Hi Gracee, which specialist you need refer to ? oncologist ?
Why not try UMSC ( university Malaysia specialist clinic ), entrance next to UM main gate. I have a benign tumor in my spine c3-c5. 1st check up and done MRI in Sunway, follow by 2nd optional thru a GP, and finally I go UMSC. I do not want elaborate details here but I can assured that UMSC is good and I'm 99% fit now.

Hi, sorry to hear that. May I ask where is the exact location of this tumor? On top your kidney? I can help you do a little research when time permits.

So you mean that you were referred to the government specialists? Actually government has more subspecializations than private hospitals. Complicated cases usually be referred to government hospitals.

I don't have time to write more now, but a quick check of MPNST shows
that is basically a neurofibrosarcoma, and is linked to NF1 and NF2.

MPNST are basically malignant Schwannomas, the benign tumors in NF2.

However, about half of MPNST cases occur in people with NF1.
In NF1, it is the neurofibomin protein or gene of chromosine 17 which has
malfunctioned, while in NF2, the neurofibromin 2 gene, also called Merlin,
has gone haywire in chromosome 22.

MPNST shares many of the same genetic and biochemical signalling pathways
that causes the growth of the benign tumors in NF1 and NF2, and indeed,
many other cancers -

Merlin
EGFR
AKT
PI3K
STAT3
JAK2
PAK1
Merlin, or its dysfunction rather, is the root cause, with the rest of the
others coming in down the cascade, in NF2.

Merlin also appears to be evident in MPNST.

http://www.ncbi.nlm.nih.gov/m/pubmed/?term=MPNST+MERLIN
EGFR-STAT3 signaling promotes formation of malignant
peripheral nerve sheath tumors.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3923530
There were three girls that I knew had NF2 in the country -

Lim Pei Lee
Yvonne Foong
Keisha Petrus
Pei Lee passed away about two years ago. Her dad preferred to try out
Chinese traditional medicine, so I did not have much say in her treatment.
I did extensive research on their condition at that time, and on the
suppements and drugs which target the signalling pathways of their tumors.

You can take a quick look at this thread.

http://www.longecity.org/forum/topic/45780...ndpost&p=547305
Thus, offhand, these are the supplement and drugs which are likely
to fight your cancer :
Curcumin
Pterostilbene
Resveratrol
Quercetin
Fish oil
Bio 30 / Bio 100 oils
Sodium valproate (Epilim, Depaken), the old epilepsy drug
Celecoxib (Celebrex), the common NSAID
Chemotherapy - mainly the EGFR and tyrosine kinase inhibitors :

Erlotinib
Imatinib
Nilotinib
Yvonne Foong has apparently been controlling her condition with Bio 30,
then Bio 100, the bee propolis oil developed in Japan, which contains CAPE,
or caffeic acid phenethyl esters.

CAPE suppresses the PAK1 pathway.
CAPE (caffeic acid phenethyl ester)-based propolis extract (Bio 30) suppresses
the growth of human neurofibromatosis (NF) tumor xenografts in mice.

'' ..... Bio 30, a CAPE-rich water-miscible extract of New Zealand (NZ) propolis
suppressed completely the growth of a human NF1 cancer called MPNST
(malignant peripheral nerve sheath tumor) and caused an almost complete
regression of human NF2 tumor (Schwannoma), both grafted in nude mice. ''

http://www.ncbi.nlm.nih.gov/m/pubmed/18726924/

For my wife's case, she was told to avoid caffeine and any sort supplement that contains growth hormones. Her neck tumor was diagnosed 2 months ago and coincidentally that was when she started taking sheep placenta.

Some tumors feed on growth hormones which is why certain patients were prescribed anti hormonal drugs to curb release of hormones from body thus resulting to shrinking of tumor.

Alkaline diet is good for those with cancer. Take as much rest as possible, do some read up on your condition so you which doctor makes sense.

Might you be able to seek treatment abroad ? 

I'm not sure if they have the skill or experience here to even remove your
tumor surgically. That first oncologist you saw who said surgery is too risky,
may be correct.

Depending on which part of the kidneys or adrenals it is in, surgery in
some locations can be quite hazardous.
You appear to have an extremely rare form of cancer.

Moreover, it is one that is known to be quite aggressive, and
does not respond very well to chemotherapy or radiation.
A quick check of Medline reveals that, as of the current date, there are only :

(a) SEVEN recorded cases of MPNST of the adrenals.

(b) FOUR or FIVE recorded cases of MPNST of the kidneys.
Malignant peripheral nerve sheath tumor of adrenal gland with heterologus
osseous differentiation in a case of Von Recklinghausen's disease.
'' Only seven cases of MPNST of the adrenal gland
have been reported in the literature till date. ''

http://www.ijpmonline.org/article.asp?issn=0377-4929

http://www.ncbi.nlm.nih.gov/m/pubmed/24739852
Juxta-adrenal malignant schwannoma with lymph node metastases.
'' An extensive review revealed only 2 cases of malignant
juxta-adrenal schwannoma.

The malignant form is frequently associated with von Recklinghausen syndrome
(4% of cases) or other types of neurofibromatosis. ''

'' We report the first case of an incidentally discovered malignant schwannoma
arising from the juxta-adrenal gland with lymph node metastases. ''

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3886207/
Malignant peripheral nerve sheath tumour of the renal parenchyma
presenting as a fast growing atypical renal cyst.
'' Malignant peripheral nerve sheath tumours (MPNST) of the kidney are
very rare, with only 3 cases reported in the English and French literature. ''
http://www.ncbi.nlm.nih.gov/m/pubmed/24069105/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3776038/
Malignant peripheral nerve sheath tumor of the renal pelvis.

'' There are only 4 cases reported of MPNST of the kidney. ''

http://www.ncbi.nlm.nih.gov/m/pubmed/19829045
Malignant peripheral nerve sheath tumor of kidney.

" Only five cases of malignant peripheral nerve sheath tumor of kidney
are reported to date. ''
http://www.ijkd.org/index.php/ijkd/article/view/608/337
Isolated malignant peripheral nerve sheath tumor of kidney capsule.

'' The occurrence of an isolated malignant peripheral nerve sheath tumor (MPNST)
of the kidney capsule is extremely rare and its presence may only be expressed
by an insidious onset of non-specific and misleading symptoms with a
predominance of lower back pain. ''

'' Tumor excision in toto is considered the treatment of choice,
but it can be hazardous, especially if the tumor is adhering to the
surrounding structures. ''
http://www.ncbi.nlm.nih.gov/m/pubmed/19259060/
Finally, from the above literature, your kind of rare cancer very frequently occurs
in people with NF1, or von Recklinghausen's disease. Do you have this as well ?