It is always hard going for the next CT scan and hoping every thing is ok. My husband had his right kidney removed in July 2015 and scans up until this August were clear. In Sept urologist said the cancer had metastised in his stomach and another tumour was growing behind where his kidney was. It is now stage 4 and he is on an immuno-therapy called pazopanib. After  just over three weeks he has had a better weekend as he has had every side effect possible. See the oncologist on Thursday.

Don't give up hope, there will be something out there for him. He has coped well with all he has been through and I'm sure the chemo must have helped some. What are they doing next? Keep positive and best wishes to you both.

Hello Chrissie05, apologies for the late reply... I am sorry to hear about your husband... It's such a horrible feeling when you think you're finally there and that it will get better once the treatment is over only to find out that actually, it isn't, and you have to go through it all over again...

We are not sure what the next steps will be yet as according to the initial CT scan the cancer is now showing to have spread to 4 different areas in the liver. Once they've done the PET scan and the MRI, they will have a better idea of whether it is operable or not.

Saying that, I emailed the oncologist on Monday as by then we had a few days to take the news in, and I listed a lot of questions (like how was the cancer able to spread whilst my husband was on chemo and why wasn't it picked up on previous scans and/or the blood tests they do prior to each chemo session). Following that, he has called us and suggested we go to see him on Friday so that he can talk us through it and answer our queries. I also believe my husband's case will have an initial review by the liver team today (prior to the scans) and so he may have a very early indication of what they want to do next when we see him tomorrow.

My husband says he doesn't want to know any more... Well, I guess we have to hey... 

Best wishes to you both also. 

Hi, so sorry to hear this has happened. Waiting for scans and the results is so difficult, my husband goes for his first scan tomorrow after 3 months of chemo for a recurrence of bowel cancer. He too has experienced spots in the liver not being noticed, its difficult to know why this happens and no one in the Oncology department wants to, or seems able to, give an answer. Fortunately, he is no longer experiencing pain so we are taking that as a positive indication that the chemo is doing something... It is good that you have been able to contact your husband's oncologist, sounds like an excellent way of dealing with anger and regaining some control and something I will try. 

Thanks for posting and best wishes to you both.

Very much the same has happened with me too. Just had a PET scan this week. I am reading a lot of information,be careful with your diet. I feel just fed up with it all, my first op was last March, after seeing 10 Doctors at the local surgery , none of whom seemed to understand my 4 months of vomitting.. Chemo last year , and this yeat here we go again.

Hi,

I understand your situation completely. We have a similar situation, my husband was diagnosed with bladder cancer in June, with small suspect spot on his lung and inflammation in his pelvic lymph node. Initially told it was looking positive and he would have 3 cycles of chemo to shrink the tumour and then an operation to remove his bladder.  After the 3 cycles we heard nothing and I had to contact the consultant myself regarding a re-scan because someone had omitted to book it in!. We were then told that the tumours were static and that the scan now showed more secondaries in his lungs, one at the base of his spine and another suspect pelvic lymph node, also that there was now no chance of an operation to remove the bladder with the primary tumour.  Like you we were relatively shocked and speechless.  We then had to wait weeks for next treatment to start, which is a different chemo and also, like you, feel that we have wasted months letting the cancer spread when maybe an operation right at the start could have stopped it spreading.  Also feeling very angry and lost...

Hope things start to improve for you, best wishes to you both x

It is so hard isn't it. We went to the oncologist yesterday and he just said keep taking the pills for 2 more months and will have a CT scan in Jan to see if they have done any good. I think my husband expected more and today he has been very tired and lethargic. Everything you read says fatigue is due to the chemo but my husband has MS as well and fatigue plays a big part of his everyday life. Not sleeping well at night doesn't help.

We just seem to be in limbo don't we. It is a waiting game and not a very nice game to be in.

Sorry to hear that so many of us are having the same issues... Our oncologist was very nice and agreed to see us yesterday to go through our concerns as we weren't really happy to have to wait until after the PET and MRI scans for our next appointment on 18th November and felt there were too many unanswered questions. Unfortunately, he told us that the tumour was just too aggressive and that this is why it spread to the liver despite the chemo. He has also said that he had a meeting with the Liver team the previous day and that, according to them and from what they can see on the CT scan my husband did 2 weeks ago, the cancer may have also spread to the peritoneal cavity, making the cancer terminal. We are still awaiting the PET scan to find out the full picture and then we'll have to see what's next but basically he told us that as chemo had no effect the first time, there are chances it won't work in the future either, even if they change the drug... Radio therapy is not possible due to the large area involved, and an operation is no good either, for the same reasons.

This is just so hard to believe! My husband was really doing so well, and he has no symptoms either. But we are only too aware that this may not last. 

We now need to wait until the PET scan and the next appointment in November to find out when treatment will start. Basically the doctor told us that we must consider quality of life too and as we had a holiday booked in December he said we should discuss in November whether it is possible to wait until January to start the treatment or whether it can't wait. But he said that given how aggressive the cancer is, then the prognosis is not good with 1 year, maybe less. To be honest we're just still in shock... 

So sorry to hear about the latest prognosis. I have a feeling something like this is going to happen with my husband as right from the beginning we were told it was an aggressive cancer. I almost wish we had waited to start his treatment as we had a holiday booked for Oct and cancelled, he was also feeling alright until the treatment started.

It is hard to come to terms with what they are telling you. You must both be shell shocked and so sad. I hope you can go on holiday and have a really good time. However I know you will also be worried about falling ill if abroad. Make sure the insurance will cover you if you decide it is possible to go.

Thinking of you both and sending lots of love. Xx

Yes, the waiting to find out is so so difficult. At least we were lucky that the oncologist was happy to meet us on Friday rather than having to wait until November, even if the news aren't good, it's still some news. I am dreading the appointment in November though, as it will be the results of the PET and we'll know how far it has spread. 

As for the holiday, well, I tried to call the travel insurance recommended by P&O and they quoted me £950 for 5 days!!! So needless to say that's not going to happen... I have however found on the forum the name of a couple of insurance companies to try and so I'll do that on Monday... 

In any case, I am still not completely sure about it as while this was supposed to be our "reward" for getting through a horrible year, it might well instead by our last holiday together. A bittersweet moment. My husband says he is not too worried whether we go or not, and I am not sure I am ready for this.

I hope you get the news you are hoping for at your next appointment in January. The MS condition is clearly not helping either, it must be very difficult for you both. Are they using a different chemo than the one they did for his kidney or is it the same one? Andy will have a different one as the Folfox didn't work - I can't remember what the name of the other one is but the oncologist said there will be a daily injection to go with it (not sure what it's called either - sorry. I didn't take notes and I guess we'll be told properly in November anyway). 

Sending you good vibes and strength. 

When they took his kidney out in July 2015 they thought he was clear and came home with no drugs.He basically had 14 months before we found out the cancer had spread  so he is stage 4. It has metastised in his stomach and in the abodomen where the kidney was. He is on an immuno- therapy treatment, Votient, as advance renal cell cancer doesn't respond well to traditional chemo, so he takes a pill everyday and is on it now until we see the oncologist in the new year. It still gives him a lot of side effects. Latest nose bleeds and abdominal pain and food tastes like cardboard he says.He is fatigued all the time and doesn't want to do anything, so we are in limbo.

We used All Clear insurance you could try them. We were also cruising- going to the Canaries with P and O.

Best wishes

Chrissie x