to check, but it does state on Amazon that one of the indications for Biafine is for treatment of skin undergoing radiation. I will use it tonight, but not tomorrow morning - I will wait til after the radiotherapy to apply it. Good luck for your radiotherapy

 

Best wishes

Jane xx

Member

Re: questions about radiotherapy

Biafine contains paraffin and I read not to use moisturiser with paraffin in it so is this ok to use? I got some but thought maybe best to check tomorrow when I have my first radiotherapy appointment.
Member

Re: questions about radiotherapy

Hi Blueash,

Thank you for the advice about Herceptin. I am having another Echo in February, and I will be interested to see what my heart function is, and what it was at the beginning. I have always been very fit, but especially in the two years before my diagnosis, ironically.

 When I had my Herceptin three days ago, the nurse said my function was 55% and she could go ahead ' as long as it stays above 50%', I asked her what it should be, and she said, ideally we would all be 100% but I read that anywhere between 55 and 70% is normal! So I am not sure, and will speak with my oncologist.

But if he is happy for me to take the supplements that you mentioned, then I will.

I am feeling very well though, and I have started back on my running machine recently.

 

Best wishes

Jane

Community Champion

Re: questions about radiotherapy

Hi Sally, I had the sub clavicle radiiotheraoy as well. The only thing I would say is that you may find your back gets burnt. The beam is altered so it is directly above your nipple area, so there is no shield, only the bed you are laid on, and so I think it sort of bounced back on me. My hospital in Newcastle provided a range of creams for me as I progressed through my 25 rads, and all were extremely effective. I started on day 1 with an aqueous cream to put on immediately after treatment, then every few hours. Then I was given  a cream which was a bit like a layer of plastic. This was because the skin over the clavicle is quite thin, and it looked a bit red. When  my back felt itchy and hot one of the team popped along to the burns unit and produced a lovely cooling gel which hubby rubbed over my back . I was never in any pain, and during the whole process it was made very clear that any alteration in the skin needed to be monitored, mentioned and sorted ASAP. The only shower gel I was advised to use was Simple, and I continued to use Aveeno which I'd been given during chemo. Compared to the chemo this was the easy bit. Hoping it all goes well for you as you've certainly been through the mill. 🍀💐

Community Champion

Re: questions about radiotherapy

Jane you are very welcome, as you say this forum is wonderful. After you have gone through it all yourself please stick around and help others coming after you.

 

I put on about 4 kilos of water retention while on Chemo amd Herceptin. I was puffy and swollen everywhere BUT it does go a few months after your last Herceptin.

 

Also Herceptin can effect your heart and that is why you need the scans every so often. My heart scan was in danger of going too low to continue so I took  some supplements. I have cut and pasted this in case you want the info:

 

 

"........In addition I took pynogenol and coq10 and my heart was fine and I managed all 18 Herceptins. It was Bibi on here that put me wise to those supplements and I will see if I can find her thread for you.

 

I could not get the combined one in her study so I take these:

https://www.amazon.co.uk/Pycnogenol-Vegeterian-Capsules-100-Count/dp/B00QJ4F0KG/ref=sr_1_2_s_it?s=dr...

 

and any Coq10.

 

Well I cannot find the original post but this is one that someone else asked about:

https://forum.breastcancercare.org.uk/t5/Targeted-therapies/Herceptin-and-improving-heart-function/m... ....."

Member

Re: questions about radiotherapy

Hi blueash,

 

Thank you SO much for the practical advice. This is such a fantastic forum, because lovely women like you can recommend things that have actually worked! Also, generally, just knowing that I have a whole host of women who are experiencing what I am, makes this journey so much easier. I have a fantastic group of friends but only one of my closest girlfriends has gone through it.

I have used your link, and, as an Amazon Prime customer, my Biofine is arriving tomorrow, all ready for next Tuesday! I will get the Clarityn on my Tesco shop today!

 

Thank you again

Jane xx

Community Champion

Re: questions about radiotherapy

I can recommend this cream https://www.amazon.co.uk/Biafine-271164-Emulsion-hydratante-186g/dp/B017NMJKL2/ref=sr_1_1_a_it?ie=UT...

 

I had the regular radiation plus boosts and they usually only give this out if your skin is actually damaged BUT I thought it worth the investment and my skin was perfect apart from an area under my arm where I did not put it because I did not know the beam went that far. No sooner did I apply the cream than it was under control.

 

You must not use in for 4 hours before your treatment. Mine were always at 9 am so I did not apply it before I went but I put it on in the cubicle when I got dressed, again at about 3pm and once more before bed.

 

Also if you are going to be on Herceptin take claritin hay fever tablets twice a day 12 hours apart. This is why:

http://myangrycancer.blogspot.com/2013/02/claritin-is-worth-its-weight-in-gold.html

Member

Re: questions about radiotherapy

Hi Adrift,

 

Thank you for your encouraging words and tips. I will focus on the end of January! I am happily having no side effects from the tamoxifen, nor the three weekly herceptin injections, and I feel really well. So, no matter what radiotherapy brings, there is light at the end of the tunnel.

 I  will have reconstruction in a year, but that will be something to look forward to!

Thanks again

 

Jane xx

Member

Re: questions about radiotherapy

Hi Janie,

Good to hear you have your start date for your radiotherapy, I hope it all goes well for you. I started my treatment last Tuesday so will be half way through tomorrow. So far the effects haven't been too bad, though the travelling might be tiring for you. My treatments are early morning, so I'm getting tired for a different reason.

The basic recommendadtions to avoid too many side effects are to drink lots - keep hydrated, and use cream regularly. I'm creaming 2 - 3 times a day (don't forget your back) and using E45.

The radiographers I see said they don't make any recommendations on what cream to use, and when asked, they said to use the cream at least 30 - 60 minutes before the treatment, but I think that advice varies from hospital to hospital.

Good luck, and focus on the end of January, when it will be all over and you'll be ready for your "Moving Forward" course. x

Member

Re: questions about radiotherapy

Hi Sally

 

Ooh, I hope I find mine a doddle too!

I can empathise with the travel. Our local hospital has a new radiotherapy centre, which was scheduled to open in June. It is five minutes walk from work, and I go back to work on 2nd Jan. But, delays have meant that the unit opens on 15th January, five days after I finish the radiotherapy!

This now means a forty five minute journey on a good day with little traffic, but probably double that in rush hour, to get to the radiotherapy centre!

I have tried so hard to request that I start the radiotherapy sooner. I have healed so well after my mastectomy and I know the guidelines are to start within 31 days of surgery ideally, but they can't do it any sooner.

So it is a shame, but it is what it is.

 

Best wishes

Jane xx

Member

Re: questions about radiotherapy

Hi Jane, 1st time it was a doddle so I'm hoping it will be again. I ended up with just slight sunburn type burn which I put loads of Acqueuos cream on. Last time was to the breast itself which is now gone so this time is more to the collarbone area which won't require me to keep my dodge arm up so that's good. Only drawback was is that I was hoping to have it at St Thomas' in London where I had it before because I work a two minute walk around the corner but they don't do it there any more so I'll have to traipse over to Guys every day.
Member

Re: questions about radiotherapy

Hi Sally

Goodness, you have had a tough time. How are you feeling? I , too, thought you couldn't have radiotherapy to the same area twice. Has the thinking changed, or are there special circumstances? How did you find radiotherapy the first time? Any tips gratefully received.

 

I wish you the best of luck with your treatment
Jane

Member

Re: questions about radiotherapy

Hi, I had pagers disease in 2006 and had surgery and radiotherapy. This year I had lobular cancer and have had a mastectomy, a second surgery for the node clearance and shave of the chest wall due to the size of the tumour 11.5 cms , chemo and now, 8 months after surgery it's been decided I'm to have radiotherapy too after i was initially told it wasn't possible to have it twice. This time it's going to be near the collar bone because of affected lymph nodes. .
Member

Re: questions about radiotherapy

Hi blueash,
Thank you for your reply. I am starting radiotherapy next Tuesday. I am reassured by your last paragraph. Thank you!
Jane xx
Community Champion

Re: questions about radiotherapy

I met a woman at my radiotherapy sessions that had been through a mastectomy. It is unusual to have rads after a mastectomy but she said they told her that the site of her cancer was the reason. She had it far back in her breast so growing into the wall of the chest if you get what I mean. Mine was the total opposite and was only growing on my nipple - I had Paget's disease.

 

Perhaps yours was far back and was near tissue not easily removed. But rads are nothing to worry about, you just have to go every day for weeks is the worst of it. You might get a bit of redness but it is painless.

Highlighted
Member

questions about radiotherapy

Hi ladies,

I posted the below on the surgery section but thought it would probably be more relevant to this section. Any replies gratefully received. x

Following my mastectomy on 31st October, I get my results this Thursday. I am triple positve and was given chemotherapy before surgery. This completely resolved my 5cm invasive tumour ( they could see 2-3mm of what they thought was scar tissue on the last scan). However due to the 9cm of dcis, mastectomy was the only option. I have been given differing opinions about the need for radiotherapy from three different breast cancer surgeons about the need for post operative radiotherapy. However I actually want it because I have checked the uk guidelines and I do fall into the category of needing it- see below- and I consented to mastectomy with delayed reconstruction because of the need for radiotherapy after surgery.

I am driving myself crazy , researching papers on the likelihood of cancer free lymph nodes from the SNB ( the three ultrasounds showed no evidence of cancer in the nodes and the initial fine needle aspiration was negative too).

 In the literature it states the risk of recurrence is higher if the tumour is 5cm or more, hence the need for radiotherapy. Is this the case if I have had the mastectomy though? Where would it come back? Does it mean recurrence in the same breast ( in residual breast tissue?). Would it be the same type ( triple positive)? I will have herceptin til next June, every three weeks, and medication too.

Also, the guidelines state that radiotherapy should start within 31 days ( in England). Is that likely? One of the surgeons said it would be ten weeks. I know I have to wait for healing, but I have had no post-operative complications, I have really good arm movements, little pain etc. ( Interestingly, on a different post, a lady was concerned about removing her dressings. I was told to remove my dressing after three days. I wasn't given drains. No-one has telephoned to check if the wound is looking alright. I just got a phonecall the day after surgery, when I had the dressing in place, and I told the nurse I was really traumatised and felt mutilated, and I couldn't bear to look at it. Luckily I am coming to terms with it now).

Sorry about the long post. I welcome any comments/ advice.

Jane xx