Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

Advice please

Kym66
Posted by

Good morning  I'm stepping in2 unknown if someone could help me I would b grateful I know none of us r doctors but I wanting to know your own personal experience  so I'm not stepping in2 a room totally blind x 

Their is far to much to write my profile will explain alot 

Last week I got called to hospital 2 c a urologist   

I thought I had a cyst on my kidney words from urologist  it looks highly suspicious we r going to do a operation it's a big operation he ask about my treatment regarding my secondary breast cancer  I told him he then said we will wait until you get all your results from treatment n then decide if your treatment hasn't worked it will not b worth doin the operation quite a bit in shock my reply was that makes sence . He has arranged a kidney ct scan in march followed by a appointment with him .i ask will he not do a biopsy he said no not worth it n repeated it very suspicious  n dont need to do any other test sorry a bit long winded but my question is 

Has anyone experienced this 

He didnt send me away with any medication just a call back appointment in march 

Kym xxx

Kym xx 

Joncol
Posted by

I had a similar conversation. I was diagnosed with a blood cancer and the ct scan for staging showed up a kidney tumour. A biopsy was done to make sure it was related to the blood cancer. I was asked my prognosis. It old him it was good as it’s a slow growing, treatable but not curable cancer. He then gave me two options 1.to have the kidney removed and 2. To leave it there and take medication if the cancer spreads. He did say it was another slow growing cancer. This was this time last year. I was 65 and went for the operation. It was major but manageable and am on a regime of six months check ups now. In a way I saw his point as to why put yourself through a major operation of the prognosis is not good. Kidney cancer really does grow slowly so reviewing in March is a good idea. When I was diagnosed my head was all over the place not able to focus on either cancers properly. I know it’s not easy to do but try and put the kidney to one side. There’s nothing that can be done until March and focus on the breast cancer. 

Jane
Kym66
Posted by

Thank you jane 

Kym xx

Kym xx 

buttercup01
Posted by

Hi , I second what  said re slow growing cancer. There are also a number of us in this group who've been on meds for a good few years, to deal with secondaries from the primary kidney cancer.

Btw, if your breast cancer is secondary, what's the primary?

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Kym66
Posted by

Thank u for replying buttercup1 

My primary cancer was breast cancer 15 years ago 

cancer came back on my Supraclavicular area 

Hospital told me it is called secondary breast cancer and will be treating as breast cancer because that is my primary 

I have been told my cancer is incurable/terminal 

Kym xxx

Kym xx 

buttercup01
Posted by

Hi again . Thanks for explaining. So all the things Jane and I said re kidney cancer being a slow grower are really irrelevant,  as any treatment will need to be breast cancer orientated. Don't forget when doctors say " incurable" they ought to also say " but treatable"

You might want to join the Breast, secondary cancer group, as you'll find folk in there with similar experiences to you. Also the Living with incurable cancer group will be helpful too.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Kym66
Posted by

Hi buttercup1 

Yes I'm a member of both groups n they have been very helpful 

I always knew about a cyst on my kidney I knew that b4 I had cancer results which was back in April/may time I was told their is a large mass on your kidney 

This is y I'm so confused all along I was told we will deal with your cancer the cyst is not causing any problems so we will leave it I did ask again near the end of my chemotherapy my oncologist looked at computer and said they r still investigating then out the blue on Wednesday i got a call around 1315 to go c urologist  at 1530 same day  it was all a big blow to me n i went on my own i just thought it was about the cyst to find out if it was causing any problems  4 me or to tell me what their plan is . What more confusing was when I ask if he was goin to do any test to find out if it was cancer his reply was it highly suspicious I a bit blow away they seem to say it is cancer where they said it was a cyst n then to b told if treatment has not worked on my cancer (I have just had my last radiotherapy Tuesday 3rd December) they r not goin to do the operation 

I didnt even ask what operation I was just speechless 

Kym xx

Kym xx 

Gragon
Posted by

Hi ,

I'm sorry that you are going through all this, it sounds really confusing and frightening.  Although I am obviously not medically trained I would have thought that if the kidney growth started as a cyst that it was probably unrelated to your breast cancer.  I'm not clear why breast cancer cells should cause a cyst which develops into cancer?  What I can say is that when cysts are large and complex the assumption is that they are cancerous or on the verge of being so and they would normally aim to remove them surgically.  How much of the kidney they remove varies depending upon the position and size of the cyst.  I had the lower half of my right kidney removed through keyhole surgery.  If the growth is central and near all the "plumbing" that connects your kidney to your body or if the tumour takes up most of the kidney then they would look to remove it all.  It is major surgery but for someone who is normally fit and well it is very doable.  Most people are in hospital for a week or less and sometimes only for a couple of days.  Obviously the concern is that the need to focus is on the breast cancer as this is currently the more dangerous.

When I was told my cancer had returned and spread my Urologist advised me that I had terminal cancer.  My urologist was wrong and he had not managed to keep up with advances in Kidney cancer so it is entirely possible that yours is less than well informed about breast cancer, even having been to an MDT meeting.  If you only completed your treatment recently then they will probably wait a while to see how you have responded.  If you have not responded then they will be looking at other options.  As your cyst is still contained within the kidney then is a lower priority.

It sounds like your urologist missed the patient relations sessions.  You could try asking to talk to your oncologist to get some clarification for when the sequence of events is likely to be.  I know that you said it is difficult to get an appointment at your GP but some practices have priority appointments for certain conditions such as cancer or mental health.  It is probably worth asking of if not then asking that your GP call you and you can explain your concerns over the phone.  Once they hear the circumstances they are much more likely to be able to find an appointment for you.

I hope that you can get some support from the medical teams about you but you are always welcome here.

love and hugs,

Gragon xx

Kym66
Posted by

Hi Gragon 

Thank u so much it is all confusing  even though I'm bein treated for my second lots of cancer treatment will always b for breast cancer (I think I got that right ) urologist did say it's a big operation but that was all  now a fee days have gone pass I feel like I want to kick myself 4 not asking questions  i was speechless 

Bit weird how my appointments are after xmas I c the orthopaedic consultant in January  havin a op on my arm (easy way to explain is they r going to fill in holes in my bones of left arm ) I have  l lesions 

Then 8 c my oncologist in February then the urologist in march 

At one point I even thought have they got the right person 

Kymxx

Kym xx 

Kym66
Posted by

Deleted 

Kym xx 

buttercup01
Posted by

Thanks

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Kym66
Posted by

Hi buttercup1 

I'm sorry I dont understand your message 

Kym x

Kym xx 

Gragon
Posted by

Hi ,

It is not surprising you are confused.  It is one thing if you go to a meeting with your questions prepared but another when you go to a meeting and have information like this sprung on you.  I doubt that anyone would struggle to take in all the new information and think of all the relevant questions at the time.  I was informed by my urologist of the spread of my cancer on December tenth (five years ago) and pushed desperately to see my shiny new oncologist before Xmas as I did not want to be left with a lack of clarity over the holidays and was lucky enough to be able to see him on December twenty second.  It is a terrible time of year to find anything out as everyone is so busy trying to cram everything in before people start taking time off from the hospitals.

It is perhaps therefore not so surprising that your appointments are for after Christmas, especially when you consider that it all starts in only ten days.  Ten days, how did that happen?

I am on a trial (just a simple one about the best way to take the medication) but I am fortunate in that this gives me access to the research nurses who I can e mail or ring to get answers to my questions.  I do know that you have not currently got a Macmillan nurse but at my hospital there is a Macmillan Urology nurse specialist who I can also talk to.

I can't remember if it was a Macmillan nurse or a breast cancer nurse specialist that you were still waiting to be replaced but I would keep pushing.  I complained about my scan reports being late a while ago as whilst I realise that there is a shortage of specialists I wanted the hospital to know that I was not prepared to accept this as a reason for not getting a good service.  I expect them to look harder, further afield or pay more to get the right people to do the jobs needed.  I say this as someone who has always been prepared to pay more into the NHS in order to make sure we retain a quality service.  It is a shame but often it depends upon the amount of pressure we apply before things happen.  Not something we should really have to do in our situation but if we don't who will.

Are you someone who really gets into Christmas because I know for some people they are so busy it is a real distraction?  I like mine fairly quiet so I don't have much to do.  I like the decorations to stay up until 12th night so I haven't put them up yet although I suspect they may be going up this week end.  We have Christmas day at home with just the three of us (my wife, 14 years old son and I) but then go to my sisters on Boxing day for the big family get together.  I've bought all the presents and as we only have Xmas dinner and only for three I don't have loads of food to buy as it is effectively just one meal.

My son and wife ask me for a list of things I might like for Christmas but then my son always has a laugh at my list as there is not really a lot I want or need and there are always a few rather ordinary things on there just so they have a choice.  My son can present a list which would cost several hundreds of pounds and all of it toys, games or entertainment.  He doesn't expect it all but I'm sure that he would have no problem adding things to his list.

Please come back if you have anymore questions or just want to chat.

Wishing you and your all the best,

Gragon xx

buttercup01
Posted by

Hi

Im sorry you didn't understand my message.

Both Joncol and I were originally talking of kidney cancer being a slow growing cancer, but then ( when I realised your primary was breast cancer) I felt  a lot of what I'd originally said wasn't to the point. 

I then thanked @gragon for alll the info he'd posted.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.