Radiotherapy? Did you know of the ONGOING effects?

[jennydog]

About 33 years ago a mole on the back of my left arm had to be removed due to malignant melanoma ( I had never sunbathed ) Subsequently the glands under my arm were removed and I had aggressive radiotherapy on my shoulder. I was badly burned and the hair & sweat glands under the arm were destroyed. I have had limited and deteriorating use of this arm and now my left leg doesn't pick up properly.

I had the following conversation with the Consultant Neurologist:-

Him : I don't know what's wrong with you. It's either inflammation or the results of radiotherapy.

Me : But I had the radiotherapy well over 30 years ago .

Him : Yes, but the effects are on - going.

Me : Flabbergasted & speechless!

My GP says that they were unaware of the long term effects 30 years ago. In addition to the visible effects it also caused fibrosis in my left atrium which is why I have AF.

[Hidden]

Scarey.......don’t know what else to say!

[CDreamer]

Oh Jenny I’m so sorry, that must have been so hard to hear but as my mother was a radiologist, yes I knew of the ongoing affects.

Unfortunately she didn’t always wear her lead apron & she also suffered the affects of radiation & died aged 32 in 1953.

Treatments for cancer use blunt instruments & many many suffer much from the aftermath.

I had a friend who had very aggressive radiotherapy back in the 1980’s for oesophageal cancer. Thankfully she survived & thrived until it returned a few years ago. She had been told she would be unable to ever have radiotherapy again & was unlikely to survive. But today’s technology is SO more advanced & targeted and causes much less damage to healthy tissue that she was able to have short, targeted radiotherapy along with chemotherapy & 4 years on is extremely fit & very well.

Best wishes CD

[Hidden in reply to CDreamer]

That is tragic CD.....

[Desanthony in reply to CDreamer]

Thanks for that story CDreamer. So pleased for your friend. Just shows how things change and in cancer treatments things are changing quickly. My brother-in-law has had a massive operation and many chemo sessions for gullet cancer and 3 years later he is having problems but not sure whether it has returned as the operation leaves very long lasting side effects. A friend of mine had aggressive treatment for Stage 4bowel cancer about 20 or so years ago and he stopped the chemo because he lost so much weight and the treatment was so gruelling. Thankfully he survived so he had had enough chemo in the short time he had it to cure him. He is the first to tell people that things are so much better today and you shouldn't be so scared by either radiotherapy or chemotherapy - although chemo does have some horrible side effects now things are just so much better today.

[BobD Volunteer]

Against which you are still alive to "enjoy" yourself. Life is all checks and balances!

[jennydog in reply to BobD]

That's the problem, Bob. Every day is a struggle. I am not enjoying it at all. I would never have agreed to have radiotherapy had I known but my son was only 6 and it was important to see him grow up ( my husband was a Master Mariner & away a lot )

Recent publicity indicates that anyone having radiotherapy for breast cancer should hold their breath to avoid heart damage.

[CDreamer in reply to jennydog]

Unfortunately we make the choices with the information we have at the time & it sounds as though you had good reasons to make that choice.

I have so missed having my mother in my life so from a child like viewpoint I admire & honour your choice.

But I am also sad that you can’t enjoy your life now.

Is there a after cancer support group near you? I know that can be really important to have support from people who have been through similar.

😘

[jennydog in reply to CDreamer]

Thank you for your wise and kind replies. The loss of your mother must have been dreadful for you and your family. Cancer is so hard for the victim but so much worse for loved ones who can do nothing to make things right. I agreed to all treatment in order to survive to see my Greg grow ( he made 6'5" )

I am content in myself but can do very little physically. It's awful to see my beautiful garden going backwards and house maintenance is not easy. I have an automatic car but getting in to it is a problem when your left leg doesn't co-operate. I have lovely neighbours & friends who do my shopping and lift/ erect my Luggie electric scooter. Going out is problematic because it's safer to stay put.

[LaceyLady in reply to jennydog]

Do you get carers to help with your house cleaning etc? Maybe you could post a notice in a local shop for help in garden?

[Hidden in reply to jennydog]

Yes, had breast cancer 20 yrs ago, mastectomy, chemo, radiation, and 3 yrs ago.. Diagnosed with af, but.. I 'm still here so thankful

[nikonBlue in reply to jennydog]

really? I had 15 sessions after my breast cancer in 2015 16 and was NEVER advised about this holding my breath, and it was the left side I had the surgery and radiotherapy.....and now here I am with AF. Makes me wonder if there's a connection after all.

stay well

Blue x

[Frances123]

2 years ago I had radiotherapy for breast cancer (left side) and because of Afib they put a shield or protector in the machine to shield the heart which they showed to me. I still have side effects in the breast and under arm and varies from aches, pains, heaviness, tingling, electric shock and stabbing pains and know they will most probably be with me for life.

Sorry you are feeling so low and finding things difficult. I hope something can be found to help you.

[Becksagogo]

In 1982 I was diagnosed with Hodgkins Disease aged 27. I'm 64 now. After two lots of chemotherapy I had 25 radiotherapy sessions on my chest area. There was no protection for the rest of my body that I remember.

Fast forward 30 years I received a letter to say there was every likelyhood that as a result of that treatment I would get breast cancer in later life which touch wood has never happened however it is considered to be the main reason why I am now suffering heart problems.

There are days when I just don't want to carry on but fortunately they are few and far between and I am lucky to have a job and friends to immerse myself in.

As Bob says, if I had never had the treatment all those years ago my husband would probably have been a widower with a little girl to look after.

I have also had cervical cancer and I have had two melanomas removed from my back.

Try to make the best of what you have and I hope that you feel better soon.

[Bagrat]

The breath hold technique during breast radiotherapy is only available in certain centres and some people cannot provide the consistency of breath needed.

Many people call radiotherapy the gift that keeps on giving.

I was fortunate that my heart could be shielded during treatment because of where my lump was removed.

Treatments these days are so accurately calculated that side effects much fewer but many people still get issues as the years pass. Many more don't.

I'm so sorry you find yourself in this situation.

[spinningjenny]

I had radiotherapy for breast cancer seven years ago. I asked “Will this affect the heart condition I already have” and was told “No, but you will probably get angina in about 15 years.”

Hey ho! At least I’m still here and hopefully the angina can be treated when it arrives.

Had the all clear for cancer last year by the way.

On the whole I feel very fortunate.

[Sunny-fl]

jennydog, Had I known of the ongoing effects of radiotherapy I would have asked for a mastectomy. In Feb. 2016 I was diagnosed with Afib (no prior heart problems), nerve damage and Radiation Pneumonitis shortly after having a lumpectomy and 33 radiation treatments for breast cancer to the left breast 9:00 position. The nerve damage causes daily burning pain. My best to you.

[jennydog in reply to Sunny-fl]

I am so sorry that you are having such a difficult time. I am fortunate that I do not have any pain although I do ache often. Spasticity is the problem.

I was never given any warning and it's taken 30 years to become a big problem. Downsizing is on the cards but I am not really up to it!

I do hope that your pain eases with time.

Very best wishes.

[Silvasava]

So sorry to read the issues you are having. I had a stroke just before Christmas (thrombolised) and was diagnosed with Afib.. it seems there is damage to my left ventrical and I had 15 rounds of radiotherapy to my left breast 10 years ago. No shield was offered & now I'm wondering if the radiation is the factor. Prior to this I was fit and healthy & now I can only walk at a snail pace. Yes I'm grateful I'm still here but quality of life is not good at the moment.

[jennydog in reply to Silvasava]

Oh, I do sympathise.

Several years ago there was publicity about potential heart damage due to radiotherapy. I kept Daily Mail newspaper cuttings but sent them to a friend last year when she was having breast cancer treatment.

When I had my ablation they said that I had fibrosis (scaring) in my left atrium so a 2nd ablation will never be an option. It'll be pace & ablate.

It has taken 30 years for the damage to cause real trouble so it's all the more shocking to learn of the effects.

Very best wishes.

[irene75359]

I can't like this post, but sending you huge commiserations.

[jennydog in reply to irene75359]

Thank you so much.

I often wish that there was a "dislike" button. I don't ever want to frighten people but "knowledge is power" and this site is about learning and understanding.