New diagnosed kidney cancer scared

Hi I am 36 year old military wife who just graduated with my BSN. I was told yesterday by urologist that I have stage 3 kidney cancer. I have 5cm mass on left kidney mid to lower pole. It has spread to 3 lymph nodes. He is going to do surgery in 2 weeks to remove entire left kidney but leave my adrenal gland and remove 4 to 5 lymph nodes. I have appt with oncologist tomorrow to talk about sutent for treatment afterwards. Can anyone tell me what the chances this has spread other places?? I am having pet scan done and ct of chest and MRI of brain done tomorrow. I have not been able to stop crying and I am worried about dying and my children are 4 and 9 and I cannot bear the thought of leaving them. Any suggestions or good news would be great. All I can find is negative things on internet. I just want something good to hold on to. Thanks,

Brandi

Brandi-

I don't blame you for being scared. 

My husband was diagnosed with stage 4 RCC in August of 2010.  He had mets in the other good kidney, both adrenal glands and both lungs.  We almost lost him.  A fantastic surgeon removed his left kidney, adrenal gland and a football sized tumor. 

After surgery we met with the oncologist who outlined 4-5 different avenues of treatment we could pursue.  He took a lot of time and explained in detail the pros and cons of each type of treatment.  Sutent was among the choices.  We chose high dose IL-2 as it is the only drug that is known to actually destroy the cancer.  It does not work for everyone, in fact, the chances of remmission are very low.  We are one of the lucky ones!  Orville's last 2 scans showed that he was cancer free.  All the mets had shrunk to nothing!!  Don't give up hope.  Have the surgery and while you are recovering investigate your options.  YouDOhave options.  Make certain that your oncologist specializes in kidney cancer. That is probably the most important factor of all!  I don't know where you are located but we went to Seattle Kidney Care Alliance.  I cannot begin to tell you how amazing they were and the wonderful care (and caring) that he got!

Orville now goes in for scans every 6 months.  Seems so wierd to go that long with no doctor appointments or hospital visits!  He, in fact, is at SCCA right now having his 6 month scan.  Wish us luck!

God bless as you embark on this journey.  Keep the faith!  New treatments are being discovered all the time.

 

 

Hi Jaxbran

Sorry about your situation.  Six and 1/2 years ago I was dx with stage 4 kidney cancer.  I am still here and living a almost normal life.  I am 66.

Mine had spread to lungs and bones, in fact a bone fracture due to a metatsis led to my diagnosis. 

There is no way to know if yours has spread further without the scans.  However, since yours has spread beyond the kidney, you will need to be scanned regularly.  Find out what type of kidney cancer you have.  The pathology report after the surgery should give you the type.  The treatments today are far better then they were several years ago.  Bring along another person when you meet with your doctors, as the second person will hear things that you might miss due to all emotion involved.  Keep a written record of everything. Try to get an appointment with a kidney cancer specialist.

Your youth will help you fight this horid disease.  Try to be as positive and as knowledgeable as possible.  There are many people on this site who have been battling kidney cancer for many years.

Jim

Hi Brandi, Please don't ever give up hope and try to stay positive. That's so important. All of us have had to deal with the shock of this diagnosis. I had never even heard of RCC until February 2007, when I learned I was Stage IV. Local oncs were very grim, so I got to a major cancer facility with RCC specialist. That is THE most important thing you can do! Just so you know how bad my situation was/is, I was deemed inoperable because I have multiple tumors in both kidneys, mets to T2-T4 vertebrea, right iliac bone, my 4th right rear rib had been destroyed by a huge tumor that was bigger than my fist and there were other mets to the lung, liver and lymphs. Like others have said, you'd probably be a good candidate for HDIL2. I wasn't eligible due to an autoimmune disease, but did 2 weeks of high dose radiation to my bone mets and then began on Sutent. Just yesterday we were at my doc's for the results of my latest scan. I am still stable! Since diagnosis, I have not had any growth or new sites pop up. As my doctor told me over 5 years ago, we are in an era of "living with cancer" as a chronic disease. I hope you never need to go to Sutent, but if you do, please know that for some of us it has done amazing things. Yeah the side effects can be tough, but if they are properly dealt with, you can live a fairly normal life. In 2007 I could barely walk. Last weekend I played golf and felt great. I've lived to see our last 2 children get married and our first 2 grand children born! These are things I never expected to be around for. With all the new treatment options, the outlook is much better that what you read in some places on the Internet. You have to be careful because a lot of statistics and data are very old and do not reflect the impact of new meds. Another great place to ask questions and hear from patients and caregivers in the ACOR kidney-onc list serve. Check it out. There are arounf 1700 active members there. Best wishes for good health, Shaun

Brandi, take it from a recently diagnosed (Jan 2012) stage 4 kidney cancer patient, it is alright to be scared. I am a 51 yr old male with two college age children. I was told that I am too far gone to be a candidate for surgery. I have a large mass on my left kidney (no symptoms)and a large mass on my right scapula. (Some pain and limited mobility with my right shoulder). I started Sutent in late Feb and I am in the middle of my third cycle. My latest ct scan showed necrosis of both tumors (great news!) and 7 or more lung lesions of 10 millimeters. (bad news). In your journey, try to focus on the positives. Initially, I cancelled all my long term plans and started to get my affairs in order, per doctors instructions. Today, I am hoping to purchase another investment property and start a rehab project. I am purchasing season tickets for the Chargers, because I believe I will be around long enough to either suffer thru or enjoy another season of pro football. While my odds of surviving another 5 years are under 10%, I choose to believe I will fall in the 10% category. I want to see my kids graduate from college. I want to witness them getting married and I want to see my grandkids. based on your diagnosis and age, I sincerely believe your chances for a positive outcome will be much greater than people like me. And with more new drug therapies on the horizon, it is true that we are entering an age where this disease will be treated as a chronic disease and not a death sentence, even for stage 3 or stage 4  patients like us. Good luck, I know you will fight a good fight. Porkman      

Porkman-

Don't believe the statistics.  They are from old data.  The newer drugs have not been factored in. 

I think you better buy several years of Charger tickets.  (Although I don't know why you would want to ).  Go Vikings (even though I'm from Seattle) 

Marcy

Hi Brandi

An excellent test to look for other areas in the body where cancer may have spread would be a scan called a PET-CT - this is a nuclear scan and will show up any uptake in active tumors and can be more sensitive than CT only - especially to pick up small areas confined to lymph nodes etc. This will be useful to tell you and also reassure you the cancer may be localised to the area thus far indentified. I had a look at the literature for you and it seems this is useful test to have before your surgery. There is also one paper that suggests a simple blood measure of CRP may be useful to have before surgery to have a baseline measure and screen for reocurrance - there are emeging biomakers but not much known. Hope this helps and the process is usually fast from diagnosis to surgery and then you need to think what is best for you after when you have all the pathology etc back so they know what in fact you do have.

 

Careful what you read or see on the web, I was advised by Mayo PET scans are not appropriate for RCC.  CT or MRI are the sure way to see if anything else is there.

With that said, I'm 65 a Stage 3, going on 4 1/2 years free of further growth after the right kidney removal.  But if anything, it truly gives you a value of life and everything around you. You are young enough to beat this and have a joyous time, even more special now since you know far more than someone who has not had an awakening moment.  You'll do fine.  Get the best you can and do call in support.

Hi Brandy.

I had a kidneybtumor removed this past January and a hysterectomy 2 weeks ago. I have stage III C endomitrial Carcinoma. I too had 3 cancerous lymph nodes, but they removed 5 of them. Don't be scared. Keeping cool is half of the healing process. I was told to do 6 sessions of chemo and radiation. I came accross the Gerson Therapy method. I have a 29 year old son and a 27 year old daughter who drove me nuts when I told them I decided against chemo. But now, after they saw the documentaries The Gerson Miracle, The God bless you. beautiful Truth and Dying to have Known on Netflix instant watch, they support my decision. My son in on his last year of Nursing School and looked it up with another friend about it. I'm reading the book Healing the Gerson Way. It is amazing how it all make sense. I haven't started yet because I still have to see about another cancer tumor I have in my thyroid gland and maybe one breast. Do not let people to tell you what to do. Before making a decision, do some research. In 2 weeks I will go to London o meet with a cancer survival whom did the Gerson Therapy after he was given weeks to live. If u want to write me, you are welcomed at

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I'm sorry Brandy. In the middle of my reply there is an error. I think I ran out of space and the words God Bless you was typed in the middld of the wong paragraph , interrupting the name of the documentaries. 

Here are the following documentaries:

The Gerson Miracle

The Beautiful Truth

Dying to Have Known

Book called Healing the Gerson way.If you write me later at amaliacoe@yahoo.com  I can send you a paper containing a lot of places for you to look up, facilitating your decision making without steering yo to any type or ways of therapy. It was sent to me by the survival from Engkand. He wrote this 33 page paper to help people like us who need to decide which avenue o take.

If they are remkving your kidney, I suggest robotic surgery if possible. I have a large scar on my side and took longer tonrecover. It was very ainful specially because after surgery I needed t cough and could'not with so much pain. Avoid cuts if you can.  The robotic way was easier for me as far as time o recover and pain.