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

Hello Dedalus, I only just came across your posts today having recently (post op/check ups) joined the forums for both bladder and kidney cancer. 

Hello Ian

Thanks for making contact.

It would appear that we are both in the same caegory of UTUC cancer, but obviously a different location.  I think I am right in saying that the treatments would be the same.

I have not yet been told that I am to have chemotherapy or some alternative, I am extrapolating from what I think is the usual procedure for cancer that has metasticised into surrounding tissue or regional lymph nodes.  I want to be prepared for the post surgery follow up with the consultant, should my lymph node that was removed, be malignant.

Matters have moved forward since my original post.  On Saturday I received an appointment letter to go for a CT scan.  I was told I am to be admitted to a urology ward as an inpatient.  There was no mention of the path lab results, but a further CT scan and admittance as an inpatient just 6 weeks after my RNU does not I fear, augur well!  I won't know what the pathology result is and what is planned until I telephone on Monday.

The surgeon said that he had aimed for curative surgery.  The tumour in my renal pelvis was only 24mm and from the CT, seemingly not invasive, but the fly in the ointment is this damned swollen retrocaval lymph node!

I have been scanning the Internet for research papers on 'adjuvant chemotherapy for locally advanced upper tract urothelial carcinoma' There is not much to be found, but one paper said there was no significant survival benefit whilst another said there was an 11 month improvement in survival.  Generally the consencus comments were that of not much benefit.  Even if there was some benefit this has to be matched against the toxicity of the treatments and what they can do to your quality of life in the remaining time.

I have not as yet dug down beneath the surface on this article, and it is the Daily Mail, nevertheless there is some interesting information.

http://www.dailymail.co.uk/health/article-2643751/Most-doctors-terminally-ill-AVOID-aggressive-treatments-chemotherapy-despite-recommending-patients.html

If my deductions are correct, I may only have until the end of next week to make up my mind as to whether I will accept chemotherapy or whatever.  At the moment I am about 90% against.

It is almost impossible to find any real life experiences with UTUC and chemotherapy etc.  I would really like to hear about any positive outcomes.

Incidentally there is someone in the Bladder Group called TJrandom who I believe is Japanese, and located in Japan, who appears to have a very similar UTUC presentation as yours.  He is currently going through neoadjuvant chemotherapy in advance of surgery.  It may also be worthwhile communicating with him.

Hello and so sorry you are here with us with this rarer form of KC.

I had TCC renal pelvis provisionally diagnosed in 2010 then finally had my surgery in MARCH 2011. From diagnosis to eventual radical nephroureterectomy and bladder cuff repair meant I had nodal mets in the retrocaval nodes so with you on that one!

Due to nodal mets and my pathology ( T2G3) as quite aggressive, I was offered chemo. I had Gem Carbo I think and I have to be honest it was not nice, nearly killed me and was abandoned after 2 complete and 2 1/2 complete cycles.

Since then I have had regular scans/ cyst'sos and I am very fortunate all has been well with currently no evidence of the cancer.

I saw a lady in Preston ( Ms. Birtle) who is currently looking a the efficacy of chemo with TCC of which the research is very non committal and quite grim depending on stage/ grade. This is the POUT trial if you want to take a look.

I have to believe that the chemo did help in view the aggressive nature of my pathology but the jury is out. There are not many  papers and much of the research is dated. We are in a small group unfortunately. Best advise - ask the questions about the research, the trials, ask for a second opinion and then weigh up what you find against your particular path status as that may make the difference. Being rare means less research but you are an individual and the stats are only that - stats. You are not a statistic. Hope this helps little. All the very best and will be thinking of you.

x

Hello Carolucy

I have been trawling various forums for weeks to try and find a fellow traveller, ie someone with the same diagnosis.  I was really surprised and pleased to get your response, and also one that offers hope in terms of survivability.  Seven years from diagnosis is marvelous, and particularly if I have read things correctly, your chemotherapy seems not to have been completed.

I have some questions which I hope you would not mind answering.

How soon after surgery was your chemotherapy started?

Was it you that terminated the chemotherapy, and was it purely because of its grueliing nature ?

Cisplatin and Gemcitabine seems to be the chemotherapy of choice for UTUC and may also have been the case in 2011.  Did you receive Carboplatin possibly because it was considered to be less nephrotoxic?

You mention nodal mets in the plural.  Did you have more than one, and were they removed along with others at surgery?

Did you have spread anywhere else?

Were you/are you into alternative therapies like cbd oil, supplements,  vigorous exercise, vegetarian diet etc?  I am trying to understand your successful recovery, over and above the conventional chemo.

I agree with your 5th paragraph.  Being so rare there is a paucity of research papers and some offer quite a depressing prognosis. However, I have managed to find a couple of contemporary and interesting ones, but as you say some are vague and keep stating the need for further research or refer to the pending POUT trial as the future provider of a more definitive analysis.

I have not received the pathology report yet, concerning the kidney, retrocaval lymph node and other tissue, although I believe the urology consultant may be discussing it with the MDT on Tuesday.  Apparently I am to receive a CT scan of my chest on Friday so that they can determine the specific staging.  I assume that this is to determine whether I have any lung mets.

Considering its brutality and potentialy significant side effects I am still so undecided as to whether I should have chemotherapy.  The research papers I have read are not that positive over the benefits.  Yet your experience makes me think it could possibly be worthwhile.

It boils down to the fact that if you have no chemotherapy then you are essentially into the realms of palliative care, whereas chemotherapy perhaps offers some hope of remission.  It is so so difficult!

Thanks again for responding to my post.  I will gratefully receive any advice and further comments etc you may care to make.

I wish you well and continued good health.  

x 

I have to say I feel a little out of my depth here and that I dipped into this arena having had a fast track solution provided.

Hi Ian 

You shouldn't worry about feeling out of your depth, the contributors on this site are really helpful, and willing to assist where they can.

Thank you for sympathetic comment. re the chest CT scan.  I expect you are correct about NHS regions doing things at different times.  As you say it was a bit scary

I hope you have been able to make contact with TJrandom.  His situation in respect of ureteric TCC is possibly not too dissimilar to yours, although he is having neoadjuvant chemotherapy prior to his surgery.

Those with UTUC are a pretty small group, so keep in touch.

Ian-Y and Carolucy,

Hi there, and so sorry to have to meet you here. I do echo Dedalus in saying I am very surprised and of course very happy that you, Carolucy, are still here to share, since from what I have recently read – you seem to be way off of the charts-successful. That gives me great hope.

My TCC/UTUC 22mm tumor is 2/3 down from the R kidney/ 1/3 up from the bladder, and has squeezed off that ureter as a donut might (closing the donut hole). That kidney and adjacent fatty tissue was very swollen, leaving out surgery as an option, given the need to find a clear margin. I also have an anterior mediastinum growth (a possible met), and renal lymph nodes affected, but no lung, bone,or brain mets detected.  

I have started chemo (Gem and Nedaplatin (Cistaplin-like)), with my first infusion on 4/18 and my second 4/29 (Gem only, yesterday, 12 hours ago), with a plan to continue for 4 to 6 cycles, with each cycle being infusions for three weeks, then one week off. (Each of those infusions taking just a few hours as an outpatient during a single day in those weeks.) My first two infusions are in-patient to permit closer monitoring for SEs. So far I have not had any negative SEs and have maintained appetite, general good feelings, etc. At 6 weeks or so, a follow-up CT should provide evidence of chemo efficacy or cause a change to treatment.

My first indication came from a routine 6-month gallbladder monitoring echo and CT on that day (6 April `17), followed by a contrast medium CT and cystoscopy (nothing found) on 1 May, a PET-CT on 12 April, and a CT-guided biopsy on May 26<sup>th</sup>, with pathology report not yet available. My prior gallbladder echo (6 Oct `16) had showed all clear – so during those 6 months, from zero to serious.

I am on the Japan NHI and am slowly building my own medical J/E dictionary to support my research and communication both here and at SmartPatients (a largely US population).

Please do reach out (here or on PM), and share any information you come across, as it will be most welcome. With research, I am trying to stay 2-steps ahead of oncologist conversations so that I understand what they say, and can ask appropriate questions.

I am hoping for the best for both of you.

Dedalus, thank you for your clear communications and pursuit of options. I am of course anxious and may be overwhelming my oncologists a bit, since doctors here do not normally get badgered with questions and handed research printouts, but I will persevere. I am emboldened by mention of the UK interdisciplinary approach and care-nurse communication, both of which seem lacking, or maybe just hidden here.

TJ

Hi there, 

No worries - ask away - I will not have all the answers but having been there and knowing how scary it all is Im happy to share but remember we are all very different.

In relation to your questions. My chemo started about 6/52 after surgery. I had the op in early March and started just after the May bank holiday. I was offered Gemcarbo because of the nephrotoxicity of the cisplatin therapy as you rightly note.

In relation to the chemo itself - all went OK though I did develop a temp on the first round and was treated in ED and allowed home but then I developed a tooth access - be very careful with your dental hygiene as if you do have anything latent, it may cause you problems when you are immunosuppressed so a visit to the dentist is worth it prior to starting.

The issue started initially with a 'rash' development after my 2nd cycle which turned out that my platelets were dangerously low so had plasma transfusion. I then continued with a reduced treatment regime but had the abcess and the chemo had basically wiped out my blood picture so neutrophils and platelets were off the scale in a very negative way. This meant admission to hospital and more transfusions of blood this time as my haemoglobin had been hit.

We persevered as much as we could but my blood picture was so disrupted that the chemo was stopped by my oncologist and I thought that this was a death sentence he had given me.

My surgeon was fab and has kept an eye on me by scanning etc and cystoscopies and like I say, I have been very fortunate and thank my lucky stars every day. 

I have no illusions though that it won't come back though thats a hard thought.

My nodes were 'swollen' - 10 cm for one retrocaval and not sure about others - Im also not sure how many were removed in surgery the the 10 cm was +tive for cells.

CT scans of chest/ abdominal /pelvis have not highlighted anything so either they were removed or the chemo did something to them. Im not sure. 

Re diets and alternative therapies - I just try to be reasonably healthy, I swim usually a couple of times a week and walk daily with the dogs. Im back at work though part time as the chemo really did wipe me out for almost a couple of years in reality. Would I go through it again - probably if I thought it might help but the jury is out in relation to the efficacy on TCC.

Try to put the research into context if you can and yes there are some more positive papers around.You may find you tolerate the chemo if its offered.

Im not sure if you have a mac nurse as a key worker who has a knowledge of this rarer presentation. I didn't and that made life very hard though I do have a friend who is a macmillan community nurse who I couldn't have managed without.

Hope my response helps a little and feel free to mail again if you have anything else or just want to sound off, Thats was great about the forum - we are there - we care and we understand- if you don't have the disease its difficult to comprehend even for those closest to you.

All the best

C x

Carolucy, 

Thank you so much.  That gave me a much better long-term picture of what might lay ahead.  I am trying to be realistic and fortunately am able to read the various relevant articles with understanding (with the help of google, etc.).  Still very early days for me as I undergo pre-op chemo infusions.

I certainly do hope that yours does not return...  My very best to you,  TJ

Hello again Carolucy

Thanks for answering my questions.  I really appreciate it.

I received my pathology results today and they were abysmal.  I am still a little bit in shock, because although I was prepared for the worst, I was hoping for the best.  I requested and received the results from the urology consultant over the telephone so haven't got all the data in front of me.

Like you were I am now pT3N1 and waiting for the M figure after a chest CT. The retrocaval lymph node was malignant.  The tumour in the renal pelvis is 20x12x14.  The consultant said it ws larger than anticipated so I am not sure if that is mm or cm. The cancer is aggressive and has penetrated into the sinus fat but not into the renal parenchyma.  I forgot to ask the grade. I have (LVI) Lymphovascular invasion, which I understand results in an even poorer prognosis.

In my remaining kidney the EGFR is inexplicably 42/43 which may preclude chemotherapy, or the chemotherapy they prefer.  I am also to have a chest CT scan on Friday and they are insisting on using contrast which will reduce my EGFR further.

Not the results I was hoping for!

Carol. I hope you don't mind me asking more questions.

I am not sure at this stage if that is exactly the same diagnosis you had.  Did you have (LVI) lymphovascular invasion?

When I read your profile there was a plea for positive experiences with TCC due to the negativity of the doctors.  What prognosis did they give you at that time?

I noted that you had Carboplatin because it was less nephrotoxic.  Was that because your remaining kidney had a reduced GFR?  Can you remember what your GFR was?

I will be allocated to an oncologist soon, and I am still undecided on whether I will accept chemotherapy.  It all depends on the chest scan, and what their survivability prognosis is, with or without chemotherapy.  If I just have months and the chemo will add just a few more, then considering some of the adverse treatment stories on the forums, quality may be more preferable than quantity.  However, there is your success Carol, yet there again there are others with TCC who did not fare well, which you may have direct experience of on this site.   It is so difficult.

The consultant believes that positivity helps  I recall that I read something years ago where it said that research had been done into positivity versus negativity in cancer patient, and neither contributed to survivability.  Were you positive?  I assume that if you were positive that vanished when they decided to stop the chemotherapy!

Surprisingly you said that your retrocaval lymph node was 10 cms which is really large.  Did you mean 10mm?

I tried to get a handle on why you have had such a good result, by asking about lifestyle etc.  It seems that you have a moderate one and do nothing out of the ordinary  You don't take suplements etc.  Somethings seemed to align to cure you and it would be interesting to know what.  It is absolute speculation, but I wonder if the bllod transfusions you had led the white cells or antibodies etc in the transfusion, to re-boot your immune system.

As I said I am a little bit shocked and doom laden today.  Like your initial plea in your profile, I am concerned with survivabilty and wonder if the doctors can give me an indication of approximately how much time I have.  As my wife keeps telling me I am a bit of a half empty person and can't help thinking it may be single figures.

I have always been a very pragmatic and organised person.  My wife left all the organising and I.T. side of things to me.  There are so many aspects of our home life that are computerised, even the control of our heating system, that I will have to get my wife who is a bit of a techno phobe up to speed.  At east that will hopefully divert and occupy me over the next few weeks and months.  I do worry about her. We lost our only adult son a number of years ago, and waht lies ahead is going to be really difficult for her.

This was our 50th wedding anniversary this year, and I recently cancelled our nostalgic month's tour of France.  We were oblivious to this problem 8 weeks ago and quite happily living our lives.  Now it has gone down the pan, and there is currently no joy or happiness.  I would not want what remains of it to be an endless round of hospital visits etc.

I am conscious of the fact that this his been largely about my situation, but I have been thinking of yours.  It must have been difficult moving through your life taking periodic testing into account.  I wish you continued good health and joy in your life.  I am sure you are enjoying every day.