Hello everyone,
I am new here.
I was diagnosed with DCIS in September and had a lumpectomy on 23rd November. I have been experiencing pain and discomfort every day since the operation and have been taking painkillers every day since, but reassured this is normal and part of the healing process.
I was referred to oncology for further treatment, the consultant has suggested radiotherapy, however I am worried about the side effects, especially as one of them can be the type of pain and discomfort I am already experiencing.
I have also done some research online and a study in America in older women, ( I am 66) radiotherapy does not seem to benefit that much?
Would really like to hear from others as I don’t know what to do for the best.
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Hello Suki,
I am dipping in and out of different threads, so I’m sorry everyone if I’m in more than one conversation/repeating myself. in a post I wrote this evening I wondered what advice or experience others have of radiotherapy after a lumpectomy.
I had a lumpectomy just over a week ago, my pain has been manageable with paracemol for a couple of days. I am wearing a sports type, front zip bra and have a few of them, so that I can wear at night aswell. I have slept on my back since the procedure and I am sleeping on the side of the bed which allows me to push up on the opposite arm, just things trying to reduce agrevating the lumpectomy-side.
As far as I know, there’s something called the Van Nuys Index which the radiotherapist will use to to decide whether radiotherapy is given.
My surgeon said, if I do have radiotherapy it will be for five days and that I would be very tired for at least three weeks. The breast will look and feel like it has been sunburned badly, that it will be swollen and tender.
Like you, it will be good to hear from others who have already been through radiotherapy.
I hope that your current pain subsides soon 
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Hello funnygirl,
Thanks for your message.
I have been wearing a sports type bra 24/7 for five weeks now and I take paracetamol/ibuprofen every day, hoping the pain will settle down soon. Also thank you for letting me know about the Van Nuys Index, it sounds interesting.
Hi, I am new to the forum but was diagnosed with IDC stage 2, grade 3 with 2 involved lymph nodes in Jan 2023. I had radiotherapy in August and I found it the easiest part of my treatment. The worst bit was the 25mile journey and finding a space in the hospital carpark🥴. I moisturised my breast before leaving the unit and didn’t have any skin discomfort. I was a little tired but I had finished 6 rounds of chemo 4 weeks previously. Four months post radiotherapy my radiated breast feels slightly firmer and I have had mild discomfort. I had 5 fractions which I believe is often the standard regime presently prescribed. Wishing you both well
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I, too, are approximate same age at 65 and had had a masectomy. I had 15 fractions of radiotherapy and never had any pain. I had radiotherapy on my chest wall, axilla and neck.
I had a itchy rash like heat rash which didnt last too long and a slight open wound under armpit (caused by friction) which i got activheal cream from radiotherapy dept which worked wonders for and apart from that all was ok.
Dont forget every post will give you the worse case scenario but of course its a personal decision. I just wanted to believe i have done everything possible to prevent any reoccurrence
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Thank you for your message
Thanks Teresa, it’s useful to hear others experience
I had just turned 67 when I had 5 days of radiotherapy after surgery. My tumour had been taken out of the upper, outer quadrant of the right breast. I found rads to be easy, the actual application of radiotherapy took about 30-45 seconds each time I’d say. The majority of the time is taken on lining you up. I had no skin breakdown at all but went a bit suntanned for around 6 months. Moisturising and hydration are exceptionally important. I did get fatigue about 6 weeks after which lasted a while but I was also getting used to Letrozole at the same time. It’s been 14 months since rads and I haven’t noticed much change in the boob but I’m a 36GG so quite big. You do get occasional twinges but that’s just nerves healing. I was happy to do it to zap any stray cancer cells lurking about.
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Thank you for your reply Tigress.
My main concern about radiotherapy is my treatment would be on the left side, I have been told about the breath holding technique so your heart is less affected, but it is still a worry.
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Hi @suki
My surgery and radiotherapy was on the right but I did have info. from my radiotherapy Dept. to say that although breath holding is best there are other ways of managing if people can’t do it. In with the info was a video of a patient demonstrating the breath hold technique so that you could practice learning it. I think they must send it to everyone but at the time I thought they might want me to do it so I started practicing and I’m pretty sure I would have got the hang of it by the time the treatment started .
I had some fatigue that was bad for about 10 days then intermittent for a few weeks after that .My breast was very pink and hot for a while with some swelling but some of the swelling was due to another problem I think. At the time I didn’t think much of it - just got on with it .
I moisturised really intensively and did all the arm exercises - my skin never broke down and aside from a bit of periodic itching between my breasts and under that armpit ( even that has settled down ) there have been no lasting effects . Aside from the changes due to surgery my right boob now looks the same as my left one. If I was asked to have it again I would . The treatment wasn’t painful at all and the staff were lovely .
I ended up abandoning the endocrine therapy due to side effects and a low risk / benefit ratio so I’m glad I went through with radiotherapy at least . Radiotherapy lasted 5 days and I now have no side effects from it. Endocrine therapy was going to be 5 years and although many women do not get much in the way of side effects I was getting plenty I was told that radiotherapy cut the risk of local recurrence by 50% however I’m 58 so a bit younger than you.
Maybe see if you can tie them to % benefit for you . You are thinking of yourself as an older woman but in the healthcare world I’d say you are still relatively young . I haven’t read that study but make sure it isn’t just one study with those results and that it actually applies to you if you’re considering basing your decision on it.
Take care
Joanne x
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Hi Suki
I had a lumpectomy and removal of 3 sentinel lymph nodes in 2019. I am 66 now.
We all feel pain in different ways and to different degrees. You’ve had major surgery, I felt like I’d been hit by a bus, post surgery!
If you’re still in what you feel is too much pain, speak to your breast care nurse again. We all need reassurance at a time like this.
I had radiotherapy for 15 days. It was very straightforward, the team were so good and caring, and it was actually a very positive experience. I felt very much looked after. I was given cream to massage in and my skin was fine, just a bit darker for a while. I even had back massage for relaxation, and counselling, provided by the team.
I still massage my arm each day to help prevent lymphoedema. But it’s no big deal.
I felt reassured by the radiotherapy, that it would zap any cancer cells that might have been missed. My GP was very helpful in explaining treatment too.
My advice would be to get as much info as you can in order to make an informed decision, then make your choice. And if you’re not happy about the level of pain you’re experiencing, go back and talk to the professionals. Keep asking until you’re satisfied. That’s what they’re for and they’ll understand your need for reassurance.
Let us know how things go. 
Xx
Thanks Joanne, it is so helpful to hear others experiences.
Thank you so much.
Everyone on this forum has been so kind and helpful. Whilst family and friends can listen to us, I feel it is only people who have experienced having breast cancer that truly understand what we are going through!
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Hi I’m 61 , had 5 sessions of radiotherapy, after a lumpectomy and local flap reconstruction. Radiotherapy was fine , mine was on left but I didn’t have to do any breathing techniques. It only takes a few minutes. I did has some tiredness that kicked in but it was intermittent and went after a few weeks . It’s very do able for f you think it Will benefit you . Good luck
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I can only say that I found my 19 sessions of radiotherapy very easy. Yes, you do get tired but in my case it was probably driving an hour each way. No burning or dryness at all. Chemo damaged my heart so I had to do the holding my breath thing but I practised at home and it was easy. So, no trouble at all and I think the gain is worthwhile. Paradoxically I abandoned Letrozole as it reduced me to invalid status and quality of life for me is more important than longevity.
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Mirrors my experience. I think radiotherapy is more valuable than pharma prevention
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I had a lumpectony and removal of sentinel node. The surgeon said traces were found in the node so had a full axillary clearance, this was more painful and slower to heal than the lumpectomy and I also had a worrying infection under my arm and cellulitis in my breast. I’m fine now but have decided to stop anastrozole. I couldn’t function at all and joints and muscles were really painful. im due to start radiotherapy on Wednesday and still cant decide whether to go ahead. These comments however have been really helpful. Has anyone just stopped treatment after surgery? I wish i could find information on outcomes.
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Hi moonbeam,
Thank you for your reply and so sorry to hear about your recovery. I am still in two minds myself, more so now as I have been getting swelling at the end of the day in the affected left breast. The breast cancer nurses think it is just part of the recovery process, but like you because of my recovery from the lumpectomy I am not sure about having further treatment.
Please let me know if you find any information on outcomes, I have seen a lot online but depends on your age, the grade etc
Although they don’t recommend it there are some women who are continuing to take AIs but on their own terms and are being allowed to do so because it is thought that any endocrine therapy is better than none. I had a full discussion with a BCN about this a couple of weeks ago - she knows of people taking Exemestane on alternate days and one woman taking Anastrozole twice a week .
Some of the threads suggest that taking it for anywhere between 4 months to 2 years depending on individual Oncologists opinion - is worth doing. I wish I had known this to begin with - I did manage 4 and a 1/2 months and might have been able to go a little longer with that information.
When you are having side effects and are just told that it’s 5 or 10 years it feels like a life sentence particularly in context of what you have been through already.
I know Anastrozole has recently been approved as a preventative drug for women who are at high risk of developing certain kinds of BC . It will be interesting to see how many of them tolerate it and for how long .
Joanne
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Can’t make this decision for you sweetheart and I’m so sorry that you are struggling . All I can say is that I’m glad that I did radio as like you I stopped the endocrine therapy . The Oncologist was quite philosophical ( though not pleased ) when I said I didn’t think I would manage 5 years on endocrine but she obviously felt it was much more important for me to have radio .
The radiotherapy staff are good at dealing with people who are nervous and scared . I was so nervous I turned up a day early for my for my first appointment - and apparently I was the second one that day !
If you go ahead they will also monitor your skin throughout the treatment and advise you of what / what not to use. I found the staff to be lovely.
There have been others who refused treatment from reading other threads but I’ve no idea how they have got on / felt about it afterwards.
Take care
Joanne x
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