Newly diagnosed

Hi ,

I have seen your name about the site before but welcome to the kidney cancer group.  It is unfortunate that for all the stories we hear of good and even exceptional medical staff there are still poor medical practitioners out there.  It is good that you insisted on consulting the oncologist, I make sure I get copies of all reports and test results as well as copies of any letters sent as I feel that I am more likely to get all the information from my oncologist rather than just the bits they think it is important for me to know.  It helps me to ask more relevant questions as well.

Treatment is never as clear once the disease has spread.  If it is contained to the kidney then they prefer to remove it surgically.  It then depends how much it has spread.  If it is only a couple of lymph nodes near to the kidney then again they are likely to remove them in the chance that they can contain the disease.  Once it has spread beyond that then they look at treatments to manage the cancer.

Treatments can depend upon the type of Kidney cancer you have.  The most common type is renal clear cell which covers 80% of kidney cancers and most treatments are developed for that.  As they have the biopsy result they should be able to advise you what cancer it is.  Whilst I like the forum on this site I find that the information on the Kidney Cancer UK website is more informative.  If you click here it will take you straight to the site.

Please let us know how you get on and what treatment you receive.

Wishing you al the best,

Gragon

Thank you for your response Gragon.

I certainly know that you have to get copies of all reports and keep letters.  This was brought home to me last year when I had a bone scan, an MRI, a whole body CT scan, an X ray of my left femur and two CT scans of my kidneys.

The intention of these was to detect any signs of prostate cancer recurrence.

The only information I was given from urologists was by letter - no appointment.   All I was told was that  I had an area iof "scarring" in my right kidney which was possibly a "growth".  As well as not beiong told myself that there was no recurrence of [rostyate cancer, my GP record stated that I was being invetsigated for recurrence , but no there were no results of any findings.

The apppointment that had been arranged for me with an oncolologist was cancelled by the urologist without any discussion with me.

It was only by obtaining the actual reports myself that I discovered that no evidence of recurrence. 

I have since submitted a complaint about this but the result of this hasn't been entirely satisfactory.

I agree with you that we are often not told things because THEY don't think it's important for is.  Interesting to note that the reports also said I had calcified gallstones, diverticular changes in my sigmloid colon, bibasilar lung atelactasis, skeletal degeneration in both feet , knees, hips, shoulders and spine and evidence of chronic bladder neck obstruction.  I did discuss this with a senior nurse who said "they didn't think it was important for you to know this".

I'm glad I insited on beiong treferred to the oncologist, she is more informative andf it's still worrying thgat the urologists misdiagnosed the lymph nodes.

Since sveral nodes are involved, inlcuding one in the neck I'm guessing surgery is out of the question.

Also newly diagnosed so reading along to find out what to do. Lesion found by chance on a MRI for a suspect prolapsed disc.. The lovely sonographer tried to get me a CT scan on the same day I was with her but no up to date bloods on file so CT scan yesterday, 12 days later.. So should I be pressing for an oncologist while I wait for urology to have a team briefing to discuss my case? Tumour 4 x 5 cm at present. 

Sorry to hear you've also been diagnosed.

I'm really in no position to advise you.

For you, it depends o the results of the CT scan.  You have  a  tumour in your kidney from the sound of it which may be operable.

It depends on the result of the CT scan. I hope you have been told that the scan is to see if the cancer has spread outside the kidney.  If it has NOT. then it is possible  to treat the kidney surgically with the aim of achieving a "cure".

Urologists are surgeons, so if it's feasible for you to have surgery then it's a urologist that would carry it out, hence, no real need for an oncologist at this point.  You would then have to decide if you consent to being treated by the particular urologists who are currently dealing with you.

My situation is different.

Firstly, I have been a patient with a particular urology department for 9 years.  In the past I have been dissatisfied with their care.  In the last year I have submitted three separate complaints about them, the latest relating to their apparent misdiagnosis.  That is - they diagnosed the kidney cancer in my lymph nodes as prostate cancer.  One of the urologists I have complained about has been reported many times and at one time was even investigated by a the police about a death,  I have recently discovered.  The department is under scrutiny from an independent enquiry.

In which case if I ever need urological surgery, I would request being transferred to another trust entirely.

Secondly, however.  My cancer has spread outside the kidney and therefore surgery is not an option.  The treatments for this are carried out by an oncologist  and aren't surgical.  Furthermore, even if the lymph nodes had been prostate cancer, they couldn't be treated with surgery and I would have been referred to an oncologist anyway.  With hindsight, I should have insisted on being referred to an oncologist years ago.

As you can see this is a more complex case than yours.

I'd say, all being well and your tumour is confined to the kidney and you trust the urology department currently managing your case, then there's no need to see an oncologist.  I'm sure you would be referred to an oncologist if that was thought necessary.

Hi ,

Welcome to the group although I know it is not the place you would have wanted to be.  I know that it can be a scary and isolated place to be to start with.   was correct in advising that surgery is usually the first option when looking at kidney cancers.  Now it is on their radar then they have to work within certain time guidelines.  Your CT scan is within the two weeks expected for investigations to occur once the possibility of cancer is raised.

Kidney cancers can grow very large before they are noticed and therefore a cancer under 7cm is classed as a small tumour.  They will obviously consider you as a whole person and will take into account any other medical issues before deciding what to do.  This can be to watch and wait to see how quickly the tumour is growing.  This can be nerve wracking and most people just want the growth removing as soon as possible.  Removal can indeed be a complete cure so if they argue against this approach you would probably want to question them very hard about why they do not want to operate and you can argue for it.

I would suggest that from the outset that you advise your Urologist that you want to have copies of all letters to your GP and copies of all reports and blood tests as well.  They can be difficult to interpret to start with but with a bit of perseverance you can work it out.  At my hospital, for a fee, I can also get a CD copy of my CT scan.  However, I cannot interpret that but it might be useful if you wanted to look at it with your GP or another medical opinion.

I was told that you can function with only half of one kidney but how much of your kidney they remove can depend on where the growth is.  Mine was at the bottom of my right kidney so they only had to remove part of my kidney and managed to do it through keyhole surgery.  If the tumour was more central and intertwined with al the vessels coming into and out of the kidney it might be necessary for all of the kidney to be removed.  It might be possible to do this through keyhole surgery but the surgeons always reserve the right to change to open surgery if things are more complicated than expected when they get inside you.  Surgery is often said to be major but do-able.

It would be helpful if you could put a few details in your profile.  If you scroll to the top of the page and at the right hand side there is a green tab with four icons in it.  The circle with the mug on will take you to your profile if you click on it.  There are buttons on the page that allow you to edit it as often as you like.  A good start would be simply to "cut and paste" your post from above.  If you click on anyone else's username it will take you to their profile and you can see what they have put.  It can stop people asking you the same questions over and over.  You can put as much or as little detail as you like.  I would suggest that you start with the basics.

You are more than welcome to ask questions here but don't forget your GP coordinates your medical care so they should be copied into everything.  You can also call the Macmillan helpline for support about emotional or medical issues but also practical matters such as your employment rights.  Once you receive a cancer diagnosis you are covered by disability discrimination legislation which can be useful to know.  They can also give advice about financial concerns either for claiming against things like critical illness insurance or that certain companies, organisations and banks give extra consideration to people with cancer.  You can contact them on 0808 808 00 00 any day between 8am and 8pm.

In the mean time if you think that you have not heard back from them quick enough do not hesitate to contact your urologist to ask what is happening, they sometimes forget to communicate the process with the patient.

Please let us know how you get on and all the best for the future.

Gragon

Hi , thanks for the replies people. I have populated my profile. Finding the "fast track" incredibly slow, and trying to get through to the doctors today is impossible. At the moment I have no letters other than for appointments for the CT scan. It seems knowledge is power, so the list of questions for the dr is growing. Not liking the idea of a wait & see if it grows and the uncertainty of knowing if it is a primary or secondary cancer.

Hello again

I can thoroughly identify with and sympathise about your frustration at the pace at which these things go.  Waiitng is awful, i.e. first waiting for investigations and then waiting for results.

I'm sorry if you had to wait a long time for your MRI scan, it would probabaly have been classed as "non-urgent" and would have been delayed further by the pandemic.  They can't do as many scans because they have to clean the machinery between every patient.

However, once a tumour had been detected then all investigations will be urgent.

I appreciate that when you're told that a tumour has been detected it is perfectly natural to want everything to happen immediately and also a common reaction to want to have this dangerous alien object removed from you.

I too have experienced this.

Unfortunatelty there are necessary processes that need to take place that do create waiting.  For example, it may take some time for any scan to be examined by a radiographer and be reported on.  Following that, in most cases the results will be discussed in a Multi-Disciplinary Team before anything is concluded or recommended and this also takes time.  In my experience, even if you can contact a doctor, they might not be willing to tell you much over a phone even if they're in a position to do so.

You'd want this process to be as thorough as possible to avoid mis-daignoses and hence mistreatment.

I hope you find it at least a little reassuring to know that it is not at all unusual fo have to wait some time anf it's not unusual to find this very stressful.

As regards primary and secondary tumours, I don't know exactly what you've been told so far, but it does appear as if your kidney tumour IS the primary tumour.  A secondary tumour would be where some cells from this have escaped the kidney and started growing elsewhere.  This secondary however would still be kidney cancer.

The other possibility is that you have a primary tumour elsewhere, (NOT kidney) that has spread TO the kidney.  I think that the MRi would be likely to identify this.

Also of some further reassurance may be any feedback you were given about the reason for the MRI in the first place, i.e. apart from being told you have a kidney lesion, were you told your spinal problem is definitely a prolapsed disk?

If surveillance was mentioned to you i.e. not yet offering any treatment and waiting to see if the tumour grows, then, from our point of view, this really is most stressful and undesirable.  However, again there are risks to carrying out treatment prematurely.  In addition, in this case if the tumour can be removed surgically then it's usually left until it's reached a minimunm size.

In my case, I was left under surveillance for a year BOTH because my lesion was less than the minimum size AND it didn't actually appear to be a tumour at all.

I believe your tumour has already reached that size.  Hence surveillance won't be necessary.

I hope this helps a little, I'm going through it too.