granulosa cell tumor recurrent

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granulosa cell tumor recurrent

by sparkave on Fri Feb 01, 2008 12:00 AM

Quote | Reply

Hi to everyone.  I am in my mid fifties.  I am excited to find this site.  Don't we all feel alone in this plight.  I wonder between us how many different things we have been told by our physicians.  I have traveled many, many miles for answers.

 I was diagnosed with GCT in 2002.  I had a large tumor removed which was encapsulated in my ovary.  I was advised I needed no follow-up treatment.  Three years later I had 20+ tumors.  I had surgery to remove the tumors and the omentum.  One year later I had surgery to removed a smaller number of tumors.  And now one year later I have at least one tumor.

My treatments began after the second surgery and have included:  Lupron, Carboplatin/Taxol, and Femara.

 I have also developed cardiac problems and believe the cardiac complications are related to the cancer treatments.

 I am an advocate for knowledge in our plight against GCT.  I have a deep knowledge of GCT.  I have researched this cancer relentlessly over the past two years.

I don't know how to accomplish it, but we need to share every idea we come up with.  And, anyone who is diagnosed MUST get a second opinion.  I am living a pretty normal life with GCT.  I've been to some of the best doctors in the US, and some that were not so good.

When researching GCT, it is just as difficult to get a straight answer.  How many times have you been told it grows slow, and the next person tells you it grows fast?  How many times have you been told your going to die from this and the next time you are told most people don't die from this?  Have you ever just wanted to have a regular cancer; the kind people care about?  Did you ever dream of turning on the TV or opening a magazine and there is a group of people doing an awareness campaign and a fund raiser for GRANULOSA CELL TUMOR? Has anyone told you to go on a diet and you'll be cured?  I could go on and on.

Please respond.  I have never met anyone with GCT.  I have never corresponded with anyone with GCT.  

We are all connected, yet we are as lonely as the Maytag Repairman!

 Sparks

 

 I

 

  

RE: granulosa cell tumor recurrent

by pammyjean on Sat Apr 12, 2008 12:00 AM

Quote | Reply

 

On 2/1/2008 sparkave wrote:

Hi to everyone.  I am in my mid fifties.  I am excited to find this site.  Don't we all feel alone in this plight.  I wonder between us how many different things we have been told by our physicians.  I have traveled many, many miles for answers.

 I was diagnosed with GCT in 2002.  I had a large tumor removed which was encapsulated in my ovary.  I was advised I needed no follow-up treatment.  Three years later I had 20+ tumors.  I had surgery to remove the tumors and the omentum.  One year later I had surgery to removed a smaller number of tumors.  And now one year later I have at least one tumor.

My treatments began after the second surgery and have included:  Lupron, Carboplatin/Taxol, and Femara.

 I have also developed cardiac problems and believe the cardiac complications are related to the cancer treatments.

 I am an advocate for knowledge in our plight against GCT.  I have a deep knowledge of GCT.  I have researched this cancer relentlessly over the past two years.

I don't know how to accomplish it, but we need to share every idea we come up with.  And, anyone who is diagnosed MUST get a second opinion.  I am living a pretty normal life with GCT.  I've been to some of the best doctors in the US, and some that were not so good.

When researching GCT, it is just as difficult to get a straight answer.  How many times have you been told it grows slow, and the next person tells you it grows fast?  How many times have you been told your going to die from this and the next time you are told most people don't die from this?  Have you ever just wanted to have a regular cancer; the kind people care about?  Did you ever dream of turning on the TV or opening a magazine and there is a group of people doing an awareness campaign and a fund raiser for GRANULOSA CELL TUMOR? Has anyone told you to go on a diet and you'll be cured?  I could go on and on.

Please respond.  I have never met anyone with GCT.  I have never corresponded with anyone with GCT.  

We are all connected, yet we are as lonely as the Maytag Repairman!

 Sparks

 

 I

 

  


 

OMG! Finally I have found someone else with GCT ! My story is very similar. Back around 1983 they discovered the tumor on my ovary the size of a grapefruit. The tumor and the ovary were removed and I, too, was told no follow-up was needed because it was totally encapsulated. Well, in 2003 I went for a routine check-up at a new internist and I mentioned that I got a little winded when exercising and she ordered up a chest x-ray. One thing led to another and after a lot of putting the puzzle pieces together, it was discovered that the "encapsulated" tumor had metastisized to my left lung! A lung biopsy was done and as soon as I healed from that, they did a total hysterectomy. I underwent chemo for the many small tumors in my lung. Cat-scans every 6 mos. show them to be stable since then. Yes, I also have been told it is slow-growing, but I wonder where and when it will show up next! Keep in touch...I hope you are doing well!!

RE: granulosa cell tumor recurrent

by parrotbayRN on Sun Apr 13, 2008 12:00 AM

Quote | Reply
How freaking depressing is this???? I am sitting here hearing practically verbatum what my ob-0gyn oncologist said to me . . . it was totally encapsulated in your ovary, the other ovary was clean, it appeared no where else etc etc etc ... it is slow growing, you need f/u with Inhibin B etc . . you'll die of something else before this comes back . . I live in the USA where do the two of you live?

RE: granulosa cell tumor recurrent

by pammyjean on Sun Apr 13, 2008 12:00 AM

Quote | Reply

 

On 4/13/2008 parrotbayRN wrote:

How freaking depressing is this???? I am sitting here hearing practically verbatum what my ob-0gyn oncologist said to me . . . it was totally encapsulated in your ovary, the other ovary was clean, it appeared no where else etc etc etc ... it is slow growing, you need f/u with Inhibin B etc . . you'll die of something else before this comes back . . I live in the USA where do the two of you live?

I live in Phoenix, AZ. Please, let's keep in touch.......it feels so comforting to have finally found someone to share this with!

RE: granulosa cell tumor recurrent

by EarnestOne on Tue May 13, 2008 12:00 AM

Quote | Reply

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 

RE: granulosa cell tumor recurrent

by sparkave on Sun May 18, 2008 12:00 AM

Quote | Reply

 

On 4/12/2008 pammyjean wrote:

 

On 2/1/2008 sparkave wrote:

Hi to everyone.  I am in my mid fifties.  I am excited to find this site.  Don't we all feel alone in this plight.  I wonder between us how many different things we have been told by our physicians.  I have traveled many, many miles for answers.

 I was diagnosed with GCT in 2002.  I had a large tumor removed which was encapsulated in my ovary.  I was advised I needed no follow-up treatment.  Three years later I had 20+ tumors.  I had surgery to remove the tumors and the omentum.  One year later I had surgery to removed a smaller number of tumors.  And now one year later I have at least one tumor.

My treatments began after the second surgery and have included:  Lupron, Carboplatin/Taxol, and Femara.

 I have also developed cardiac problems and believe the cardiac complications are related to the cancer treatments.

 I am an advocate for knowledge in our plight against GCT.  I have a deep knowledge of GCT.  I have researched this cancer relentlessly over the past two years.

I don't know how to accomplish it, but we need to share every idea we come up with.  And, anyone who is diagnosed MUST get a second opinion.  I am living a pretty normal life with GCT.  I've been to some of the best doctors in the US, and some that were not so good.

When researching GCT, it is just as difficult to get a straight answer.  How many times have you been told it grows slow, and the next person tells you it grows fast?  How many times have you been told your going to die from this and the next time you are told most people don't die from this?  Have you ever just wanted to have a regular cancer; the kind people care about?  Did you ever dream of turning on the TV or opening a magazine and there is a group of people doing an awareness campaign and a fund raiser for GRANULOSA CELL TUMOR? Has anyone told you to go on a diet and you'll be cured?  I could go on and on.

Please respond.  I have never met anyone with GCT.  I have never corresponded with anyone with GCT.  

We are all connected, yet we are as lonely as the Maytag Repairman!

 Sparks

 

 I

 

  


 

OMG! Finally I have found someone else with GCT ! My story is very similar. Back around 1983 they discovered the tumor on my ovary the size of a grapefruit. The tumor and the ovary were removed and I, too, was told no follow-up was needed because it was totally encapsulated. Well, in 2003 I went for a routine check-up at a new internist and I mentioned that I got a little winded when exercising and she ordered up a chest x-ray. One thing led to another and after a lot of putting the puzzle pieces together, it was discovered that the "encapsulated" tumor had metastisized to my left lung! A lung biopsy was done and as soon as I healed from that, they did a total hysterectomy. I underwent chemo for the many small tumors in my lung. Cat-scans every 6 mos. show them to be stable since then. Yes, I also have been told it is slow-growing, but I wonder where and when it will show up next! Keep in touch...I hope you are doing well!!

 

Hi, I guess I don't check this site very often.  I am so excited to have received replies.  I live in SW Iowa.  Since I have had cardiac problems, I am not currently a candidate for surgery, therefore, I am on a personal strike against any CT scans for a while.  Ha.  My Inhibin B is down to 90 from a high of 227 since beginning the femara.  I don't know if this will be deleted or not, but my email is --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--.  Have a great day.  spark ave

RE: granulosa cell tumor recurrent

by RachelaK on Fri Jun 20, 2008 12:00 AM

Quote | Reply

Hi,

Similar story here but my initial surgeon cut open my ovary and seeded my abdomen with cancer cells. No treatment until 2 years later when they found tons of tumors. Being followed at Mass. General Hospital by a doctor who seems to be an expert. Not much to go on... Just tried Lupron (a hormonal therapy) which is supposed to slow down the growth. The drug made me cry all the time, so I'm stopping it. Does anyone know of clinical trials etc... I already had taxol /carboplatin chemo, which damaged my kidneys and nervous system.

Hang in there,

Rachel 

RE: granulosa cell tumor recurrent

by RachelaK on Fri Jun 20, 2008 12:00 AM

Quote | Reply

 

On 5/13/2008 EarnestOne wrote:

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 


 

I see doctors at MGH and they recommend 40 grams of L-glutamine a day to help the neuropathy. It helped me a lot. Surgery is the treatment of choice. I am stage IV too, but am doing sort of okay. Watch out for the Lupron - side effects can include moodiness and crying etc... but it has been show to slow the growth and give up to 2 more years of life. There is an expert in Texas who wants to do research on this, but has no $$$. It is so rare a cancer... You can reply to me privately if you'd like to be in contact or your wife would like to chat. I'd love to know someone else struggling with this nasty cancer!

Rachel K. 

RE: granulosa cell tumor recurrent

by EarnestOne on Mon Jun 23, 2008 12:00 AM

Quote | Reply

Thanks, Rachel K.

 

She already takes Glutamine and
Acetyl L Carnatine.  The latter is a most interesting amino
acid.  I am not sure about the dosages.  My wife is not the
most compliant person, especially because she takes so many medicines
and supplements, and my attention is geared toward making sure she
takes the things that will keep her alive, if possible.

 She
is not a computer person.  But I will reply privately, in a few
days and give your our phone number (and/or you can give yours). 
She is certainly up for a chat, once in a while.

 Best Wishes to everyone.

Earnest One 

 

 

 

 

 

 

RE: granulosa cell tumor recurrent

by greenasagourd on Wed Jun 25, 2008 12:00 AM

Quote | Reply

Hi all.  Another GCT survivor here.  You can read a little more about my experience under the thread "Granulosa".

I feel for all of you having recurrence of this cancer.  Knowing its rarity, it must be difficult to know the best treatments.  I'm praying that you can find the right answers for your situation.

I do have a couple of questions.  My entire reproductive system was surgically removed after GCT was found on one ovary.  I was told that by taking the entire repro system the most likely place for it to recur was gone.  So far, so good for me.  How about you?  Did you have your entire repro system removed upon diagnosis or just the cancerous ovary?

Also, have any of you had other cancers?  I'm now having some breast cancer issues.

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