Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

Just diagnosed for the second time

autumnwalks
Posted by

Hi everyone. In 2016 I was diagnosed with 2 primaries in breast and kidney.Right kidney was removed, lumpectomy and I thought 3 years in remission.It transpired last week at my gps that I have a tumour on my remaining kidney and mets to lung and shoulder. Huge shock.Seems it has actually been there since 2017 but because it was small was missed on two scans so.has now spread.First appt with consultant next week.My daughter works at the hospital and thinks it will be biopsy first then maybe targeted therapy.Any help or thoughts of what we might expect for the future? How long to people live with this if it's not a silly question? Thank you .

buttercup01
Posted by

Hi , I'm one of the volunteer community champions.

So sorry to hear of your husband's situation. Good luck with seeing the consultant next week. There are a lot of treatments being developed for kidney cancer,so I won't attempt to second guess what they'll choose. Depends what systemic treatment they think will deal best with the mets.

Some of us in this group have been on a particular  oral drug for some years, others have just started on an immunotherapy combo. So expectations can be very different, but on the whole kidney cancer is a slow grower.

Do let us know how you get on next week. 

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
autumnwalks
Posted by

I'm posting for myself..I don't have a husband 

buttercup01
Posted by

So sorry . I must've been having a brainstorm when I last posted.

Please excuse my error.

Sue

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Gragon
Posted by

Hi ,

Welcome to the community and I'm sorry that I haven't replied sooner but I was a bit preoccupied waiting for my scan results.  One of the difficulties in working out what might happen is that this could vary depending upon which type of Kidney cancer you have.  I have Renal Clear Cell which is the most common.  Your team may well want a biopsy firstly to make sure it is the kidney cancer that has returned and spread and then presuming it is kidney cancer what type it is.

With my cancer I have been on a targeted therapy (Pazopanib) for five years now and it is holding the cancer well.  This was one of only two treatments that were available when I was first diagnosed but there are many more available now including immunotherapy treatments which use a different mechanism.

The medications all come with long lists of side effects but you only ever get a few of these and for most people these are manageable, if they are not then they will try reducing the dose which can still be effective and suits some people better or move you to a different medication and try again.

Asking how long people live with this is not a silly question but it is one that is difficult if not impossible to answer.  These drugs are so new and they have improved the outcomes so much that people like me are still alive and in much the same situation as when I was diagnosed.  They will only know the statistical outcome when enough of us taking these medications have died to give a large enough sample as to be representative, even then I am sure there will be "statistical outliers" who will live for much longer than expected.  When I was first diagnosed I was thinking I would be lucky to survive a couple of years.  I am now checking to make sure my state pension is all OK as I may need to start drawing it in ten years time.

You are welcome to come back with any questions that you might have especially once you find out what the plan is for your treatment.  You might also want to try ringing the Macmillan helpline on 0808 800 00 00, they are excellent at offering support but can also help and advise you with any practical or financial concerns you might have.

Another good resource is the Kidney Cancer UK website, they have more detailed information specific to kidney cancer when Macmillan has more of an overview.  Macmillan are probably more set up towards being able to offer professional support to people although KCUK also has an online community on facebook.

I hope that this has been useful for you,

All the best with your treatment and please let us know how you are getting on.

Gragon x

autumnwalks
Posted by

Thank you for replying.It's in my favour that all the cancers are very slow growing. As you said , I'm going to have two biopsies, a lung and kidney  then a scan in a month or so.I feel we can breathe a bit as there isn't as much urgency as I thought there might be and treatment whatever it is won't start yet.They will just keep an eye on the kidney for now.

buttercup01
Posted by

Hi 

Just to say many of us are on Pazopanib and have been for years. I was first put on it in 2013, had a treatment break of 3.5 years  n only recently went back on it.I've been living with cancer itself for 14 years.

 There are also other drugs which have been developed since for kidney cancer.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.