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Newly diagnosed kidney cancer

DianaLou
Posts: 30
Joined: Nov 2009

After experiencing severe abdominal pain, a trip to the ER and many tests later, I was diagnosed with 7cc tumor on right kidney. Surgery scheduled for 9-20-2010 at a major cancer center in my area. Doctors plan on doing a partial nephrectomy. CT, MRI and sonogram show no evidence of it spreading beyond original site. Any info would be greatly appreciated.

icemantoo's picture
icemantoo
Posts: 1660
Joined: Jan 2010

I assume your tumor is 7cm. not 7 cc. You were lucky this was discovered as those tumors larger than yours often metastisize if they are not removed. The surgery is not fun, but things should improve from there. My surgery was on 8.1.02 and I am doing fine and trying to give encouagement to others as I know what you are going thru.

Von55's picture
Von55
Posts: 57
Joined: Aug 2010

Hi!
You must be feeling a lot of things right now! I too am having a partial nephrectomy on 20th Sept (left kidney, 4cm RCC, no mets). I'd really like to compare notes along the way if you're up to it? Originally I was supposed to have a laproscopic radical, but further imaging downsized the tumour and so I'm eligible for a partial. Here in Australia the standard procedure for partials is through open surgery- bigger incision, longer recovery etc but I'm ok with that if it means that they can ensure a definite negative margin for the remaining part of the kidney. It's going to be a very interesting few months! How fortunate we are to have these wonderful surgeons and nurses to help us- and to have discussion boards like this one to bounce experiences & thoughts back & forth.
All the best to you- you're not alone, and there's a lot of info & support out there!

DianaLou
Posts: 30
Joined: Nov 2009

Icemantoo...thanks for the encouragement. This has all happened so fast. I was just recovering from DCIS (breast cancer) when this just popped up . No real symptoms until the pain, but the doctor says it has been growing for years.

Von55...I think it will be interesting to compare notes. I am so fortunate to have such a reknown cancer center so close by. What were your symptoms? I am not at all learned in this. Just learning as I go. Fortunately, I have a good friend who is a nurse and she is accompanying me to my appts.

Von55's picture
Von55
Posts: 57
Joined: Aug 2010

Mmm, well the only symptoms I really had were some abdominal discomfort & extreme tiredness. I'd had a perforated gastric ulcer 5-6yrs ago & was worried that it had flared up again, so went for an ultrasound- thank God, because they found the tumour (and some gallstones, but I'm not worrying about them!). So you've just recovered from breast cancer? You poor pet, it sounds like you've been through the wringer! That's good that you have a friend to go with you to appts- often they can ask all the right questions- if you're like me, your head's spinning and it's hard to take it all in. How are you feeling about the surgery?

icemantoo's picture
icemantoo
Posts: 1660
Joined: Jan 2010

DianaLou and Von 55,

I had symtoms for years, I just did not connect the dots. Then one day I did some heavy yard work and something that was supposed to be yellow turned red. My GP suggested that I probably just broke a blood vessel, but suggested I see a Urologist to play it safe. The Urologist did a CYA CT scan and here I am part of this group.

As most of us know Kidney Cancer is difficult to diagnose from symtoms which mask themselves as other ailments. Fortunately a little over 50% of us are diagnosed before the tumor gets very large and starts metasticising and as to that fortunate 50 plus % (myself luckily included) surgery generally does cure Kidney Cancer. The best diagnostic tool for Kidney Cancer is the C-T scan which is generally not offered until a finding such as blood in the Urine or is offered for symtoms which are believed to be unrelated to Kidney Cancer and the Kidney Cancer is diagnosed.. After we are diagnosed with Kidney Cancer we play Monday morning quarterback and realize we did have other symtoms which neither we or our doctor connected the dots to Kidney Cancer. My other symtoms were pains in my back which I thought was lower back pain and pains shooting up my leg when driving for an hour or longer. My GP suggested I see an Orthopedic Surgeon for those pains. Both went away after my surgery.

I believe that the subject of symtoms for Kidney Cancer deserves a lot more attention and discussion especially in the medical profession among general practitioners.

madiarsg's picture
madiarsg
Posts: 17
Joined: Aug 2010

I also had lower back pain for the last year, which I was attributing to my history of degenerative discs, but MRI after MRI showed no issues with my back. Even the steroid shots I normally get for back pain did nothing to relieve it. I also had been working with my therapist as to why I was so tired all the time. We changed medication after medication, upped my sleeping meds, tried sleep CDs, melatonin, set bedtime, etc - nothing has been working. A month ago, my right kidney started hurting, so I went into the ER thinking that I had a kidney stone. Instead, I had a 4.5 cm by 4.3 cm complex cyst on my kidney. Now, I go in tomorrow to get the results of my contrast CT, and I am worried and angry. Why are the symptoms not discussed more? All together, it makes sense, but no one put anything together. I would love for this to be more commonly know among general practitioners, as most Kidney Cancers are diagnosed incidentally, and sometimes too far advanced for much help.

madiarsg's picture
madiarsg
Posts: 17
Joined: Aug 2010

I also had lower back pain for the last year, which I was attributing to my history of degenerative discs, but MRI after MRI showed no issues with my back. Even the steroid shots I normally get for back pain did nothing to relieve it. I also had been working with my therapist as to why I was so tired all the time. We changed medication after medication, upped my sleeping meds, tried sleep CDs, melatonin, set bedtime, etc - nothing has been working. A month ago, my right kidney started hurting, so I went into the ER thinking that I had a kidney stone. Instead, I had a 4.5 cm by 4.3 cm complex cyst on my kidney. Now, I go in tomorrow to get the results of my contrast CT, and I am worried and angry. Why are the symptoms not discussed more? All together, it makes sense, but no one put anything together. I would love for this to be more commonly know among general practitioners, as most Kidney Cancers are diagnosed incidentally, and sometimes too far advanced for much help.

DianaLou
Posts: 30
Joined: Nov 2009

I, too, have been extremely fatigued, but attributed it to the 7 weeks of radiation for my DCIS. I can sleep 8 hours, and feel like I haven't slept at all. I am looking forward to having the surgery over with. A little over a week now for both of us, Von55. I have faith in my doctor. What can I expect after surgery? Will I need help at home for a while?

icemantoo's picture
icemantoo
Posts: 1660
Joined: Jan 2010

You are not going to feel like doing anything for a week or 10 days after your surgery. Your other issues may make this longer. However you should be OK to walk. drive make meals etc. by the time the World Series starts.

DianaLou
Posts: 30
Joined: Nov 2009

Big sports fan that I am (not), when is the World Series, mid October??..LOL

icemantoo's picture
icemantoo
Posts: 1660
Joined: Jan 2010

The regular season ends October 3 with the playoffs starting October 6 and depending on how long the playoffs go mid October sounds right for the World Series. You should be able to jump up and down and scream as the World Series gets going.

DianaLou
Posts: 30
Joined: Nov 2009

Yep....I'll be glued to the TV for sure...LOL. I see my PCP tomorrow for medical clearance for surgery, then Wed. I will go to the cancer center (Roswell Park, in Buffalo, NY) for all the labs, EKG, meet with anesthesia, etc. How's it going for you, Von55??

DianaLou
Posts: 30
Joined: Nov 2009

I had my pre-op physical, and all labs, EKG, etc. I am now good to go for Monday. I am feeling a bit anxious, but want to get this behind me. I will post more after the surgery.

Von55....hope you are doing okay.

VeryAnxious
Posts: 67
Joined: Sep 2010

It is normal to feel anxious, try and keep busy. I am also feeling anxious and my surgery is oct 1. Keep positive thoughts and pray. It does help. Just be glad it was caught when it was. Keep posted and you will do fine.

Von55's picture
Von55
Posts: 57
Joined: Aug 2010

Hi DianaLou!
How are you feeling? I have to say, this pain is a lot more intense than I was expecting!! Did your surgery go ahead as planned? Mine went well (apparently) and the surgeon is now on holidays for a month so I can't ask him all those questions I want answers to- maybe that's a good sign though, lol!
The incision is approx 14" long, and there are two other wounds- one for the paravertebral block (and boy did I hate having that removed on the 4th day!) and another for the drain which was removed on Day 5. I have lots of small blisters on my back which itch like crazy, and the incision pain is vying with the arthritis pain for top billing! Having to stay still in such an awkward position for a 3-4hr surgery is really hard on a bad back. I had no nausea from the anaesthetics, and was up sitting in a chair and shuffling around the ward the next day- starving hungry too, for the first time in many months!
I came home on Day 5, and aside from the pain & tiredness am feeling great- how about you? Please write when you can & let me know how you are. I might sound negative about the pain & all, but at least I'm still here & able to feel things, and that's a BIG positive!
All the best,
Von xx

DianaLou
Posts: 30
Joined: Nov 2009

It's been 2 weeks now post surgery and I am beginning to feel like my old self finally. The doctor was able to do the surgery robotically as planned. They got all of the cancer, margins were clear and I also lost 50% of my right kidney. I was released from the hospital 2 days after surgery. I have 5 small incision sites, (1-2" each), which were closed with surgical glue, no stitches. They now itch like crazy. I was up and around the next day as well, but not particularily hungry. I am quite tired and have been taking a nap daily, which helps alot. I ventured out on my own yesterday, to WalMart, did fine, and it was great to go somewhere other than the doctor. I never had unbearable pain, meds worked great. I am so glad to hear your surgery went well, also. Take care..........

PrayEatLoveLaugh
Posts: 6
Joined: Sep 2010

I know just how you feel DianaLou. I was diagnosed in October 2007 - in the ER with complaints of right-sided abdominal/pelvic pain. My tumor was 2.4 cm then and is now 5 cm. I have been uninsured - so no surgery or treatment. I can't really comment on surgery or treatment - but am here to help in any way I can as you deal with your diagnosis and the pathology report that will follow.

I am part of a great Kidney Cancer Support Group at Kidney Cancer Konnection. We have Kidney Cancer Chat at least four times a week. We have a great group of people who have a wealth of wisdom and compassion to offer.

If you need to talk - just message me. You can visit http://www.kidneycancerkonnection.com to view the chat schedule and learn more about kidney cancer.

Kristy
http://prayeatlovelaugh.wordpress.com

icemantoo's picture
icemantoo
Posts: 1660
Joined: Jan 2010

Von 55 and DianaLou,

Now that the surgery is over you can hopefully tell people that you once had Kidney Cancer. It is time to forget about the surgery and get into the Workd Series with the playoff games starting tomorrow. Only those who have gone through the surgery have a right to make light of it.

Icemantoo

fighting_the_fight
Posts: 10
Joined: Oct 2010

Kristy,

I may be mistaken, but I think the American Cancer Society offers help with financial needs for surgery and/or treatment. You might want to contact them. Just a thought.

msdubya
Posts: 4
Joined: Sep 2010

I've received a couple of kidney cancer diagnoses. The first one was in 2000 - radical nephrectomy for renal cell carcinoma. MRI showed a 2.5 cm tumor but after the surgeon got inside to look around, took out what he called a small football!
Other kidney cancer was in 2003 - a partial nephrectomy. Don't remember what kind it was called now. Took about a third of my kidney.
Only symptom I had was a small "discomfort" in my lower abdomen. Turns out the kidney tumor wasn't the cause of that pain....I also had prostate cancer. That was removed between the cancer surgeries....no more symptoms.
Hang in there. It does get better.

blackbelt's picture
blackbelt
Posts: 32
Joined: Apr 2006

I had a open partial nephrectomy on 5/17/2006 at the age of 51, renal cell carcinoma, clear cell type, Fuhrman grade 2, stage I, 1.2 cm right renal mass, with complications, doctors nicked right lung and nicked lower abdominal peritoneum area, this kind of surgery was high risk high return because of location of kidney tumor! I still have all the symptoms/complains except urine in my blood. I have been living with symptons/complaints since April 31, 2001. When you're first diagnosed with cancer you have to make a decision is it a life sentence or a death sentence? Of course you must choose to live a long life, it's your choice not to play the victim! Remember you are in charge of your health and dealing/living with cancer. Do your research, feel free to e-mail me I'd be happy to share my knowledge and experience about diet/nutrition/positive thoughts/attitude/pain management, & get rid of all negitive energy in your life, I am living proof you can live with cancer!

Please check out my CSN SPACE-ABOUT ME!
GOOD LUCK!

edconcep
Posts: 1
Joined: Nov 2010

Thanks for sharing your story.
In 2009 I was diagnosed w/ advance RCC. My right kidney was removed August of the same year. Unfortunately they found spread in my right lungs. On Nov. 2009 I started taking nexavar. It didn't work and the side effects are intolerable. After a couple of months, the CT scan shows that there is progression. My oncologist decided to change it to Sutent. I took it for 6 months. Then, just last week 11/16 they did a follow-up CT scan. It shows they found more nodules in my lungs (according to my oncologist it is really tiny) and some gets bigger around 1" in dia. Since both medications didn't work, they will put me on regular chemo (infusion). It will be once-a-week and the name of my medication is Toresil.
My mind is still confused if I will do this or not. Thanks and God bless.

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