Hi, I was almost 5 years cleared of BC in November 2010, when I had a bone scan, I’ve been told I have secondaries in the rib bones, in Dec 2005 I found to have Breast Cancer, when having a pre op check I also found out that I had Renal Failure, these two are not connected, when I was having my chemo the oncoligist and renal consultants have not ever had a patient with both illnesses at the same time, so I thought whether anybody on this site would have come accross anybody that had the same conditions? I am now very worried that I now dialysis as I have kidney failure, and how I will cope with chemo and dialysis,and that I was 6 weeks away from going on the transplant list (as you have to be 5 years cleared before they will let you go on), it was what I was aiming for, so I could get a transplant, and then I would not have to be chained to a machine for the rest of my life? Sometimes life seems so unfair, having done everything possible to keep myself well enough to get a operation for a transplant and then somethine like this happens?? I now have to wait till middle of Jan to find out what type of chemo I need? not really what I wanted to hear before christmas, so now I’m just counting the days left. ps I have not told my kids yet.
Hello Janet, I am not in the same position as you but didn’t want to leave you high and dry without a reply.
I had my original BC 10 years before I got diagnosed with bone mets and have been having treatment for mets for almost 12 years. I don’t know anything about dialysis from a personal point of view but wondered if you contacted the dialysis dept you attend if they could perhaps push you to the top of the list for a transplant as you may need other treatment for your other health problems. Have a word with you breast care nurse too. She could always make enquiries for you, on your behalf.
Another thing, have you applied for DLA. This is a non means tested benefit that may help you finicially especially if you have children to look after? Your BCN should be able to get the forms for you. If I can help in any way, just ask. I have bone mets in my ribs too. I hope you are not suffering with pain. Take care, love Val
Hi Janet
I am sorry to read about your new diagnosis, please feel free to call our helpliners to talk through your concerns with someone in confidence, the line is open again Tuesday 4th Jan at 9am and opening hours are 9-5 weekdays and 9-2 Sat on 0808 800 6000.
BCC provide specialist secondary support which you can read about via this link:
breastcancercare.org.uk/breast-cancer-breast-health/secondary-breast-cancer/
Take care
Lucy
Hi Janet, Just wondered how you were feeling today and to tell you I have a good listening ear if you want to talk to someone tonight. Val X
Hi Janet,
I wonder if I can help in anyway as I have over 26 years in dialysis as a nurse. I have nursed patients suffering from renal failure who have had transplants and have also had a cancer of somewhere. I must admit that I have not come across a patient with BC but have had experience of patients on chemo. PM me if you want.
Regards,
Maggie (Marjay) xxxx
Hi,
thanks for your replies, I might ring the help line sometime this week,as 2011 seems to start a bit bad for me, as in 9 days time I would have gone on the transplant list? having waited 4 years and 46 weeks, if I had not found secondaries on my ribs, so thats a big downer, I wonder how anybody coped with dialysis and chemo as dialysis filters toxens out of your body and can make you feel quite unwell at times, and I already know about how chemo is, but not at the same time, suppose I’ll just have to cope with it. Just feels like I’m a bit left to my own devices as I do home heamodialysis and I am just waiting to get another CT scan to find out what treatment I will be given?
Hi Janet, I have sent you a reply to your PM. Love V
Hi
thanks for your replies, I am going to see my oncoligist on friday, so I should find out what treatment I am going on either staying on arimidex or chemo, funny enough I did not have a blood test to change from tamoxifen to arimidex as some seem to have? and the CT scan says 4th rib and then says 5th rib, so something is not right. I even found a letter from renal consult. says that I had pain in my left when it has always been my right, so I should be used to finding differences on letters?? Anyway got tuesday to go through yet as I would have gone on the transplant list that day, now it looks like I’ll never get a kidney transplant, and end up on my dialysis machine for ever, perhaps I should have not go my hopes up.
regards
Janet 46
Janet, bone scans are subject to interpretation - maybe it’s worth asking for a different type of scan to be 100% certain that you have bone mets. Since the implications are so serious for you, it doesn’t seem unreasonable to ask for a second opinion.
finty xx
Hiya,
Been to see oncoligist, got to go for another CT scan in feb, if it comes back the same as the last one I will keep on arimidex if it comes back changed then I’ll get a call to go to christies? still in limbo, but now I know it really is Secondaries. Got my CT appointment next day in the post…thats quick.
I’ve found with Arimidex I don’t sleep very well used to fall asleep at 9pm and now I’m awake all night long. Is this a side effect of the drug.
regards
Janet46