Newly diagnosed, age 30 - T3a RCC

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Hi everyone,

I had been stalking this forum for a few weeks before making an account a couple of days ago and finally making my first post.

I turned 30 years old on the 3rd April. I'll have been married for 5 years this Halloween. I have a 12yo son, 2 step daughters (11yo & 15yo) and my youngest son is only 2yo; he's an IVF baby and is still breastfeeding at night time.

A quick summary of how my diagnosis came about:

- March 2024, visited GP complaining of abdominal/back pain, extreme tiredness and bloating. Assumed my endometriosis which I'd had laparoscopic surgery for in late 2019 had returned. Referred for non-urgent pelvic ultrasound.

- 8th May 2024, attended Montagu Hospital alone for pelvic ultrasound. Radiographer discovered a large mass, originally thought to be on my right adrenal gland. Referred for urgent CT scan.

- 20th May 2024, attended Rotherham Hospital CT scan of chest/abdo/pelvis with contrast and focus on adrenal glands. CT results found a 7.6cm x 6.8cm x 5.5cm kidney tumour which has spread into the renal vein (T3a N0 M0). Referred to Urology.

- 6th June 2024, Urology appointment. Officially told that they are confident that it's Stage 3 Renal Cell Carcinoma from the imaging, no biopsy necessary. Referred to Royal Hallamshire Hospital in Sheffield to meet with surgeon within the next 2 weeks.

The Urologist wasn't sure whether the surgery will be laparascopic or open yet, but he was fairly confident that it will be a radical nephrectomy of the right kidney because there is very little kidney left with no tumour on it. He was not sure whether I will need any treatment after the surgery to make sure it's all gone. I'm now waiting for the appointment with the surgeon and then hopefully a more definite plan of action will emerge.

It's been an absolute blur since the day of my ultrasound at the beginning of May. My husband's 40th birthday was in May and this news obviously put a massive dampener on any celebrations. I finally decided to take sick leave from work a few days ago, on Monday, as both the physical and mental pain and exhaustion were getting too much to cope with.

Any words of wisdom or support would be much appreciated. I am obviously very worried about how my 2yo will cope with me being in the hospital, when the time comes, as he's never been away from me for even one night.

Sending positive vibes to all,

Violet34

  • Hi Violet

    Thanks for sharing your news. 

    My timelines are similar to yours but with a small tumour and I'm hopeful for a partial nephrectomy - the consultant at Arrowe Park thinks this is possible but will be a challenge due to the mass growing into my right kidney. I've been given a 4-8 week timescale for surgery.

    It's tough isn't it. I've found the stories on this forum really useful and a place I come to when I need to think with those who understand. 

    Not sure I have words of wisdom but I offer solidarity. I'm following the advice of my Drs who have assigned a pre-habilitation worker to support with fitness before the operation. I've found this a useful thing to focus on. It feels like I'm in control of a small part of a bigger situation that feels very much out my control.

    Best wishes

    MW

  • Hi violet , I’m also a young kidney cancer patient . Although mine has spread . It’s hard to get your head around it took me around 3 weeks to get in a comfortable head space . I’m now back to the waiting game to start immunotherapy. Hope you get your head around it all soon 

  • Hi Violet. I am having a partial nephrectomy due to a small mass on my right kidney. I also have a smaller one on my left kidney. I’m sending you positive vibes. I am probably older than you. My kidney mass was found incidentally as I was having a CT colonoscopy. They thought that the cancer had spread to my bones but they have ruled this out.

  • Hi Violet34

    So sorry to read your account of your cancer discovery. I hope your anxiety levels are manageable, and that you have support from friends and family.

    I have no direct experience of breast-feeding, as I did not have children, and am much older than you! But your questions did make me think....

    As you will almost certainly be having surgery, and in hospital for a while, then you may need to start now on weaning your 2 year old? Obviously, you could express your milk before you go into hospital....am I right in thinking it can be frozen?

    But if you are on medications, such as anaesthetics, painkillers, maybe immunotherapy in future, you will, I guess, be advised against breast-feeding, even when you are recovering at home. Most people, post-surgery, need to use painkillers for a while.

    Maybe you could discuss this with one of the nurses on this website?

    You will clearly want your stay in hospital to be as stress-free as possible for your little one. I'm not sure if anyone else in this forum has been in this situation, as most people here at the moment seem to be older.

    Maybe you could have a 'trial run' and go away overnight, before you have surgery, to see how your child reacts to you not being there? Or arrange for your children to go and stay with grandparents for a night or two, see how the 2 year old copes with this?

    No doubt you have been thinking all this through, and sorry if I sound bossy! It's just an unusual problem, but there will be people who can help.

    I hope all goes well at your appointment with the surgeon

    Candysmum

  • Hi, I am also T3 and had a radical in March . It’s an awful lot to get your head around and I also was in a blur a lot of the time. I never even felt I was in the same room as my family at times . It’s taken four months for me to be ‘ back in the room ‘ . It’s still tough but only time will get your head around it.  Good luck 

  • Hope you are feeling a bit better about things 

  • Thank you everyone for your kind replies. I've had a hectic weekend (kids' parties etc!) and I'm absolutely exhausted. I will reply individually to everyone tomorrow at some point. Thinking of you all. 

  • Hi Violet,  

    Thank you for sharing,  In 2018  I was told I had stage 3 Ta RCC (high risk) and it also had spread into the renal vein and I also had a tumour thrombosis in my inferior vena cava I had a radical nephrectomy after recovery I got back to work and life was good. Just after the first lockdown I was told it was back in my left lung again I had surgery and got back to work and living life then in 2021 it came back in my right lung again had surgery but then I got the chance to medically retire from work so did that.

    In October 2023 I was told it was back again in my right lung and now I’m under Oncology, as it stands I don’t need any treatment as the metastatic deposits are growing very slowly I have scans every 6 months to check for growth.

    After going through and now living with it I feel lucky to still be here 6 years on from the first diagnosis.  

    I can relate to how you feel and what a blur it is in the beginning just try to stay positive and take one day at a time easier said than done trust me I know but you’ve got this girl just go and kick it’s backside.

    Sending positive vibes and hugs.

  • I must admit I've had a total mental breakdown today.

    I still haven't heard anything about when my appointment at RHH will be, so I called them directly and they haven't even had a referral through for me. They said I need to contact Rotherham Hospital and tell them to send the referral through (again? If it was ever done in the first place). I have called the number for my CNS, no answer, left a voicemail. I have called the Urology department, no answer, left a voicemail. Called the main switchboard and asked to be put through to the Urology secretary - recorded message to say she only works on Thursdays and Fridays. Called my GP and they're closed today for training. Called the Macmillan helpline and it was closed for staff training. I have ended up calling about a dozen different numbers and not been able to speak to one real life person.

    It has absolutely tipped me over the edge. I am in so much pain, physically but also mentally, I am so scared that the cancer is going to spread and no one I've seen so far at any of the hospitals/GP practices etc seems to have a clue what they're doing or give a **** about me getting the treatment I need. My 2 year old is going to be left without a mother, either because of failures within the NHS or because the stress of the whole ordeal is going to be too much for me.

    I really just don't want to be here today, it's all just too much and I feel completely and utterly alone and at the mercy of incompetent idiots.

    Sorry for being so depressing.

    Violet

  • Please don’t apologise for how you’re feeling it’s totally understandable I’m sure you’re CNS will get back to you I know if my CNS is busy in her clinics and I leave her a message she does get back to me also phone the urology secretary when she’s back at work tomorrow also let them know about your pain/discomfort. Just keep badgering them I know how terrifying it is about the thought of it spreading I’m on my 3rd recurrence and I’m still here still living life to the full.

    Just try to take it one day at a time, but I know you will be all over the place worrying, hopefully you will get the referral as soon as and see the consultant and plan put in place for surgery/treatment.  Just keep badgering them.

    Just remember you’ve got this. Xx