Radiation effects post treatment

[Maggiemoo]

I was diagnosed with  type 2 cancer. Uterine carcinosarcoma  MMMT ( malignant mixed Mullerian tumor) Dec 2017.  Total hysterectomy Jan 2018 followed by chemotherapy  over 4 months , Radiotherapy 28 treatments over 6 weeks. Ended treatment Aug 2018.  I developed sudden onset pain in right hip Nov 2019, scans revealed metastasis, sacrum cancer.  Later changed diagnosis to insufficient fractures of the sacrum and referred to fracture clinic.  The orthopedic Specialist identified the fractures were caused from the Radiation treatments I had received and described my bones as "rotting"  "decaying" and  needing surgery to stabilize my pelvis before it fully collapses.. My question is has any one experienced this side effect from radiation?  I am very apprehensive to face the surgery knowing the risk factors but I remain in constant pelvic pain when walking/weight bearing and the Specialist says its only going to get worse with time..

[sch]

Hi Maggiemoo,

Wow, it sounds like you're having a really hard time there. I am sorry to hear about everything that you've been through.

I haven't had radiation treatment, so I can't really comment on any of it.

How are you now? Did you end up choosing to have surgery or not? Or still trying to decide?

-s

[Maggiemoo]

Hi shc

Thank you for your kind words.

I have decided to have surgery after I got a second opinion from another Orthopedic specialist who had a good look at my scans and identified the severity of my pelvic fractures.  He knows the Specialist who is doing my pelvic stabilization surgery and holds him in very high regard professionally.   I am on the waiting list for elective surgery but that could change once my Specialist receives the titanium rods he is having made to drill into my pelvis.  It could be as early as July or sooner. 

In hindsight I wish I didn't have the Radiation treatment  or maybe had less treatments.

My Oncologist said after the fractures were found in my sacrum that I did have large amounts of Radiation , 28 treatments,  the maximum rounds as I was tolerating it so well at the time..   

My life has changed dramatically since the cancer treatment.  I have less energy, have sleep issues, and now  am in constant pain in my pelvis which further disturbs my sleep at night , and the worst is my mobility is affected.  I can only walk short distances now and in constant pain its worse when I walk or weight bear longer 

The surgery has a long recovery period , 6 - 8  weeks on my back in bed. And than I hope to be able to walk again.  But they cant guarantee I will be free of pain..??? 

I will keep you posted of my surgery date when I get it.

bye for now

Maggiemoo

[JennyG1]

Wow, that's tough. I do hope that you get your surgery soon and that you find that it relieves your pain.

It's a difficult journey and it's not surprising that you're feeling the way that you do. I found a naturopath who helped me to overcome a lot of the problems that I had with treatment. If you can find a good one, I can recommend it. They have some wonderful ways to deal with fatigue and pain, not to mention help with recovering from surgery.

[sch]

Hi Maggiemoo,

Sorry for not responding sooner. I got tied up with health issues for a while.

Having less energy I think goes hand in hand with being sick. Especially a side effect of chemo.

Why do you wish you'd had less radiation treatment? I'm assuming that the radiation was a contributing factor for the fractures? (Sorry, I know very little about radiation treatment). Was it not worth having?

I really hope that the arrives for you soon and that you get the results are what you are hoping for.

Best of luck.

-s

[Maggiemoo]

Hi Jenny GI

Thank you for your reply.

I am interested in trying a Naturopath now you say you have received help from.

I live in Canberra, there may be one here?

I will check it out. Thanks.

Maggiemoo 

[Maggiemoo]

Hi sch

Thank you for your reply.

The pelvic fractures I have are a direct result of the radiation I received. The radiation treatment has caused my bones to become brittle and fracture. The orthopedic specialist describes the radiation effects as rotting my bones, my bones are decaying from the effects of the radiation , he told me..

I wish I didn't have the radiation now  I know what damage it can do but its too late. the damage is done.. I was not informed about this effect of radiation before I had it.

I am having the pelvic stabilization surgery in July.. 

Thanks for your concerns, I will keep you posted how I go.

Maggiemoo. 

[JennyG1]

I'm glad to hear that you are going to try to find a naturopath. I believe that there are quite a few in Canberra, so I'm sure you can find one that suits you. I hope it helps you as it did me.

[Sue6]

I had bowel cancer which resulted in quite a lot of radiation treatments but I can't remember how many.  I was hospitalized for the last couple of weeks of treatment and a couple of weeks after as I needed quite a lot of morphine to help with the pain.  I was told my radiation was extensive hence the pain and side effects.  I did eventually return to work for a couple of years then took early retirement.  I completely understand where you are coming from the radiation has affected my bones but not to the extent you have.  It also calcified my ureter (the tube from the kidney to the bladder).  A urologist suggested the easiest solution was to have my right kidney removed but he was concerned if it affected the other ureter I could be in trouble.  I had major surgery to remove the damage to the ureter and re implant it into the bladder.  It was only in March and only partially successful.  I live with constant hip pain and can't remember the last time I had a good nights sleep.  I am struggling at the moment to achieve adequate pain relief which also severely affects my day to day life.  The treatment has also left me with continence issues which has negatively affected my quality of life severely limiting all activities.

[Maggiemoo]

Hi Sue6

Im sorry to hear of your battle with your side effects of your radiation.  The calcification of your ureter is so damaging and your surgery sounds like a mess.  The pain your are enduring must be so challenging for you.  All this damage is caused by the effects of the radiation you received.. I do feel for you and hope you begin to improve as time goes on.  Its debatable about the radiation treatment and if it is worth it in the end.?

As I said in earlier post I am on waiting list for surgery to repair my fractured pelvis caused by the radiation treatment I had two years ago.  The COVID-19 has delayed the elective surgery list.

Well things have changed in my world since than.  Firstly, I have noticed my pain level reducing in past few months. I can walk my little dog now without lots of pain.  I have been off pain relief for most of that time as didn't need it much.  

Recently I had PET scan  for three monthly  cancer screen.

The good news from that scan is my  fractures in sacrum/pelvis are showing signs of healing. 

The bad news is I  have lung cancer.  They did a lung biopsy and identified primary adenocarcinoma in right lung.  I have been referred to thoracic surgeon as they say it is operable and curable as it is early stage lung cancer, they think?  The lung lesion is  very small, I am having no symptoms. 

How do I feel?  Initially I felt very angry and upset with the oncologist and than with my body.  I don't know what my future is,  AGAIN?  I should know  more after I see Lung Specialist on 3rd Aug.  

Take care Sue6 I  am sending lots of positive vibes your way.

Cheers

Maggiemoo