Advice please

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

  • 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
  • Thank you jane 

    Kym xx

    Kym xx 

  • 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.
  • 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 

  • 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.
  • 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 

  • 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

  • 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 

  • Deleted 

    Kym xx 

  • Thanks

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