35, Just diagnosed

Hi.  My name is Jen and I am terrified to find myself here (hope you understand the feeling).  I was in the process of donating my kidney to a distant cousin dying of kidney disease.  During the final stage of becoming an approved donor you under go a nuclear renal gram and a CT scan. 

 Surprise.  I have a malignant kidney tumor and will be undergoing a partial nephrectomy on May 11. 

 I dont know what to think ... I realize that my prognosis is very good (tumor is small) but I am still overwhelmed with this reality.  I am a mom of 4 boys.  This is not something I ever expected when going from being a kidney DONOR to a Kidney Cancer Patient.

I would love to talk to anyone else who has been in this place -- finding kidney cancer unexpectedly .., being a relatively young patient ... having a partial nephrectomy and what your recovery was like.

 Thanks.

Jen

I was 40 when they accidentally found my kidney tumor.I told them they were crazy i didn't have that but now after 5 yrs and two bouts with this monster it all sank in.My two surgeries were horrible.My body just gave up and they had me on life support twice.I'm on nexavar now and doing okay,except for a few side effects.Not everyone has a tough time in surgery it just so happens i was a big smoker back then and my lungs could'nt handle me being put to sleep.I still enjoy a beer now and then though it makes me sick sometimes.My mom already lost my big brother to cancer 4 yrs. ago,so this id really hard on her.My cancer is genetic and not cause by smoking so i can quit beating myself up about smoking.That took a while.Let us know how your doing.Get your support team ready.You can beat this.Ask your doctor if nexavar can be used after surgery,just in case so nothing comes back.There are no guarantees with this cancer.Good luck!

 

On 4/12/2009 jensboys wrote:

Hi.  My name is Jen and I am terrified to find myself here (hope you understand the feeling).  I was in the process of donating my kidney to a distant cousin dying of kidney disease.  During the final stage of becoming an approved donor you under go a nuclear renal gram and a CT scan. 

 Surprise.  I have a malignant kidney tumor and will be undergoing a partial nephrectomy on May 11. 

 I dont know what to think ... I realize that my prognosis is very good (tumor is small) but I am still overwhelmed with this reality.  I am a mom of 4 boys.  This is not something I ever expected when going from being a kidney DONOR to a Kidney Cancer Patient.

I would love to talk to anyone else who has been in this place -- finding kidney cancer unexpectedly .., being a relatively young patient ... having a partial nephrectomy and what your recovery was like.

 Thanks.

Jen

Hi Jen,

  What a horrible thing to find out when you were being an angel and donating your kidney and to find out that you now have this disease as well, I am a little older than you, I am 44 years old and was diagnosed only 2 weeks ago, so I am very new to this as well, so many questions, I am also scared as you will be, I am also a mother as you are, only I have 3 boys and 1 girl, not only is it hard for us to understand, but even harder for them, my Kidney Cancer was also found by accident, but I am now diagnosed with cancer in my right kidney and measuring 5cm x 6cm and I also have mets to both my lungs, that is the scary part for me, I know living with one kidney is not a problem, but when the cancer is in your lungs that is when the fight to live begins, so for now I have not started treatments yet, I live in Canada, I am going on a clinical trial as of next week for 12 weeks, and then will have my kidney removed, I am excited about my doctor, he is amazing, and I seem to have a bond with him for that I am greatfull, while waiting for treatments to start, I have been taking some alternative herbs to at least feel like I am doing something, so I take a herbal tea called "Essiac" and I also take an immune system boost called Host Defense, I am hoping that both are working in helping to control the Cancer, anyways, I wish you the best, looks like we are both in the early stages of this and I will be watching for you on posts, please keep in touch and we can compare notes.  the words I live by these days, just take it "One Day at a Time" there is actually a song by that name, and a singer by the name of Lynda Randle does a lovely rendition of it, the song insires me when I have a "low day" I play it daily some days and it really helps, anyways, take care of yourself and keep in touch, Janice (Canada)

 

Thank You both for replying ... Janice I am also in Canada - BC in fact. 

 It is scary ... do you think going on meds after is worth it depending on the grade of cancer or should everyone?  No genetic component for me ... just a completely random thing.

 

Janice -- will be praying for you.  I know how this has freaked out my kids ...

Hey Jen, Stay positive for you but also for your boys, they will be looking to you for strength and to know that everything is "okay". I don't know if I can answer any of your questions, i am in the same boat as you and only asking questions myself and hoping to learn as much as I can about it, there is also a Canadian Web site that is really good and informative, I believe its just Kidney Cancer Canada and that is where you can get info about your oncologist and the hospital you will be using, it absolutely answered my questions regarding my doctors and hospital, both came with very high credentials, I am in Hamilton, Ontario so that was one good thing that put my mind at ease, and hopefully you can get the same results about your doctors, I am going for a biopsy possibly tomorrow, or Friday and then I will start my 12 weeks of clinical trial within the next few days, and then will have my kidney removed, no one has the answers of whether or not this is the right way or the wrong way, some people have their kidney out first and then start with the clinical trial, I just have alot of faith in my doctor, and this is the way he has suggested that he feels will work best for me, I believe he is trying to use my age to our advantage, with me being only 44 years old, I think I am stronger right now and in a better frame of mind to deal with the drug for 12 weeks, and I am also a former smoker, so I am trying to go through the withdrawls and side effects that come with quitting smoking, so having 12 weeks as a non smoker under my belt going into surgery hopefully will work out better, I was never a heavy smoker, but any type of a smoker is not good, so lots of stuff to battle right now, and I will pray for you that you will find your own battles and handle them comfortably, and together we will fight this and beat this, I swear. Take care of yourself, keep in touch, Janice

I'm 33, just found out at the end of march that I have a 3.5cm tumor centrally located in my right Kidney.

I have an appointment for a Laproscopic Radical Nephrectomy (full Kidney removal) at the end of the month or I have the option for an Open Partial Nephrectomy on the May 12 (the day after you).

Options are good, but don't know which one is the right option. Does anyone have any ideas? 

Everything has been really scary, but I keep telling myself how lucky I am that they found it. This will be easier to say once I'm recovered. 

No kids yet, my wife and I just got married last year, and hope to have kids next year... we'll see. 

Its just so scary isn't it?  I think the added issues of being "young" (lol ish anyways) make it more of a shock. 

I am really lucky that that I was going to be a kidney donor because it allows me to stay in their program and I have access to all the supports as if I was a donor (nephrologist, surgeon, social worker, nursing staff etc) and the follow up as well.  Along with the fact being Canadian means all the treatment is free.  THANK GOODNESS!!

Noone has said anything to me about meds yet - they wait I guess until after the pathology.  I am having a lapriscopic partial nephrectomy which I do understand are rare but Dr. Ryan Paterson out of St. Paul's and Vancouver General is a specialist with it, and again, I am lucky because the surgeon for the transplant program pulled a few strings and got him for me, and is giving up his own transplant surgery time so that the surgical room is available ... so I can have my surgery.  So I guess -- lol -- if you have to have cancer, I am lucky....  

 My kids are 8, 11, 13, and 14.  They are doing "ok" (again, ok ISH)  Its tough ... my dad was diagnosed with terminal colon cancer in his liver two WEEKS before me.  We two are the first in our family with cancer, and he has 5 siblings, each with kids.   The two of us, in TWO WEEKS.

The weird thing with my diagnosis is that its so out of left field ... I am not a smoker (never, ever in my life even a puff) am in shape, young(ish), etc, etc, etc I cant find any single risk factors, other than living in Canada (low on vit D I guess?/)   its just SOOOO weird.  I dont know how to come to terms it with.

 I certainly appreciate the input and support!!!:)

 

Jen

Because of the location of my tumor they can't do a partial laproscopic nephrectomy, they can only remove the whole thing laproscopicly. I went for an appointment today with another Doctor and he can do a partial removal, but it will be an open nephrectomy.

I'm having a hard time figuring out which option is best. I wish there was a right answer...

Does anyone wonder or worry about doing a partial and not getting all of the tumor? Or worry about it regrowing in the remaining part of the Kidney and spreading? Is this something I should worry about? My doctor didn't seem worried, but it is one of the concerns I have.   

For me recovery time is a huge issue - and with 4 kids, etc, the keyhole procedure will make life bearable after surgery.

 From the research I have done, reoccurance is only in 5% of cases with either a full or partial nephrectomy and that success rates are exactly the same with either surgery.  Because my cancer is in my stronger kidney (I know that because I was donating) I want to keep as much kidney function as possible.  I have a bit of a different perspective because I was preparing to live with only one kidney for life anyways with donating one, so I am highly (probably overly) informed of the long term risks, health issues, etc of livign with one kidney.  Now that I know I may need to retain more kidney function should the cancer return, I am opting for the least invasive proceedure because I am so young.  If I was 55 or older, I would have the kidney removed probably - but I have a lot of years left to live with only one kidney and am choosing to retain the other half of my left if possible.  If the cancer was in my weaker kidney, I would have probably considered a radical at this point.

 

Also, I have been offerred CT scans every six months for the next 5 years, and a CT yearly after that for the rest of my life through the donor program.  I will be VERY proactive with follow up care.  SO - no I am not concerned overy about reoccurance because we will catch it early if it hapens.

 

Jen

 

On 4/16/2009 jensboys wrote:

For me recovery time is a huge issue - and with 4 kids, etc, the keyhole procedure will make life bearable after surgery.

 From the research I have done, reoccurance is only in 5% of cases with either a full or partial nephrectomy and that success rates are exactly the same with either surgery.  Because my cancer is in my stronger kidney (I know that because I was donating) I want to keep as much kidney function as possible.  I have a bit of a different perspective because I was preparing to live with only one kidney for life anyways with donating one, so I am highly (probably overly) informed of the long term risks, health issues, etc of livign with one kidney.  Now that I know I may need to retain more kidney function should the cancer return, I am opting for the least invasive proceedure because I am so young.  If I was 55 or older, I would have the kidney removed probably - but I have a lot of years left to live with only one kidney and am choosing to retain the other half of my left if possible.  If the cancer was in my weaker kidney, I would have probably considered a radical at this point.

 

Also, I have been offerred CT scans every six months for the next 5 years, and a CT yearly after that for the rest of my life through the donor program.  I will be VERY proactive with follow up care.  SO - no I am not concerned overy about reoccurance because we will catch it early if it hapens.

 

Jen

Jen,

I am so happy to hear that you will be followed for life.  That is the only message I tell people.  I had my left kidney removed in 1997.  It was clear cell, stage 1, had not spread & was told I was cured.  11 years later it has returned to outside of my lung.

Best of luck with everything & keep us posted on how you are doing.

Joanne