Hi Sally

I'm so sorry about the news you were given this week.

I am sure that others will be along to say hello.

In the meantime I just wanted to welcome you to Cancer Chat.

If you have any questions our nurses will be happy to talk to you.

You can call the team on 0808 800 4040 from Monday to Friday, 9am to 5pm.

You can also post in our Ask the Nurses section.

Best wishes

Jane

Hi Sally  

I've been browsing the forum for a few days and your post prompted me to join. I was given my diagnosis on 10 April: Stage 4 metastatic, unknown primary with weeks or months left, only option to prolong life. It was hideous. It came from a surgical consultant without any reference to an oncologist.  Two weeks later I met my oncologist consultant who told me I might not be curable but I am treatable and since then no prognosis as to "how long" has been given because there is no solid answer I don't think. From what's being said to me now I think the underlying message is that I'm reacting better to my chemo treatment than was expected and I do feel that there is light at the end of the tunnel, and it's not a train.

But aside from the cancer I have an "abnomal" kidney that no one is talking about. Apparently it's totally non-functioning  but it has been assumed that any exploration will not change my cur current cancer diagnosis, even though there is a question mark that my primary could be related to the kidney lining. Ths feeling i got from the Urology team is that the cancer will get me long before they are forced to do something about my kidney - so I really understand the feeling of being written off! 

I'm 46 and a rowing coach and fitness instructor so something like this was completely unexpected and a total game changer.  

Shelley x

Hi shelly 

Hope this post finds you well, or as well as can be expected in the circumstances, you like me probably had no idea this was going on in our bodies, as I have had no real symptoms, even before kidney removal, but I now have a dull ache in my lower abdomen that I fear could be the cancer,my onc is of the feeling, that no real hope, but as you are responding to the chemo, perhaps I may as well, it is gruelling, and I am only 2 cycles in of 4, why only 4 I have no idea perhaps it's a wait and see how I do. I take hope that they do not how,each individual and indeed, the cancer, will react and I have seen this mentioned on many forums I have visited trying to research my options. My onc who I have now named Dr no,  has told me incurable, but again this is widely used

Fortunately for me, my remaining kidney is holding up to chemo, how long that will remain is anyone's guess. What chemo are you on, and how many cycles are you having, and how long before you saw improvement, as mentioned in my previous post, I had a cystocopy Friday, all clear, which doesn't really add up to much in the bigger picture.. Have you thought about a second opinion, we are all entitled and I will be doing this if he feels all avenues have been explored. I also joined the Macmillan website, that has a kidney cancer group, but it is not that busy, I joined UK kidney group on Facebook, it's a closed forum, so only members can see your post, you can request to join and someone will add you. I too believe that the cancer will get me, not before my kidney gives up the ghost, or it decides to carry on with its journey in my body, but not today eh!! The thing I have found is that cancer doesn't give a *** about who you are, how healthy you are and the lifestyle preferences we make, it's all relevant. Good luck in the continuation of the chemo, and keep me posted how you are doing, as yours is the only response so far. So I am guessing we are something of a rarsrity  all the best Julie x 

Not today indeed Julie!!  

I was a "emergency medical" case - admitted to a surgical ward with suspected gall stones, then appendicitis, then liver infection, then the abnormal kidney was found and so it went on for three weeks of tests and scans until it came back as, shock horror, cancer. I never thought I'd get out of that hospital ward!   Prior to the unbelievable pain that got me admitted I had pain in my abdomen which various doctors fobbed off as pulled muscles and delayed fatigue, diagnoses based on my lifestyle.  

I'm now on Carboplatin and Placlitaxol chemos. Six cycles, of which I've had three. I expected the side effects to get worse with each cycle but actually I've handled them better and have felt stronger each round.  A lot because I've kept very detailed notes and have prepared for it:  Horrible bone pain, start the morphine a day early and keep on it. That sort of thing.  

I've been and am going down the route of second opinion. Royal Marsden turned me down saying they wouldn't do anything different so no point seeing them. I saw an oncologosit at a private hospital last week who also agreed and said that she would be following the same protocol with me. So it's nice to know I'm getting suitable treatment but the kidney issue does baffle me. I'm now looking at a chap in Hammersmith who might be more interested and have something to offer on the kidney. The oncologist last week suggested him so he's come with a good recommendation. We'll see. In the meanwhile my good kidney is operting at an above average rate and it's not uncommon for people to live long and full lives on one kidney, cancer permitting!!!  It is an indiscriminate attacker and it's horrible to think that we have something that is both part of us and an intruder that is trying to take us out. Sometimes it's easily beaten and people move on and then there are those of us that are more complicated. That does make us rare, but we are also amazing and most importantly we're not effin' dead yet!  Life force is strong within us.  Shelley xx

Hi shelly

Hope all goes well with the consultant, I have a funny feeling I may be on the wrong chemo as I have heard of those ones you mentioned for kidney cancer, I think it is time to talk to my oncologist again, so the royal marsden no go, hope you remaining kidney holds up ok, keep me posted if you will, as I am in the same situation as you and feel you may be getting the better treatment, or the correct treatment

Top up of gemcitabine tomorrow, just getting over combo from Tuesday, went for ore chemo blood test today, had to wait an hr, I complained and filled out a complaints form as I felt like *** from chemo and thought really!! Don't know if it will get me there but I was bloody annoyed.                                                               

Julie, my primary is unknown still, kidney is one of a short listed options and so the chemo I'm on is not necesarily what you might be on. If you want a second opinion ask your oncologist's secretary for copies of all of your reports and test results. Then ask your GP for a recommendation or just look at various hospitals near you to see if you can find someone you might like to talk to. You will then need to send all of your paperwork to the consultant so that they can study it before seeing you. My choice of second opinion folk were targeted after a lot of internet research of institutions and the professionals there. If you go private (the quickest and easiest way) it can cost you several hundred pounds for a consultation but you will get very detailed knowledgeable advice and an alternative route to follow if necessary.  Don't write off the Marsden, they turned me down because they looked at my papers and decided they wouldn't do anything different, therefore it was for my benefit to stay where I was (NHS treatment vs selling my remaining kidney to pay for private treatment!!).  I will keep posting updates on myself and wish you well for your treatment in the morning and ongoing.  Stay headstrong.  Shelley x

Thank you Shelley

The information is of great help, I am going to call the onc today as I feel I haven't really had any real answers and have so many questions, for a doctor to just sit on the end of an examination bed with pen and paper, no comp, no scans to back up his diagnosis for 2 mins and tell me the bad news isn't really good enough given the implications to my life, my follow up is in 6 weeks, not going to wait that long, I need answers, my family needs answers, all I keep saying to them is don't know, and I should know

Julie x