New here and not sure whether I should be on here!

Hello everyone.

I am Jules ……and the reason that I am not sure about being on here is that my diagnosis has not been confirmed as yet.

In November they found a golf ball size mass on my right kidney and due to covid everything has been delayed. I was seen in clinic on 31st Dec and informed that I either had renal cell carcinoma or I had an oncocytoma. ( which is a is non malignant tumour). Statistically I understand that it’s far more llikely to be RCC.

I was given a choice of either a partial nephrectomy or a biopsy and so I opted for the biopsy. However, I have since found out that the two types of cancer are hard to differentiate with the needle biopsy and can coexist. I had the biopsy done on Monday and am now waiting for results.

I hope it’s okay to join despite my diagnosis not being confirmed. The reason I wanted to join is that I wanted to send a message to someone on the kidney cancer forum. Also am always a very positive happy person and this has hit me hard and I know that I have lost my sparkle a bit. My husband and family are all worried and so it would be good to speak with people going through similar things on line

Best wishes, Jules 

  • Hi  and a very warm welcome to the Online Community although I am so sorry to hear about your ongoing diagnosis. This is such a challenging and stressful time for you but I do hope you find the community a safe place to get support and ask your questions.

    Should you be here, yes you certainly can be and you can always move on if things tun out not to be cancer.

    The New to Community is like our reception desk where we can signpost you to our various cancer specific support groups and other services so can I recommend that in the first instant you consider joining our supportive Kidney cancer group. This will be a safe place to talk to others who may have a similar diagnosis experiences, treatment experience, to ask questions and get support.

    If you'd like to connect in with a group, you do need to join the group. Click on the Green link I have created above. Then once the page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."

    You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New  (Computers) or + (Mobile Devices). You will then see a dropdown menu so hit ‘Chat’ or ‘Start a Discussion in New here, say hello’ and you are ready to go.

    You could copy and paste the text from this your first post. You can also search through existing ‘Discussions’ and click [reply] if you want to put up a comment.

    The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.

    To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section

    Always around if you need further help in navigating the community.

    All the very best ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

    Click to see how to add details to your profile

  • Thank you for such a lovely welcoming message x

  • Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

    Click to see how to add details to your profile

  • HI Jules

    and welcome. I can empathise with where you are coming from. In 2019 I had a scan to investigate a squishy painful lump below my right ribcage. The scan picked up a tumour on my left kidney. Its about the size of a large grape. Like you I was well warned by the urologist about all the nasties it could be.  I had the needle biopsy then a wait of over 3 weeks for the results (the surgeon went on holiday and no one else would give me the results. Knowing that they were there and no one could tell me just about drove me insane!) It turned out it is an angiomyolipoma and benign. They've monitored it for a couple of years and there's been no change, no impact to kidney function so they've left it alone. My little kidney passenger just lurks in there quietly.

    The other squishy mess was an unstructured lipoma and it was surgically removed a month after I got the biopsy results. Fortunately it too was benign.

    Sending you lots of positive healing love and light and hugs

    Wee me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you so much….I am pleased that yours was a good outcome Blush I really do appreciate you taking the time to message me, it’s so good to hear from you that you have been through a similar experience. I was feeling a bit low this morning and now feel a bit more perky.

    Bless you, thanks again, Jules x