Results - Chromophobe Renal Cell carcinoma

Hi ,

I'm so pleased to hear that your oncologist had such positive results for you.  I'm afraid that as one of the "commoners" with Renal Clear Cell I know next to nothing about chromophobe but I'm sure that someone in this group will do so.

Hopefully the Oncologist will get back to you soon and let you know how often they will want to see you.

All the best with your continued recovery.

Gragon xx

Hi Gragon

Thank you for your reply ! Yes it certainly feels like I’ve been given the best possible news after such an awful time. It certainly has given me a boost, I feel a little numb at the moment to be honest. I’m not sure what I was expecting from the appointment - deep down you always worry it’s going to be a tough diagnosis to hear, so to be told, try and get on with your life and move forward with the best possible outcome we could hope for, is incredible ! 

X x 

Hi Beenie1984

So pleased to hear that you've been given good news. Like Gragon I'm plain old RCC so can't give you further insight there. My guess would be that you would be monitored over a period of years with the times between appointments gradually stretching out to 6 months plus. That's certainly how it worked for me after the nephrectomy - and for my friend who is now 7 years clear. I can imagine it's all a bit surreal at the moment. Congratulations to you!!

Hi Beenie

My husband has Chromophobe RCC. His original tumour was discovered in 2017 and like you, his surgery went well and was sent on his way with much the same as you say, a positive outlook. Although for us it was slightly different as the original pathology from his surgery said that he had Clear Cell like nearly everyone else. Our surgeon did not tell us stage or anything, but as I had taken photos with my phone of the scans on the computer when he discussed surgery options, I could see and researched and my husband was stage 3 at that point.

Almost exactly to the day 2 years later, his has recurred in his lymph nodes, they re did the pathology and said that he actually had Chromophobe and he is now stage 4 and on Sunitinib. He has completed his first three months and just yesterday had his scan to see if it’s working, we need to wait a week for the results, but we are hoping it’s positive news.

I’m not sure this is helpful to you, but wanted you to know you are not alone.

Good morning Vulpes 

Firstly, can I say thank you so much for replying in as much detail as you have, and secondly I’m so sorry your husband has had a recurrence. Goodness you must both be reeling. It’s certainly made me reel to read it.

The original biopsy pathology for me was RCC, and then last pathology after surgery was Chromophobe. When you say they re did the pathology recently does he still have chromophobe or CC? Are you angry they got it wrong ? Either way I suppose it doesn’t really matter as it’s recurred. 

How is he? I can’t imagine how you handle that? Makes me feel sick to think about it coming back in me. Sending huge love and thoughts to you x x 

Good luck Vulpes, re results. I am stage 4 RCC. I was on  Pazopanib ( same family as Sunitinib ) for 3 years n it kept things at bay, with minimal growth where it did recur/pop up afresh. I'm currently on a 3 year + treatment break and have CT n MRI monotoring scans every 3 months. Hope that helps. 

Hi Beenie 

They didn’t do a biopsy for the original tumour, he went straight in and had a key hole radical nephrectomy (his tumour was 15cm and weight nearly 3kgs I think) and they did the pathology then. We are in NZ and so things are quite different here because we don’t have an NHS. Our government only funds some cancers.

The first pathology report said it was Clear Cell RC, but when he had a recurrence in his lymph nodes, as they now wanted to treat him with meds, they did a new pathology report on the original tumour, which then showed his cancer was in fact Chromophobe, not Clear Cell.

The kicker for this, is that Clear Cell treatment is funded here, but not Chromophobe. Even though the treatment is exactly the same.

So we are having to find over 5 thousand UK pounds for every packet of 28 tablets of Sunitinib. 

We have had to subdivide our house and take in lodgers, sold everything we can, and hope my husband continues to be well enough to work full time, in order to pay for the meds. 

My husband is doing remarkably well on the Sunitinib. So far he has had minimal side effects, which is not to say they are not effecting him, but they are well within the manageable bracket. 

All we can hope for is that the meds are working, and that they continue to work for as long as possible. We have a 10 year old daughter and our main aim is for her to have her dad as long as possible. 

Im not sure I am coping. 

Thank you floral, it does help.

OMG, you have to pay for your own Sunitinib. If I'd had to pay for my Pazopanib that would've been it.

We in the UK may criticize the NHS but thank goodness it paid for my meds for 3 years (till my treatment break) and will hopefully pay for any future meds.

Hi there Vulpes 

Goodness you poor thing, that certainly sounds like you have a lot to cope with, and your husband. I don’t think there is anything I can say to you that will help, but I do want you to know what you are not alone. And that there are people on here who REALLY understand the emotions and feelings that you are going through. I’m only 34 and have an 18 month old little boy, so I do understand how terrifying that concept is to not be around for your child, and wanting to do whatever it takes to make sure you’re there for them. Your husband sounds like a total hero! And I’m glad to hear that the medication is tolerable. 

It is a great shame it has recurred, have they given you anymore information about the Chromophobe tumour ? Why won’t the medication be funded over there ? My consultant told me that it’s the lesser aggressive kidney cancer to have, his actual words were ‘if you were going to get any kind of kidney cancer, this is the best one you could hope to have’. He told me that if they do grow back, they’re often lazy and slow growing tumours. I just wanted to tell you that incase it may give you a little reassurance; I know each and every case is different and I’m so sorry your husbands has recurred. I desperately hope that mine won’t. Are there are support groups out there you can reach out to? Are you originally from the UK? Is there anyone on the Macmillan online service that could offer you some advice on how to get some funding ? 

Sending huge love across to you over there x x you’re not alone, remember that, and you’re doing an amazing job keeping everything together for your family x x