Late radiotherapy symptoms following surgery

Hi Lortus

Sorry I haven’t an answer for you but I noticed that you haven’t had any replies so I thought I’d reply to you to move you to the top of the discussion. Hopefully someone will be along shortly with an answer for you.

Best wishes

Daisy53

Thanks Daisy!  I was told it is a very rare condition.  Happy New Year.

hi Loftus   sorry you've had to come and find us

https://www.nhs.uk/conditions/radiotherapy/side-effects/

it appears that this is a side effect of radiotherapy and the NHS does offer some guidance on managing symptoms.

The only thing I could add to that is up your intake of essential vitamins and minerals via plenty of fruit and veg, don't forget the B vitamins for healing. 

hugs

Carolyn

xx

Thanks Carolyn.  I had read the NHS advice, but advice refers to effects 2-3 weeks after RT, not 14 months after and following remedial revision of mastectomy scar.  I know your advice is good advice, and do appreciate it, but posted because I wondered whether anyone had had a similar experience.  I realise it is a slim chance I will find anyone as I have been told it is very rare.  Happy New Year.

hi Loftus  sorry, I have no experience 

You could try searching other groups ??  

Use the magnifying glass search icon at the top and search radiotherapy reaction and actually there are some cases.  Have a read up on those and if the users are still active you could try tagging them with the @ symbol

Does the scar tissue hurt? Is it sore?  You could try Sudocrem? we use it for everything in this house.

The other thing I swear is almost magical is pink salt, my son developed a rash the day before we were going on holiday and I soaked him up to his neck in a pink salt bath and the rash vanished, I was much relieved. 

One thing my team told me was that they felt responsible for fixing things they'd inflicted on me, you could ask for a referral to a dermatologist ??  

Patience can be a virtue where healing is concerned 

hugs

Carolyn

x

Thanks again Carolyn.  Your last paragraph is very true!  I will see where I am in another month, and if no better may ask for that referral.  I have a feeling it is associated with the ‘enhanced’ radiotherapy.  I felt a bit of a guinea pig, though I was told they had been working towards this for years, it was certainly brought forward because of the Covid situation.  It is tight and uncomfortable, but not painful.  

I just wanted to reassure you about the enhanced Radiotherapy. It came about as a result of a trial called Fast Forward the results of which were published in March 2020 coincidentally along with the start of the pandemic. Covid did accelerate its use in the UK but the trial had been ongoing for many years.

If you have the 5 fraction regimen the dose you get is less than if you have the 15 treatment one as it is 26Gy/5 or 40Gy/15 but the biological effect is the same.

Work has been ongoing for many years to try to optimise radiotherapy doses and reduce the amount of appointments patients have. When I started training the normal fraction number was 25 which then was cut to 15.

Have you tried massaging the scar with vitamin e oil or bio oil. Both of these are supposed to promote healing. Also after my surgery I used some silicone scar dressings which I bought on Amazon. They are washable and reusable. They dramatically improved my the appearance of my scar. 

I hope you find a solution soon and start to feel better x

Hello exraygirl .  Happy New Year, and many thanks for your reply.  Your explanation was the one I was given at the time, but as I knew the treatment was new and the patients were piling up, I did feel a bit of a guinea pig.  I appreciate your assurance from someone who knows (I assume from your pen name).    Until ten days ago, I had been told not to put anything on my chest and not to do any exercises.  Now I have been told I can use Aveeno, and can start exercising.  Not surprisingly two months after surgery the area is very tight, especially in the axilla, but I will persevere, I have done this before after my mastectomy, although I started exercises almost immediately.  I did not know about silicone scar dressings.  I wonder if they are the same as hydrogel dressings.  I was told to try those by a breast care nurse as I left my last appointment at the breast clinic, but with Christmas intervening, I have only got as far as asking my local pharmacy who said they couldn’t get them except in boxes of 250.  I shall try Amazon for your recommendation.  Have you come across anyone in your professional life with my experience?  Thank you again for your help.

Happy new year to you too.

Yes I was a radiotherapy radiographer for 35 years. 
Radiotherapy does tend to make skin lose its elasticity so anything you can do to feed the skin is good and it’s why you must do your exercises so they you don’t tighten up.

The hydrogel dressings are usually used on new wounds as they create a moist atmosphere to promote healing. The silicone dressing shouldn’t be used on open wounds but can be applied when the wound is healed.

I don’t have too much experience with late skin reactions as to be honest we didn’t see patients again after they finished treatment so my knowledge is mostly anecdotal. I’m sorry I can’t be more helpful but keep me posted on how you get on x

You have been very helpful exraygirl!  I have ordered the silicone dressings from Amazon, and they should be with me on Tuesday.  Thank you again.