Benefits vs risk of radiotherapy

[Marla13]

Hi Jill-thank you so much for your message. I needed this today:). I am a coffee drinker so I do need to make sure I'm drinking one glass of water for each cup of coffee. I'm doing the countdown...today is Day 4 of 20...I can't friggin wait till Day 20 of 20:). I hope you are doing very *well* at this time? Thank you so much for your inspirational message. 

xxxx

[Jill1998]

Hi ladies ,good luck with your radiotherapy .Just a couple of things that may help - I was told the main cause of fatigue during radiotherapy was dehydration and once I increased my fluids I found that I felt a lot better .After the first 3 or 4 sessions they get a lot quicker at positioning you so it is over much more quickly - they did explain why but I can't remember why exactly !! I've was also told  that the machine cuts out automatically if you move out of position which was my fear - the same principle applies to managing the breathing .Every day is one less .All the best Jill .x

[Marla13]

Hi Shana,

Thanks very much for your message. It's comforting to know that you (someone)! understands the pain involved in rotator cuff problems. The actual process seems a little easier now that my sessions tend to be 1/2 the time they were at Session 1. After Session 1 I honestly didn't think I'd be able to carry on. I have had the tattoos, and they are helping them do their job I'm sure of that. The problem isn't that they are taking long to position me-it was really re-my first session...it just seemed to take forever to get the breath right and therefore the treatment session was prolonged. I think my breath technique was better in sessions 2 & 3 which obviously means the session will go smoother. The thought of my own breathing being so significant really does scare me. I am still not convinced that by taking a deep breath in, I am moving my heart/lungs out of the way such that they are being protected from the radiation. It just seems so unbelievable. The biggest fear for me re-rads was that it *is* my left side & I was petrified of having long term heart/lung problems. This is my biggest fear. And so to think that my own breathing will determine my lung/heart fate worries me-though the team *have* reassured me, on more than one occasion, that if I don't do it properly, the machine won't allow them to radiate. That makes me feel much better:). I hope you are doing well Shana and I really appreciate you getting back in touch. I'm sure that once you finish treatment, you want and need a break from talking about/thinking about, the entire journey. I somehow suspect that my emotional processing will take place after my rads are over, because, till now, I've really just "powered through". I hope you have a lovely Monday and a good week ahead. xxxx    

[Shana72]

Hi Marla,

So sorry to hear you've had a tough time starting your radiotherapy treatment. My mum has had rotator cuff surgery and I really know how painful it is.

How are the treatment sessions going now? Have they got any easier?

I was treated on my right side so didn't have to hold my breath, but can imagine it isn't easy at all. Getting the right position during treatment seemed to take longer than the treatment itself, my team were really quick at setting up, with all sorts of measurements and numbers spoken out loud to one another, so when I lay on the bed, there was only a few occasions where they needed to nudge me up/down/left/right.

Have you had to have some sort of tattoos marked on you to help them with positioning? I haven't needed these, apparently not with the radiation method used with me. Just wondering if that makes a difference in setting up time.

I do hope your sessions got easier, take care,

Shana xxx

[Marla13]

Hi Sam-I'm back:). I echo your feelings re-the fatigue. Though I don't have chemo to compare it to (I didn't need chemo), but like you, I expected the fatigue to come on much later in the rads process and not within the first three sessions. I like to know everything & I'm keen to know *why* we are so tired from radiotherapy. I went for a run today-I'm not a runner:), but when I'm "into it" I like to do one run on the week-end and one during the week. I only managed under 2 miles today, with my face mask on-that made it much harder...I missed getting the fresh air but I'm determined to not get COVID again (I had it-tested positive-don't want it again:). And until an antibody test is available, I won't trust anyone saying "you can't get it twice". 🙄 I've decided that during my radiotherapy I'm going to be extra good at self-care. I had two lumpectomies and returned to work two weeks after the first one, and one week after the second one but since my diagnosis in Aug 2018 I haven't really slowed down & I'm really feeling the effects now. I am convinced it's the radiotherapy as opposed to anything else. I hope you cope OK with the rest of your treatment and hope that you will also be kind to yourself and not push yourself too hard. 

I'm also pleased for you that your chemo experience was more + than your radiotherapy. I think the radiotherapy feels very lonely-they leave you in the room to radiate you, whereas with chemo...you can have company-correct? Let's keep the thread going & update one another through the process. 

I've had 3 sessions so far (of 20) and the other side effect I'm noticing is a slight tingling in my chest-not the breast area...but above the breast-where you'd feel it if you had a chest infection. It's all bizarre because aside from the initial consultation with the radiotherapy consultant, they don't really explain which side effects you're likely to experience when. I'd like a timeline so I can be more prepared:). 

Good luck this week and let's hope it goes as well as it can for both of us.

xxx

[Marla13]

Hi Sam-thank you for such a lovely and validating reply! I'm actually just about to get ready for my walk (possible run) before I konk out completely:)...I just wanted to acknowledge your post & I promise to write more either later or in the AM! It wasn't clear from your post whether you are "across the pond" or not? I take it from your Queen reference you are UK based but I wasn't entirely sure:).

I'll be back later or in the AM....depends on my fatigue levels.

Best wishes....

Marla

xx

[yorkshire_defector]

Marla
Hi, thought I'd drop you a note having read your posts below, its really great that you've provided the reading info ( I hadn't read the NICE guidelines - some new news in there for me!) and reached out across the pond for useful info.
It sounds like you may have (??) sorted the arm situation which must be a great relief for you - as well as the radiologists (!!) who sounded like they were getting almost annoyed with you - which is pants in itself I hasten to add.
I'm also undergoing radiotherapy at the moment and have to say I actually prefer chemo so far (odd I know), rads sessions are really quite dull (chemo sessions for me were very social & entertaining) and although Friday was only day 2 (of 16) I feel I have significantly reduced energy already. I was expecting to be tired/fatigued but much further on in the treatment, from 5pm onwards all I do is yawn and am quite active and my (short) bike ride this morning was far too much effort...I had hoped to remain relatively active as I did during chemo & post surgery, think I still can but its going to be challenging if the start is anything to go by.
I think that on top of still having discomfort/pain post surgery as well as the unwelcome side effects of hormone tablets, the impact of rads is another layer of annoyance for me and I thank heavens that I had chemo at the beginning, my views on that may be quite different if I was having it after radiotherapy (not sure if that actually happens but hopefully you get my point).
I also concur with your views re the strategy of the cancer teams in that they do place longevity over quality of life, and for some that's fine and I suppose its their mission to keep us alive. I had to challenge my BC support team on several occasions as my priority is definitely quality of life, not bothered about that telegram from the queen! (Though do want to take full advantage for a short time of that pension...). I think its beholden on us all to not take what we're told or asked to do during treatment at face value and if we think appropriate to question why and what's in it for me given my priorities in life.
And I also don't know why rads makes us so bl00dy knackered! From what I've read I'm not sure if there's a specific medical reason why, and as with all these cancer treatments it affects people differently.

Good luck with rest of your treatments.

Sam

[Marla13]

Just an update on my previous post! Sessions 2 & 3 were shorter (1/2 the time)-thank god. My shoulder was still not happy but the shorter duration meant it was tolerable. I must say-I'm not loving the radiotherapy...I have never felt so *drained* in my life and don't understand why. It's not the drive there & back-I'm used to driving long distances & my drive is only 35 mins. there & 45 back. It's definitely treatment-related but I haven't read any evidence/info that explains *why* radiotherapy makes one feel so tired. Does anyone happen to know? I'm Day 3 of 20 and can only imagine how I'll feel by the end of it all if the effects are cumulative. 
xxx

[Marla13]

Hi Shana-I hope you continue to do well and are not suffering too much from side effects?

Well-I had my first treatment yesterday, and 45 mins. later (I was on the "bed" for 45 mins)-my shoulders were not happy. I already have a "problem shoulder"-rotator cuff problems and previous calcific tentonitis that was temporarily "cured" via an ultrasound-guided cortisone shot (2017)...but there are certain positions I cannot comfortably put my shoulder/arm in and over my head is one of them. They had to stop treatment 2/3 through because my arm/shoulder was in such pain-not discomfort, but pain....spasming, etc. My pain threshold is normally very good but this was not tolerable for any longer. I honestly don't know what I am going to do for the next 19 days! I'm not allowed taking anti-inflammatories because I have high blood pressure, so all I can take is paracetamol which they suggested I take b4 my appt. today. I will do that but I honestly don't like the thought of taking *anything*. I just hope it helps. I felt slightly patronised when the radiotherapist asked me "have you been practising your arm exercises" because truth be told a) I am not allowed to do certain exercises-they will aggravate my already bad shoulder and b) those exercises *do not* make it any easier to stay in that position for 45 mins. I had read that the "lining me up" takes much longer than the actual treatment but I swear I was on that bed for 45 mins! I had to do the breath-hold, and I think I must not have been doing too well because I could tell when they were radiating me and when they weren't...."OK you can exhale now" (without having heard the machine). They kept saying "you're doing so well" but I know in my heart of hearts I wasn't and I have a feeling that's why I was on the bed for so long. I was in tears on my way home, in tears in the shower, in tears watching TV last night. I had been so strong, brave and OK throughout my two surgeries but this was totally different. I don't like it one bit. Any tips re-the shoulder? I emailed the senior radiotherapist last night to ask if I can use a cushion. He had said at my planning appt that if I can't manage the breath hold they have "a few tricks"-his words, not mine. I am eager to hear what they are because I will not manage 45 mins. for the next 19 days. My shoulders and protecting *them* are as important as this treatment if not more, because the pain associated with rotator cuff problems and frozen shoulder is worse than dental pain and I am not prepared to regress in this area (shoulder) for the sake of the radiotherapy. It's just not going to happen. I'll take my chances and risk recurrence. I am not OK with the cancer field's thinking where the priority is to rid of the cancer *at any cost* which has been the implicit (and on occasion explicit) message I've received all along. Sorry-but that ain't going to happen. I need my shoulders to dress myself, to do my hair, to write, to type, to cook, etc. I've just about had it with the "put up with it" attitude that they all seem to have. Sorry for the rant-as I type what happened yesterday by anger and frustration is all coming back:). 😠😥 I feel very much anger and sadness because I was looking forward to the treatment (as it signifies the end of my treatment journey) and had thought the side effects would be the worst part of it-but the positioning, and the *duration* that I need to be in the position...is absolutely more than my poor shoulders can handle. xxx  

[Marla13]

Shana-you are a star! I'm so very happy for you that you're all done. A huge congratulations! It's reassuring to hear you didn't experience much fatigue-that's one of the symptoms I'm most concerned about because I'm already starting with low levels of energy:). I, too, plan to drive myself to and from cause I don't want to take public transport. 

I'm so happy for you-truly! Is this the end of the treatment road for you? 

Best wishes,

Marla

xxx 

[Shana72]

Hi Marla,

Good luck with the start of your radiotherapy.

I've finally finished all mine, Wednesday was my last one. All went fine, I didn't notice any side effects until last weekend when my skin started off looking slightly tanned and also had some pain when sleeping on that side.

Fast forward a week and I do have a lot more skin darkening and can feel the same/similar pains I felt after surgery. This is all normal I was told, the pains due to the treatment disrupting the post-surgery healing that was going on.

I haven't felt any of the tiredness/fatigue and I managed to drive myself to and from the sessions.

Good luck with yours, if I can help you with anything please just ask.

Take care,

Shana

[Marla13]

Hi Shana,

My turn to apologise for the late reply. Well done to you for making a decision, and guess what? I'm due to start mine next week (though have a couple of concerns I'm hoping I can resolve before then). I may post here (I just replied to another thread with my concerns). I'm exhausted at the moment so am going to log off in a moment but I'd love to hear how you are doing with your treatment. I hope you are coping just fine with minimal side effects, etc. 

Sending you lots of hugs...

xx

[Shana72]

Hi Marla13,

Sorry for not replying earlier, it took a while to come to a decision.  I decided to go ahead with the Radiotherapy (started yesterday). Hopefully I manage to get through the treatment without CV19 affecting it.

Thanks for your link, I did read through it at the time and found it interesting and useful. Now for the next decision.. Tamoxifen or no Tamoxifen!?!?

Thanks everyone for your responses, really helpful.

Shana72

[Marla13]

Hi again:). I emailed a relative who happens to be an oncologist-presented him with my "stats" (tumour grade, type, node involvement, & other relevant data) and my Q. to him was "if I was *your* patient, or your wife/daughters were asking you this...what would you advise"? His answer? Go for the radiotherapy. He is US based, and though I sent him our NICE guidelines, he said:

"Radiation post lumpectomy remains the standard of care in the US.  There are some data for women over 70 and very small tumors suggesting they might safely omit radiation but for somebody who starts out with a large tumor you should strongly consider radiation.  Yes, mastectomy is typically recommended if you have an in breast recurrence post lumpectomy and radiation but you would rather not have a recurrence where you would sort of be starting all over again. In breast recurrence also increases the potential for systemic recurrence. You have had a great response and I would cement your response with radiation.  You don’t want to have a recurrence.  And likely longer versus shorter term letrozole (10 vs 5 years) carefully monitoring bone density". A lovely man, and he has helped me feel more confident in opting *for* the radiotherapy. Shana, I hope my posts may have helped you somewhat too. 

xxx

[Marla13]

Shana,

Just to add (cause I'm also having concerns about radiotherapy)....I did some digging and stumbled upon the NICE Guidelines, specifically:

https://www.nice.org.uk/guidance/ng101/chapter/Recommendations#radiotherapy

Table 5 provides data on survival with vs. without radiotherapy. I find it interesting because the way the data is presented can impact how one interprets the data, i.e., my surgeon told me that recurrence is 40% likely without radiotherapy, versus single digits *with*-but having looked at Table 5....even without radiotherapy, only 50/1000 will get it again....that is 5% if I'm not mistaken, as compared to 1% (10/1000) who *have* radiotherapy. I need to meet with my own radiotherapy oncologist to discuss this because I *thought* I *was* considered low risk of recurrence, with a low oncotype score and low ki67 status, however, I did have 1 of 2 + nodes, and my original tumour size was 52 mm & they use tumour size as a predictor/deciding factor in all treatments (to do or not to do). It's really important that *you* and *I* and other women feel comfortable with their own decision. Had I followed the NICE guidelines from the get-go, I'd have had a mastectomy (that was what they recommended for my lobular tumour) however, I opted not to have a mastectomy, and to see how I go on Letrozole, and the Letrozole shrank the cancer enough such that I was eligible for a lumectomy. First lumectomy did not get all clear margins, but we went for a 2nd one, and surgeon did get all clear margins, and so whilst I'm liking the look of the NICE guidelines as per the radiotherapy numbers, etc. I *do* wonder why it is being strongly recommended in my case, and I really need to know. Yes, 40% recurrence sounds high, as compared to single digit recurrence, but when you think of it this way: 50/1000 as compared to 10/1000 I am more inclined to take my chances & hope I am not 1/50. Also, the advantage (I suppose) in *not* having radiotherapy now, is that if god forbid I did have a recurrence, I could possibly have another lumpectomy, whilst based on your post, that would not be an option if I/we have radiotherapy...it would have to be a mastectomy. It's a difficult one. I'd be interested in knowing what you decide in the end, and I will of course keep you updated on my own decision too.

xxx

[Marla13]

Hi Shana,

I was browsing the radiotherapy heading and found your message...I relate to what you've been through as I've just had *my* second lumpectomy-clear margins and radiotherapy has been recommended to me by my surgeon. Can I ask you...*who* has suggested to you that you may want to consider *not* having radiotherapy? Is it someone on your breast cancer team or a non medical professional? "I did my own research on risks/benefits and I actually wondered the same, i.e., do I *need* radiotherapy? My oncotype score was low (1) and my ki-67 status is also low (1) yet they are recommending it for me because of the size of my original tumour-52 mm. Apparently, the risk of recurrence without radiotherapy is 40%, and with radiotherapy it's in the "single digits" according to my surgeon. I was diagnosed with Grade 2 Invasive Lobular Carcinoma.   

I'm also wondering re: "If I have my radio now, if it does recur I would have to have a mastectomy". None of my team have informed me of this...is this standard? That (another) lumpectomy cannot be performed on a breast that has had radiotherapy? If this is true...I would have liked to have been told this by my team. I have yet to meet with the radiotherapy doctor to consent to the treatment-I wonder if he is planning on mentioning that to me then. 

xx

[Shi]

Hi shana72 ❤️ From your reply you sound like you’ve been doing some very good weighing up on your own ❤️ Your bcn will be able to discuss with you and then leave decisions to you. Have you tried the someone like me option on here and also ask the nurse on here, might give you some more assistance with your decision ❤️ You will do what’s right for you ❤️It’s your journey and you are doing amazing ❤️ I found rads a doddle, you just have to pace yourself, slap the cream on the skin and get air to skin as much as possible as you can start to sizzle a bit like 🥓, keep hydrated and sleep when your body tells you to if you do choose to have rads now. Get your questions ready for your bcn and do use the ones I’ve suggested, they will be able to advise of any other questions you need to ask ❤️💕💕✨✨Shi xx

[Shana72]

Hi Shi, thanks for your reply. My head is full of numbers...risk reduced from 20% to 10% with radio, then down to 5% with tamoxifen...BUT apparently I'm low risk with my DCIS measuring 1cm and consisting of low, intermediate and high grade type. If I have no radio now, I live with the 20% risk of recurrence and can attack with lumpectomy and radio if it does recur. If I have my radio now, if it does recur I would have to have a mastectomy. I will take your advice and talk to my BCN. Thank you...and hope all is going well for you ☺️ Shana72 xx

[Shi]

Hi Shana72, I had to have chemo and rads and pushed for the 15 rads and 5 boosters too so as much that could be done was done, I know it’s different circumstances to that you are in but wanted to post because for me I wanted the kitchen sink throwing at it. Have you discussed with your bcn, they might be able to offer some more ways of looking at it and weighing things up before you make your decision. ❤️ 💕💕✨✨Shi xx

[ZoeK_BCN]

Hello Shana72,

Thank you for your post.

I am sorry you haven't had a response yet. I am hopping my post will help our members to find it and offer their advice or even share their experiences.

If you would like to talk about any concerns or worries you can get in touch with our breast care nurses on 0808 800 6000. They are available from Monday - Friday 9am - 4pm and Saturdays 9am - 1pm.

Sending you our warmest wishes,

Zoe

[Shana72]

Hi,

After a successful 2nd lumpectomy with clear margins (following DCIS diagnosis), it has been suggested that I may want to consider 'not' having radiotherapy as it may be of little benefit to me in terms of reducing the risk of reoccurrence. Up until this point I was told that I would definitely need radiotherapy.

Meeting with an oncologist soon to discuss further. Has anyone else been in this position too?

Thanks in advance,

Shana72