Just diagnosed and Operated on

Mark,

Welcome to the club which nobody asked to join. The surgery was not fun, but that is your initiation to Kidney Cancer. Obviously you joined with a little extra baggage than some having been quoted a 40% recurrance rate and having the surgery done so fast.

If you would share with the members the size of your tumors and pathology you will get some real support from members going thru what you are going thru. Without that information it is a little hard for other members to relate to your case.

Icemantoo

garym said:

Odds are for Vegas...

Hi Mark,

The emotional roller coaster you describe is completely normal, we've all been there and we understand.  It takes awhile for your mind to catch up after the "You have cancer and you need surgery." freight train runs you over, but you have come to the right place and we'll help get you through it.  First off what your doctor told you is old school, "IF" it comes back there is every reason to believe that one of the therapies available today will be effective in combatting it.  There are several members here with a much worse prognosis than yours that are doing great.  Read foxhd's story, he is now a year past his predicted expiration date and after having dozens of tumors is now very close to being cancer free thanks to a trial he is in, read his "What a WONDERFUL day" thread.  Texas Wedge is another member you should check out and there are many more, follow the Votrient threads for starters.  The bottom line is there are effective options available and more are in the works, many manage RCC today as a chronic, not terminal, disease.

Iceman requested a bit more information, if you are so inclined that would be helpful, we're not doctors, but we are experienced and want to help.

Keep us posted,

Gary

It sure is like a freight train. So sudden and scarey. It caught me the same way. And yes we do know how you feel and what you are going through. You may be the teacher but stay around here. You've got a lot to learn. First recover from surgery. Don't push yourself. Second, there are options for treatment that your doctors probably don't know about. It is a common theme . And you will be surprised at the wealth of information regarding drugs and trials keeping many of us strong, active and healthy. Now you can't do ANYTHING about having had kidney cancer and surgery. So do not spend too much time letting it depress you. Accept it. Like no longer being a virgin. Too late now. Nothing you can do about it. (worse part is it is more like having a regrettable partner and you want to throw up.).....OK, also get used to our humor. It happens when you've been here a while. (that means we are LIVING proof of optimizing our proactiveness.) The cancer does suck and none of us want to be here. It is another of lifes personal experience. Read my posts when I signed on here and where I am now. That should give you hope. At least a laugh. Read others stories also. It will take some time to get this all in good perspective. You can do it.

mrou50 said:

Tumors
The first tumor was 7.5 cm, the Urologist said about the size of a tennis ball, the second tumor was 2 cm. I am not sure what Pathology is I am still learning all of this and to be honest still "freaked out" and wondering what I did to get this. I worked out five days a week running, weight lifting, and I ate fairly healthy ( I would never say perfect on this one). The reason the Oncologist said 40 percent was the fact that I had two tumors and a history of colon polyps all precancerous since I was 35. So he said that ups my chances. Still I know that I need to focus on the positive and this group seems pretty supportive and positive.

Mark

Mark,

You should have received a pathology report a few days after surgery, it would state size, stage, grade and type of RCC and it should also mention "margins" which if clear means it was contained and you may never need further treatment.  If you didn't get a copy ask your doctor for one, it will help as you learn more.  "What did I do to get this?" is a pretty common question, unfortunately there is no clear answer.  RCC makes up about 3% of all cancers so its kinda rare, obesity and smoking increase risk, but many here were in good physical condition and had never smoked.  Its unlikely that you could have done anything different to avoid it.  Freaking out is normal and part of the healing process which btw takes longer mentally than physically.  Eventually you will come to terms with it and understand that it is just one of those things you will never have a solid answer for.  The fear subsides over time, but I don't believe it ever goes away completely, it just becomes a part of who you are if that makes sense.  It gets better, I promise.

Hang in there,

Gary

mrou50 said:

Thanks

Gary thanks for the encouragement I was told by a lady who had cancer the same thing to focus on the positive and that there are a great deal of medications that are working, but I have to say it is the waiting that drives me crazy now.  Every time I get a pain or a rash, or I feel nasea I think oh God it is back and it has only been six weeks.  I have my first post CT scan and MRI in mid June and I am terrified.

 

Mark

Did you Doctor explain anything to you? besides to tell you.. you had a 40 percent chance of reoccur.. and that it would be fatal if that happened.. Have you seen an actual Oncologist in addition to the Urologist? Have you checked into Medicaid to help pay for your medical bills and get rid of at least some of that stress? I ask these questions because in July when we started on our much uninvited journey we had no clue about Kidney Cancer or what it entailed.. we were very fortunate to end up where we did.. with the doctors we had... a Urological Oncologist who not only was not afraid to bring another Oncologist on board but insisted on it... I will tell you what they told my Husband in July and maybe that will help you.. It is a good time to get Kidney Cancer(if any is).. 10 even 5 years ago.. there was so much less known about it...Don't let fear control your reactions.. a little education about Kidney Cancer goes along way.. we do not understand some of our reports.. some on here do so much better at that... Texas is an ecyclopedia (meant in the nicest way) but we have amazing doctors who are willing to talk to us about them anytime..they also call to see if we have questions after an appointment..And recovery from the Kidney removal takes time.. you are going to have pain that has nothing to do with a reoccur of Cancer.. and everything to do with your body trying to adjust...give it a little and relax... you did nothing to bring this on.. it happens.. no one really knows why it just does...Our orig Oncologist called this the barganing and questioning phase...it's normal.. and if you have any  concerns call your doctor.. if they don't answer them get another opinion.. it's your life you have a right to information!! And stick around here.. the knowledge base is pretty awesome and if nothing else it tells you.. YOU ARE NOT ALONE!! Enjoy spring.. don't let anything steal your Joy...Huggggssss

Hi im sorry that your going thru the emotions, i just had my open radical done March 11 to remove my 21x18x15.5cm tumor and right kidney...so I know the emotional strain. I hope this site is as helpful to you as it has been to me. Ill be praying for you and your family, I keep telling myself this journey is a test of faith and strength...with you being a teacher I know youll pass this test with flying colors.