Radiation - Real Impacts & Coping with Side Effects

Going through breast cancer treatment Radiotherapy
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Let’s chat about the real impacts of radiation and coping with side effects. Please share your experience.

Prior to radiation, I was told I would experience fatigue and the skin would get darker. That sounded okay, but let’s talk about the real impacts on the body, and if it’s worth the preventative aspect that we are being told it has.

By the way, did you know there are different types of radiation and machines? I was not offered different options, nor did I know about the pros and cons of the different types of radiation. CRT, IMRT, SRG…

Some types don’t require tattoos. In my case, these were excruciatingly painful. I think it’s the method that was used and the person administering them.

There are different amounts of radiation given and this is measured in different units.

Is radiation like the atom bomb, but concentrated to different amounts and targeted? What about impacts of scattered radiation? Impact on high blood pressure, the heart?

I feel like I did not spend enough time studying about radiation before going into it. I went into it a bit blindly. I was not provided thorough information. I did not know enough to ask the right questions.

I am almost finished with it, but I hope we can have an open, honest, educated discussion about it here, so we can learn how to cope with it, learn about what options we have, what questions to ask, etc.

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As a student nurse nearing the end of my degree now, I can’t believe I didn’t know this information either, even on a professional level. Would it be worth asking why you weren’t given information about the different kinds of radiation and why you weren’t given the choices to be included in your care plan with these options? As this is now taught as an integral part of healthcare. “Patient choice”, and knowing all the facts to make an informed decision.

I am only at the beginning of my journey, and will receive information on Monday about what the MDT have discussed for my treatment plan.

Thankyou for highlighting this. If radiation is mentioned, I can now be sure to ask all of these points. Please ensure to ask these questions to the team looking after you so you have answers, instead of wondering why. I wish you well in your recovery :folded_hands::heart_hands:t3:

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Thank you! I don’t know why I was not told about the different types of radiation options. I have been asking questions to my care team, but they are not been very helpful. If I need radiation in the future, I will not return here.

I hope you have a better experience, and get all your questions answered.

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I’m so sorry this was your experience. You should speak to PALS (patient advice and liaison services). They resolve issues confidentially if you haven’t recieved appropriate information or have any complaints. They take care of the process for you.

The option is there for you if you feel you want to persue it.

Take care my lovely x

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I have been told I have to have radiation, but I am worried about it. All I have been told is that it will kill any tiny cells that could be there still after my operation to cut out all the cancer I had. Luckily it not spread to my lymph nodes.

What questions do I ask the person who is going to tell me what amount of radiation they are going to give me about my options - I was hoping not to put my body through more.

Thank you

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Here are a few questions.

  1. What type of radiation options do they offer? CRT, SGRT, IMRT, etc https://www.cityofhope.org/clinical-program/breast-cancer/treatments-survival/radiation-therapy
  2. Partial or full breast?
  3. Are tattoos required? If so, what technique do they use to minimize pain? I believe SGRT does not require tattoos, but CRT does.
  4. How do they protect the heart and lungs during treatment? Or minimize impact on them?
  5. Accelerated 5 day treatment or longer treatment?
  6. Will you be clothed or not? Some treatments require you to remove the top clothing?
  7. Will they need to draw on your skin with markers during treatment?
  8. Oncotype score low, stage 0 or 1, low grade, small size tumor removed with clear margins, lymph nodes not impacted - In this case do you really need radiation? Do the benefits outweigh the risks?
  9. Do you need to take time off from work to deal with radiation side effects?
  10. Radiation dosage amount?
  11. Gear and shield to protect other parts of body, including the thyroid, from scattered radiation?
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Thank you for that - I didn’t know there was so many different types this has opened my eyes.

Thank you again

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Hi @rosek

I ‘m sorry that you seem to have had such a negative experience with so little information and especially with the tattoos .If you have been offered a Holistic Needs Assessment or have a good relationship with your BCN service then if you have any remaining questions to resolve ( this happened to me in relation to something else ) they may be able to sit down with you and to discuss them which may give you some resolution and them some pointers for improvement.

To @ibizan55 and anyone else who is worried and struggling with terminology - in relation to the different terms for the therapy and whether tattoos are used or not and if you can keep your clothes on often depends on the machines that are available at your radiotherapy centre . If you don’t want tattoos then permanent marker pen which will eventually wash off is sometimes an option. I had the tattoos but it was painless and they’re just tiny dots one of which is barely visible at all now - but I know not everyone has been as lucky with theirs . I did lie with my top half exposed but I was given a Hospital gown every day to walk to and from the machine and wore a stretchy crop top that I could pull down at the last minute . I had a shoulder injury and the staff were very helpful and understanding when it came to positioning me .

My treatment was in Leeds and I saw on our regional news programme recently that they have new machines now which no longer require patients to be tattooed and I’m sure there will be other improvements too.

As regards dose I had 26gy over 5 treatments - the alternative would have been 40gy over 15 treatments . When I had mine the lower dose 5 day protocol had only recently come in for low grade cases and my Oncologist didn’t know which I had been selected for and I think was a bit confused about it herself because she thought the dose was the same whether it was 5 or 15 treatments and it was a member of the radiotherapy team in a pre- treatment phone call who explained the lower dose to me and offered to get me another appointment with an Oncologist to go through it again. Mine was whole breast radiation , I was assured on asking that they wouldn’t go near my lymph nodes so there should not be any increase in risk of lymphoedema.

Depending on your age and histology you may be offered radiotherapy to the axilla or boosts - extra treatment to a particular area. You have to sign a consent form before you can have radiotherapy - it is really hard to get the information you want sometimes but don’t sign it if you’re not sure . And remember that as with surgery they have to tell you about the complications . My BCN had sent me a load of information from Breast Cancer Now and other sources including on radiotherapy so I read it ahead of time and please ask your BCN if they can send you stuff. You could also speak to the Nurses on the helpline .

I’m a Nurse and I didn’t ask for a thyroid protector but I do trust my Radiographer colleagues a lot to get the rads where they are supposed to be going probably because I’ve had good working relationships with so many of them for so long . I was told ( by a Radiographer ) that Dentists tend to be the worst users of radiation so I ask for a thyroid protector when I’m being X rayed at the Dentist now.

As mine was on the right I didn’t have to worry about breath holding though I did learn the technique just in case . The Radiotherapy team sent me a video beforehand about it and the treatment and exercises to do afterwards to prevent tissue contraction - though that side is possibly a little tighter than it was before. I’m also asthmatic but I haven’t noticed any worsening of my condition and it’s been 3 and a half years now.

I don’t think there’s any way to tell how much time people will need to take off sick or recover afterwards as people respond differently and everyone’s work / life situation is different . From reading other threads some people have not needed any time off others have had prolonged fatigue. I was able to drive myself the 40 minutes each day to and from my 5 appointments through a busy city that I wasn’t entirely familiar with though I did have to stop and have coffee and sit down after each treatment .

About 3 days after finishing I was hit with fatigue that was really bad for 3 days and was still quite debilitating for the next week . Overall it took 3 months to recover but I can’t put it all down to radiotherapy as I was emotionally and physically used up anyway . My Mum died a few months before I was diagnosed and the end of my radiotherapy coincided with the anniversary of her death and unsurprisingly this adversely affected my frail elderly Dad as well and after 2 weeks of rest I was trying my best to visit him regularly and support him whilst recovering not just from radiotherapy but also my shoulder injury ( unrelated to breast treatment ) and cope with the side effects of hormone therapy . I’m lucky in that I work for the NHS and my half pay lasted until after I returned to work but if I’d had the option to work from home as some people do I might have been back in work sooner . Remember that cancer and cancer treatments entitles you to reasonable adjustments.

I had a red swollen breast for quite some time as well but my skin did not break down and now my breast looks pretty good considering all it’s been through.

Like you @rosek I did wonder if I should have radiotherapy - my cancer was so small and early and of a kind that rarely spreads so considering that you can’t repeat radiotherapy to the same area ( though I’m thinking there may be exceptions ) it seemed a bit of a waste . However I needed to have it to fulfil the conditions of my medical trial and I had a distrust of the hormone therapy - the benefit to me of taking that for 5 years was very small and my surgeon felt it would be reasonable for me to stop if I didn’t get on with it . I didn’t get on with it and called it quits after 5 months so I’m glad I at least had the extra protection of the radiotherapy which I have been told cuts local recurrence by 50% .

Well done if you’ve got to the end of this and sending love to those of you struggling with decisions / side effects and uncertainty . Xx

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Some really great info here thank you everyone! Ive been told I will be offered radiotherapy and I havent even thought about the questions I need to ask yet :heart:

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Thank you so much for sharing your experience in such detail. I am dreading hormone therapy and may skip it based on the side effects. One thing that I don’t see much reference to is impact of radiation on perimenopausal vs postmenopausal women. Have you heard anything regarding this?

The other thing is that estrogen is a heart protector and has other benefits, so even though the cancer was estrogen and progesterone positive and her2 negative, I am not sure it makes sense to block what little estrogen there may be. Has anyone seen a cardiologist or endocrinologist before starting radiation or hormone therapy?

I am also puzzled by two other things. Radiation can actually cause cancer. What are the chances of this? I would like to know if anyone had this happen.

Also levothyroxine, a medication used for hypothyroidism, can cause cancer. Should I switch to an alternative? I need to see an endocrinologist to find out.

Finally, there is not enough communication between the radiation techs and oncologists. Good to meet with them together, instead of separately, but not sure this happens much. I asked a question to the radiation tech about amount of radiation I am receiving, and they told me to ask the oncologist. By the way, during the treatment I was not examined by the radiation oncologist, even though there were weekly meetings. I was told the radiation techs examine the skin. Still puzzled by this. Get a female radiation oncologist if you can.

Is there much communication between the oncologist, cardiologist, endocrinologist and gynecologist? I don’t think there is. Everyone is in their silos. We need to talk to them all, and ask them to communicate about our individual situations and vulnerabilities.

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Good timing with your message. I started radiotherapy last week and will have 15 sessions in total. I personally think the side effects that the staff have told me about have been massively downplayed. Was told to expect a bit of fatigue towards the end and possible very minor skin reactions. On Thursday I had one session late at night and was booked in 13 hours later for the next zapping session. I was a bit concerned about this but was told there was no issue with the closeness of the timings. By Friday late afternoon I was in excruciating pain in my arm and chest wall, and couldn’t lift my arm up. It seems the radiotherapy has aggravated some existing complications. I had no idea there were different machines available and like you felt I didn’t have enough information about this treatment. Back on stronger meds and moisturising loads (more than the twice a day they advised me) to help with, so far, minor skin reactions. Curious if anyone has had skin reactions and what has helped?

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Are you in the UK or the US @rosek . It sounds as though you have been doing a lot of researching and as though you have some anxiety . It sounds as though you’re on Levothyroxine - many people take this including one of my relatives and for many years without problems . If you’re in the UK try to find out if you can have a Holistic Needs Assessment - you can use this to ask questions and your Breast Care Nurse will contact a Pharmacist for example to answer your questions about drugs. You could speak to Nurse on the Helpline here . If you’re in the US then I don’t know what to suggest .

I’m post - menopausal myself but there are threads on here about radiotherapy with contributions from younger women if you want to search for them.

As regards the hormone therapy - it’s a very personal thing - my benefit from the tablets was very low. I have a few underlying health problems that meant I wasn’t able to take Tamoxifen and I have a family history of various MSK and auto immune conditions and osteoporosis . I’m post - menopausal and was on Anastrozole but I struggled with joint pain . Some people have found that this improves with time and others don’t get many side effects .But it was even more complex than that really as having lost my 2 lovely aunties , my Mum , most of the sight in one eye been diagnosed with sleep apnoea and gone through lockdown as well as breast cancer I had already had 5 miserable years and wasn’t prepared to risk being miserable for another 5 or risk aggravating an existing condition when there was very little certainty that it was going to benefit me . For some people though it’s a no brainer and had I been younger or had different pathology I would have tried much harder to stay on it. Xx

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Thanks for sharing. Glad to say that I am not experiencing any anxiety. I find it interesting that when people question things, it is tied to anxiety. I am annoyed that when I ask questions, people are evasive and they think I am asking questions out of anxiety. I am trying to get facts, and make educated decisions.

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calendula cream has been working well for me.

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You’re right to ask the questions and I understand - if not anxiety then maybe you’re a little angry - and there’s nothing wrong with that especially if you can put it to good use to help you get a better understanding of everything . When I re read some of my older posts it’s quite obvious to me that I had a lot of anger even more than I knew. At the stage you are at now the Moving Forwards course might help - the one I did was online and it did help me a lot, I think I would have got more out of a face to face one but it was at the end of lockdown so they were only just re- introducing them at that point and there wasn’t one available when I wanted it. If you get the right person running g it they will be able to help with all your questions . I also get frustrated with compartmentalised care - one Doctor looking after one body system as our bodies don’t work like that . Xx

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Thanks. It sounds like a helpful course. I feel annoyed, not so much angry. Anger would only be hurting me. I am moving forward for sure. I am feeling grateful the cancer was caught early, and I was able to get the treatment to remove it. Next phase is returning to exercise and yoga to lose weight, and build muscle and flexibility. Wishing you all strength and peace in this difficult time. You are not alone. Don’t be afraid to ask questions and persist. Don’t let anyone dismiss you by making you the problem by saying you are anxious and angry and you need help. The problem is not you, and don’t let anyone shift the focus. The problem is a medical system that doesn’t give you respect, care and sufficient answers that you need to make the right choices for you! Take care everyone!

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They’re is a thread on here where people have discussed not taking AIs or Tamoxifen.

I opted not to take it as felt the risks involved in taking it weren’t worth it for me plus I only found out later my percentage benefit was 0.1% so you’re absolutely right about finding out what your risk of recurrence is and what percentage benefit any treatment will give you - radiotherapy included.

I was given the option of radiotherapy (5 days targeted) as they couldn’t recommend one way or the other as it was a small benefit to me. It brought my risk down from 3-4% to 1-2%.

Also, people shouldn’t be misled by medical professionals telling them the relative numbers instead of actual numbers so they could have said to me radiotherapy would improve my risk by 50% as some are told instead of giving me absolute numbers.

I’ve heard lots of people saying oh you should persevere with hormone blockers because they give you a 50% improvement, but knowing 50% of what is vital!

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No idea what type of radiotheraphy I had but there were tattoos and my top half was unclothed.

I had the five day treatment in the 20th October but I still feel terribly tired.

Penelope

PS I have refused the hormone treatment and am going back on HRT having read Oestrogen Matters the book saying it doesn’t make much difference to hormone sensitive cancer reocurring. Dr. Tina Perrs who has had breast cancer herself is on it.

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Me too. Done my research and happy to stay on HRT but had to fight to stay on it tho!

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I just finished my last treatment today! (20)And I totally agree with you. Now I have a crispy, red boob with a rash on my chest that I’ve had for weeks now. Also since my BC was left, I’ve worried about my heart. We need more information. When I was numb, didn’t have time for it to register.

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