CancerCompass message board discussion started by sparkave on 2/1/2008 http://www.cancercompass.com/message-board/message/all,20544,0.htm Sat, 05 Jul 2008 00:00:00 GMT Sat, 05 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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     sparkave Fri, 01 Feb 2008 00:00:00 GMT  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!! pammyjean Sat, 12 Apr 2008 00:00:00 GMT 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? parrotbayRN Sun, 13 Apr 2008 00:00:00 GMT  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! pammyjean Sun, 13 Apr 2008 00:00:00 GMT Hi All,I am taking care of my sweet, beautiful wife (age 46), first diagnosedwith 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 gynecologicaloncologist/surgeon (trained at Harvard Medical School) and/or thehospital "lost" the staging test (the abdominal washings).  Inperson, on the first follow-up, he said it was Stage 1A, but when I gotthe surgical notes/records the cytology report wasn’t extent, eventhough it claimed that fluids were gathered and sent to cytology.When pressed (later), he looked for the test, came back, shrugged hisshoulders, said it was lost, and added:  “What's the big deal; itis Stage 1.  Why worry about it, the chance of it coming back overher lifetime is lower than 30 to 40%."Note, however, that his opinion about recurrences was decidedlygrim:  "If it comes back, she dies".  He didn't even believein 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 sawthe original surgeon and he said that he would open her up to removethe mass, but he would not treat her if it were granulosa cell. He would not even order up a standard test to determine the receptorstatus of the tumor (estrogen positive/negative and/or progesteronepositive/negative), saying that there was no statistical evidence thathormone therapy worked (perhaps true now, but the information might beuseful later!).We went to NYC and a top expert operated on her, finding tumors in manylocations (one was butted against the large intestine, a few were onsome outer uterine fibroids, and a bunch were on her bladder).  Hesuggested BEP, and we scrambled to find another specialist in our cityto take the case (our insurance is not good for out-of-network, and NYChealth care (etc.)  is rather expensive, even though we werestaying 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 ovariancancers), and was doing well, tumor markers falling, toleratingtreatments 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 theyall tested positive for granulosa cell activity, meaning that it hadspread, microscopically, to essentially everywhere in the immediatelocale, if not further.  Fun stuff, no?!He said that the prognosis had "changed" and simply handed me thepathology report.  I replied, "You mean it is sobering?"  Hesaid, "Yes, quite sobering."Six rounds of BEP followed.  A complete nightmare, but the markersfinally started to fall.  I looked into intravenous vitamin C(IVC), and started her on 100 grams, every other day, with varioussupplements (vitamin e, in different forms, and alpha lipoic acid,again in different forms).  Note that she has an implantedport.   The insurance does not cover the IVC, the compoundingpharmacist 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 terribledisease.  Cancer is much misunderstood.  Lance Armstrong (andhis case/publicity) did some positive things, but the bottom line isthat, for most cell types, once you get it, it never goes away. This is especially true for granulosa cell tumors, as everyone hereknows.  The emotional stress is brutal, to put it mildly.A recent paper said that the standard term "indolent" was inappropriatefor granulosa cell tumors.  Relentless was more accurate.I'll be checking back in here, every week or so.  I have read moreoriginal papers on this tumor than virtually anyone has (I am ananalyst, 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 severeperipheral neuropathy, a complete nightmare for us, at present. She also has substantial hearing loss above 3kHz (again, from theCisplatin).Neurontin helps the pain a bit, but she can only take 300mg, thricedaily.  She tried 600mg, thrice daily, but was bumping into wallsand broke her small toe.  The doctor has now put her on somenarcotics, so perhaps this will help.  She takes a host ofsupplements that supposedly will help speed recovery of the nerves inher fingers and feet -- in particular, glutamine and acetyll-carnitine.  Again, my heart goes out to all of you, victims and the familiesalike.  Any cancer is a truly bad scene, but the rare ones arebrutal nightmares, in almost every respect. EarnestOne  EarnestOne Tue, 13 May 2008 00:00:00 GMT  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 sparkave Sun, 18 May 2008 00:00:00 GMT 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  RachelaK Fri, 20 Jun 2008 00:00:00 GMT  On 5/13/2008 EarnestOne wrote:Hi All,I am taking care of my sweet, beautiful wife (age 46), first diagnosedwith 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 gynecologicaloncologist/surgeon (trained at Harvard Medical School) and/or thehospital "lost" the staging test (the abdominal washings).  Inperson, on the first follow-up, he said it was Stage 1A, but when I gotthe surgical notes/records the cytology report wasn’t extent, eventhough it claimed that fluids were gathered and sent to cytology.When pressed (later), he looked for the test, came back, shrugged hisshoulders, said it was lost, and added:  “What's the big deal; itis Stage 1.  Why worry about it, the chance of it coming back overher lifetime is lower than 30 to 40%."Note, however, that his opinion about recurrences was decidedlygrim:  "If it comes back, she dies".  He didn't even believein 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 sawthe original surgeon and he said that he would open her up to removethe mass, but he would not treat her if it were granulosa cell. He would not even order up a standard test to determine the receptorstatus of the tumor (estrogen positive/negative and/or progesteronepositive/negative), saying that there was no statistical evidence thathormone therapy worked (perhaps true now, but the information might beuseful later!).We went to NYC and a top expert operated on her, finding tumors in manylocations (one was butted against the large intestine, a few were onsome outer uterine fibroids, and a bunch were on her bladder).  Hesuggested BEP, and we scrambled to find another specialist in our cityto take the case (our insurance is not good for out-of-network, and NYChealth care (etc.)  is rather expensive, even though we werestaying 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 ovariancancers), and was doing well, tumor markers falling, toleratingtreatments 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 theyall tested positive for granulosa cell activity, meaning that it hadspread, microscopically, to essentially everywhere in the immediatelocale, if not further.  Fun stuff, no?!He said that the prognosis had "changed" and simply handed me thepathology report.  I replied, "You mean it is sobering?"  Hesaid, "Yes, quite sobering."Six rounds of BEP followed.  A complete nightmare, but the markersfinally started to fall.  I looked into intravenous vitamin C(IVC), and started her on 100 grams, every other day, with varioussupplements (vitamin e, in different forms, and alpha lipoic acid,again in different forms).  Note that she has an implantedport.   The insurance does not cover the IVC, the compoundingpharmacist 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 terribledisease.  Cancer is much misunderstood.  Lance Armstrong (andhis case/publicity) did some positive things, but the bottom line isthat, for most cell types, once you get it, it never goes away. This is especially true for granulosa cell tumors, as everyone hereknows.  The emotional stress is brutal, to put it mildly.A recent paper said that the standard term "indolent" was inappropriatefor granulosa cell tumors.  Relentless was more accurate.I'll be checking back in here, every week or so.  I have read moreoriginal papers on this tumor than virtually anyone has (I am ananalyst, 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 severeperipheral neuropathy, a complete nightmare for us, at present. She also has substantial hearing loss above 3kHz (again, from theCisplatin).Neurontin helps the pain a bit, but she can only take 300mg, thricedaily.  She tried 600mg, thrice daily, but was bumping into wallsand broke her small toe.  The doctor has now put her on somenarcotics, so perhaps this will help.  She takes a host ofsupplements that supposedly will help speed recovery of the nerves inher fingers and feet -- in particular, glutamine and acetyll-carnitine.  Again, my heart goes out to all of you, victims and the familiesalike.  Any cancer is a truly bad scene, but the rare ones arebrutal 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.  RachelaK Fri, 20 Jun 2008 00:00:00 GMT Thanks, Rachel K. She already takes Glutamine andAcetyl L Carnatine.  The latter is a most interesting aminoacid.  I am not sure about the dosages.  My wife is not themost compliant person, especially because she takes so many medicinesand supplements, and my attention is geared toward making sure shetakes the things that will keep her alive, if possible. Sheis not a computer person.  But I will reply privately, in a fewdays 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        EarnestOne Mon, 23 Jun 2008 00:00:00 GMT 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. greenasagourd Wed, 25 Jun 2008 00:00:00 GMT  On 6/25/2008 greenasagourd wrote: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.I can say that my wife ONLY had one ovary removed (initially), as it appeared to be limited (stage 1).  As you can see from my first message, they lost a key staging test and so we didn't know if it was 1A, 1B, or 1C.Now, some surgeons are conservative and only remove the minimum material needed.  My wife's OB/GYN wanted to do a complete hysterectomy, given the original imaging evidence and the symptoms.But I got a specialist who, in the middle of the operation, when the pathology came back, asked me whether to do a complete hysterectomy or simply leave things be with removing the ovary (and tumor) and the fallopian tube. I asked what the probability was of a recurrence in the other tissues, especially the other ovary.  He said about 1%, certainly over the next 5 years or so.  Roughly speaking, this is about right, as it rarely appears on the other ovary especially if it is really a Stage 1A, something that he indicated that day, but there was no really no evidence to back it up -- they lost the test or they purposely said they did the test to protect the doctors who didn't diagnose this earlier.The idea here is that if the test came back 1B or 1C then there would be a basis for a lawsuit, because it wasn't caught as early as it should have been, especially given the symptoms for four years.But to the point:  The usual reason for NOT taking out other tissue is to preserve child bearing, and this is indeed the reason noted in her medical  record although it had nothing to do with my decision.I decided to be conservative, in a sense, because before the operation, the specialist said the odds of it being cancer were about one in twenty (something I did not really believe, given my conversations with the ultrasound technician and the OB/GYN and,  of course, given the imaging evidence and the doppler blood flow).  But the specialist, trained at Harvard Medical School, discounted the blood flow and said these things were not precise and he assured us to relax, even encouraged my wife to continue with her plans to go on a planned trip to Alaska with her mother, a three-week trip, that would delay the surgery.But she decided to have the surgery ASAP.  Now, my decision to only take out the left ovary was based on my wife's expectation/hope that everything would be okay, the assertion that the probability of it recurring soon in the other tissues was low, and the MAIN fact that if he only took out the left ovary, she could leave THAT DAY and go HOME.I did not want her to wake up, told she had cancer, all of her organs removed, and then stay at the hospital for many days, in lots of pain.  Besides, she did NOT want to go into immediate menopause, something that would have happened (she was 42 at the time).Finally, understand that the surgeon said that he could always go back in later and do the complete job, if it was wanted.  Certainly he advised doing this at some point, but based on the near-term probabilities, it was not an immediate concern.End of long, detailed, explanation. The ONLY other cancer concern was a uterine polyp, after the initial granulosa cell cancer.  The OB/GYN had found it on imaging, said it was very unlikely to be cancerous, but when she took it out that day, was EXCEEDINGLY concerned that it was cancer as it really did not look good at all, and fell apart easily.  She had done 600 of these things and it was the worst looking one of the bunch, with one of the others of that 600 being cancer and also looking bad. We waited, anxious beyond measure, for a whole week for the pathology report and luckily it turned out to be negative. Hearing that news, that day, at that particular time was the happiest moment of our lives the past four years.  The recurrences, the chemo, the side effects the extremely poor prognosis now, the the the the the the.... has been one nightmare after another.Similar, surely, to most everyone else who has posted on this board.Best Wishes, Always, to Everyone,Earnest One                EarnestOne Sun, 29 Jun 2008 00:00:00 GMT