TCC Cancer

H Hopeso

Sorry to see you here but i too had TCC in R kidney and indeed it is one of the rarer types with not an awful lot of research around it. 

I had radical nephrectomy with the tube to my bladder removed. On staging scan had retrocaval nodes that were affected.

Im not sure whether these were removed but i had chemo which was a combination gem carbo but it did not agree with me so abandoned it after a few cycles - could not complete the programme.

Since then ( 2011) I have had regular scans and annual cystoscopies as it is the same cell type as the bladder lining and so far I have been very fortunate.

Take a look at the POUT trial which offers some hope for us with TCC as its the most recent info - all the other research and papers are bleak but try not to go down that road as I did.

There are some positive stories and 9 years on I know I am very lucky - I was given 3 years in 2011.

Take care

Carolucy

Hi Carolucy

                Thank for your info ,..especially the POUT trial .I will look onto that . I cannot express how thankful I am  ...  and will be from any other forum members for experiences with TCC Cancer especially if nephrectomy took place after the tumour had spread into the lymph nodes.

I must point out that it is information I require. I only intend to start a fund into researching TCC Cancer once I have as much information as possible and only when a correct legal foundation has been set up.

At this point I am looking for anonymous information and to attract a team of like minded people with experience of such a project that can offer advice.

I hope your good luck continues and thank you for your support/information.

Keep smiling 

Hopeso

Hi Hopeso

my dad has tcc which after the nephroureterectomy they confirmed had not spread and was at stage 3.

He has started adjuvent chemotherapy last week & seems to be ok so far

we have been told that immunotherapy isn’t available for this type of cancer unless it returns within 12 months (despite it having high statistics of recurrence)

Deadulus and Chris have  been really helpful on another post titled ‘tcc anyone’ on here which you may want to take a look at (sorry not sure how to copy the link on to here but it should come up on the search tab!) 

if you google EU guidelines UTUC the 2018 version should also come up.

hope that helps for now and you’re right there’s such little information out there given how rare it is but as you’ll see from the posts they seem to be doing a great job of managing stage 4 too

all the very best!

Hello Hopeso

I am in the category of TCC/UTUC that you mention ie

"I am interested to know if anybody else on the forum has had or has TCC cancer on the kidney that has spread into the lymph nodes and ....A/ managed to survive or ...B/ had the kidney removed after it has metastasized into the lymph nodes ".

I experienced a wholly unsatisfactory delay, of 4 months from presenting with symptoms at my GP until surgery.  The C.T. scan subsequently identified spread to a retrocaval lymph node which was removed during the surgery.  Spread to adjacent lymph nodes was identified a few months after the surgery.  The surgeons believed they were too high risk to remove.  I received chemotherapy and subsequently radiotherapy to the lymph nodes.

I have been receiving 6 monthly CT scans and cystoscopies since my surgery.  They are hinting at changing me to yearly imaging following my next scan.

I currently feel fine, but as all cancer survivors know, you are only as good as your next C.T. scan!  

With the passage of time I have come to believe that it is not just the treatment that leads to survival, but other extraneous factors.  Carol has already replied to you and her experience has been very similar to my own.  

I hope this helps.

Best Wishes

Dedalus

Hi autumn19

Thank for your reply to my post. 

I have had similar experiences to your dad ...However unlike your dads they would not remove mine once it had spread from the Kidney wall and it has now spread further.

Also unlike your dad after around 9 months of Chemo they did give a form  immunotherapy.[Pembrolizumab]

I asked how many times this particular consultant had used this Pembrolizumab. He said seven time with only one success. 

Immunotherapy did not work for me however with a new site opening up whilst on the Immunotherapy. 

I was then put on MVAC a more aggressive form of chemo ..this also did not do the trick for me with new sites opening up whilst on it .No more treatment is planned at this moment . I have a meeting with the consultant next month.

I wonder if there is no national  treatment policy for TCC as too little is known about it and the different areas of the country adopt their own policy.

The fact it is rare is highlighted by the fact that with all the good support from Macmillan there is no actual heading on the site [ or any other site] for TCC cancer . It gets listed under Kidney or other headings hoping somebody will see it.

My understanding is that TCC cancer can start in the Kidney , the bladder , the ureter,and other areas. This points to the basis of my wanting to set up a fund/foundation to research this particular cancer. 

On the bright side I am still fit and active at the moment .

I hope your dad can raise above his situation mentally and make the best of life as it is at the moment. I believe this is really important in prolonging life.

Keep smiling 

Hopeso 

Hi Dedalus 

                Thank you for your much appreciated reply to my post . Maybe you can look at my reply to autumn19  to see a little more about my own experience.

Unfortunately it was too late for me to have kidney removed as it had spread to my lymph nodes [ maybe the ones you mention as being adjacent ] My consultant has told me that radiotherapy is not an option for me.As I am totally fit otherwise I do wonder is age comes into the decision making ?

I too have had long delays .First in getting recommended for a scan [changed GP to get recommended] then waiting for scan results and then waiting for treatment probably 10 months in all.At the time there was long waiting lists in my area.

All these facts are what leads me to want to set up a fund as described in my original post.

I do agree with you survival is also in the hands of other extraneous factors. I am hoping for my adult children and my grandson`s and all other future generations that my actions may prove to be one of those factors in addition to the extraneous factors that we all try to do every day.

Again thank you for your input and good luck with your situation.

Keep smiling

Hopeso

Hi Hopeso

Sorry to hear about your diagnosis. To add to Dedalus and Autumn's posts on TCC (Dedalus in particular has been priceless in terms of knowledge), you may have read in the other TCC thread on here that my Mum has TCC Stage IV. She was originally diagnosed in 2016, and had her kidney removed within a few weeks of diagnosis. She had spread to one lymph node at the time of surgery, which they also removed along with the kidney. However, the surgery wasn't completely successful and was margin positive. However, we then had no further developments until June last year, which was a complete surprise given that she had high grade disease. Post surgery there were no treatment options as her remaining kidney was not good, and her kidney function way too low. 

The cancer was picked up in June last year (Mum's last scheduled CT before going to annual scans), and had returned with multiple mets in her liver. She was then put on systemic chemo (carboplatin and gemcitabine) as her kidney function had recovered enough to allow them to go ahead. It was a scary few months as she went downhill really fast prior to treatment and during the first couple of cycles.This continued through 5 cycles, and she began to improve significantly, until her side effects from the chemo got too severe and they ended chemo with one cycle to go.

The chemo did it's job, and has halted any further spread, as  well as shrinking a couple of the tumours, and she's still in good health at the moment. There's no way of knowing how long this will last at the moment, but so far things are going ok.

Going back to what you said in your earlier posts, I agree completely, TCC is a forgotten cancer, due to its rarity. I was on here for months until finding anyone who had any knowledge of it at all, most replies were along the lines of "isn't that bladder cancer?". As with any rarities, it doesn't get the level of research or investigation that other more common cancers do. It's kind of understandable because there's only so much money for research going around, and they obviously want the maximum impact for anything they spend.

All the best

C

Hi Chris

Good to hear that your mum is responding to treatment and maintaining good health.

I agree with your last paragraph, but I believe that there is a more important overriding economic factor that has held back the development of new drugs for UTUC.  The pharmaceutical industry like any other, is profit based.  When UTUC patients are a significantly smaller cohort of the overall kidney cancer population, a cost benefit analysis mitigates against putting sizeable research funds into new drugs.

RCC is by far the dominant Kidney cancer in terms of the numbers.  Evidence of this is obvious in this and other kidney cancer forums, which are dominated by RCC and related threads.   As you already know, it is very difficult to find dedicated UTUC sections and threads on a wide Internet trawl.  Accordingly the pharmaceutical sector has over the decades produced new drugs and immunotherapies for this large RCC sector.  By way of contrast with RCC, UTUC has made little statistical advancement in survivability over the decades.  The survivabilty of RCC patients has been considerably extended in the same period.

Research papers on UTUC are also quite sparse.  As you have discovered, up until fairly recently UTUC was generally lumped together with TCC of the bladder in most research papers, and still is to some extent.  There are some quite recent research papers that draw a  finer distinction between the two.  Although there is a similarity there is an important distinction to be made in order to design new drugs and treatment.

There is also the problem that urology cancer surgeons and oncologists do not treat very many UTUC patients.  My urology surgeon who was about to retire, informed me that I was his first UTUC patient! We need specialist units as they have in the USA, but unfortunately many/most of us are tied to regional NHS units where we are treated by urology generalists.  In the UK we are fortunate if we can even be treated at a specialist cancer hospital.

I am no expert but in my opinion due to the paucity of pharmaceutical research and investment in UTUC the advancements in drugs for RCC and other cancers are being tried as an offshoot for UTUC,   We require specific research and specifically designed drugs, but the cost of this may be prohibitive considering the comparatively small size of the UTUC cohort.  I don't wish to be overly pessimistic, but I fear that UTUC will remain the Cinderella of kidney cancer for the foreseeable future.

UTUC patients may of course benefit from current general cancer T cell immunotherapy research and treatment, but that is probably some considerable distance down the road.

Apart from the advancement in new drugs, and talking from personal experience, I just wish that in the UK we had a better and faster cancer identification and treatment system as per our European neighbours.  This would save so many lives and extend survival times.  Delay, which is rife in the UK NHS can lead to advancement in cancer stage prior to treatment.  It is a statistical fact that we have more of a fighting chance when cancer is detected in the earlier stages.  Far too often UTUC and other cancers are not detected and treated until they have reached stage IV.  It is surely not down to superior genetics that the elite who have access to superior health monitoring and treatment, can generally survive to become centenarians.  

Dedalus

Hi ChrisM5498

                       Thank for the information in your reply.Very useful. Let's hope that your Mum can get some more valuable time from the treatment she has had to present. 

Interestingly Carboplatin and Gemcitabine was the combination for my first round of Chemo and the only one that held it back . ] Shrunk slightly ]  All other forms since have had little no effect. As I am healthy otherwise I will try to get back on this although they have told me watch and wait no treatment available for me  !!! ???.

With regards to my project setting up a fund to research TCC Cancer. Yourself and Dedalus have raised a good point about pharmaceutical will try to stay away from rare cancers not a good enough return for money invested.  This is something I will have to find a way to overcome. 

Many thanks and keep us informed on your mums progress.

Hopeso 

Hi Dedalus 

                 Your information is just what I need . Ie the point about the pharmaceutical company`s not wishing to invest in low return rare cancers . I intend to give a great deal of time in looking into this point. ...I wish to have as much information as possible especially on the problems I am likely to face. knowing the problem is the first step in being able to overcome it.

Many thanks

Hopeso