Hi folks, last week I had a mastectomy and reconstruction. Early days but recovery seems to be going to plan. I’ve been told I don’t need chemo.
Next week I meet with my Oncologist to plan for radiotherapy on my breast and lymph nodes. I’ll also need to start taking hormone blockers.
The range of radiotherapy options and hormone blockers feels like a minefield - radiotherapy 5 days vs 7 etc, bloods confirm I’m still going through menopause which will impact the hormone drug of choice etc.
The experience of others in this group has been invaluable so far, so hoping you can help with the next step.
For those of you who are on/completed your radiotherapy journey - what questions should I ask at my first appointment? What do you learn that was in the booklets? What do you wish you had known/prepared for? Are the side effects worse if it’s breast and lymph nodes? etc…
Sounds trivial but they let me request music during my radiotherapy sessions so do ask them - made it easier for me and gave me something to think about each day planning which songs - for my last session I had OASIS Live Forever!
Radiotherapy treatment itself is very quick. You first attend a planning appointment, which is a ct scanner, were they take measurements to ensure you are in the right position every time you go for your treatment. It can be a bit daunting being topless on a table while one or two radiographers measure and make adjustments, but they are very professional and respectful. It helped me, to think this was just another day for them. Plus the benefit of having the treatment out weighed the discomfort of being exposed. Made it feel more normal and rational in my mind.
The time taken with planning, means they are very quick to get you in position for the radiotherapy and before you know it, it’s done and you’re dressed and out.
Afterwards the skin can become sensitive and it’s advisable to use plenty of moisturiser.
I found travelling (even as a passenger) tiring although I could have driven. I did suffer with thrush under the breast, it was mostly likely a result of using too much moisturiser and skin-on-skin contact.
Longer term tiredness/fatigue has plagued me for several months (9 months on). Radiotherapy keeps working for quite some time after treatment. It may also be an effect of the hormone tablets. The breast has become firmer, and about one cup size larger - so I continue to wear soft, post surgery type bras for comfort.
Hope my little insight helps, and best wishes for your treatment.
Not at all trivial. I’ve had 2 separate MRI scans so far and both were very different experiences as they were in different hospitals. The first asked if I wanted music and then played ABBA’s greatest hits which was fine - but the room was freezing and I was so cold I started shivering. The second, the room was warmer which was great and they asked if I wanted to listen to the radio during the session, which I did, but the volume wasn’t loud enough to hear it over the machine.
The details you have shared are exactly what I’m looking at. The booklets etc are all very helpful but it’s these wee details that make the difference as I’ve found throughout the process that all advice from the professionals has been accurate/helpful, but they do often contradict each other so knowing what to ask for on all levels is really helpful. Thanks for sharing.
As for feeling exposed, the process so for has certainly taught me that I need to leave any pre-conceived ideas of dignity at the door - although maybe one for professionals on this chat to note is that I’ve always had a small chest that I was self-conscious about. To have professionals continually refer to that fact every time I’m examined doesn’t help on the boosting self-confidence front when I was already self-conscious!
I’m glad you mentioned the travel element. If I drive to the centre it’s an hour journey, if I take public transport it will take me two hours to get there. On the fatigue point, is it something that creeps up on you or is it sudden? For example, will I suddenly feel tired after a session or gradually start to feel tired as the sessions progress. It may seem like a silly question but trying to establish how safe it will be to drive, checking there won’t be a day I’ll suddenly feel exhausted after a session and risk being stranded with my car at a session.
It’s not that instant. The real fatigue starts later more often when shorter treatments (5 days) have finished. I was at a point were most things were making me tired, and like you, it was an hour drive each way to the hospital. I think a mix of anxiety and knowing it was another step played on me and as I had a choice, let my other half do the driving,
The long term fatigue developed over time, but “episodes” can strike quite quickly. I can be sprite and lively in the morning, then feel like I’ve run into a wall by the afternoon. Between 2 and 6 months, most afternoons for me were difficult. They seem to be less frequent now at 9 months.
Of course, the hormone tablets could be adding to this, and some people barely notice any side effects. I guess it’s a little bit hit and miss, how it effects one person, may be different for the other.
My biggest tip is to cut off the arm of a long sleeved top or the foot off a knee high sock. Reason is that the radiotherapy rooms can be cold and you will be bare from the waist up. Wearing these on your arms can keep you a bit warmer. Also take or ask for a blanket for your lower body.
For the planning session there was 5 people in the room with me bare from the waist upwards. Two were men. Planning was 45/60 minutes for both sides. It was ok for me I felt they were doing this day in day out and it wasn’t something they hadn’t seen before. I had one male on one of my radiotherapy days. I have read others posts that they would be uncomfortable with a male. So this might be something you may want to consider and ask if it’s important to you.
Ask if you can take a your own music, mine had a CD player.
I had 5 sessions but on both side so twice the time. Approx 20 minutes each side. Setting up takes more time than the actual treatment.
I was told not to moisturise the morning of treatment and could use any moisturiser that I would normally use. Some have been recommended eczema creams as they are fragrance free and less likely to cause a reaction. Best advise, don’t try something new just before as your skin will be sensitive. I won via Instagram via Dr Liz O’Riordan, Radiaderm R1 R2 gel and cream designed for radiotherapy and had no redness or skin reaction.
I had 5 days, Wednesday, Thursday and Friday, weekend break and then Monday Tuesday. By the Monday I was really fatigued I couldn’t do the breath hold (to product your heart if left sided treatment). I was taken on my first day, drive myself the next two and then needed to be taken for the final two days. I was advised that the fatigue may start after two weeks but for me it was after a few days. I had received chemotherapy before and continued with Herceptin during.
Radiotherapy is an invisible treatment but it tackles those pesky cancer cells that may be still there. It’s powerful and you need to rest and take care.
Thank you so much for this advice. This is the practical information I was looking for, the info not in the leaflets that I wish I’d known before my previous treatments.
I’m someone who is always cold so the tips for keeping arms and lower half are especially welcome.
As for the male medical team, the gender doesn’t bother me but I find the large number in attendance unnerving - regardless of gender so really helpful to know to expect so many in the room at the planning session.
Hi, I didn’t finish my radiotherapy sessions, nine in total which will be completed next week. My treatment is on the right breast after lumpectomy and as previously mentioned it takes more time to place you in the correct position than the treatment itself. At the planning session I had tatoos marked by two radiographers, the same number during the treatment sessions and almost at every session was a male radiographer. I came prepared with arm warmers reading on the forum that it maybe cold in the room but I didn’t need to wear them at all as the room is warm. Better to be prepared and to have these arm warmers just in case.
I’ve been given Zerobase and Betnovate cream and advised to let the staff know of any acute skin reactions.
An important tip which isn’t maybe always mentioned is to continue with the exercises given after breast surgery. To reduce the risk of long term damage after radiotherapy it’s important to exercise frequently and regularly stretch the tissues in the treated area. Keep fit and eat a healthy balanced diet during radiotherapy, it will help with physical and mental side effects.
Hi!
I had left side radiotherapy including armpit area (I had to have complete clearance as it had spread). I had a course of 15 days.
I found the oncologist and the radiotherapy teams really helpful and informative.
Skin irritation is likely going to be an issue, and mine was pretty bad. I spent a fortune on fancy creams which I’d heard about but you know what worked best? E45 cream! I kid you not.
In hindsight, I wish I’d asked more about afterwards. How long is it still working for in my body? When is peak? What should I look out for? What’s normal skin wise and what’s not?
Also, prepare yourself for absolute elation when you finish your last one, and you get Booklets about how you’ve finished your cancer treatment! Then suddenly, after rushing around for radiotherapy and scans and appointments….you have nothing. Although that’s positive, it’s a big adjustment and can be the time when feelings catch up with you. All perfectly normal, so just make sure your nearest and dearest are aware and can support you. I put on a brave face and hid all that and it probably did me more harm than good.
Wishing you all the strength you need for this next step xx
