TCC / UTUC of Kidney (Renal Pelvis) and Efficacy or Otherwise of Chemotherapy etc

Hello Dedalos

First off I am so sorry to hear about you situation. I do recall my consultant sitting opposite me and saying this is not good and felt as devastated as yourself. I did so for a long time and still worry each time I get scopes etc.

In relation to your questions I was T2G3N1M0  on scanThe tumor and node was removed and future scans have showed nothing more thankfully. The lymphovasular invasion basically  means it has spread to the lymph node/s. If that has been removed and there are no others of concern then job done hopefully.

I asked about if there were other  nodes that became visible on scan what would be done and as I had had the chemo that was not an option again but the cons mentioned radiotherapy to any other nodes principally because they are close to major vessels so difficult to remove. Yes mine was 10 mm not cm sorry.

Re prognosis. My second opinion lady in Preston said 3 yrs with the caveat that some do better some not so good. this was her experiences. That was hard to take. - I was 52 at the time.

My remaining kidney - Im not sure what my egfr was - it does fluctuate and did when I was on chemo drop significantly I know at one point it was in the 50's and now resides around 60 ish. Your renal function will improve if you drink plenty of water as this will flush the toxins and will also help kick start the kidney so I aimed for around 3 litres a day. Water is so boring so I used to add something like an apple or elderflower cordial to it to help.

If your scan was N1 and thats been removed then take that as a positive - they usually have a scout around I think and take any they see as being problematic or of concern so that may help your thoughts.

Re positivity. - Mmm may folk say think positive - I couldn't to be honest - there did not seem much positive aspects to what I had read and what I had factually. Im not sure if it helps or not. What did help though was enjoying things like the garden, walking the dog,  often the tears would be in abundance and the overwhelming feeling of doom took over.  I do take citalapram now which does help calm the feeling and did at the time.

I wonder why they didn't do a staging scan before your op to include chest as that seems rather odd but maybe thats how they work where you are?

One thing I would say is ask for a macmillan key worker with a uro oncology background who actually knows the difference between  RCC & TCC he/ she may be a support to both you and your wife which is important as you are both in this situation.

Its hard but wait for your scan and see - try to keep yourself fit and healthy - remember the trip to the dentist if you start chemo and be prepared for the biggest fight of your life. Someone who was and Emergency department consultant once said the aggressive chemo and domestos nature of it may have done the job on the aggressive cancer - I don't know. 

I know when I had had my surgery and waiting for chemo we grabbed a few days in Jersey to reboot the batteries and give us thinking time and after we stopped chemo we went to Maderia for a week as it was October time and we wanted somewhere warm. it cost a fortune in insurances but it was a lovely break and is now somewhere we visit often.

I can't tell you it will be OK because its impossible to know but I can tell you that you have friends here which doesn't take away your despair but we have been there which gives us that uniqueness over those who tell us it will be OK who've never been in this situation however well meaning.

When is your chest CT? lets hope that shown M0 and nothing else for you then its getting fit for that chemo if its offered. Keep taking the H20 after your contrast too!

Very best wishes

C xx

Hello Carol

Again many thanks for your reply, and your kind and supportive words.

Our experiences are so similar in terms of feelings and doctors' comments.  A registrar who assisted in the surgery said in a very matter of fact way, "2 years survivabilty if the node proves malignant".  As you also found, the limited documents that are available mostly mentions 3 years.  The way I am feeling a the moment is like you were, a bit doom laden, so even 2 years seems good!  I note that we are on the same page regarding positivity.  Facts are facts, and I have always been a very pragmatic person.

I have a poorer prognosis being currently T3N1.  I am not absolutely sure but I believe that LVI means greater penetration of the tumour into the surrounding kidney tissue.  With penetration into the kidney sinus fat, all the literature also refers to a poorer prognosis and more likelihood of metastasis and recurrence.  

I am a  little frightened over the chest CT scan which I had yesterday.  This is because the consultant was always very positive over the outcome of each stage of the investigation, but has always been wrong.  Before surgery he said he would be surprised if the node was malignant, but it was.  On the CT scan he said the kidney tumour was small.  It wasn't.  He said the scan showed no tumour penetration. It had.  He says that there should not be any chest matastasis.

I don't know if I will be offered cisplatin and gemcitabine or an alternative chemotherapy like carboplatin because of my low EGFR in the remaining kidney.  I am still undecided whether I will accept it anyway.  It will probably depend on my further research, and meeting with the oncologist and discussion of survivability timescale. There are many things that concern me with chemotherapy, but one in particular is the high incidence, ie 20% of thromboembolism with carboplatin, for example. As already said it is a question of quality v quantity.  Your experience will also have a bearing.  I have to admit that in general I think I feel a bit cowardly concerning chemotherapy.

You are right re your comment on the sequencing of the chest scan, their two stage method has subjected me to an extra dose of contrast that will most definitely pull my EGFR down again.  Additionally, my last EGFR which could act as a base line measurement was on 9 May.  It was 42 then.  Up to and including my chest scan yesterday they did not arrange a kidney function test, yet I will probaby have a consultation with the oncologist quite soon who has to decide whether I can tolerate chemotherapy based on my EGFR!! I think this is either careless or stupid!  Fortunately I thought ahead and as a precaution requested a full kidney function test via my gp surgery the day before my chest scan. There is a possibility that my EGFR may have risen since 9 May.  At the least there is a more current and contrast free base line result to work from.

You mentioned the POUT trial previously.  I made a preliminary phone call, and it seems I may be eligible even with the malignant node, but since my pathology report, I will have to check again re the LVI etc.  The nearest centre to me is about 130 miles away in Edinburgh, but I wonder if it might be worth the repeat journeys to possibly get more frequent investigation even in the 'wait and see' arm.  What do you think?

You say to "ask for a Macmillan key worker with a uro oncology background who actually knows the difference between  RCC & TCC", as they are a charity. how do I achieve that?

Re your advice on staying fit and healthy.  We have always been very health conscious.  I have been, and cancer aside, am still really fit for my age.  I have never smoked.  I drank no more than 1 unit of wine a week, and nil now.  The only time I drink coffee is on holiday.  I have never taken pills or drugs other than vitamins.  I won't even take paracetamol for a headache!  I am not on any medication and never have been.  I have always kept my bmi around 25.  We have always eaten healthily, ie sufficient fruit and veg, limited red meat, with no fried foods or fried breakfasts etc.  We do try and walk briskly for 30 minutes x 4 to 5 times a week, but less so sometimes because of poor weather.  Other than more intensive exercise, all our lives we have literally done it by the book.  That's what makes it more annoying getting this rarer cancer!!!

I am currently trying to drink 3 litres of water to try and flush the contrast.

Thanks for your tip re the dentist.

xx

Dedalus,

Just taking this opportunity to wish you the best,

TJ

Hi TJ

Thanks for that. 

I was thinking about you too.

How is your treatment progressing?

Dedalus

Dedalus,

So far - all is well.  My 2nd infusion was completed w/o any noticable SEs.  Maybe feeling just a bit tired, so sleeping well.  My third infusion will be on Monday, and then if all is OK, I will be discharged and do the rest as an outpatient.

TJ

Good Morning

How are you doing? Just read both your mails thank you- Its oK  reliving it as if I can help anyone through what I can only describe as one of the most lonely journeys for want of a better word then thats OK. I say its lonely as it is only you that is going through it despite having loved ones close by.

Re the macmillan nurse specialist. In our hospital we have a range of clinical nurse specialists who are part funded by Macmillan to the NHS. Thy vary in their expertise - some are for breast cancers, lung upper GI etc etc.

We don't have one in my area but you may have one where you are - when you see your oncologist one of your questions may be what support is offered by macmillan nurses in your hospital. Are they community based or hospital based. Usually you find the community nurses are more 'generic' whereas the hospital ones are specialists. If you have the chemo then you will be in contact with the centre and the relevant staff regularly also.

We have a nurse specialist in urology but thats different as she does procedures such as scopes etc but is not a cancer specialist which is what you need or should have offered.

You sound like  you are similar to me and indeed cancer never even crossed my radar as I was fit & healthy and had never visited the Dr aside from a sick note when i broke my leg!

In relation to your T3N1 - The T3 means that is has infiltrated as you say into the kidney tissue itself which if that has been taken away then its used only as a predictor. What you don't seem to have been told is the G ( grade) This is what denotes the aggressive nature ( or not ) of the cells. The N1 denotes as you say the nodal invasion which is the lymphovascular invasion which again has been excised so hopefully no more LVI noted past scan.

It took me a long time to acknowledge that the T2G3N1 was all gone from the surgery but the N1 was my concern as if it was in one then has it spread which I can see are your concerns. her only time will tell and like you say the trial will offer some assurances that you are being reviewed However, your hospital should do this too as a course of management. There are European urological cancer guidelines they should follow and if they don't then Im afraid the bully tactics need to come out and go straight to the top. 

I was immensely fortunate. My cons is not a cancer specialist but he is a good man and I still have his mobile and e mail in the system so anything that worries me Im on to it- I don't bother with secretaries etc I just go to him and when I am due scopes/ scan etc, I call them and get my date and if Im fobbed off then I am onto him directly. 

The waiting is awful - I was initially diagnosed Dec then waited until march for surgery so empathise with yourself. Nothing I can say will change that or help but will be thinking of young hope for the best news for you.

Take care

C x

Hello again Carol

Thanks again for taking the time to respond to my questions

I have just found out that my EGFR prior to the CT scan with contrast last Friday has fallen to 40, which is below the Cisplatin cut off of 45 minimum. This means they would have to resort to the less nephrotoxic chemo which  you received, ie Carboplatin with Gemcitabine.

What the medical professionals omit to tell you is that a nephroureterectomy can/will detrimentally affect the healthy kidney. Hence my present reduced EGFR. Currently there is discussion that it is perhaps more appropriate and beneficial to give chemo prior to surgery when 2 kidneys can handle it better.

I meet with the oncologist in 2 weeks time, but I am still undecided as to the efficacy of chemo for what is termed locally advanced UTUC. Approximately 2/3 of the research papers I have read arrives at a conclusion of no prolongation of survival even with the preferred combo of Cisplatin and Gemcitabine. I am therefore still debating whether it is worth it. Of course there is your positive  example to consider Carol.  

I am a little concerned that I am experiencing occasional mild nausea and constant burping. I don't know if this is due to the associated stress or my low EGFR and poorer kidney filtration, or what?

We are maybe going to try and take a leaf out of your book and explore the possibility of going somewhere sunny before the meeting with the oncologist.

x

Dedalus, your Onc visit should be today, maybe tomorrow? - so please do let us know how it goes.  Wishing you the best!  TJ.

Hi Dedalus I am really looking forward to hear your success story with chemo, as my husband is scheduled to take chemo tommorrow.

thanks

Hi Carolucy,

I have been pointed in your direction by Dedalus, who has been so good and supportive in replying to my questions after my recent diagnosis and treatment.

I am just contacting to see how you are doing as I believe we had the same cancer? Grade 3 T2 urothelial carcinoma of the left renal pelvis.

Many thanks in advance