just diagnosed

Cindy T in Washington
Cindy T in Washington Member Posts: 27
edited December 2017 in Kidney Cancer #1

Hi, I am new to this forum.  I was just diagnosed with a "renal mass"  I see the Urologist on the 5th of January.  What words of wisdom do you have for me.  Thank you.

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Comments

  • icemantoo
    icemantoo Member Posts: 3,359 Member
    Welcome to the club

    Cindy,

     

    Welcome to the club which no one in their right mind would volunteer to join. Answer the abve questions so we can help you appropriately.

     

    Icemantoo

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    First of all

    sorry   You are here.  It’s a terrible shock  

     

    #Second of all.. don’t panic

    What Info did  they give to you

    Size.

    Location

    Annie

     

  • just diagnosed

    Well, I don't know a whole lot yet. I think I may be one of the lucky one's as the mass was found while doing a scan to check blood flow.  The doctor who ordered the study said yes we need to do something but..... he then explained that they found a renal mass while doing the test.  I do not know the size, but it is in the lower portion of the kidney on the right side.  They have set me up to see a urologist on Jan. 5th.  The Doctor told me it had to come out now ...  So, I have googled the hell out of Kidney Cancer, but as yet do not know the size or stage of the mass.  I found this site while looking and am relieved that I can "talk" with people who have had the same experiences.  I am so glad you are here...

  • stub1969
    stub1969 Member Posts: 954 Member
    edited December 2017 #5
    Hi, Cindy

    Welcome!  First of all, try to take a deep breath and collect yourself.  If they did find the mass early, consider yourself lucky.  Reoccurance with stage 1 is small.  I'd encourage you to get some answers before you start searching google.  As much as we all want answers--google is not the place to seek them.  Let us know what you find out from your doctor.  We'll help as much as we can. 

    Take care.

    Stub

  • Retcenturion
    Retcenturion Member Posts: 240
    Staging will be post op

    They will stage in pathology report post op. You probably get better answers to the million questions popping up in your head now on this forum. There's a lot of recent newbies. Go through some posts. If you can't find an answer post a question,it should be answered. Positive thoughts your way.

     

  • Bay Area Guy
    Bay Area Guy Member Posts: 546 Member
    edited December 2017 #7
    I know it's difficult, but

    I know it's difficult, but you should try very hard NOT to google the hell out of kidney cancer.  The internet is great for a lot of things, but finding consistent medical information is not one of those things.  You can look at ten different websites and find out ten completely different views on just about anything.  Plus, treatment of kidney masses is improving at light speed in the last few years, so many of the websites you'll find are way out of date.  I agree with the folks above.  Ask your questions here.  Pretty much everyone here has gone through what you're going through and there are representives of every type of kidney cancer as well as eveery type of treatment, and the people here are incredibly giving.

  • AnnissaP
    AnnissaP Member Posts: 632
    Hi and welcome (sorry). I am

    Hi and welcome (sorry). I am happy for you that you have an appt that quick. Please ask the dr as MANY questions as you want. I would suggest writing them down and bringing the list. I did this and as much as I said I wouldn't forget anything...I still did lol. What a good thing that you found this site. You are NOT alone!!!! I hope you have a great Christmas and please know all of this will be behind you soon and you will be on your way to healing. Try and find comfort in the fact that this is all being taken care of and that they actually found it!!! I know it is difficult, but better than the alternative. Take care and keep reaching out. No question is too silly!

  • JimHarrison36502
    JimHarrison36502 Member Posts: 30
    edited December 2017 #9
    You are definitely not alone.

    You are definitely not alone. I was diagnosed on Monday ... Surgery scheduled for January 16th. I've been freaking out all week but trying to maintain a positive attitude. Timing seems to be everything with this cancer.. The sooner they find it the better. I will tell you... When you go to have your CT scan... That contrast isn't anything nice! They are also going to fill your kidneys and bladder with liquid...I had to go to the bathroom so bad.. And the tech was wanting to talk Christmas shopping... Lol!! I was like...I gotta go to the bathroom NOW!! She said.. Sit still baby we almost done. That contrast will make everything very hot... Even my breath was super hot. 

  • Cindy T in Washington
    Cindy T in Washington Member Posts: 27
    edited December 2017 #10
    Just received the

    Just received the radiologists report. What is says:  On the left there is a 4.5 cm diameter this represents a renal celll carinoma.  On the right ther s alow-attenuation, well-circumscribed nodule,  say benign cortical cyst. Can you folks out there recommend the questions I should ask when I see the Urologist?  Thanks again!

  • Manufred
    Manufred Member Posts: 241
    Questions for Urologist

    You will want to know if he/she agrees with the radiologist (esp. about the cyst), how they can get the carcinoma out with the best oncological outcome, what they foresee for your immediate convalescence and what follow up scans, frequency, etc they would recommend.  You really only need one kidney so don't be freaked out if they suggest total removal of the left one - depends where in the kidney the tumour is located.

    And you'll get a lot more - this is just a start.

    Best wishes.

  • Jobie123
    Jobie123 Member Posts: 32

    You are definitely not alone.

    You are definitely not alone. I was diagnosed on Monday ... Surgery scheduled for January 16th. I've been freaking out all week but trying to maintain a positive attitude. Timing seems to be everything with this cancer.. The sooner they find it the better. I will tell you... When you go to have your CT scan... That contrast isn't anything nice! They are also going to fill your kidneys and bladder with liquid...I had to go to the bathroom so bad.. And the tech was wanting to talk Christmas shopping... Lol!! I was like...I gotta go to the bathroom NOW!! She said.. Sit still baby we almost done. That contrast will make everything very hot... Even my breath was super hot. 

    Hi just wanted to say hi , I

    Hi just wanted to say hi , I’m 44 and had a radical nephrectomy for a 9 cm tumour on left kidney ! I’ve found the surgery a lot easier to cope with than the mental anxiety x if u can answer any questions feel free to ask

    jo

  • APny
    APny Member Posts: 1,995 Member
    edited December 2017 #13
    I'm surprised the radiologist

    I'm surprised the radiologist was so definitive about it being RCC. While the chances are statistically high that it is, my surgeon/oncologist at Sloan kettering said there's always a 5 percent chance that it isn't. And we've had several people on this forum for whom it turned out to be an oncocytoma, which is benign. But there's no way to tell prior to surgery and pathology. So hold out some hope that you're in the lucky 5 percent, and if not, at least it was found early and you can get it out.

    My advice is to take someone with you when you consult the urologist. Anxiety makes us miss a lot of what is being said so an extra pair of ears are always a good idea. Ask about types of surgery you could have (partial, laproscopic, robotic, etc.) and make sure you find someone who has extensive experience with partial nephrectomies if that type of suregery is possible with the location of the tumor.

    All the best to you!

  • foxhd
    foxhd Member Posts: 3,181
    The vascularity

    of the growth can be a clue that it is RCC.

    Be certain of your docs experience with nephrectomies.

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    edited December 2017 #15
    Brillant..

    advice very well summarised above

    Read them carefully and be fully prepared but I know you are doing that already

    Unfortunately the waiting is dreadful as you are left in limbo usually planning  all sorts  and wondering  how on earth has this happened

    at 4.5 it needs to go asap

    the three cruical things are

    a) As Fox says a Surgeon who is experinced in partial and full nephrectomies.

    Depending how far into the kidney  the mass is you may be forced to do a full but many people prefer to use a surgeon who will promise that a full will only  be usEd after they have failed at doing the partial

     B) how quick they can schedule the op.. speed is always very important when it is over 4cm

     c)no one will be able to tell you much  or anything until it is removed and they have the full pathology verified by both  a Histologist and your Surgical team.. until  then you will drive yourself crazy imaging every possible scenario.try not to do that.

    The bad news it is there.. the good news it is found very early 4.5  in Many cases is very easily removed and a full recovery made and never heard of again

     many reports state that under 4 cm the chance of malignancy is reduced but bear in mind  that over 4 cm 80% of tumours are cancer

     

    I wish you well

    we are here any time

    keep us posted..

     

    Annie

     

     

     

     

  • Thank you all so much for

    Thank you all so much for your experience and wisdom.  Many years ago I worked in an industry that used trichorhexaline (spelling?) for cleaning metal.  I have found in 2 different searches about causes of kidney cancer that this compound is carcinogenic and particulary prone to causing kidney cancer.... I am wondering if this could potentially have caused my kidney tumor.....   Also am wondering about the cyst in the other kidney.   The waiting for the appointment just sucks!  I want to get this done...

    Thanks everybody.

  • foxhd
    foxhd Member Posts: 3,181
    edited December 2017 #17
    Don't go crazy

    looking for explanations why. The time wasted is never recoverable. Move on. Look forward to tomorrow with only positive thoughts.

    If you live to 100, worrying stops you from being well. If you are to die wednesday, why waste it? You and everyone who cares for you will only remember how miserable you were at the end. It is up to you.

  • Angiebby75
    Angiebby75 Member Posts: 208
    You will find lots of good

    You will find lots of good advice here and support here. i just had my surgery in Oct Im learning to take it one day at a time. Find a doctor you trust is most important. Ask many questions I always forget something. Best wishes to you.

  • Rugbyfire44
    Rugbyfire44 Member Posts: 9

    Thank you all so much for

    Thank you all so much for your experience and wisdom.  Many years ago I worked in an industry that used trichorhexaline (spelling?) for cleaning metal.  I have found in 2 different searches about causes of kidney cancer that this compound is carcinogenic and particulary prone to causing kidney cancer.... I am wondering if this could potentially have caused my kidney tumor.....   Also am wondering about the cyst in the other kidney.   The waiting for the appointment just sucks!  I want to get this done...

    Thanks everybody.

    My surgery was in 2013

    Hi Cindy, I had a 7.5cm tumor on my left kidney. Doc told me not to worry, because it was located near some blood vessels it was agreed to do a radical nephrectomy. Since my surgery I have had zero issues and all of my follow ups have found everything to be clear. I feel absolutely normal. So there is a good chance you will be fine. Coincidentally, I worked in a urethane plastic factory when I was young. I cleaned metal daily with Methylene Chloride. I suspect that may be a factor. Since I’ve worked as a Firefighter for 40 years it’s kind of hard to pinpoint the cause. Good luck. Keep us posted.

  • Manufred
    Manufred Member Posts: 241
    Chemical Exposure

    Looking for explanations for our cancers may not help us going forward from where we are now, but can be of benefit to others.

    I have worked as an industrial chemist all my life in the protective coatings (paint) and related industries, and I know a lot of people who have died from various cancers much too early.  My own kidney tumour was detected by an unrelated ultra-sound, and ever since I have pondered whether or not I should be promoting universal ultra-sound scans for people in my industry.

    I can't even begin to analyse which exposures may have caused my own disease as I have worked with reactive gases, solvents, pigments, monomers and resins, isocyanates (urethanes), surfactants and so on, but early detection in a population clearly at risk seems a good idea to me. 

    I really would be interested to know if any others out there have a history of exposure to industrial chemicals.

    Best of luck with your surgery and recovery.

  • Well saw the Dr. yesterday. 

    Well saw the Dr. yesterday.  The tumor is in the lower pole of the kidney and it appears to be within the fascia.  March 12th is the date for the surgery.  He does surgery robotically.  He is unconcerned about the cyst on my right kidney.  Any reccomendations?