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Is radiation therapy really necessary

18 REPLIES 18

Re: Is radiation therapy really necessary

Jan, congratulations on finishing your rads! I hope you get to make the most of those extra three hours or so a day, at least until you go back to work or whatever.
Look after yourself,
XO

Re: Is radiation therapy really necessary

Thanks FC - yes it was a truly terrible time. We were very close and she had two young daughters too. It was very difficult to be able to grieve and everyone said I had just got to think of myself but I didn't know how. I am still struggling with it now.

Still, I had my last rads today - hoorah! No 3 hour round trip. Just as long as it has done its job.

Jan
x

Re: Is radiation therapy really necessary

Hi Jan, just read your post and I'm so very sorry to hear about your sister, that must be/ have been such a blow for your family, and particularly after just having been diagnosed yourself.
I hope you've been able to find space to grieve during all your treatment.

FC
XO

Re: Is radiation therapy really necessary

Hi,

I was diagnosed last July with 2 tumours of 5m each, Grade 3, no node involvement. I had chemo first to shrink the tumours and then a mx just before Christmas. The post op biopsy only found 1 tumour of 8mm which was fantastic and the onc said that she wouldn't normally prescribe rads for such a small tumour (I asked her to repeat that sentence a few more times - ha ha) but that, because the tumours were large to start with, she wanted me to have 20 rads as a 'belts and braces' measure. I really wanted the rads too and was just grateful that she was saying this. My cancer was triple negative so there was no other treatment offered in any case. My sister had had a similar diagnosis to mine 5 years ago at the age of 40 and had similar treatment i.e. pre chemo, mx but hers was Oestrogen positive so she just had tamoxofen and no rads. Her cancer returned and spread and she sadly died 3 weeks after I was diagnosed. I therefore wanted everything I could have and obviously wished she'd had rads too. I know each case is different etc etc but that's my experience.
Jan
x

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Re: Is radiation therapy really necessary

Dear All

Thank you so much for all your comments. I still have to meet up with oncologist but will certainly quiz them thoroughly. Its a very good point about the lymph nodes in the chest area - hadn't considered them. Am worried about the long term effects of rads - it would be ironic if the very thing its supposed to help then turns round and bites you on the behind! Its such a comfort to know others who have gone through this - it turns your life round doesn't it? Many thanks once again. Oz x

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Re: Is radiation therapy really necessary

I am starting rads in a couple of weeks.
When I met the doctor overseeing this, he explained that they will be concentrating on the breast and on the chest ...the sternum...as there are lymph nodes under there that are difficult to remove and these need to be treated ....
Altho i've had a full axillary clearance and had clear margins on the lumpectomy i wouldnt dream of not having the radiotherapy because of those pesky little lymph nodes in the chest..worth asking about them......had not come across them in any of my research.

Mary M

Re: Is radiation therapy really necessary

It prevents local recurrance ie coming back to same breast.I read an article recently regarding the much higher sucess rate of cure for b.c. for radiotherapy than chemo. It could do with more funding in comparison to the high level for chemo.So go along with it. Didn't find it bad -just some blistering afterwards which hopefully will clear up within the next few weeks.

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Re: Is radiation therapy really necessary

Hi Firecracker and all

I am a nutritionist so am very interested in this side with bc.
task no 1 is to make sure I have a normal BMI so have got to lose about 10 pounds (don't we all get a bit complacent as we get older and I should know better).
Task no 2 is cutting down or excluding alcohol where ever possible as my little liver has got enough to cope with with all the radiotherapy and ridding my body of anaesthetic
Task no 3 is to maintain high levels of fruit and veg, reduce meats especially red and processed meat and most processed food and high sugar
Task no 4 is to reduce my dairy intake see the link on this website http://share.breastcancercare.org.uk/forum/not-eating-dairy-soya-for-hormone-++++-t29350.html IGF-1 seems to be quite a key issue at the moment but it is important to maintain calcium levels soooo lots of leafy green veg almonds figs seeds etc (i have actually cut dairy out - Jane Plant is certainly a very impressive read )
Task 5 is to maintain daily walks and try to increase this when radiotherapy + few weeks are done - I am aiming for a 5km race for life in the summer - anyone want to do a parallel one??
This is giving me a focus and an aim where before everything quite simply turned upside down - a feeling we all know so very well. BTW I was recommended a wonderful site to visit by my bc nurse - thehaven.org.uk - well worth a look. love to all x

Re: Is radiation therapy really necessary

My rad oncologist told me that of every 10 women who have rads it is beneficial to only 1 and the other 9 really didn't need to undergo the treatment, but I decided that since I was already the 1 in 8 who was diagnosed with breast cancer then I most certainly was not going to NOT have the rads and then discover that I was the 1 in 10 that should have had it.

The more treatments that I could have as part of my insurance policy against a recurrence the better in my mind, and if you have had chemo then rads is a doddle in comparison, other than the to-ing and fro-ing every day.

I have had the 'Full Monty' treatment - mx with reconstruction, chemo, rads and still on herceptin.

Just slap on the aqueous cream making sure that you cover more than just your boob as your breast tissue extends beyond this, don't use perfumed soaps or shower/bath products, don't use deodorant and do your exercises whilst you are undergoing rads and you should be fine as I never had any problems whatsoever and my skin stayed fine throughout.

Good luck

Re: Is radiation therapy really necessary

Firecracker,

The hospital gave me a big tub of aqueous cream and they said to put it on an hour before treatment, but as my skin is quite dry in normal life, I layered it on thick morning, noon and night. Its realy moisturising. They also gave me some aloe vera gel which I kept in the fridge. The idea being if you skin starts to itch the gel will cool it down, but my skin didn't suffer much.

As for the Tamoxifen I have had every side effect going, nausea, hot flushes, depression, weight gain, weird dreams, swollen fingers and ankles. Not sure whether it was hindered by Herceptin so have now finished Herceptin, having a break from Tam whilst my system settles and will try again in a few months.

I had my treatment private so they just gave me the creams - not sure if it is the same in the NHS or whether they tell you what you need and you have to buy them. I have seen big tubs of both in Boots.

Hope that helps.
Sam

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Re: Is radiation therapy really necessary

Hi ladies, I finished radio last thursday after waiting 13 weeks for it after surgery due to waiting list. I also asked was it required, my bc was 9mm grade 2, no nodes. My surgeon told me it was preventative treatment?? I managed fine, just ended up with a terrible itch like prickly heat, and skin broke slightly under boob but all healed now due to a gel the hosp gavd me. I'm also on tamoxifen and I don't really have se, must add I'm more worried about not having them incase its not working. Iv also changed my diet but I believe everything in moderation. I'm currently doing a nutrition course at maggies and find it really helpful karen xx

Re: Is radiation therapy really necessary

Hi SamLee - which cream did you use? And would you mind saying what problems you're struggling with Tamoxifen?

And Cosmic - what dietary changes have you made?

FC

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Re: Is radiation therapy really necessary

Hi Oz you sound as though you are in exactly the same situation I am. I was diagnosed with high grade DCIS with 1mm microinvasion in Novemebr 2011. Oestrogen positive. Have had 2 lumpectomies (2nd to clear the margin on one side) and no spread to lymph. I have a fabulous lady surgeon and lady oncologist who are really on the ball and listened and advised me all along the way. It does really appear that radiotherapy does reduce the risk of local recurrence and for me (I am science trained) the risk of recurrence of cancer far outweighs radiotherapy problems (due to the sophistication now of the machines and accuracy of the dose direction). With high grade DCIS I think that radiotherapy is a very wise move. I have several very recent papers on the issue which make very interesting reading. I have had 4 and half weeks of radiotherapy and finish at the end of next week. It is not easy but in my opinion helps me to feel that I really have made the right decision to knock this horror on the head as much as possible. I have also made some dietary changes which I feel give me more control. Best of luck to you and hope all goes well xx

Re: Is radiation therapy really necessary

I can really relate to this post, as when I was told I needed rads last year I really threw a wobbly and railed against the idea totally.

But I was told categorically that the current thinking is if you have a lumpectomy or WLE then rads is needed. I was diagnosed in November 2010 and had chemo to shrink the tumour, a WLE with clear margins, clear SNB, Herceptin and 20 rads. If you have a mx you can sometimes if the cancer is low grade enough get away without rads.

In the end I sailed through the treatment, only had slightly sore skin by the end. Slathered the cream on religiously so presume this helped.

Main annoyance for me was dragging myself to the clinic every day for the treatment. 3 hour round trip for a 5 min appointment.

My breast does feel slightly different to touch, a bit more sensitive and slightly harder, but in underwear you can't tell the difference. It seems to be getting softer the more time goes on, but not sure if that is my imagination.

With hindsight I would rather have radio again than the Tamoxifen I am struggling with at the moment.

Sam

Re: Is radiation therapy really necessary

Hi Oz - I'm on Day 4 of 30 sessions of RT. I've asked several people this same question several times, particularly given that I had a very low-malignancy cancer, there were virtually no cancerous cells found in the mass removed during my WLE (ie, most removed by the biopsy), and the lymph glands were clear.

While the surgery and radiotherapy consultants were mainly amazed that I'd questioned the protocol, they did their best to reassure me that research in various countries shows that RT does significantly reduce the chance of the cancer returning.

Well I'm still not convinced, and it's been very hard to let go of it all and just put myself in the hands of the medical profession. It was easier going for the operation, that process seemed very logical to me - you go there once, they remove the gremlin, you stay a couple of nights, you go home. But with RT I go in every weekday for six weeks for something I basically don't believe is the right thing for me (or maybe for anyone) and each time my lung and my heart (my heart!) are being radiated. With radiation.

HOWEVER, I also recognise that I'm statistically way more at risk of severe injury or death while I'm hurtling along the motorway to and from the hospital in my chunk of metal. Which really cheers me up every day, ha-ha!
So I'm just going with it now - and trying not to think too much about the possibility of ending up with a smaller, harder version of my right breast. To be honest, right now that plagues me more than the thought of lung or heart damage, but such is the society we live in, blah, blah, blah.

What do you think? Have you gathered any more information that's made you feel better? I'm doing that for Tamoxifen - I'm very worried about having to take a potentially depression-triggering drug for five years, so I'm looking for an alternative.

FC

Re: Is radiation therapy really necessary

I think there is quite a bit of research going on around this very point at the moment. Looking at things like whether it is really necessary in some cases, if that relates to the sub-types of bc, how much rads to give, etc.

But as I understand it, at the moment there just isn't enough information to make a firm statement on whether some people can "safely avoid" (as it was put at a presentation I saw) radiotherapy. Until all the studies have been analysed, most people who've had a WLE will be recommended to have radiotherapy.

Eliza

Re: Is radiation therapy really necessary

Hi oz

Having radiotherapy following wle reduces the risk of recurrence by 25%. Radiotherapy plus rads is equivalent to having a mastectomy.... But your oncologist should be able to tell you how the risks of or haing it relate to your specific situation.

Good luck

Re: Is radiation therapy really necessary

Dear Oz

Welcome to the forum. You could also give our Helpline a call for information and support. They are open from 9-5 on weekdays and 9-2 on Saturdays. Calls are free and confidential

Take care

Very best wishes

Janet
BCC Facilitator

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Is radiation therapy really necessary

Hello - this is my first post and would really appreciate your thoughts please.

Diagnosed with high grade DCIS with microinvasion. Have had wide local excision with clear margins and 4 nodes removed which were also clear.

Do you think that radiation therapy is really necessary if all clear?

Thanks