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Is Radiotherapy really necessary?

15 REPLIES 15
Chick1
Member

Re: Is Radiotherapy really necessary?

Hello Skylark,

 

Yes, I feel like taking them off and running barefoot to the hills most days - only thing is can't run at the moment as still have a back/leg problem since March and the bleeding breathing has never got back to it's pre-treatment level (I noticed it going downhill during chemo in Dec 16).  Now if I could return to my pre-treatment activity levels - Oh the joys and what a step forward that would be.

 

Hope the planning went well and hope you sail through the radio treatment with no issues. 

 

Take care Skylark x

 

 

ladybowler
Community Champion

Re: Is Radiotherapy really necessary?

Skylark_er

 

Hiya following on from Jo's post.  I too had rads, my oncologist said that it was belts and braces.  I had 20 sessions 15 regular and 5 boosters.

 

I notice that you are starting yours in July, I have just started a thread on here July 2018 Radiotherapy, if you want to have a look I am sure that there will be ladies who have started and continuing their rads into July and also ladies who are starting in July on there, as well as us lot, who will be able to give you support and hopefully answer any questions regarding rads for you.

 

If you click on this linkk it will take you straight to it

 

https://forum.breastcancercare.org.uk/t5/Radiotherapy/July-2018-Radiotherapy/m-p/1223797#M32963

 

Helena

Skylark_er
Member

Re: Is Radiotherapy really necessary?

Hi Jobey68, thanks for taking the time to reply and good to know that most have left the forum and are doing ok. I’m glad it all went well for you but sorry to hear about the Tamoxifen xx
Skylark_er
Member

Re: Is Radiotherapy really necessary?

Hello Chick1, thank you so much for this, I really appreciate all your comments. I’m going with it although still hate the idea. Scared if you do and scared if you don’t is right! In your shoes I would have done the same. In mine.... feel like taking them off and running barefoot to the hills! In reality, the scan was delayed due to a mix up so I gained some more thinking time and today am just heading off for the planning scan. The risk of recurrence in the bone in invasive types won out. How are you doing? How are your lungs? Thinking of you xxx
Chick1
Member

Re: Is Radiotherapy really necessary?

Hello again Skylark,

 

Yes all this info can get confusing. 

 

Just a note on the Predict Calculator, (I see the new one gives us odds on surviving 15 years and has bishphosphonate treatment factored in).  Bear in mind, Predict is concerned with treatments and effects on breast cancer survival rates  and not recurrence rates.

 

i don't know about you but I find percentages are only useful when you have the full info.  When they quote "20%" without rads, then it depends if they are  talking about 20% of people with your tumour type and characteristics.  However, if they are just quoting for 20% of all women who have lumpectomies (I am assuming you have had lumpectomy) then it is possible your odds could be lower due to the tumour characteristics you have stated.

 

So it all depends on who this 20% is!!  Maybe that is something you could clarify with whoever gave you this information. If  you are not comfortable or clear with the reasons for radio and how it may specifically affect you, then ask for a second consultation.

 

Radiotherapy is almost always recommended with lumpectomy.  I think this is one of the reasons that has brought it to the same level as mastectomy treatment in terms of recurrence etc.  For what is it worth, if I had had a lumpectomy then I would have just accepted radiotherapy as part of the package.

 

I was originally due to have lumpectomy after chemo but, to cut a long story short, ended up having a mastectomy instead.  There was no  evidence of vascular or node involvement before or after chemo.  There was no tumour left after chemo (i.e. total pathological response to the chemo)  and there were very clear margins. As there was chemo beforehand, the true original  tumour size could not be determined so they had to go off assumed sizes from previous mammograms and utlrasound which varied greatly!

 

When Onco (Radiology) recommended Radiotherapy as well, I thought they had got me mixed up with someone else!!  I delayed radio and asked for a second opinion.  I was told 40% chance of recurrence without radio and 6% with.  However, this 40% figure was generalised and not individualised for my particular scenario.  It  seemed ridiculous considering I had chemo with total response, surgery, on herceptin and anastrazole, and after all that they were telling me 40%!!

 

One of my main concerns was lung damage.  When you have issues already, a possible 10% loss of lung function is a significant amount.  My breathing had also been affected by other treatments and had gone downhill since starting chemo.  I was also fed up with having treatment to be honest as already before having radio, it had nearly been a year since my first breast clinic visit.  There was also the fact that should I get a local recurrence, I would  not be  able to have radiotherapy again if it is in the same place.  I felt in a scared if I do and scared if I don't positon.  The scared if I don't won!!

 

Regards and best wishes to you X

 

 

Jobey68
Member

Re: Is Radiotherapy really necessary?

Hi Skylark, this is an old thread and not sure these ladies other than Charys are still around the forum at the minute. 

From my experience radiotherapy is a very good belts and braces treatment with little or no side effects for the majority of us unlike chemo , it's there to break down and zap the cells and hopefully catch anything minute that may have been left behind. I didn't question it at the time and was only too happy to have gotten off lightly in my eyes, it caused me no problems and other than a slightly lumpier and a tender boob it's left no lasting issues.

 

I gave up trying to understand the percentages surrounding it all and just went with the advice I was given and as it turns out I have had to stop taking Tamoxifen due to side effects so I'm very grateful I had the radiotherapy, it is of course absolutely your choice what you do but it's nothing to be afraid of and other than a bit of sunburn like heat the majority of us Don't  even know we've had it done. 

 

All the best with your decsion Xx 

Skylark_er
Member

Re: Is Radiotherapy really necessary?

Hi all, this is all very confusing! How are you all getting on? Mine is due to start on 9th July and I feel no clearer in my head about it. I was told 20% risk of recurrence without rads and 1-2% if I have it. I don’t know what that’s based on and can’t find any statistics to back it up. My tumour was 17mm grade 1, ER8 and no node involvement. The next Predict version will include radiotherapy apparently but not in time for us!
Bibi44
Member

Re: Is Radiotherapy really necessary?

Hi Lorac i fully understand why you are dithering, as I HATED the thought of radiotherapy & had to force myself to override all intuition to get on that table & go through with it.  I would base it on whether you are a high grade, HER+ & what your ki67 is (if they have told you). All those factors make recurrence more likely.  I agree with Ces that I can't see why we all have such dramatically different odds.  If yours are genuinely that low, I don't think I would have bothered.  Rights & wrongs of smoking aside, there is strong evidence that you need to stop for the 3 weeks of treatment.  There is evidence that smoking during treatment increases the risk of complications, in particular lung cancer.  Don't want to scare you, but they should tell u that anyway.  It is only relevant if you smoke during radiotherapy, not before or after, so don't worry about the smoking you've already done or will do in future, other than in the normal way of knowing it's not the greatest thing for us. xx

Cesrabbit
Member

Re: Is Radiotherapy really necessary?

I don't understand these odds. I had a grade one er8/pr8 is and Onc told me, without radiotherapy, I had a 25% chance of recurrence. So I had it. 15 sessions. I'm assuming with Anastrozole odds are now 3%. We seem to all be told different things but I suppose it depends on grade, size and receptors?
Snow Leopard
Member

Re: Is Radiotherapy really necessary?

Hi Jo, I'm in very similar situation. Cancer was removed with clear margins, no node involvement, was stage 1 and and only 5 mm in size. 

I have been told to have 15 sessions of rads (originally they said 20 but have reduced it). The oncologist told me that having the rads would reduce the chance of reoccurrence by 70%. I think that's very good odds. So I'm going for it (in fact going this morning for the scan a positioning pre rads). I think it's worth doing anything available to reduce the chance of it coming back. And also IF it did come back I might not be so lucky. It was found at early stage simply because I went for a routine mammagram...but what if it came back a couple of years before mammagram was due? It would have been found at later stage and maybe a big problem. 

Re smoking...this is said without and judgment at all as I was a smoker for more than 40 years...but 18 months ago I started using an e-cigarette and have not looked back. I gave up smoking in 2 days. Amazing as I had tried to give up countless times before. 

Hope rads go well for you if you decide to go for it,

All the best, 

Pat xx 

lorac170
Member

Re: Is Radiotherapy really necessary?

CHarys - really glad you're doing well with the treatment. Take on board all your comments & appreciate them. Best wishes, Carol
jky03
Member

Re: Is Radiotherapy really necessary?

Maybe you would benefit from phoning and having a chat with the nurses/advisors here Carol, or Macmillan...both excellent resources.
Charys
Community Champion

Re: Is Radiotherapy really necessary?

I guess it is about the risks and how large you feel they are to you. You say about being a smoker and having heart disease, but the heart is avoided in radiotherapy and any 'possible' lung fibrosis.....is a max of 10 percent on the side being treated ( if it does at all). This is only what my oncologist told me that I am repeating by the way. Also she said that a 10 percent loss of function in one lung wouldn't even be felt. I have to admit that I didn't think twice about radiotherapy, but certainly did about chemo, as side effects are less serious to my mind than chemo.

Just a thought.....and this isn't a criticism of you as a smoker ( as I used to for many years)  but if you aren't  concerned about smoking and the effects of that, especially as there is heart disease in the family, why concerned about something that is treating stray cancer cells ? What I mean is that surely the smoking risks and general ill health from that could be greater than the RT. As I say please don't take it as a negative point about your lifestyle choice, I am just saying it so that maybe you can see that you are concerned about something which will have less impact than the current smoking. 

I am into number 11 of the rt sessions now and am doing really well. Only 4 more to go of the whole breast ones and then 4 boosters. 

 

CHarys x

lorac170
Member

Re: Is Radiotherapy really necessary?

Thanks very much Jo for taking the time to reply. Have until 29th June to decide. Best wishes & take care, Carol x

jky03
Member

Re: Is Radiotherapy really necessary?

Hi...i had similar reservations...my onco said 4-6% chance recurrance with or 6-10% without...i had clear margins too,HER2 and ER+ and good response to neo adjuvant chemo, mammoplasty, but 8 month delay between surgery and Rads and only 9 Herceptin injs due to issues. My onco said all were guestimates as no real upto date studies to give exact %age benefits.

My surgeon was really keen.."if was me i would have it"...as i initially refused radiotherapy...to me negatives effects out weighed the benefits, but after further reflection i came to conclusion that i had to be comfy in my own head id done everything possible to prevent recurrence.

Its all belt and braces approach and no matter what we decide rest assured you'll be monitorred closely.

Wish you luck going forward and peace of mind with your decisions, whatever you choose.

Jo.

lorac170
Member

Is Radiotherapy really necessary?

Hi everyone, 

Find myself in a bit of a quandary & would appreciate any thoughts. Had left sided lumpectomy on 25/5/2016. Margins & lymph node biopsies came back clear. Have been advised now to have 15 radiotherapy treatments & to take Tamoxifen for 5 years. No problem re Tamoxifen but I just feel that 15 sessions is rather excessive. Oncologist ( very nice & explained everything) quoted 1-2% chance of recurrence with Radiotherapy and 4-6% without. The pros seemed to outnumber the cons, in my humble opinion. Plus I am a smoker & there is a history of heart disease in my family. Any advice/thoughts/opinions would be great - thanks