I'm 24 yo woman and they found a 5.6cm tumour in my right kidney when looking for gallstones.
Just saw the specialist finally and they said the tumour is malignant. I don't know how they can tell, but they seem confident. I suppose mainly I want to know what other people have experienced with this kind of diagnosis. They haven't seen any spread on the CT scans but they said there could be microscopic cells invading the artery next to it. I want to know how they can test for cancer that has spread into the blood. Should I be expecting to survive this? Or is this just a slow death sentence, waiting for the cancer to come back? How do people cope with these kinds of illnesses?
Thanks in advance for any response.
Welcome to this club, though I'm very sorry that you're here.
I have terminal kidney cancer, have been living with it for who knows how long, but was diagnosed in August of 2012.
You are lucky to have found it, as more often than not, it grows without any noticeable symptoms. As with your case, it is most often discovered while looking at or for something else.
I don't know how or if they can test it specifically to see if it has progressed into the blood stream, but I know that once kidney cancer has moved to the blood & metastasized it is terminal. There is no remission or cure for it. Having said that, you are very young to have this particular cancer, & that alone is a good thing as you are strong, & people can live for quite a long time on the drugs that are available. If it hasn't yet metastasized, the surgeon will probably remove the tumour & that will be it.
In regard to how you cope - you just do. The human mind is a marvellous thing, & can overcome an enormous amount of things. It all depends on your outlook & attitude.
If you have any other questions please feel free to ask, & I'll answer as best I can .
I'm really sorry to hear it has become terminal for you. Did you find anything in particular helpful for coping after diagnosis? I've been struggling to sleep because of the stress. At the moment I just try to distract myself with mindless TV shows. The tumour is coupled with chronic muscle spasms so it has been hard to keep busy.
I'm really hoping it hasn't metastasised as well. Have no idea how they'll know.
It is kind of encouraging to know the drugs have helped you. I've heard treatments are always getting better.
I was diagnosed terminal, & I'm grateful for every day that I've had. But there's a good side to knowing you will die sooner rather than later; actually a couple of good things.
1) You can design exactly how you want your funeral. I already have my bespoke coffin - sitting in my lounge room (you can see a pic of it on my home page if you go into my photos). Whereas if you die suddenly, your remaining family are in a position where they have to make all these pressing decisions about your funeral, trying to decide what you would have wanted, etc. If you get it all done now, you can sit back & relax, & your family won't have to go through all that turmoil when they will be upset & quite often, not in the frame of mind to make all the required decisions.
2) It changes you - you don't sweat the small stuff. It's quite liberating to not worry about things anymore. These days I just go along with the flow.
I am very fortunate, also, in that I tend not to worry about things, especially if I can't control them. I have a fabulous husband. He and I are both very realistic, but we talk & joke about everything, including my impending death. Talking, I think, is one of the best ways of coping. If you don't have a partner or family member/close friend who you can talk to about this, don't hesitate to ask to speak with a Social Worker or Counsellor, Pastor, someone from Lifeline, Beyond Blue or the Cancer Council. There are plenty of people who can help with depression, stress, anxiety etc, or if you just want to talk. You can be referred by your GP or Oncologist to see a Community Social Worker. They can be very helpful; & you can, of course, talk here as much as you need or want to.
New treatments are coming out all the time. If you happen to need treatment, "normal" chemo & radio therapy doesn't work on kidney cancer, so they use what's called targeted therapy. It's still a chemo, but it won't kill normal cells like the regular chemo does. It's targeted at the mutated cells.
You may be given Immunotherapy in the first instance, as it seems to have become the most beneficial of what is available. If that doesn't work, it will be an oral chemo where you take a tablet or two every day (depending on what they give you). But I'm jumping the gun a bit here - you might not need any treatment at all. 🙂
The muscle spasms must be horrible. I haven't suffered with any. What part of the body are they happening in? Are you working at the moment? Try to keep busy & exercise each day if you can. Exercise is very important, especially if you have treatment. It doesn't have to be strenuous, just keep moving.
Keep your water intake up as well. Because your kidney is impaired, it won't be flushing the toxins from your body as it should. Try to drink 2-3 ltrs of water every day. Warm water is better as it is digested quicker.
Sorry for the rather long post - sometimes I do tend to ramble a bit. 😏
I'm trying not to jump the gun too, but it's hard not to think about this stuff. The thought of dying hasn't fully set in, but I've noticed at the moment I've been taking the time to appreciate small things. I've been suffering from chronic depression for a while now and it's a weird but good feeling to want to live again. Kind of a cruel joke under the circumstances, but I'll take what I can get, hah.
I get spasms in the thoracic region which are totally debilitating, so I can't work and I had to stop studying. I try to keep up with my stretches and don't like to sit at home all day. Love mountain walking because you can take as many breaks as you need and still feel accomplished, haha.
The leading theory is the tumour is pressing on a nerve, or the hormones from the tumour have intensified pain from gallbladder. Sometimes the spasms last 4hrs, sometimes 28hrs+.
My GP wouldn't give me anything because he said nothing would help anyway. But yesterday the hospital gave me Oxycodone to use when I have major spasms. I'm not a fan of opiates, but since surgery is coming up within a month I shouldn't have too many more major spasms.
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