My Wife's Kidney Cancer

Hi Troy

I am so sorry to hear that your wife has been diagnosed with kidney cancer. I do know how devastating this news can be. It was the very same for me and my husband when we were told that I too had a tumour on my right kidney that had metastasised across my lymph nodes into my spleen and heading towards my lungs..

Surgery was not an option and I was put on a trial drug called sunitinib or (Sutent). It was explained that I would get several side affects. I was worried sick but decided to start on the tablets asap..

That was 8 years ago and I am still here, living proof that progress is working in treating KC. I lost some of my hair but not all if it, it turned white but I coped with that. The side affects differ with every patient so   I would say wait and see how things go and take it one day at a time. The oncologist and nurses will explain most of this before she begins taking the tablets.  I was very grateful to Macmillan and too Maggies for all their support. 

There is so much they can do now to fight KC so please try and stay positive.... I hope this helps you both. Please keep in touch and let me know how you are..

Kindest regards 

Mary D 

Hi Mary D

Thanks for the information.

Due to having a rarer kidney cancer I feel a little bit isolated and lack contact and advice.  I looked over the Kidney Cancer Scotland website to find any reference to upper tract urothelial cancer (UTUC), which I have, and could not find any references.   The emphasis on the KCS and Kidney Cancer UK site is all on RCC which unfortunately is not of much benefit to me.  RCC is essentially about biological and immunotherapy treatment, whereas UTUC is more about chemotherapy.

I really want to discuss matters with those who have direct experience of UTUC and its treatment.  A subgroup where I could do that would be great. 

Hi again

I'm sorry to say that it Would appear that I cannot mention some other support groups as I am breaking Macmillan rules for which I am apologising. 

I do hope that you get some answers soon.

Mary D 

Hi Troy 

I have no experience to offer which is similar to Jackie, I just wanted to say that I am so sorry that you find yourself here, I do know that you  must have so many questions and your mind must be racing at the moment. There are so many lovely people here that can offer you support and advice, and you will never feel alone on here.  My love to both you and Jackie, sending you both hug Xx

Dear Lionheart1965 and dedalus,

Sorry to meet you both on here although as you have seen everyone will do their best to make you welcome.  I had RCC which was removed through laprascopic surgery together with part of my kidney.  I am on a similar medication to Mary D in that I am on a biological treatment (pazopanib) which has held my cancer at bay for two and a half years to date.  I have suffered sore hands and feet, upset stomach, diarrhoea, changing taste, bloating and wind, and also have pure white hair but have avoided the bigger side effects which can cause the treatment to be stopped such as increasing blood pressure and changes in body chemistry.

There are two new immunotherapy drugs approved by NICE in England in the past twelve months although I am aware the system differs in Scotland and I am not sure what is available there.  It will be for you to discuss with your oncologist which is likely to be the most appropriate for you to use.

It may well be worth you posting questions in the Ask a nurse section click here, in order to have any specific questions answered.  I would also recommend calling the Macmillan helpline on 0808 808 00 00 which is available Monday to Friday between 9am and 8 pm.  They are really good and can advise you about things like employment and disability rights, but can also transfer you to a financial helpline which can advise you regarding the practicalities such as making a claim on critical or terminal illness cover on your mortgage if you have it or claiming welfare benefits.  Not having to worry so much about the financial aspect does not make the cancer any better but does get rid of some of the extraneous stress that you can do without.

I hope that you both get the answers that you are seeking,

Gragon xx

Hi Dedalus 

recently my husband got diagnosed with UTUC which was in upper calyx of right kidney, after laparoscopic radical nephroureterectomy with bladder cuff, we are in predicament whether we should take chemo or not considering he has solitary kidney now

hope you are in best of health now.

regards

Hi Dedalus

First, may I say I’m sorry to hear your news but also want to say how much success there has been over the past 10 years in the research and drugs for Kidney Cancer  

I myself have now survived for over 10 years and have many friends even longer.

My tumour couldn’t be removed so I went on trial drugs (oral chemo) and then Cryoabalation surgery. The tumour has been kept dormant now for 4 years and I go through regular check ups.

Other  friends like your husband had the kidney removed and then had the chemo and they have done well.  There are always risks and side effects and these are worth discussion with your oncologist  as no two people react the same.

You can also seek advice through KC UK where many others will give you advice along with MacMillan who are excellent..

Please feel free to contact me if you want  

MARY D 

Hi Dollyqueen

I can fully appreciate your dilemma concerning chemo as I had exactly the same feelings.   At one point I had almost decided I was not going to have treatment.   However, I am now 2+ years down the road, and I am glad that I opted for both chemo and radiotherapy.  As you will frequently read on this site it is not a 'walk in the park' but your husband will get through it.

It is a fact that the chemo is nephrotoxic but in my opinion it can and does improve survival.  The more toxic it is to the body generally, then the same applies to the cancer.  You have to be careful though and seek the monitoring and assistance of the team around you, during treatment.

As you will have determined from your research UTUC is one of the rarer and nastier cancers, but unlike RCC it can and does respond to chemotherapy.  Due to it being more rare, it is a Cinderella of the kidney cancers, but immunotherapy drugs are now being made available as second line treatment.

I assume from the fact of your husband receiving chemotherapy that the UTUC has not been confined to the kidney, in which case it is most important to very seriously consider systemic treatment.

I can fully appreciate how difficult a time this is for the both of you.  Hang in there, and good luck for tomorrow.  It takes a little time for the treatment to make you feel unwell, so have all your contingencies in place to help cope with the side effects.

Best wishes

Dedalus.

Hi Mary D

Thanks for your positive reply.

It was Dollyqueen who posted the question, but it was uplifting for the both of us.

Dedalus.

My apologies Dollyqueen. I do hope our positive response is helpful. 

Kindest regards 

Mary D