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Dan6652
Posts: 25
Joined: Oct 2016

Does anyone know of a good RCC specialist in Pittsburgh,Pennsylvania?

 

Thank you,

icemantoo's picture
icemantoo
Posts: 3280
Joined: Jan 2010

Dan,

 

Start at the top with UPMC. Also tell us where you are on your journey and what your situation is.

 

Icemantoo

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Tell us your story.

Dan6652
Posts: 25
Joined: Oct 2016

Footstomper and Icemantoo,

 

Thank you for your replies.

This is actually not my story but my brother's....

In July, he started complaining of back pain which his PCP thought was muscular in nature. That is until he ended up in the ER in mid September with pain he could not endure. On September 16th, he was diagnosed with Stage 4 Kidney cancer  (8 cm mass on kidney with met to T-11 and 2 small nodules in the lung that they assumed was RRC but too small to biopsy).  He had his kidney removed laproscopically on September 22nd and came home with a plan to see an Oncologist at the Hillman Cancer Center in Pittsburgh, Pennsylvania. The oncologist was very positive told him about IL-2 (felt he was a good candidate) or the target therapies but stated that his first priority was to have the gamma knive to remove the spinal met since he was still  on a number of narcotics and in a lot of pain.

Last Friday when he went to prep for the gamma knife, he was in so much pain he could not sit for the MRI. They sedated him and did the MRI and determined that they would need to operate on T-11 to allow room between the lesion and the spinal cord so they could safely do the gamma knife, allieviate his pain and stablize the spine. He had a 6 hour operation on Tuesday of this week which was 6 hours long. The neurosurgeion said the lesion was pressing on a nerve causing his severe pain.  He is recovering from the surgery but it will be a long haul. He is very, very weak and has 3 blood transfusions not to mention 2 major surgeries in a month.

Needless to say, we are devasted. He's 59 years old and the nicest man you would ever want to meet. He's been so brave through this but we are a mess. His wife and son have been by his side every step of the way along with me his sister, my other sister, my mom and all of the extended family. He's been positive up to this point but now he seems to be very down. I think it's all finally sinking in. My mom is 86 and spends most of her days wishing it was her instead of him. On Saturday, he was having hip pain so the neurosurgeon thought it be best to scan his hip. Thankfully, the scan was negative. I spend most of my days absolutley terrified of what's next. Because of the spine surgery, his treatment is being delayed which cannot be good. Every time a new pain appears, we think the worst. The thought of him going through IL-2 sends me into orbit since he has already suffered so much.

I'm glad I found this website and the smartpatients website. When I feel like I'm about to lose my sanity, I come on here to read the success stories. Thank you for being here. I wish you all the best in fighting this disease.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

The diagnosis is a shocker. There is nothing to which it can really be compared. I was also diagnosed Stage 4 Grade 4 on May 1 2013 and I'm still here. There are people on this board who were diagnosed well before me. The diagnosis is a shock but not a death sentence.

I'm glad you found this place and smart patients. I wouldnt go anywhere else on the web. Its mostly out of date insane or both. You've got enough to deal with right now. Recovering from 2 major surgeries is probably enough to be getting on with right now, without being informed that your bro is suffering from a government plot or alien invasion.

The scan on the hip was good news take time to enjoy that for the good news it is. Tomorrow can look after itself. Other good news, if the Doc thinks he's up to IL2 then he has faith that your brother is pretty strong. Oh I would'nt bother looking up IL2 either, although I suspect you already have. I had it, a number of us  have had IL2 which seriously retarded our tumours.

Try not to be terrified. Easier said than done I know. Just take it one day at a time

and welcome.

lobbyist0724's picture
lobbyist0724
Posts: 418
Joined: Sep 2016

One of the founders from Kidney Cancer Canada diagnosed her cancer when she was 19, recurred and became stage 4 in her 30's. She is now 53 and is still fighting with this disease and helping other patients!

Best wishes!!

Dan6652
Posts: 25
Joined: Oct 2016

Than you.

Dan6652
Posts: 25
Joined: Oct 2016

Thank you for the encouraging words.

Dan6652
Posts: 25
Joined: Oct 2016

I admire your courage. I wish I had some. Thank you for giving us hope that this isn't the end of the line.

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

Dan, your brother's story sound remarkably similar to mine:

Unbearable back pain

Laproscopy on September 22 (yep, the exact date)

Spinal met compressing spinal cord requiring surgery  (mine was at T6/T7)

I will be following his story closely on the forums.

I'm as new to this as you, so I have no profound advice. I just know I'm going to fight this all the way. This place and the numerous people on here that show the Internet stats to be meaningless  give me strength.

Dan6652
Posts: 25
Joined: Oct 2016

Abunai,

Your story is remarkably similar to my brother's. He is also prepared to fight but has had so much pain from the spinal met we are hoping the surgery enables him to get off some of the pain meds. Were you also in pain from your spinal mets? This is a scary journey. Best of luck to you and thanks for your response. It helps to know we are not alone.

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

Yeah, the spinal met was very painful. I could not sleep on my back, and the pain was still there following the nephrectomy.

I am SOOO much better following the "debulking" surgery for the spinal tumor. I'm still taking percoset for the surgery pain, and another med for the nerve pain that still exists from the spinal cord compression, but it's very manageable.

Dan6652
Posts: 25
Joined: Oct 2016

Thank you for your reply.

He is very afraid of the pain coming back and it's difficult to tell if it will being he is still on pain meds from the surgery.

You are saying your nerve pain still exists which concerns me. He becomes very anxious when he thinks the pain will come back.

Did they say you would eventually get off the medication completely or do they expect you to always have some nerve pain?

I would think since the pressure is off the spinal cord and  the surrounding nerves, the pain would go away completely?

How long did you do PT/OT? He just started his yesterday as an inpatient but seems to be doing well other than being very concerned with his pre-surgery pain returning.

I'm sorry for all the questions I'm just trying to benchmark his progress with someone going through the same thing.

Thanks again.

 

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

Dan,

Nobody is willing to give me a prognosis regarding the nerve pain or my mobility. Even though the spinal cord is decompressed, there was an injury and it's hard to say how much, if any functionality will come back or how much nerve pain will go away. But, again, the medication really helps it (Gabapentin/Neurontin).

I did 2 weeks of in-patient PT/OT, and just started my out-patient PT, which is scheduled through mid-December.

I've gone from absolutely no function in my left leg and minimal function in my right to being able to walk with Loftstrand crutches, and I feel like I'll continue to improve. The function is coming back faster than the nerve pain is going away, but the nerve pain is nothing compared to what it was prior to the debulking surgery.

Hope this helps :)

Dan6652
Posts: 25
Joined: Oct 2016

Yes, it's frustrating there seems to be no guarantees with pain, treatment or anything. My brother is currently on his second day of inpatient PT/OT and is improving. I so look forward to the day when he is walking around with some pep in his step. The last six weeks have been brutal.

Has anyone offered you the change for IL-2? The oncologist said my brother is a candidate so I think he is going to try it. The chance of remission is small but definately worth a shot.

Thank you so much for answering my questions.

Good luck with your future treatment!

Keep us posted.

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

No discussion of IL-2 from my doctor. I'll ask about it. Thanks!

I do know that I am not a candidate for clinical trials because all of my mets are in the bone and can't be measured for "response rate".

 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

All I'll say is that it is a pretty serious treatment not to be undertaken lightly. But by all means talk to your Dr about it.

Srashedb
Posts: 482
Joined: Dec 2013

Your brother's story sounds remarkably similar to my husband's; he too had back and flank/hip pain got close to 2 years and his GP sent him to physical therapy, told him to take  and motrin.

after a while my husband demanded an MRI; that came back with a large mass on his kidney and two areas on the spine (T11 and L3-4) closely approaching the nerves and ready to compress.

After some discussion between the team of doctors, they proceeded with a laminectomy to the L3; surgery went great and he came home in a week on heavy narcotics which sent him back to the hospital for an intestinal blockage. 16 days and 25+ pounds later, the T11 got cyber knife and then on September 20, he finally had the nephrectomy.

he had a 10cm, clear cell, grade 2 renal cancer. 

That was in June-October, 2013; he has had several cyberknifee treatments to small spots that pop up on the spine and this past summer had a partial adrenalectomy for a 1.8 cm mass on his left adrenal gland.

he is active, involved in life, and doing great; so far, we have not had any TKIs or Nivo and want to put that off as long as possible.

i can relate to the shock and fear you are experiencing as well as the rest of the family; my husband's mother (now 101) went to the hospital and actually gave me strength.

so hang in and hope our story helps you.

Sarah

Dan6652
Posts: 25
Joined: Oct 2016

Sarah,

Thank you for sharing your story. Yes, it has helped alot! My mother who is 86 is also giving me strength. I'm embarassed to say but she has been stronger than me through this entire ordeal. My brother was such an active healthy guy it's hard for me to see him as a cancer patient. It all seems so surreal and hard to wrap my head around. I'm scared for him and us. Although we never know what the future holds, the road ahead seems/and is so much more uncertain now. I feel bad that from this moment on cancer will be all we/he thinks about. Best wishes to you and your husband and thank you for the support.

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

So sorry about your brother.  So hard to hear of all the suffering, let alone be there to see it firsthand.  Two major surgeries would leave even the strongest person in a weakened state, so hopefully his strength will return as his body heals.  Try to encourage him to do his breathing exercises (to avoid pneumonia) and get some good nutrition to restore his health, even if it's just a little here & there.

I will keep your family in my prayers.

Donna~

rjhillcbytwp
Posts: 11
Joined: Oct 2015

Hi Dan6652-  I've been undergoing treatment at Hillman under the care of an incredibly compassionate, kind, and brilliant RCC specialist since 2012.  He is also well read and up-to-date on the many trials and treatments available to folks like us.  You'd do well to check your private messages, as I've left his name and main number for you.   

Dan6652
Posts: 25
Joined: Oct 2016

Thank you.

I sent you a pm but thanks so much for your response.

I really appreciate it!

rjhillcbytwp
Posts: 11
Joined: Oct 2015

Never a problem. Sent another PM your way.  Hang tough!  Lots of Steeler football and Penguins hockey to watch this season.  It will make recovering from surgery that much better to tolerate!  Always here if you or your brother need me.  Let me know if you'd like to talk in-person.  I've been the caregiver to my wife when she went through surgery and treamement for Ovarian cancer, and now I'm the patient.  I've seen both sides of this REALLY closely. 

Dan6652
Posts: 25
Joined: Oct 2016

Footstomper,

Thank you for your support response and your assurance that he can get through this like the others. Best Wishes!

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