Please help

Bigbird73

 

Hi please can anyone help I'm driving myself insane I was admitted to hospital with acute cholecystis during my stay I had a c t scan which found a complex cystic lesion in my right kidney size 6.0 X 4.8  with multiple internal septations also indeterminate low attenuation lesions in the spleen on discharge an urgent appointment to be made with urology team I went back to hospital yesterday as a follow up about gallbladder to be told the kidney needs to be sorted first I Called hospitals this morning to chase appointment no trace of referral should I be chasing this up or just wait I am actually really worried please help xx

icemantoo

ASAP

Bigbird,

A 6cm tumor is on the high side of small and needs to be addressed. Given the size it should be addressed immeadiately as masses that size are probably malignant and if left to grow only increase the chances of bad things happening. Not fun hearing that you may have kidney cancer and they want to take your kidney out. That was me 14 and 1/2 years ago. We all have been there and know how you feel. We will help you thru this.

 

Icemantoo

Jan4you

Well so sorry you are going

Well so sorry you are going through this uncertainty! They hit you in such a way I bet your head is swimming. BUT the good thing is that you found this site. WE'll support you through this process. Hang in there until you are given the exact, certain facts and not a radiologists impressions.

What I did was start looking for a Urologist at the same exact time my Primary (who urdered an Ultrasound for another reason) called to tell me there was a suspicious mass. She referred me to the same Urologist who she picked. He was excellent.

You'll get through this and we'll answer any questions the best we can, but know this, YOU are NOT ALONE! Mostly renal cancer is slow growing and many, many are treated by surgery alone. I am going on 3 years NED (no evidence of disease).

So see a Urologist, who is a surgeon for renal cancer and get their opinion first. Take someone with you and find out what the plan is to address this thing.

We'll be here then for the rest of your questions and recovery hon.

Hugs, Jan

 

Bigbird73

Thank you for taking the time

Thank you for taking the time to read and reply !!!

so going by the size and bein a complex cyst then worst case scenario it's the C word so anything less is a bonus so a trip to urology tomorrow and refusal to leave is best course of action as I don't want to wait another week to be told again they can't find refferal !!! 

Mom so thankful I clicked on this sight coz right now I can't sleep as can't stop thinking xxx

Bigbird73

Sorry to go on but lesions in

Sorry to go on but lesions in the spleen is that possibly the C word ??? Xxx

Bay Area Guy

When we're diagnosed, we all

When we're diagnosed, we all think of the worst case.  I actually read my diagnosis before my primary care doctor got it, as I got the report directly from the radiologist.  It said suspicious for renal cell carcinoma.  Carcinoma.....a form of the C word.  I'll tell you.....I literally shook with fear.  My wife and I went to my primary doctor's office and I practically shoved the paper down his throat and said WHAT DOES THIS MEAN?  He explained it (and I later verified with my sister) what it was and how it was treated.  And he was very nonchalant about the treatment.  Oh, since your lesion is small (1.5cm), they'll probably do a laparoscopic on you.  It's very easy.  I looked at him and reminded him what my father, a former patient of his, used to say.  A minor operation is one that's on someone else.  He chuckled, as he and my dad got along great.  And then when he referred me to the urological oncologist, that guy was even more nonchalant and very, very reassuring.  Bird, yes, cancer of any kind is serious.  But kidney cancer is very, very treatable these days.  I'm proof of that.  Iceman, who commented up above, is also proof of that.  He had his entire kidney removed 14 years ago and he's still here and, from all indications, very healthy.  There are a lot of people on this site who are proof that kidney cancer can be beaten.  As Jan says, we'll all be here for you.  The other folks on here have a lot more information than I do.  I'm kind of a new kid on the block, having undergone my surgery on June 22nd.  I actually didn't find this site until after my operation.  I wish I had found it before. 

Jojo61

Hi BB, sorry for the big

Hi BB, sorry for the big shock you have just been given. It likely is the "C" word, but try not to panic. I too, found out by accident - almost the same as Bay Area Guy....I opened the envelope meant for the technician as I was waiting for a CT scan. I was pretty calm...probably just in disbelief. My tumor was 13 cm. I was referred to the greatest uro-oncologist in Ontario. I was very fortunate that it still could be removed laprascopically. I was home after 4 days - and was doing laundry the 5th day. I was stage 3, grade 2 with lymphovascular invasion. I just had my 3 year check up - and still doing great! Usually, if caught on time, removal of the kidney (with tumor) is sufficient. If not, there are many other treatments out there. (Kidney cancer doesn't respond to traditional chemotherapy). Is the tumor on the same side as the spleen? I am not sure if the spleen is affected. It might be something non-related showing up there. The not knowing is the hardest. We are here for you!

There are some long-time warriors on here that will probably be chiming in soon.  Try not to be too scared, BB.

Hugs

Jojo

Bigbird73

I honestly know that what

I honestly know that what ever it is I'm not giving up I have 3 amazing kids and 3 beautiful granddaughters that need me as I do them thank you so much for your replys it is reassuring to know that even at 3 am English time that there is someone in the world to listen to me to give advice the hardest thing is in November a good friend who is older than me was diagnosed with incurable metastatic melanoma that has spread to her lymph node both lungs her liver and we find out Friday if it has spread to her bones I have dedicated myself to her going to every appointment scan ect hers is incurable and she thinks that they have it all wrong she has a condition called long qt syndrome which limits treatment and makes her unable to have surgery but it not wrong diagnosis I was scared about what's to come but I'm not now I have found this site thank you all xxx

icemantoo

From across the pond

Bigbird,

 

We were all scared  sh--less in the beginning. Yours is still small enough that surgery alone has a reasonable chance of being a total cure. Sorry about the surgery, but it is one of the not so nice perks of Kidney Cancer. I would like to tell you that it is pain free, but I would be laughed off this board. Within the near future a plan will be in place to get rid of this unwanted mass and soon you will hopefully be on the way to a full and complete recovery.

 

Icemantoo

JerzyGrrl

Bigbird73 said:

I honestly know that what

I honestly know that what ever it is I'm not giving up I have 3 amazing kids and 3 beautiful granddaughters that need me as I do them thank you so much for your replys it is reassuring to know that even at 3 am English time that there is someone in the world to listen to me to give advice the hardest thing is in November a good friend who is older than me was diagnosed with incurable metastatic melanoma that has spread to her lymph node both lungs her liver and we find out Friday if it has spread to her bones I have dedicated myself to her going to every appointment scan ect hers is incurable and she thinks that they have it all wrong she has a condition called long qt syndrome which limits treatment and makes her unable to have surgery but it not wrong diagnosis I was scared about what's to come but I'm not now I have found this site thank you all xxx

Always a good idea...

Bird, it's always a good idea to have someone go with you to your appointments. Glad you're the go-along person for your friend.  Do remember to take someone along to your appointments, too. 

RCC (Renal Cell Carcinoma) is not metastatic melanoma. The treatments are quite different.  Typically you find out IF what you have is RCC after you have the mass taken out, because biopsies aren't done. The good news is, this isn't kudzu (Wait: I'm not sure if that's good news to you in England -- Here in the US kudzu is an invasive vine that grows like crazy especially in the South). This stuff grows slowly. First it's generally treated with surgery. You may or may not need additional treatments after that. 

I'd say it's definitely not a matter of deciding whether to "give up" or not.  It's more a choice of taking care of health matters and living your life. 

Keep us posted,

Jerzy

 

Bigbird73

Thank you all for advice and

Thank you all for advice and comments well little update my friend left hospital with smiles the C has not spread to bones and it's not in the liver she has to have heart scan and in 4 weeks she should begin immune therapy as for me spent all afternoon ringing bloody hospital as still no appointment left messages and chased refferal and now have to wait till Monday but in messages have told them if I don't heat I will just turn up at hospital and refuse to leave as for go helping he said no point him chasing as he can't access hospital files so needs to be original department !!!! Xxxxx

lobbyist0724

Hi Bigbird, don't worry about

Hi Bigbird, don't worry about it at this point, but make sure you have a good team following up on you. Since it is a complex cyst and you had a CT scan (I assume it is done with/without contrast?). Did they categorize it with the Bosinak scale, since the treatment plan will be based on how complex it is. Bare in mind that not all complex cysts are related to the C word, especially the less complicated ones Bosniak II or IIF.

Good luck!

 

Bigbird73

I had a ct with contrast to

I had a ct with contrast to look at my gallbladder which showed stones but also showed Diverticulitis and this complex cyst on right kidney on my discharge e an urgent ct scan within renal to be done so at moment no Bosniac score done yet this is the appointment xxxx

 

Footstomper

Kudzu???

Maybe Japanese Bind-weed? I'll agree with everthing everyone else has said. The main thing is not to panic: your imagination is not your friend at this moment. You are almost certain to imagine something far worse than you will experience. You said you provided support for your friend, make sure that you have support for yourself. Should you chase up your referral (I dont know about you but I'd rather have my fingernails removed than do this - the yanks seem rather good at it) unequivicably YES. Uncertainty is pretty much the worst thing for you at the moment. I'd bet your GP will be your ally in this and hurry things on as much as they can.

Any way. DONT PANIC. I had a bigger lump when diagnosed on May 1st 2013 and I'm still annoying my neighbours with my harmonica playing.

ONE LAST THING Dont google this. Its almost worst than the dark recesses of you imagination. It is all out of date or crazy, or both. This is a good site, there is another called Smart patients which is a little more technical. I think the Royal Marsden has a site and links as well.

Good luck. Keep in touch, you are not on your own.