My journey through bc seems to be galloping away from me. Recently diagnosed with secondaries in lung and pelvis bone, and given a very optimistic prognosis so to speak, I am on the eve of receiving a large single dose of rads to the pelvis. I’m worried because I was geared up to 5 smaller doses which I was assured was the correct approach. Same oncologist now says after planning session, it’s better to have one large dose. I’m afraid I have very little confidence in him as he’s made other errors when reporting my condition to my GP. Wrong tumour and nodes sizes, dates of appointments, wrong types of scans mentioned! I’m so worried about the side affects to my bladder and bowels, skin soreness and nausea. Beginning to wonder if I should continue trying different pain management first? The tumour is pressing on the nerve sheath, sending shooting pains down my leg. This mostly happens during night. I’ve started Gabipentin tonight, and have oramorph as a emergency stand by. Any tips and advice welcome. Thanks.
Hi Imac
I’m lying here wracked with the same pain you describe - my oromorph nearly empty… It certainly helps to know you’re not alone at times like this so felt I had to reply to you! I have secondaries in bone (mainly pelvis) and liver, my Onc has also made a few mistakes & didnt tell me I had changed to triple neg on secondary diagnosis… I was given one large dose of rads last year to my pelvis which I can’t say I really saw any improvement to be honest! I’m told the pelvis is quite a delicate area to give rads to due to the bone marrow/red blood cells made there. The chemo has helped me much more with the pain aspect but after a year I’ve been given a break for a few weeks…
I wish you luck with it all though & suggest seeing a pain specialist - a big help to me last year.
Beets
Hi Beets. Sorry to hear you too are in pain. So far I haven’t had much of a reaction to the rads. Trying various methods of pain control, which make me very dopey and tired. Getting gp advice and Macmillan nurse over phone. To top it all, I also have severe pain from a damaged cartridge in knee. Gp is going to refer me tomorrow. 2nd opinion for bc on 22nd in a dif hospital. So very tired from lack of pain free sleep.
Nerve sheath is the term my foreign oncologist used so may be wrong! Basically the nerves in the pelvis are sheet like rather than individual, I think. My pelvic tumour is pressing on this sheath. I had rads 8 days ago. Today I’ve taken slightly less pain killers, just as a test to see if it has helped with pain control. Touch wood so far it seems the pain is less.
Meant to say, I’m taking Gabipentin for the nerve pain. This is very effective, though make me sleepy so usually just take at bed time.