Transitional cell carcinoma of the ureter

Hello Ngyhp

Firstly, I must say how lucky your brother is to have a sibling like you.  I have not seen many posts like yours.  I would consider myself very fortunate to have such a sibling.  I doubt if my siblings have even read about UTUC/TCC.

The second thing I would say is that at the age of 48 younger patients have a better chance of fighting this disease.

It is too early to discuss your brother's possible treatment ahead of the multi disciplinary team meeting, but I would anticipate either further surgery and/or systemic treatment in the form of chemotherapy, if the mass is found to be malignant.

The problem with UTUC/TCC is that it is a much rarer disease outside of the bladder.  You will therefore not find many people to communicate with on this site.  I would suspect that this is why you have had a limited response thus far.

Expand your profile information and post again once you have an update following the MDT meeting.

Dedalus

Hi Dedalus

Thank you for taking the time to reply. I have read your profile and some of your posts. How are you doing?

Sadly, surgery is not an option for my brother now. He has two options: 

Standard Chemotherapy: gemcitabine + cisplatin

Clinical Trial which is randomized by either: Group 1: gemcitabine + cisplatin + atezolizumab

Group 2: atezolizumab alone

We are in favour of the clinical trial since it will leave us with more options down the road. Our concern is timing. If he goes with standard chemo, he can have treatment right away. But, if he chooses clinical trial, he have to wait 2-3 weeks. 

The waiting period is so frightening as we do not know how cancer is progressing inside his body each day. We really just want to start right away with the standard chemo but is afraid if that does not respond, the clinical trial will not be an open door for him as a second line. 

Do you mind me asking how you did with chemo? 

We’re you able to tolerate it? 

How did your remaining kidney function while on chemo?  

How many cycle did you do? 

Are you currently on any treatment?

I apologized for asking so many questions. It seems like your my only response so far. I wish you the best and hope for miracles to come. 

Take care!

Ngyhp 

Hello join uk Kidney cancer support network of fb there’s over 800 members and I’m sure there will be lots of advice for you on there.

Lisa....

Hello again Ngyhp

Re the chemo.  I read research papers which said there were benefits to chemo and others which said there were not.  A few of the papers said that the benefits were more definite with stage IV TCC/UTUC, which is where I am and where your brother is.

Having read about all the side effects I was reticent and a bit frightened about chemo and even considered not having it.  However, a CT scan indicated I had further spread into 2 lymph nodes, so I opted for it.  I received the Gemcitabine - Carboplatin combination therapy over 4 cycles.  Cisplatin is the preferred combo, but my remaining kidney decided to go on reduced function after the surgery, and Carboplatin is less nephrotoxic.

The chemo was not pleasant due to nausea, loss of appetite, fatigue breathlessness and neutropenia.  The oncologist said that I had coped with the chemo really well, because I was quite strong and reasonably fit.  I don't smoke and drink very little.  All in all it was bearable.

My remaining kidney will never return to an EGFR of 60.  It hovers between 38 and 42 (%).  I don't believe that the chemo did further damage.  What can cause damage is the contrast given with the CT scan, but the medics take precautions with that.

The chemo shrunk one of the nodes but did not fully restore the larger one to normal size.  I then opted for targeted radiotherapy on the lymph nodes, which I completed about 3 months ago.  That had similar side effects as the chemo, but not so severe.  I had a CT scan just over a week ago, and meet with the oncologist for the result in a weeks time.  I have been getting a bit anxious about the result because they phoned me within a few days of the last scan and told me there had been no progression.  They have not done that this time!  Perhaps your brother should also explore the possibilty of targeted radiotherapy after chemo.  Possibly a trial would preclude that.

Despite the foregoing I am feeling quite well and fit, although my peace of mind is not so good.  I can still nip up multiple flights of stairs without any problems.

I am not currently on any treatment and it is so good to not have side effects and feel unwell.  I may have to explore 3 rd line treatment, but don't really want to do that.  Unfortunately, and as you may have already found out there are very limited options for TCC/UTUC, unlike RCC.  I may explore immunotherapy in the form of Keytruda, although am concerned about the side effects.

How is your brother doing generally, and how is his remaining kidney functioning?  I assume that it must be functioning ok, otherwise they would not be considering Cisplatin.

Wishing you all the best in your research on behalf of your brother.  He is very fortunate to have you.  My siblings although decent types are not at all hands on, or even that communicative about my situation.  My wife is my rock.

If you find a forum on FB or where there are a few that discuss TCC/UTUC outside of the bladder,  (TCC in the bladder is a bit of a different entity) then please let me know.  There are not many of us about because of this rarer form.

Best wishes to you both.

Dedalus

Thank you Lisa!

Best wishes 

Ngyhp

Good day Dedalus

Thank you for sharing your story in every detail. This really helped a lot in some ways. Like you my brother’s peace of mind is not so good, but this is perfectly normal. Maybe try to distract yourself in other ways when you find yourself anxious. I know it’s easy said then done, but it’s the best way you can help yourself mentally and trust me, I’ve witnessed how your mind plays an important role to this journey in terms of survivability. 

My brother is almost 3 months post op and he is recovering well according to the timeline. Regarding kidney function, doctors are not concern. We do not know his EGFR, but will ask the next time. The only concern is the regrowth in the empty space where his ureter used to be which doctors believed is a progression of cancer. This mass has wrapped around the nearby artery. 

We are frustrated because 2 oncologist recommended clinical trials (immunotherapy, starts in 2 weeks) for first line treatment and his urologist suggested standard chemo (gem + cisplatin, starts right away).

Hope immunotherapy will be of benefit and that side effects are minimal for you. Eat, sleep, and keeping busy is the best you can help yourself. 

Take care

Ngyhp 

Hi Ngyhp,

I've been reading a lot of promising things about immunotherapy. Once they decide if they are giving my mother an operation or drug treatment I want to discuss this with our specialist. 

This was something I read with interest recently. A new combination treatment which has just been approved for the NHS after promising results from trials.

www.ascopost.com/.../

Best wishes to you and your brother.

Hello Sparky_1975

There is a distinct difference between TCC/UTUC and RCC.  For example, chemotherapy and radiotherapy are not given for RCC because it has largely been proved to be ineffective, yet it is the first and second line treatment for TCC/UTUC.

Another problem is that in the NHS, if a specific treatment is not licensed and approved for a specific cancer then it will not be available.  I don't think that the combination you mention would not be available to TCC/UTUC patients.

In addition, despite there being a National Health Service there are regional differences regarding availability of drugs, ie between England, Scotland, Wales and NI.  The drug also has to be approved for use in the region of the patient.  What may be available in one region may not be available in another.

Dedalus

Hello again Ngyhp

I'm glad my reply was of some help.

Thanks for your supportive comments.

I have read of cases (possibly in the USA) where the cancer had penetrated the vena cava and tricky surgery was performed to remove it.  It is a pity that surgery is not an option, because removal is usually always considered to be the best option.  I tried for that with my lymph glands, but the MDT said it was too risky due to their location.  I believe that had I been in the USA where they are at the top of their game, that it may have been a possibility.

I have not had my CT scan result yet, but given the delay in contact and some pains I have been feeling, the pessimistic side of my personality is kicking in.  I am also not absolutely sure if immunotherapy is available to me in my region.  I have postponed my research for the moment because it gets me down when I read into all the potential side effects.  I will have to get round to reading about it quite soon.

You and your brother have a difficult decision to make re the treatment on offer.  In view of the difficulty I would not like to advise.  I would say that you have to gather as much information as possible in order to arrive at the best possible decision. 

Dedalus

Hi Dedalus,

Thanks for explaining. I'm sorry I'm new to all this and I may be a bit ignorant on some of these matters. I didn't mean to cause any confusion to the original post and discussion with the different types of cancer. Apologies if I did, I'm still very much learning and researching as much as I can to try to help my mother through her journey with her cancer. I probably shouldn't comment so much without being totally sure of what I'm saying.

I was just excited to read about this new drug treatment with good reviews and wanted to talk about it to all, but a bit naïve to think that everyone could possibly get it in the UK.

Thanks for the reply.