George From China - Dx 2007

[Amanda]

YA it worked thank you
Wow that is a rare place for it to start!

[Amanda]

Lynette an George...
I want you to know you are both in my mind and i am thinking about you both a lot during the days an George you are a fighter!
I know at times you feel like you have walked 1000 miles an you hurt an a mix of other things!
All warriors feel this an as another one i send you my love and prayers!

You have climbed this mountain before an had the looks an i don't know eyes an a mix of other things that we all have!
You are strong you are an individual an you have hope in this fight! You have been thru a lot as many have an you will get to the top of this and i believe be ok an ready for the next war!

My brother asps be strong and try and get in the sun and relax even if it for a few minutes! You have cancer it does NOT have you <3

{{{ Hugs Lynette }}}} You my dear are amazing!

[D.ap]

Hi Lynette and George

Were you able to get your brain procedure completed on Friday?
Hope you are finding answers to the Kidney images.
Write when you can.
Thinking of you both

Love
Debbie

[Jorge]

Debbie, thanks so much for providing the related article.
That's about a kidney primary case. The examination done on the case didn't include MRI with contrast. After talking with some nephrologists, I feel MRI with contrast is not the best way for diagnosing kidney malignancy (or maybe the doctors here they aren't used to review kidney MRI).
However after reviewing the abdomen MRI, the renal surgeon is inclined to think at least the largest lesion is ASPS met. They all request a PET to help diagnose so George is having a PET this Friday.
If all the 8 lesions are mets, the opportunity of surgery is very tiny here. If the disease is metastatics to several organs and the mets are multiple, they all think surgery is meaningless and indicate it's possible to remove a whole kidney. It's too difficult to find a surgeon to do the surgery. Of course, we will go discuss with them after getting the PET results next week!

Olga,
Do you know if there is some technique in Germany or somewhere else that can use laser to ablate the abdomen organs like kidney? From Ivan's experience of ablating the lung mets when having the thoracotomy by Dr. Rolle and our experience of Cryoablation, looks like the laser ablation is better cryoablation in killing the tumor. If we can't find a doctor here to have the surgery and the damage of the surgery is too big, we have to look for some other treatments outside the country.

Anyone has any ideas or suggest, you're highly welcome to give it here. Thank you in advance.

Lynette

[Jorge]

Lynette an George...
I want you to know you are both in my mind and i am thinking about you both a lot during the days an George you are a fighter!
I know at times you feel like you have walked 1000 miles an you hurt an a mix of other things!
All warriors feel this an as another one i send you my love and prayers!

You have climbed this mountain before an had the looks an i don't know eyes an a mix of other things that we all have!
You are strong you are an individual an you have hope in this fight! You have been thru a lot as many have an you will get to the top of this and i believe be ok an ready for the next war!

My brother asps be strong and try and get in the sun and relax even if it for a few minutes! You have cancer it does NOT have you <3

{{{ Hugs Lynette }}}} You my dear are amazing!

Thanks Amanda for your kind words. We can't be so strong without the inspiration from you and the other friends in this community. Your special brave and optimistic attitude also encourages George and me . Thank you so much!

Wish you good luck with the consultion with Dr. Litterup.
Lynette

[D.ap]

Lynette - the information you bring to this forum is amazingly detailed - please do not worry about how do you look like, the content is the key, not the looks.
The cost of Gamma knife treatment is VERY low in China. I am wondering if this is the same for the outsiders? On the other hand the cost of LITT in Boston is way to high to be able to afford for just about everyone unless you are really well off. Have you asked the nephrologist what benign condition could be looking like these findings?

Everyone can have the Gama Knife here if you're proved to need this treatment. But patients who don't have medical assurance in China have to pay all the cost--~$3000. The model of the machine is also very new--Leksell-C or Lecksell-perfexion (the newest model). The Gama Knife center George used to go treats over 2000 cases a year (huge population as you know), so I think the experience is not bad.

I also consult a nephrologist on Monday, but he can't tell if it's benign or ASPS mets from the MRI. Since George has the medical history of ASPS, every doctor is very cautious to make the judgement. But the radiologist and Cryoablation doctor did say a possibility of renal hamartoma.We will take the images to some better hospital to Guangzhou to ask for more opinions. But does it look like benign to you guys--experienced ASPS experts?

Hi Lynette
If there is surgery and the growths are found to be renal hamartoma, how will the surgery be performed?

Love
Debbie

[Bonni Hess]

Dear Lynette,
I am so sorry that the renal surgeon suspects that at least one of the kidney lesions may be ASPS, but I continue to hold very tight to Hope that further evaluation with the PET scan next week will prove his suspicions wrong. However, if any/all of the eight lesions do prove to be ASPS and surgical removal of the mets is not an option, Cyberknife may be a possible treatment option as this is something which we explored when Brittany was diagnosed with her unresectable ASPS met in the head of her pancreas. In our research we found one case where Cyberknife had been successful in treating/destroying an ASPS pancreatic met, but frustratingly we were denied insurance coverage for the procedure. Consequently, since resection and radiosurgery were not treatment options for Brittany's Life threatening pancreatic met, we aggressively searched and found a systemic treatment with the Cediranib Clinical Trial which VERY thankfully seems to have now completely destroyed the pancreatic met as well as the other innumerous widely disseminated mets throughout Brittany's body.
My most positive thoughts and very best wishes will be with dear George and you during his upcoming PET scan on Friday, and I will be anxiously awaiting your update when your time and the situation allow.
Reaching out to embrace you with special hugs, deepest caring, healing wishes for George, warm friendship, and continued Hope,
Bonni

[Jorge]

Hi guys,

It's been a while. Sorry for not updating for a long time.
Here is the udpate since June:
George has the PET and it shows the SUV uptake is high in the kidney where there is a big lesion and a lymph node met on retroperitoneal. Although SUV uptake is high, but can't see the outline of the renal met in that area so he had CT with contrast later on the same day to give a clear picture of the mets. Although some urinary surgeon has different opinion on some smaller mets, we are very sure all of them are ASPS. A renal surgeon was scheduled on the right kidney which has the biggest met next to the hilus renalis. The surgery is very successful--3 mets on the right kidney and the lymth node on on retroperitoneal were resected, but I'm very uncomfortable as they did a wedge-shaped resection and ~1/3 of the kideny was resected As I know, the tissue on the kidney won't grow back like the lung or liver. The options are very limit if there are mets growing on the kidney again...

There are still 3 or 4 mets on the left, we're looking for another surgery in about a month when the wound is healed well. Cryoablation is not an option for renal mets, as they can't be distinguished from the normal tissue by CT without contrat. While CT with contrast during the Cryoablation will induce more risk. So we need to convince the urinary surgeon again!

It's time to have the brain MRI again, 2 months from last scan. Hope the resection of the big renal met can stop new brain mets!

Love to you all,
Lynette

[Olga]

Hi Lynette, thank you for an update, you are very detail oriented as always. I am not sure why you are saying that "Cryoablation is not an option for renal mets"? Here in North Am it is now very widely done for the earlier stages of the renal cancer so the renal function is preserved while the tumors are ablated, it is getting more like a standard treatment option versus a surgery. They can be treated with CT or with MRI guidance. Probably there are imaging problems of the ASPS mets versus RCC tumors, but I would investigate this option further given the situation that now 1/3 of the kidney is gone.

[Bonni Hess]

Dear Lynette,
It was so good to hear from you and I am so deeply grateful for your finding/taking the time to post an update in the midst of all that you and George have been going through. I am so sorry for the continued challenges which dear George has been facing in his courageous battle, but am grateful that you and the doctors are so pro-active and vigilant in your monitoring of his disease and the treatment for his mets. I am very grateful too that the right kidney and retroperitoneal mets were able to be successfuly resected, but share your concern about the loss of part of his kidney and the probable need for him to have another surgery to remove mets on his left kidney. I Hope that Olga's suggestion to further explore Cryoablation of the left kidney mets instead of resection can be pursued and a way to successfully do the procedure be found. In the meantime, my very best wishes and most positive thoughts are with George and you for very good scan results from his upcoming brain MRI showing no new mets and the stabilization of the metastatic spread in his brain now that his body's tumor burden has been reduced with the successful resection of the kidney and retroperitoneal mets. Take care dear Lynette and give yourself and dear Geroge special hugs from me.
With deepest caring, positive thoughts, healing wishes for George, warm friendship, love, and continued Hope,
Bonni

[D.ap]

Hi Lynette and George

I hope George is feeling better with each day that passes
Did George have his kidney part removed laparoscopically or through an incision ?
On his last kidney function testing how were his kidneys doing?

Was the doctor concerned about a kidney problem because of George's prior kidney function test or because of his recent surgery ?
I found a blog written by a nurse about contrast dyes.
Kidneys are always to be considered when using dyes
I wanted to add the need to weight the benefit /risk factor with using the cyro AND the CT with contrast
Was the CT without contrast on the kidney more well defined then the lymph area was at last scan?
Maybe there might be a chance of not needing the contrast. ?
Maybe Olga would know
I found a renal paper on the way kidney functions are tested I the importance of the test .
Apparently there is not any one test that gives the whole picture of how the kidney truely is functioning.
Read when able
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1592388/

In the mean time you both take care of yourselves.

Love
Debbie

The blog

http://kidneysteps.com/2012/05/contrast ... ey-damage/

[Jorge]

Olga,
Is the cryoablation on renal done in CT/MRI with contrast in north Am? In our experience, the renal mets are not visible on the CT without contrast. Even with contrast, some small mets are mis-diagnosed to be cyst by inexperienced radiologist. I will show you some pictures of the CT scans later when I have the CDs on hand.
Another reason is the cryoablation is different here--we think. George had 3 cryoablation on the lung mets--on 2~3cm mets. None of them disappeared, only one of 2.*cm shrunk by less than 5mm; the others were just stable. The pathology report of the first laser surgery 6 month after a cryoablation said a mean of 20% necrosis on all the resected mets.
But, the cryoablation on renal mets may be more efficiency. I will look deeper for more experience.

Debbie,
George had a renal ECT to test the kidney function--they were functioning well. The surgery is an open surgery through an incision on the belly as there was a retroperitoneal lymph node met on the PET report--they planed to do a retroperitoneal lymph node dissection but didn't find more except the one of 2.*cm reported.
The lesson from George is the abdomen CT should always done with contrast. CT without contrast can't detect mets not big enough!

Thank you everyone for your input and good wishes. I'm also very concern of loss of the kidney tissue. So we will definitely weight the possible treatments to find the one with minimum loss.

Love,
Lynette

[D.ap]

Hi Lynette and George

How are you both doing ?
You weren't near the earth quake were you?
I tried to find the post of where you live and thought I'd just ask again.
I've found a renal Cryoblation link for you to read when you get the time.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2470923/
How big do the areas on the remaining kidney look to be ?

Write when you can
Love
Debbie

[Olga]

Lynette - may be they use a different type of the cryoablation unit where George was treated in China? Dr.Littrup works with the company maker of the most advanced units as a lead investigator so he has an access to the latest available ones. 20% of the necrosis is a very low rate and it might be also not even treatment related - the spontaneous necrosis is often found in the resected ASPS tumors with no reason - even when there was no treatment before of the resection, it is their nature. So either the radiologist missed the targets (it may be caused by absence of the Fluoro CT device for the Intraprocedural imaging, we had this very unfortunate episode with the local interventional radilogist also missing Ivan's lung met couples of years ago, it had to be redone by Dr.Littrup after it grew after it recovered from the incomplete ablation), or if the radiologist hit the target correctly, it might be the freezing was not low enough to kill off the mets. There was a hospital in China where Dr.Littrup done an education about 5 years ago, probably they would know where the most advanced technology/experienced drs are located in China, I realize that it is very expensive to be treated in Detroit - about $10,000 - 12,000 per a session (they can do a few in one session if possible).
This is the link to the unit producer that Dr.Littrup uses http://www.galilmedical.com/treatments/kidney-cancer/
at the bottom of the page there are supportive articles with the abstracts avail. on the Pubmed, the results are very good. You can contact them to find out what hospital in China uses its unit for at least few years.
We are currently waiting to hear from the radiologists the results of Ivan's recent MRI adrenal scan with the contrast at one year post adrenal ablation. The CT is an insufficient scan even with the contrast for the abdominal locations and MRI scan needs to be done to verify the suspicious findings, but Ivan's adrenal mets were found by the CT with the contrast and his ablation procedure was done under the Fluoro CT guidance - but these mets were not renal but adrenal and it seems that adrenal mets are more metabolically active and grow faster.

[Jorge]

Hi guys,

As promised, here are the scan abstracts of the renal mets with and without contrast. From these pictures, you can see abdomen CT with contrast is necessary for ASPS renal mets diagnose.
The renal mets are fund via MRI with contrast firstly. But the doctors here used to CT, I think. So we were requested to have the PET/CT to confirm the metastatics. I personally think MRI with contrast is more clear to see the kidney.