Radiotherapy

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Hi

Not been on here for a while. In March I was told chemotherapy had shrunk my germ cell tumour in the groin but it was still there and my tumour marker had gone up. I was told I might have a year or less. That was in Leeds. I have now switched to the hospital in Hull where I live and am under the Palliative care team. I have had 2 scans, one last month and to my relief both have shown my cancer to be stable. I have metastases in my left iliac bone and soft tissue in the buttock area that is causing quite a bit of pain as my sciatic nerve is under pressure and have been offered Radiotherapy for this. I'm told I just need one shot of it and if the tumour in my groin starts causing problems I can have Radiotherapy there as well. I was told this is to help with the pain but isn't being used to cure me. This got me thinking, I was never offered anything other than Chemo. If Radiotherapy helps with pain does that mean it is shrinking the cancer and if so then would it be possible to shrink my tumour to nothing?  Also I wonder if the chemo has just taken the fight out of the tumour to a point it is dormant. Is that possible?. It has been such a rollercoaster of a year. I am so grateful to still be here and to be relatively well. I sometimes think I have come to terms with dying but each stable scan gives m hope I can last a lot longer. Nobody knows do they, even the professionals.  Sorry this post is a bit rambling but just putting my thoughts down and hoping the Radiotherapy does take the pain away.

 JG

  • Hi JG!

    I had radio to my Lung tumor, it helped with pain and it did not grow afterwards. So not sure how it works but it did. 

    I think you cannot get radio all over as there is only so many you can get in a 5 years period. Please ask you doctor for more information. 

    All the best to you. 

  • Hi. As I understand the type of treatment you receive for your primary cancer depends on the type of cancer e.g prostate cancer is treated with radiotherapy whilst bowel cancer is treated with chemotherapy. Again, as I understand it, both treatments individually or in combination can be used for curative care or palliative care. I was told I was palliative care only a year after my bowel resection as the cancer had spread to remote lymph nodes. (On the plus side that doesn’t cause me any pain.)

    I also have secondary bone cancer in cervical part of my spine and received a short course of radiotherapy to help manage the pain and was told I could have repeat treatments as and when necessary. I can tell you it was beneficial but I also take pain medication every day regardless of how much pain I feel in. This seems to keep everything under control, with a little help from Orimorph every once in a while. 

    The only active treatment I am currently receiving is an injection of Denosumab every six weeks (and a calcium/Vitamin D supplement) to help maintain bone density. You may want to enquire if this is appropriate for cancer of the iliac bone.

    On the subject of scans my oncologist asked if I wished to continue with monitoring scans - as all they really do is tell me how much closer I am to the end - but, strangely, I take comfort in being able to chart my ‘progress’ to that point. The scans will continue albeit on a slightly reduced frequency.

    Palliative care is a lot about pain management so give the radiotherapy a go. I had five treatments over five days but the actual irradiation part of the treatment took about five minutes.

    All the best.

    Maninbath

  • Hi

    I am pleased the Radiotherapy helped with the pain, it is good to hear. I will continue with my pain relief also. Can't remember what pain free is like but looking forward to it.

    Julie G

    Jkg 

  • I had radiotherapy, like pet on my lungs.

    Then i got fractures, in the pelvis, and my oncologist said, if it turns out to be cancer in the bones, will be radiotherapy.

    She explained that you cannot have it in the same area, and then went on, if you had it it arm or leg,  and so on yes radiotherapy. No problem.

  •  Good post Jkg I had top whack  radiotherapy on my neck .and then neck dissection . So chemo keeping everything at bay that has since spread to liver and lungs. So on wait and see scans  but apparently it usually comes back after 6 months according to oncologist and they would then  offer me immunotherapy which could work. But can't have radio on same site . All the Best Minmax  

  • I did immunotherapy, for two years, so much kinder,  for me than chemo.

  • Hi Ellie 73 That's interesting as I just finished 6 sessions of carboplatin and 5fu in June which shrank and stopped all 7 or maybe 8 of my tumours 

  • Well if you are offered immunotherapy, i would do it again if needed, though you  do not get if offered again.

  • Hi Ellie Well I dont think it will be a tuf decision to make if I have to have it . The alternative choice is a dead lose imho I would just be so grateful to be offered it to be honest 

  • Hi JG, It is good to see you post again! You are spot on, no one can say when we will die, even if they estimate it and give you a prognosis they can be way off. There are lots of us here who are well past our predicted sell by date.

    To be offered any kind of treatment is a bonus because you never know what kind of effect it will have. My advice would be to write down all the questions you have and ask them the next time you see your Palliative Care Team or Oncologist. Please keep in touch and let us know what is happening! I hope you can feel well for a long time yet!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!