Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

Results - Chromophobe Renal Cell carcinoma

Beenie1984
Posted by

Morning everyone 

As promised I said I’d let you know how I got on with my consultant yesterday. So it’s been diagnosed as a Chromophobe RCC, the consultant basically said it is very rare, but of all the RCC’s it’s typically the lesser aggressive. My tumour was 10 cm, not 13cm as previously told from the scans, and was completely contained to my kidney. 

They took 15 lymph nodes and there was no evidence of any cancer cells in them. He was extremely pleased and said that you couldn’t ask for a better position to be in. He said he was really pleased with how I was recovering, and basically that was it! He’s going to write to me and figure out how often he wants to scan me, as he said the Chromophobe tumour doesn’t follow the typical histology and habits of other RCC’s.  

Does anyone know anything about or have any experience themselves of Chromophobe tumours? 

I walked out of the consultants room with a sense of relief I really did and I’ve woken up this morning a bit bamboozled and overwhelmed, feeling unbelievably lucky as it could have been a very different story walking out of that room. 

I sort of feel as though I’ve been pushed out the door with a see you later, we wish you well and it’s all over now, sort of impression... dare I hope to dream it could be... I’m in a state of disbelief I think. The consultant wouldn’t give me a stage as he said it wasn’t really possible given that it’s very rare and not possible to give an accurate staging and it wouldn’t make any difference to me to know. 

Thanks for reading everyone x xx 

Gragon
Posted by

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

Beenie1984
Posted by

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 

Jo300
Posted by

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!!

Jo
x
Vulpes
Posted by

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.

Beenie1984
Posted by

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 

fl0ralW0man
Posted by

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. 

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Vulpes
Posted by

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. 

Vulpes
Posted by

Thank you floral, it does help.

fl0ralW0man
Posted by

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.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Beenie1984
Posted by

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 

Gragon
Posted by

Hi ,

It never fails to shock me when I hear how badly funded cancer care is in some countries.  After reading your post I googled about a bit to find out a more and I just read an article in Noted.co.nz  click here which brought it home for me.  When you have the NHS you just tend to assume that countries either have similar healthcare systems or private insurance that covers everything in the same way.  It shouldn't surprise me as I know that this is not how it works in the USA but I somehow thought that it was only there that a developed country didn't care enough to look after their own people.

We do have the occasional campaign to introduce a new drug but the argument is usually one over how long it is likely to extend someone's life for the cost.  There have been a few notable campaigns over the past few years.

Is there a specific reason why your husband is on Sunitinib as in the UK Pazopanib is the cheaper drug and I believe has similar efficacy with potentially fewer side effects?  Is Sunitinib more effective on Chromophobe?  If you click on my profile I have also been involved in a trial for taking treatment breaks in my use of Pazopanib which means for the past four and a half years I have only taken medication for six out of each 9 months.  I don't know if something like this would be possible in NZ but if so it would effectively reduce the cost by a third.  At the moment it is a trial so I don't know what the outcomes are in comparison to the group who took the same medication continuously but I am given to understand that the results might be getting brought together for publication soon although I don't know how "soon" this might be.  It might be worth keeping an eye out for the results if it could reduce your costs for the same outcome.

I'm pleased to hear that your husband is doing so well.  My son is now 14 and being around for him has also been my main motivating factor although I must confess it is the effectiveness of the medication rather than any superhuman willpower or positive attitude on my part.

You say you are not sure you are coping but I think we all feel like that at time and you appear to have more to cope with than most of us.  Do you have much support where you live, family or friends or even local support groups.  Regardless of that you are always welcome here.

love and hugs,

Gragon xx

Vulpes
Posted by

Hi Beenie

Yes, that does seem to be an indicator for Chromophobe, being younger that is, my husband was 47 when first diagnosed, but would have had his tumour for at least 5 years maybe longer. Clear Cell RCC seems to hit people a bit later in life generally.

I have done a lot of research on the internet, bought some medical journals to understand the terms, and really did a deep dive. But I’m not sure that’s a good idea to be honest. It works for me because I am a facts and figures and information person, but my husband does not look anything up and relies on me to tell him whatever I think is pertinent without too much detail. His way of coping is not to be overwhelmed with information.

There is truth in the adage, ‘don’t google!’ when it comes to medical stuff. But I have been forced to in the absence of any other avenues for support.

Unfortunately there is no support here in NZ. There is a cancer society, but other than being able to offer access to a coffee morning once a month (during working hours) there is nothing. If you have breast cancer or bowel cancer then there is. But that’s it really.

Interestingly, given that nearly all support services online are run by charities, Macmillan were one of only 2 that would accept me as a member because all the others will only service people within their communities / countries. I have spent months trying to find help, support anything at all really and been met with brick wall after brick wall.

But, I’m not complaining, as this site has been invaluable. It has helped me know how to talk to my daughter, have printable material for her teacher and school, given me links to other info etc. The big deficit is that none of it relates back to here in NZ.

It’s not only my husbands meds that are not funded. Because we are paying for his meds privately, something we have no choice in, we are essentially locked out of the government system. So no counselling, access to groups etc etc. And to add insult to injury, it also means that if my husband has a stroke or something as a result of the meds he is on, we will have to pay for treatment as the meds ar considered ‘unapproved’ even though they are not experimetal and are in fact the exact same meds he would be given if he had Clear Cell (paid for by the government).

I try very hard not to look into the swirling vortex of anger and despair that is my constant companion. I fear there would be no climbing out of that pit.

Vulpes
Posted by

Hi Gragon

Our oncologist suggested that in his research there was marginal evidence that Chromophobe responded better to Sunitinib than Pazopanib, but to be honest I don’t think there is much in it, and with being so rare a lot of the advice is does not amount to more than a thumb suck guess anyway. I am not sure about the cost difference though, that may be worth looking into, thank you.

Unfortunately there are no trials here for my husband to go on. But my husband is already on a 2 weeks on, 1 week off treatment  regime so we are buying a box of meds every 6 weeks rather than every 4.

We are immigrants here, so we don’t really have very much in the way of family and friends support, it’s funny, but it’s the time zone difference that’s the hardest, as when I just want to hear a loved ones voice, they are fast asleep on the other side of the planet!

thank you for being so welcoming 

Gragon
Posted by

Hi ,

I know what you mean about local support groups.  I am aware that the distances people think are reasonable to travel are determined by where they live.  I used to live in London and anything over ten miles was regarded as ridiculous, now I live in North Yorkshire and travel 22 miles each way for my regular hospital appointments and I know some online friends in Scotland travel hundreds of miles for their treatments.

After I was advised that the cancer had returned and spread I started to look for support.  I could find support groups about 20 or 30 miles away in each direction but mainly for breast cancer or prostate cancer.  I did find one that offered support to anyone affected by cancer but when I attended it was either people who had been cured or the relatives of people who had died from cancer.  I was the only person who would have been attending who was in treatment for cancer.  It also met in the early afternoon making it difficult for any one who was working for them to attend.  I might still have gone but I was advised that if I wanted to talk about my cancer I should talk to one of the group leaders as the idea of the group was that it was an opportunity to get away from and forget about cancer, not so easy when you live with it daily.

I did think about setting up a group locally but soon realised that if I did that then I would very quickly be put into the role of "expert" or "counsellor" and it would be difficult for me to access the support that I required so decided against it.  

The online community here is brilliantly inclusive, we don't all agree on everything but there is support, experience and the knowledge that you are not alone in this so I got a lot of my support here.  I've attended meet ups in London and decided I wanted to have the same opportunity in Yorkshire so have arranged a couple in York.  If you do get the opportunity to have anything similar it is lovely to get the chance to talk to others in circumstances similar to your own and compare notes.  I got some information about the online community from Macmillan and every now and again I take some to my appointments and leave it in the waiting area in the hope that it will increase the number of people in my local area who join the community.  I find it frustrating that even Macmillan don't appear to promote their own online community much so do what I can to encourage others to join.  Perhaps if you could get enough people to join in New Zealand you could arrange your own meet up.  Do you know if there are many others from NZ on the site.  You were probably aware but did you know that there is a group for People "Living with cancer outside the UK" click here to go to it.  You may find others a bit nearer to where you are?

I was a Community Champion on the site for a while and when I attended a Champs meeting in London I was lucky enough to meet Kacang who is another champ but she lives in Australia so not only can you be part of the community in NZ but can be an integral part of it.  She did mention that one of the benefits for her as a champ is that she can deal with a lot of the people who are struggling in the middle of the night in the UK as she is wide awake then.  I have a number of friends and relatives who have had the experience of the early morning/late evening conversation when they have a relative living in NZ or Australia and they always found it a bit disconcerting.

Wishing you all the best,

Gragon x