Hi All,
I am taking care of my sweet, beautiful wife (age 46), first diagnosed
with a granulosa tumor in 2004, after more than four years of symptoms
(bleeding), not taken seriously by a host of doctors.
The tumor was confined to the left ovary, but the fancy gynecological
oncologist/surgeon (trained at Harvard Medical School) and/or the
hospital "lost" the staging test (the abdominal washings). In
person, on the first follow-up, he said it was Stage 1A, but when I got
the surgical notes/records the cytology report wasn’t extent, even
though it claimed that fluids were gathered and sent to cytology.
When pressed (later), he looked for the test, came back, shrugged his
shoulders, said it was lost, and added: “What's the big deal; it
is Stage 1. Why worry about it, the chance of it coming back over
her lifetime is lower than 30 to 40%."
Note, however, that his opinion about recurrences was decidedly
grim: "If it comes back, she dies". He didn't even believe
in scans or Inhibin blood markers because, from his point of view,
there was nothing to do anyway.
This seemed unreasonable, so we had her OB/GYN do the follow-ups -- ultrasound tests every six months.
Sadly, a growth showed up in Feb. 2007. Long story short, we saw
the original surgeon and he said that he would open her up to remove
the mass, but he would not treat her if it were granulosa cell.
He would not even order up a standard test to determine the receptor
status of the tumor (estrogen positive/negative and/or progesterone
positive/negative), saying that there was no statistical evidence that
hormone therapy worked (perhaps true now, but the information might be
useful later!).
We went to NYC and a top expert operated on her, finding tumors in many
locations (one was butted against the large intestine, a few were on
some outer uterine fibroids, and a bunch were on her bladder). He
suggested BEP, and we scrambled to find another specialist in our city
to take the case (our insurance is not good for out-of-network, and NYC
health care (etc.) is rather expensive, even though we were
staying with friends).
Now our insurance does not cover ANY out-of-network visits or treatments.
The new guy said BEP was too toxic (a nontrivial possibility of near-term fatal leukemia above four rounds of treatment).
She started on Carboplatin and Paclitaxol (standard therapy for ovarian
cancers), and was doing well, tumor markers falling, tolerating
treatments very well. But just prior to a second look surgery,
the markers rose, and, upon surgery another tumor was found.
Worse, the surgeon took random samples off her abdominal wall and they
all tested positive for granulosa cell activity, meaning that it had
spread, microscopically, to essentially everywhere in the immediate
locale, if not further. Fun stuff, no?!
He said that the prognosis had "changed" and simply handed me the
pathology report. I replied, "You mean it is sobering?" He
said, "Yes, quite sobering."
Six rounds of BEP followed. A complete nightmare, but the markers
finally started to fall. I looked into intravenous vitamin C
(IVC), and started her on 100 grams, every other day, with various
supplements (vitamin e, in different forms, and alpha lipoic acid,
again in different forms). Note that she has an implanted
port. The insurance does not cover the IVC, the compounding
pharmacist screws us on his labor, but we are still trying it.
Sadly, however, the Inhibin A has now risen three times in a row.
Her CA 125 is stable at 6-8, and we now await the Inhibin B marker,
generally considered more reliable.
My heart goes out to everyone suffering from this terrible
disease. Cancer is much misunderstood. Lance Armstrong (and
his case/publicity) did some positive things, but the bottom line is
that, for most cell types, once you get it, it never goes away.
This is especially true for granulosa cell tumors, as everyone here
knows. The emotional stress is brutal, to put it mildly.
A recent paper said that the standard term "indolent" was inappropriate
for granulosa cell tumors. Relentless was more accurate.
I'll be checking back in here, every week or so. I have read more
original papers on this tumor than virtually anyone has (I am an
analyst, by training). If anyone has any questions or comments,
please contact me.
Note that if the Inhibin B comes back elevated, the gynecological oncologist will treat her with Lupron.
Note that all the chemo (especially the Cisplatin) produced severe
peripheral neuropathy, a complete nightmare for us, at present.
She also has substantial hearing loss above 3kHz (again, from the
Cisplatin).
Neurontin helps the pain a bit, but she can only take 300mg, thrice
daily. She tried 600mg, thrice daily, but was bumping into walls
and broke her small toe. The doctor has now put her on some
narcotics, so perhaps this will help. She takes a host of
supplements that supposedly will help speed recovery of the nerves in
her fingers and feet -- in particular, glutamine and acetyl
l-carnitine.
Again, my heart goes out to all of you, victims and the families
alike. Any cancer is a truly bad scene, but the rare ones are
brutal nightmares, in almost every respect.
EarnestOne