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My husband was diagnosed last year with Kidney Cancer

ayshea
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Hi my husband was diagnosed last M arch with kidney cancer which was contained in his right kidney. They removed the whole kidney and he goes for his scan every 6 months. I am constantly living in fear that it will come back as the oncologist said he obviously doesnt have good genes and theres a 30 -40 % chance of it returning. Im so scared of losing him and some nights i just cry and cry. I thought after 5 years of clear scans he would have as much chance of anyone else getting cancer though i now feel that this is just gonna get him in the end......Is it just a matter of when??? Im so scared and im sorrry if this post is so negative but i just cant bear the thought of life without him. Every little twinge he has anywhere in his body im convinced its back and when he was diagnosed I dont know yet how i didnt have a breakdown as spent every day hiding from him around the house just crying and the world just seemed like a very frightening place to be. Is it normal to feel like this ?

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    i hope my post hasnt put people off answering. sorry everyone its so negative

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    i hardly slept last night and just feel so down. read sumwhere on internet last nite that.kidney cancer never goes away.truly. aparently it lingers after the kidneys taken out and alwayd reappears yrs later else where. help....i dont know what to believe and im scared

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    It is normal for you to feel terribly worried - in my experience it is worse for family than for the person with cancer because if you do have it, you just have to get on with it.  The longer you survive the initial operation and subsequent treatment the better - even if you have to have more than one treatment.  My Consultant says that we should start looking at cancer as similar to diabetes - we have it and get treatment as we need it.  I have Ovarian Cancer and it will never go away either but I have had two lots of chemo and know I will have to have more - but I'm still alive after 5 years.  The first year I worried on a daily basis but that does settle.  Try to put a face on it for your husband's sake as well as your own.  It can be done.  Many cancers go into remission rather than are cured but people with cancer are living longer - there is no doubt about that.  There was an article about this in a recent Saturday Guardian magazine which confirmed what my Consultant said.  Could you maybe phone the McMillan Nursing Support?  They will happily come out to visit and may be able to offer some help around your particular issues.  My GP maintains it's worse for families because they feel helpless.  My husband and children have put on happy faces and that has helped me.    

  • Offline in reply to ayshea

    Hi asheaya,

    things are scary and difficult to understand when a person and their family are faced with cancer. Will your husband join the site and speak to people? It may make thinks easier to bear for both of you. The person with cancer has a lot of treatment to go through and quite often the partner and family feel numb and helpless. Keep searching other areas of discussion on the site and you may find some peace of mind albeit for a short while.

    I have been through surgery, chemo and eventually radiotherapy in a few weeks, plus numerous other appointments. I knew it was something I needed to do. When you go with your husband to appointments write down questions YOU want to ask no matter how silly they may seem. Go through these questions with your your husband, there may be things he wants to ask or did not think of asking. Most of all be strong for yourself and your husband. I know it may be seen as a cliche but that is what got me through the treatment so far. Sorry to go on a bit but above all be yourselves. You have not changed, it's just the circumstances that have.

    Take care, dindin xx

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    I'm so sorry, it looks as though Ayshea didn't stick around long. I hope she and her husband are all right.

    My husband has only just been diagnosed and has been told he has months, rather than years, to live. We are trying the "alcoholic haze" therapy and going out with friends tonight, but maybe tomorrow I'll start my own thread after we've been to see the consultant.

  • Offline in reply to MrsB

    Hi MrsB

    hope you continue to visit this site. I totally understand what you mean. It can be so difficult. Go out and enjoy yourselves, that in itself can be therapeutic.

    Take care Linda

  • Offline in reply to dindin

    Thanks Linda. We did go out and had a good time this evening. Right this minute my husband is phoning his oldest friend - a chum from schooldays - to tell him the bad news. Very difficult and very sad but tomorrow we go and confront the consultant. As my daughter syas, "Angry beats Scared every time!"

  • Offline in reply to MrsB

    Hi MrsB,

    great to hear that you and your husband went out and your daughter is right, angry does beat sad! I did get fed up with people telling me to "be positive" and decided to be my usual happy, moaning,complaining self. Just the usual emotional experiences seemed to work, especially if I had something to focus on.

    Hope everything goes well tomorrow.

    Linda

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    Hello...

    It seems Ayshea is no longer here so I really hope someone answers my reply.  Oddly you posted this the year we got married but now, in 2019 I’m at the start of your journey as you wrote about it above.  My husband was diagnosed with stage 3b M0 N0 renal cell carcinoma in April.  His tumour was a fair bit larger than his kidney, it was into the adrenal gland and for “fun”, he had a blood clot in the vein running through his kidney.  His surgery was apparently successful but they have a new way of staging so my staging above means his cancer is between stage 3 and 4, and there are no known metastasis or lymph node involvement. 

    My husband was told immediately that he had a bit less than 50% chance of living five years.  They also said his recurrence rate was at least 40% due to it reaching the adrenal gland. They insisted he try to qualify for a trial called RAMPART which is treatment by immunotherapy.  After jumping through every hoop to qualify, he was accepted and as it’s not a blind trial he was told how he was randomized.  He is receiving two immunotherapy drugs and a new scan every four months. He had his first infusion of each drug and a week later was in the hospital for extremely severe colitis. 

    My husband is a GP himself so he’s seen lots of people with cancer over the 20 plus years in practice. 

    I’m petrified.  His trial treatment is a year long and it literally says at the top of his information that it’s for high to highest risk patients. When he tried to return to work this week, his only other partner in the practice chose to take his SECOND 3 week holiday in three months. He went on one the week my husband had his nephrectomy  in May. ***!  Now, as they want my husband off work another two weeks , he’s being treated like a pariah. Keep in mind, he’s one of only two partners and only two full time doctors. Other help comes from two part time salaried doctors who refuse to work extra, and a nurse practitioner who wants higher pay all the while he’s feeling guilty for trying to live!

     

    Can anyone be boldly honest with me, do they know a stage 3 or 4 kidney cancer patient who survived past the 5 years.  Like you Ayshea, I’m walking on eggshells and for us it’s been onli

     

    any honest response would help me prepare either way.

     

    i hope, Ayshea, and her husband is okay. Keeping a positive thought for you all. 

     

    Thank you SO much 

    cari

  • Offline in reply to Cari67

    Hi Cari. I'm going through same journey as you. I'm still in shock. My husband is also in the medical profession. 

    How are you and your husband? Sending positive thoughts. 
     

     

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