Josie and Kate, Macmillan cancer information nurses

Cancer information nurses Josie and Kate joined us in the chatroom to answer your questions about kidney cancer. Here are all the questions and answers from the chat. 

If you have a question, you can speak to a nurse like Josie or Kate by calling freephone 0808 808 0000 (Monday-Friday, 9am-8pm). 

I am 55 and was diagnosed with metatastic renal cell carcimoma (clear cell) in August 2012 . I had a laproscopic radical nephrectomy in the October. The tumour was 11.5cm and I was told possibly been growing about 10 years. I have lung mets, which were measuring 3, 2 and 1 cm and I was told that I'm PT3a. I made a really fast recovery from the operation and commenced on the STAR trial on Sutent with treatment breaks. 

I commenced on 50mg a day 4 weeks on 2 off and after 12 weeks  and got an excellent shrinkage of 33%, but after a further 12 weeks the smaller met had grown slightly but was told I could have a 12 week break. I had a wonderful summer, with two holidays to Greece, but when I went back for scan results the tumours were bigger than when I started treatment. Now after another 12 weeks they shrunk 14% but are still the same as when I started treatment and I feel I maybe shouldn't have had the break. I have had to be reduced to 37.5 because of the horrendous sickness, no appetite and fatigue. I’m still so grateful that they don’t seem to have grown or spread. I would like to know how many cycles other people have had before they had to come off Sutent? 

Josie: This treatment is used to control the cancer. The number of cycles varies from person to person. You can find out more about other people’s experiences in our kidney cancer group

I have stage 3 RCC, diagnosed on Christmas Eve. I await an open nephrectomy. I’m sooo tired every day, and I’m finding it difficult to eat (no appetite). I will probably have Sutent after surgery. Will I ever get any energy back? 

Kate: It is not unusual to feel tired when you are waiting for treatment. For most people, after recovering from surgery your energy levels should increase. It can take some time for this to happen. 

Sometimes with Sutent you can experience tiredness, but how you will feel can differ from person to person. Some people find that they can continue working after recovery from surgery and taking Sutent. 

You might find it helpful to have a look at our information on coping with fatigue

Another chat guest: I am tired when I take Sutent in the 2nd, 3rd and 4th week, but I pick up after that. 

Does anyone know of a kidney cancer support group my husband and I can attend in the Southend area?

Kate: You can use our website to search for support groups in your area. Also, have you had a look at our kidney cancer group on the Online Community? 

I was diagnosed with TCC in 2010 and had a nephroureterectomy. I have regular cystoscopies and scans as I believe the incidence of recurrence of TCC is quite high. Is this correct? I also have chronic lymphocytic leukaemia which may predispose one to solid mass tumours 

Josie: About 3 out of 10 people who have had TCC in the kidney will develop a bladder cancer. Regular cystoscopies will pick this up. 

Thanks very much. The double whammy of the TCC and CLL was hard to cope with. I had chemotherapy for the leukaemia but its incurable and I will need further treatment. My Macmillan urology nurse performs the cystoscopies and she is brilliant and helps to make a traumatic procedure much more bearable!

Josie: That’s great that your nurse is so supportive. I’m sorry to hear that your CLL is incurable. You may be interested to know about the Living with Incurable Cancer group on our Online Community. 

I had my right kidney removed in August 2013 and got told I have papillary type 1 with clear cell and translocation RCC. Is it unusual to have all three? I can't find any info on translocation - do you know where I can find some information? 

Kate: It is unusual to have all three but this can occur when cells mutate and divide. There is information available but it pathology-based and academic and not easy to understand. Do you have a specialist nurse or can your doctor explain this? Or give us a call on 0808 808 0000 and one of the nurses can talk you through it. 

What can you tell me about Interleuken II and is this a possibility after being on Sutent? 

Josie: This is usually given first-line. The typical patient is young and fit with a small amount of cancer spread. It requires a hospital admission and is only used in a few centres in the UK. 

Can I take vaccinations for holidays abroad while on Sutent? 

Josie: It would be a good idea to check this with your consultant first. 

There is some general information about vaccinations on our website.

I have metastatic spread of kidney cancer, there are currently three nodules - one on my lung, one on in the left kidney bed (the kidney was removed in 2007) and one in my groin. My local super MDT decided that surgery was not an option. The reason my oncologist gave was that the modules were on either side of my diaphragm. Is it worth having a second opinion on this decision? I am struggling with the side effects of Pazopanib, although after an initial CT scan the Pazopanib appears to be being effective. I don't want to upset my oncologist as she has been really kind but at the end of the day it's my life we're talking about. 

Josie: You are entitled to a second opinion on the NHS. Your oncologist will not be upset, as this is commonly done, although it would be unusual to operate on all three areas of cancer.

We’ve got some useful information on our website about getting a second opinion

Where can I get information about trials for kidney cancer? 

Kate: Cancer Research has information about current research and clinical trials for kidney cancer

You can also phone our helpline and speak to one of the nurses about clinical trials on 0808 808 0000. 

I am 18 months post nephrectomy - pRCC T1b. I’m all clear so far, but I've developed a lump (the size of a little finger) in my tricep area, which is sore and keeping me awake at night. Do you have any experience of kidney cancer developing in this area? I'm hanging on for my appointment with a General Surgeon. My Urology nurse did not seem worried when I phoned. 

Josie: It’s good to hear that you are all clear so far. It would be very unusual for this lump to be connected to your cancer but you are doing the right thing getting it checked. 

It’s quite common to worry about cancer returning. We have some information on our website about coping with worries and uncertainty after cancer. We also have some information on coping with sleep problems.