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Newbie here!

MirandaChe
MirandaChe Member Posts: 3

Hello!

I'm new here, so I'll tell you a little my story. I'm 35 years old and living in Spain (there is why there are will be some differences in procedures and sorry for my english). About 8-10 years ago I was diagnosted with miomas in my uterus, and finally, in november 2016 I had practices total histerectomy (I still have my ovaries). After this everything was perfect and biopsy was ok.

Then, in august 2017 I felt a little ball in my left side and went to the emergency attention... First of all they said it could be splenomegaly and sent me to do tomography. There they saw that it was something in my kidney, the cyst they said, so one more tomography, with more resolution to know if the cyst was growing form the kidney or from the adrenal gland.  After the second one, they still weren't able to sayme where it grows from, so sent me to the urologist. 

In my first visit to the urologist he said me that they are going to remove my cyst with my left kidney, and that the cyst was gigantic (all this time it was growing) - about 20 cm... It was my first shock. I had my surgery 18 december, open nephrectomy... Also I have stones in my right kidney, so now I wearing JJ catheter and waiting for lithotripsy.

I'm still recovering... Sometimes I feel a little pain in my left and I don't have all my energy, I think now I'm only half strong that before surgery. But reading this board I saw that it's normal (and I was worring that I cant do push ups due to back pain XD)

And, for the last, I had an urologist visit, and he said that the biopsy is bad, that it was cancer, but it was incapsulated, so my lymph nodes are clean. But, it very probably that I have "hereditary leiomyomatosis and renal cell carcinoma" :/ I was so shoked that I even forgot my biopsy inform, so I don't know the type of cancer I had. But it was big and grew very fast.

And now I'm trying to be positive but sometimes it's a little difficult. With all this staff I don't know what probabilities I have.. and I just don't know what to expect..

That's all for now, kind regards to everyone! 

Comments

  • Supersum
    Supersum Member Posts: 109
    edited March 2018 #2
    Hi Miranda

    Hi Miranda

    Sorry to hear you have been through this terrible experience I know from my own situation that it can be very traumatic.

    If I was in your position I would think it would be essential to get a copy of the biopsy.

    There are many types and variations and percentages of renal cell carcinoma (RCC). It is difficult to understand your situation if even you do not know what your biopsy says.

    In most western countries if you ask for a copy of your biopsy then they give it to you without any question. You can start by contacting your medical centre and ask how what you have to do to get a copy of your biopsy.

    Then if you have your biopsy you can tell us exactly what your urologist meant when he said it was bad.

    It seems from what you are saying that all the cancer has been removed and there is no sign that it has spread, although you might be having some other health problems.

    Regarding your cancer, there are many new drugs coming onto the market which target RCC, although I am not sure what is available in Spain or what sort of of health system you have.

    However it is a good approach to be positive, but also to try to take some control over your situation. This starts by getting a copy of your biopsy (unless you don't want to know what is wrong with you that is okay as well if you want to take that approach).

    Stay strong while you learn what is wrong and research what can be done about it.

    Supersum

     

     

     

     

     

     

  • stub1969
    stub1969 Member Posts: 933 **
    Welcome, Miranda

    Wow--you've had a pretty rough couple years.  Supersum is absolutely correct---try to get a copy of your biopsy; better yet a copy of your pathology.  Right now it is urgent that you arm yourself with knowledge and understanding the type of  cancer you had is the first step.  I'd also encourage you to seek out a doctor that specializes in RCC.  Try to follow-up with regular scans (at the very least every 6 months).  That way if anything pops up, you can catch it early.

    Wishing you only the best from the United States,

    Stub

  • MirandaChe
    MirandaChe Member Posts: 3
    Biopsy

    Hello!

    I have got a copy of my biopsy today. It's very long and I think I couldn't translate it from spanish, but there is a resume:

    - renal cortical cystic carcinoma (?), predominantly papillary type 2, with tubular and cordal (?) components

    - size 27x12x10

    - Grade 3

    - pT2b

    - pNX

    This May I have another tomography and in June - my visit with urologist.. will hope that everything gonna be ok and will rtry to stay strong.

    Hugs!

     

  • AnnissaP
    AnnissaP Member Posts: 632
    Hi. So glad they were able to

    Hi. So glad they were able to remove the cancer!!! Healing takes a very long time. I had my nephrectomy in November and am doing push ups, but def feel it in the incision area. It isn't painful, but let's me know it is there. My energy definitely is NOT back. I have been completely exhausted the past week or so and just cannot get enough sleep. Please do yourself a favour and be gentle and kind to your body. It will thank you for it. I hope you continue to heal well and wish you all the best.

  • Supersum
    Supersum Member Posts: 109
    Saw a relevant link

    I saw a link which might be relevant to you please have a look:

    https://kccure.org/2018/03/hlrcc-papillary-kidney-cancer/

    I sent you a private message with some more details you can find it by clicking on "CSN Email"

  • Supersum
    Supersum Member Posts: 109
    Take it easy as you improve

    Papillary is not a common RCC, but with the large numbers of people with the disease then of course there are also many with the papillary variety.

    What's the situation now? It seems like it is all clear but you must be closely monitored to check if it returns. Is that right?

    They might not be offering you any medicine at this time if there is no sign of it right now. Most countries don't have an adjuvant treatment for RCC (a treatment to try to stop it coming back), although I have seen some people somewhere are taking something but this might not be the official approach. 

    Whatever the case just take it easy for now it is still only a short time since the nephrectomy so don't be doing any push ups for a while. I think it was nearly four months after my operation that I started doing some very gentle yoga and got some flexibility back.