Possibly kidney cancer

Hi Dottydo.  Welcome to this site.   Do you know if they have had their 'chat' yet?  If you don't know, then I think it would be good to follow them up on this.  Kidney cancer is relatively slow growing, and I appreciate it may not be that, but I really feel it would be worthwhile finding out how their 'chat' went.  You can also speak to a Macmillan nurse, who are all excellent

I appreciate you don't want to worry your husband, but you are finding it hard to keep up the smiles at times and you do need encouragement & support from loved ones & friends.  My wife is an absolute rock as are the rest of our family & friends.  I'm sure they will all want to support you in this.  Do let us know how you get on.  Best wishes,  Ray

Hi I had similar a 5cm mass found incidentally. After the MDT meeting it was decided to biopsy the mass as I also have lymphoma. The biopsy came back as kidney cancer and I had my kidney removed two months ago. I was also given the option to wait but for me I wanted the kidney out. The MDT have your best interests at heart and will come up with a plan. Please tell your husband but I have found wonderful support from the Macmillan community as they have “walked the walk”

Lovely reply. 

Hi Joncol thanks for talking to me. I haven't  been offered a biopsy, I'll  have to ask why not. What does MDT mean? Seems odd to me to be asked to wait 6 months and see what happens. I love the line " have walked the walk".

Thank you for your best wishes, I believe you mean it. Your right I must tell my husband and my son, they are both very restricted people ,shy, contained. I've  heard nothing yet about what if anything has been decided, don't  like the idea of waiting 6 months to see if it grows or spreads, scary. 

Hi Dottydo

MDT means multidisciplinary team. They include radiologists, urologists, oncologists etc. They look at all the information they have such as scans and decide on the best treatment for you. Because they were unsure whether the mass picked up on the ct scan was kidney cancer or a lymphoma mass they decided to biopsy. Biopsy isn’t standard procedure normally. 

Hi ,

Welcome to the group although I'm sorry you have had to come here.

In my case the tumour was slightly larger at 7cm but they were confident from the look of it in the CT scan that it was cancer.  I did ask if they would biopsy first but was told that on a surprising number of cases they missed the tumour and sampled healthy tissue instead! A bit worrying but as they were going to operate anyway I didn't query it.  At 7cm mine was called as a "small" tumour as they can grow to be massive and still remain contained.

Obviously your consultant will be able to explain why they prefer to wait but it is difficult to remember to ask the questions when you are in the meeting.  It is helpful if you write your questions down and take them in with you.  Unfortunately my cancer has spread but in my treatment I take regular three month breaks with no treatment as part of a medical trial and to start with it felt scary to have this thing inside me and not be doing anything about it but if the doctors want to wait then they will be doing so for a reason and trying to balance the risks.

If you have access to a Macmillan nurse that is really good.  I had told my wife but talked to the nurse about how to explain to my son who was 9 years old at the time.  If not you could always call the helpline on 0808 808 00 00.  They are really supportive and helpful and can offer advice about all sorts of things including how to broach these matters with your family.

When I talked to my wider family I was quite specific about how I wanted them to respond, I was happy to keep them updated but did not want them ringing me everyday to see how I was doing or what was happening.  I also wanted to talk about things other than cancer as I would need to take a break from it mentally.  This worked quite well for me and I think for them as well as they did not have to worry about saying or doing the "wrong thing".

I had a look at your profile to see if you mentioned anything about employment but unfortunately you have not put anything in there yet.  If it is diagnosed as cancer then you are covered by the disability discrimination laws but I must admit I don't know what your position would be currently.  This is the sort of thing that the helpline could advise you about.  It can be useful to put some information in your profile as it saves you being asked the same questions all the time.  To read anyone else's profile click on their name where it appears in bold and you can get an idea of the sort of information others have put.  To put something in your own profile click on your name at the top right of the page and it will go to your profile page.  On that page there is a button on the left marked "edit profile" and it will let you add information.  Save it before you leave but you can go back at anytime and alter or add information as appropriate.

Do you have your next appointment to see your consultant yet?  Once you do and when you find out what the multi disciplinary team are recommending and why it should be come a bit easier t understand and it is the unknown that is so scary, our imagination fills in the blanks and never in a good way.

I hope that you get some answers soon,

Wishing you all the best,

Gragon x

Hi Gragon, nice to meet you. It's  been over a month now since the ultrasound lady found something odd. Feel left in limbo.why don't  they just do a biopsy. You all seem to be happy with your treatment  and have faith in your consultants.i don't  work so nothing to effect there if I do need an operation. What you said about asking your friends and family to speak about other things, maybe that's w why I haven't  told anyone I don't  want to become someone who has pity and asking me how I am. I may eventually have to. If they take my kidney and it's  cancer do I need to have chemotherapy. So many questions .yours was 7cm and they could tell immediately I'm so sorry yours has spread , that upsets me. I truly hope you are ok, you seem to trust the people giving you treatment... 

Hi ,

If it is cancer then the preferred treatment is usually surgery.  After that it gets a bit complicated as there are several different types of kidney cancer and they use different treatments depending upon which one you have.  If they do a biopsy then they should be able to determine which type it is but you usually find out after surgery when the cancer is sent off to histology and they can determine type and grade.

I have the most common renal clear cell carcinoma (RCC) which might be why they were able to be fairly certain from a CT scan.

If you haven't been given a date yet for your next appointment with a consultant then don't hesitate to ring the hospital to find out when it will be.  You might want to discuss it with your GP as well as they can also contact the hospital on your behalf.  As dedicated as lots of the people in the hospital are the bureaucracy and slow communication are as bad as in any large organisation.  It is not unknown for appointments not to be issued so if you ever feel it is taking a long time chase them up.  Once you know what the plan for you is you will be more able to focus on that rather than speculating about what might happen.  At this stage the possibilities are endless and you can mentally run around in circles until you are exhausted if you are not careful.

If you are getting stressed out then it is likely your husband has noticed something even if he is not sure why.  It is a good idea to share your concerns with some one although at this stage you would probably be asking then to keep it to themselves.  My choice was my wife although obviously if you feel your husband would not cope or would be no support then you might want to consider talking to someone else.

I hope that you get some answers soon.

all the best,

Gragon x

Hi Dottydo

My heart goes out to you to be in such limbo. First of all please tell your husband and son. I suspect they would be more upset to know that you were trying to manage this yourself than to hear your news.

My tumour was 5cm when discovered. They thought, but didn't know for sure that it was cancer. I had my kidney removed regardless and it was confirmed in the biopsy. 

5cm isn't big, but if it's not in the centre of the kidney it can be significant. Mine wasn't contained and the result has been a spread.

I have to say there is no way that I would wait 6 months to see what happens, knowing what I know now. My friend had the same as me, but his was contained in the kidney and he's now been totally clear for 7 years. At 5cm you have every chance of his result x

Following surgery there's often no drug treatment if there's no spread and as Gragon says if it's RCC. I was treatment free for 2 years.

Our chemo is different to what you normally associate. No long infusions and days in the units. It's a tablet and once you get used to it it's really quite manageable. HOpefully you won't even need to think about that though.

I would go back to your GP and ask for help. I've not used Macmillan's services at all, but I know they're also extremely helpful so it  is undoubtedly a good idea to talk to them too.

Please do tell your husband and son so that they can support you now while you get things sorted and for any news you might get. Telling people is very difficult, but it's a huge weight off your shoulders once you have done it.

Lots of luck to you