Radiotherapy Protocol 1 week vs 3 weeks

Going through breast cancer treatment Radiotherapy
1

Hello,

I’ve had a weird journey… 40 yo, noticed a small lump possibly in May last year but didn’t think much of it then I got a referral from the GP in July. Breast assessment unit missed it on the scan (if you can believe it doctor circled another lump and told me the one I had noticed was not to worry)… Anyways, end of October I had my diagnosis of Stage 1A - complete shock but I also realise how lucky I am it was actually found.

Further scans & delays and I finally had my lumpectomy and SLN early Jan (3 days ago). I know the next step would be Radiotherapy and the oncologist mentioned they are rolling out a new protocol since Covid over 1 week instead of 3 weeks.

Although it seems to have clear benefits (lower cost on the NHS, less travelling back & forth to the hospital, lower dose overall - 26Gy instead of 40Gy), I understand that each “fraction” has a higher dose and therefore there could be more nasty side-effects (boob firmness, skin…?). Note that I have small boobs - I am a 90B / 85C at best.

For this forum I have two questions:

  • Can anyone in a similar situation to mine that did either of the two protocols advise on side-effects?
  • Do you know if on the NHS or privately we are even given a choice between the two, or is it already mainstream to do it over 1 week?

I do have BUPA but I liked the NHS doctor better and felt better taken care of, although by now I am deeply frustrated with the long waiting times - for a disease where time is of the essence. So am considering if I have more flexibility privately as well in the London area.

Thanks again for reading this and for any advice on the above xx

1 Like
2

Hi there. I will follow with interest as in same boat! I am due to start 1 week in late Jan. I am going private but wasn’t given the choice about 1 or 3 weeks even then! The only reason I ended up going private was I had a freak out a few weeks back and wanted to speak to the oncologist (it was the same person on NHS or private but could have quick phone appointment sooner). My boobs are small and it might shrivel to nothing after this :grimacing: xxx

3

Hi blue80,

Thanks for following up. I looked at the study https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)30932-6/fulltext

These days I’m trying to read some of these articles although a lot goes over my head. And 26Gy over 1 week seems statistically promising, but I can’t tell whether it is the same for factors such as age, ER/PR status, tumour type etc. Results were published after about 6 years, and the 10 years deadline is soon, so hope the trend matches up.

Also, what I see is fewer local relapses but more distant ones. Whether the numbers are statistically relevant and if they would apply to me - again I do not know.

Interesting to know that you are doing RT privately. Is it through BUPA?

My oncologist doesn’t do private and the one I did see privately didn’t impress me as much. Wondering if once RT is clearly marked as the next step, do I still need to see an oncologist or could I in theory make an appointment with the Radiotherapist directly.

Thanks

4

Good question. I am with AXA. I would give BUPA a call and see what they say. AXA has a specialist cancer team so I suspect BUPA is the same. I am trying to just go with it at the moment as I was bamboozling myself with all of the different risk factors. I know that the oncologist felt that this was the best course of action for me and reassured me that everything would be ok…I am taking that leap of faith. Really not lookong forward to it but feel like I have dodged a bullet avoiding chemo. Who knows what the future will bring… xxx

5

True, that’s a wise way to look at things. This is a disease where it’s not possible to have 100% certainty over anything so yeah doing our best and having faith is likely the best approach.

6

I had Stage 1 Grade 1 as well, mine was in the right breast. Had lumpectomy in September 22 and the hyperfractionated rads in November 2022. Was very pleased to have it too as the amount of hanging around to get the doses was quite annoying. Once you’re in though, each dose is quick and painless. I had absolutely no skin breakdown, a slight “tan” for six months and some fatigue but most people get that under any of the regimes. I have not got a lumpy boob at the end of it but I am reasonably well-endowed. I was treated in West London and it seems very much the norm now particularly for those with very treatable histologies like mine and yours. That is my experience but would very much recommend you go down the path that makes you most comfortable and reassured. It’s important not to have any doubts about your treatment as you go forward. For me it was a) no chemo :ballot_box_with_check: b) 5 day rads :ballot_box_with_check: c) 5 years AI :ballot_box_with_check:

1 Like
7

Hi
This time last year I had 2 biopsies. 1 was ok other BC. It was a stage 1 grade 1. I had 5 days radiotherapy in April privately thro vitality. I was told that the practice was changed during Covid to 5 days and no differences were so far found. I was lucky not to have many skin issues from the doses and also had a break in the 5 days as they don’t do it over a weekend.

Hoping this may help your thinking? Take care and take the advice re care during and after the doses. We are all different.?

8

I had lumpectomy then 5 days radiation. I am 74 and lump was 11 mm.
I did have a very red hot boob ( right one ) and did get some peeling. 3 months on it is all healed but still a bit hard and lumpy where the core biopsy was done. 5 days is far better than 3 weeks.

2 Likes
9

I wasn’t in the same situation as you in terms of my cancer profile and surgery as I had a Mastectomy & decided to have Axillary surgery as I had a 1 positive lymph node (all other 24 removed were clear). I had chest wall RT in July last year (5 fractions 26G, according to Fast Forward Trial).

But thought I’d respond as I did do some research/reading about the two RT regimes (5 fractions -26G vs. 15 fractions -40G) from the Fast-Forward trial when I was making the decision on having RT; I also raised questions with my oncologist as he said the MDT didn’t recommend RT for my cancer profile + recurrence risk factors (but could offer it if I wanted) but said in certain other NHS trusts they were offering it as per NICE guidelines. I went for a second opinion to help make the decision. The second oncologist had a different view, explained that the 10 year data for Fast-Forward was not yet available (due out soon, not sure if it’s out now?), but said the 5 year data was comparable between the two regimes. He went into the long term risks with stat’s and short term risks with stat’s (& also PREDICT score overall survival %).

A lot of what treatment is offered is actually based on NICE guidelines.

My understanding is that it is very much an individual cancer profile based recommendation, the lower the recurrence risk factors the chances are 5 fractions (26G) would be offered.

I saw both clinical oncologists through workplace insurance (BUPA, who do have a dedicated line for cancer support & very helpful). You can actually search for & choose the oncologist you want to see using the online finder tool.

5 months on from finishing my 5 days of RT, the short term side-effects have been minimal, skin tightness increasing along the scar area is probably the key notable one (along with a skin tan that wasn’t visible initially). I continue to do my arm stretching exercises which help. During the first 2-3 weeks my skin was mildly irritated, no skin breakdown at all. I followed the skincare regime as instructed by the radiographers (who administer RT) throughout. Fatigue from RT itself was almost non-existent (just a few days after 2 weeks), though I have ongoing fatigue since my surgeries.

Regarding your question about seeing the Oncologist or Radiographer once you’ve made the decision to have RT, if you are being treated privately, the steps for me were: 1) Oncologists instructs treatment centre on the RT to offer, 2) The treatment centre contacts you to inform you that they will contact insurer for authorisation, 3) RT CT planning scan & RT sessions are scheduled, 4) Radiographers provide you information you need/answer questions you have during CT planning session, they administer RT and are the primary point of contact for any questions during treatment, 5) Oncologist saw me 2-3 weeks after completing RT to check how I was getting on & examine skin.

Hope some of the above helps, and wish you well with treatment whatever you decide is best for you. xx

2 Likes
10

Hi Irrrina,
I was in a very similar position to you a year ago. Grade1, Stage1, lumpectomy followed by 5 days 26Gy rads. I’m 34C so also relatively small. I had very little reaction to the rads, my skin went a little pink after the 5th session but that subsided within 24 hours. I can’t feel any difference in the breast itself one year on other than a bit of scar tissue from the op. I did get a bit of fatigue which didn’t kick in until a couple of weeks after the rads. My advice is to moisturise your skin as much as possible leading up to the rads (I don’t think you can put anything on your skin the day of the RT though) I then moisturised three times a day for a month or two & still moisturise every morning using E45 as recommended by the Oncologist.
I also read some articles about the effectiveness of 5 vs 15 sessions but like others wasn’t given an option by NHS.
Best of luck x

11

Thank you so much to all of you for the very useful feedback and sharing your experiences. I think this all sounds reasonable, but it looks like there may be another couple of months from surgery until actually starting RT on the NHS - between wound healing, CTs and other appointments. Is that fair to assume?

If any of you were also recommended tamoxifen, did you start it soon after surgery or did you have to complete RT before starting it?

Thanks again!

12

I had the one week of RT last April. I had no skin breakdown, the sessions were short and well run. I had a very tanned boob but after 2 months developed fibrosis … two very hard lumps … and lymphoedema in my breast. It’s not bad, a bit painful at times

13

Hi @Dolly_dreams

I don’t know if this is helpful but at my BC support group last month there was one lady who was having trouble with Lymphoedema in the breast and a hard lumpy scar who was getting good results from scar massage . She said that her breast had gone from feeling hard and lumpy to a soft normal texture and was less swollen . She was paying to see an independent therapist but it was one who was prepared to liase with her BC team .
Perhaps there might be someone in your area that could help ?

Joanne

14

Hi there. I started tamoxifen about 3 weeks after my op. Both the surgeon and oncologist were keen I start taking it as soon as I felt well enough and no reason to delay til after RT. I have heard some have done otherwise but I was reassured there was no reason to delay so have just cracked on x

15

Hello Irrrina

I had stage 1A cancer back in October 2020 with lumpectomy in December at the height of covid and then had five days of radiotherapy in February 2021. I had a lot of exhaustion from the radiotherapy but apart from a little redness of the breasts and a bit of itching no real side effects from the radiotherapy. I was advised to use emollient on the breasts beforehand such as Double Base and also aloe vera which if put in the fridge can help to cool down the effects of radiotherapy afterwards.

16

Thank you for your feedback @AMWG, hope you’re doing well now :heart:

1 Like
17

Yes thank you, I take each day as it comes, and I wish you all the best on your journey

1 Like