CancerCompass message board discussion started by Gct2-brenda on 5/8/2008 http://www.cancercompass.com/message-board/message/all,23846,0.htm Thu, 24 Jul 2008 00:00:00 GMT Thu, 24 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Since posting my message on Granulosa - Chemo? I have had a couple of requests for symptoms I experienced in recurrence of Granulosa. So I thought it would be a great idea to post them here for all to view. I am heading for the OR on May 15th for my 3rd surgery in 6 years. I have been able to catch the tumours early because I have been aware of my own symptoms. I hope my experience will help someone else. Here is what I have experienced each time:First occurrence (complete hysterectomy in July 2002) (Stage 1C): Extreme pain in the lower left abdominal area that doubled me over and resulted in my going to the emergency room for meds for pain and nausea. For the next 4-5 days, the muscles across the front of my abdominal area felt like they had been exposed to too many situps! I had constant aches in both shoulders which the ER doctors felt were related to a gastrointestinal problem. They were very wrong. I experienced excessive gas & bloating, was tired and had frequent naps, a discomfort in the abdominal area with some tenderness, slight nausea on occasion, and even when I was extremely hungry I felt full after only a few mouthfuls of food. I did not experience any weight loss. Also experienced urinary incontinence and a persistant cough that hung with me for over two months.First recurrence: Surgery January 28, 2007: Pain in abdomen returned but not as severe as first time. No pain in shoulders, but all other symptoms were the same. No weight loss.Second recurrence: Surgery scheduled for May 15, 2008: Pain in left abdomen was the first sign that something was not right. I had very few other symptoms appear until a month later when I started a new job and then the nausea, headaches, and achiness made their appearance. I quit my job (which I wasn't enjoying anyway) and after a month, only the occasional headache and the need for naps remained until this past week. (Based on this, I expect that the symptoms of this disease are enhanced by stress.) Over the past couple of days I find that I am experiencing more gassiness, tenderness and discomfort in the abdominal area. No weight loss. CT Scan has been used to confirm the diagnosis of GCT for me. I keep a journal of symptoms for reference which I would suggest everyone do. Be aware of changes in your body - although we all may have similar symptoms, there are some that may be more prominent for each of us in the early detection of this cancer.Please add your symptoms by responding to this message so others can benefit from your experience. Add anything that you think would be useful. With so little known about GCT, we need to pull together to make it more easily recognized.Brenda Gct2-brenda Thu, 08 May 2008 00:00:00 GMT  On 5/8/2008 Gct2-brenda wrote:Since posting my message on Granulosa - Chemo? I have had a couple of requests for symptoms I experienced in recurrence of Granulosa. So I thought it would be a great idea to post them here for all to view. I am heading for the OR on May 15th for my 3rd surgery in 6 years. I have been able to catch the tumours early because I have been aware of my own symptoms. I hope my experience will help someone else. Here is what I have experienced each time:First occurrence (complete hysterectomy in July 2002) (Stage 1C): Extreme pain in the lower left abdominal area that doubled me over and resulted in my going to the emergency room for meds for pain and nausea. For the next 4-5 days, the muscles across the front of my abdominal area felt like they had been exposed to too many situps! I had constant aches in both shoulders which the ER doctors felt were related to a gastrointestinal problem. They were very wrong. I experienced excessive gas & bloating, was tired and had frequent naps, a discomfort in the abdominal area with some tenderness, slight nausea on occasion, and even when I was extremely hungry I felt full after only a few mouthfuls of food. I did not experience any weight loss. Also experienced urinary incontinence and a persistant cough that hung with me for over two months.First recurrence: Surgery January 28, 2007: Pain in abdomen returned but not as severe as first time. No pain in shoulders, but all other symptoms were the same. No weight loss.Second recurrence: Surgery scheduled for May 15, 2008: Pain in left abdomen was the first sign that something was not right. I had very few other symptoms appear until a month later when I started a new job and then the nausea, headaches, and achiness made their appearance. I quit my job (which I wasn't enjoying anyway) and after a month, only the occasional headache and the need for naps remained until this past week. (Based on this, I expect that the symptoms of this disease are enhanced by stress.) Over the past couple of days I find that I am experiencing more gassiness, tenderness and discomfort in the abdominal area. No weight loss. CT Scan has been used to confirm the diagnosis of GCT for me. I keep a journal of symptoms for reference which I would suggest everyone do. Be aware of changes in your body - although we all may have similar symptoms, there are some that may be more prominent for each of us in the early detection of this cancer.Please add your symptoms by responding to this message so others can benefit from your experience. Add anything that you think would be useful. With so little known about GCT, we need to pull together to make it more easily recognized.BrendaHi BrendaThis is a great idea.  My symptoms were constant bleeding...for 2+years and bloating.  When I think back now, I (did) have some episodes of dizziness that would last an hour or so which would come and go. I dont know if it's related to the cancer.   SusieB    SusieB Fri, 09 May 2008 00:00:00 GMT Actually, Susie, now that you mention it, I also had abnormal bleeding. My gynocologist (at that time) thought I had a fibroid tumour and we had monitored with that thought in mind for about 10 years. I was subscribed birth control when the bleeding became fairly steady which brought the bleeding under control (a few years before my initial surgery). I went for a few years with regular cycles and no specific problems. And then the pain struck .......Brenda  Gct2-brenda Fri, 09 May 2008 00:00:00 GMT  On 5/8/2008 Gct2-brenda wrote:Since posting my message on Granulosa - Chemo? I have had a couple of requests for symptoms I experienced in recurrence of Granulosa. So I thought it would be a great idea to post them here for all to view. I am heading for the OR on May 15th for my 3rd surgery in 6 years. I have been able to catch the tumours early because I have been aware of my own symptoms. I hope my experience will help someone else. Here is what I have experienced each time:First occurrence (complete hysterectomy in July 2002) (Stage 1C): Extreme pain in the lower left abdominal area that doubled me over and resulted in my going to the emergency room for meds for pain and nausea. For the next 4-5 days, the muscles across the front of my abdominal area felt like they had been exposed to too many situps! I had constant aches in both shoulders which the ER doctors felt were related to a gastrointestinal problem. They were very wrong. I experienced excessive gas & bloating, was tired and had frequent naps, a discomfort in the abdominal area with some tenderness, slight nausea on occasion, and even when I was extremely hungry I felt full after only a few mouthfuls of food. I did not experience any weight loss. Also experienced urinary incontinence and a persistant cough that hung with me for over two months.First recurrence: Surgery January 28, 2007: Pain in abdomen returned but not as severe as first time. No pain in shoulders, but all other symptoms were the same. No weight loss.Second recurrence: Surgery scheduled for May 15, 2008: Pain in left abdomen was the first sign that something was not right. I had very few other symptoms appear until a month later when I started a new job and then the nausea, headaches, and achiness made their appearance. I quit my job (which I wasn't enjoying anyway) and after a month, only the occasional headache and the need for naps remained until this past week. (Based on this, I expect that the symptoms of this disease are enhanced by stress.) Over the past couple of days I find that I am experiencing more gassiness, tenderness and discomfort in the abdominal area. No weight loss. CT Scan has been used to confirm the diagnosis of GCT for me. I keep a journal of symptoms for reference which I would suggest everyone do. Be aware of changes in your body - although we all may have similar symptoms, there are some that may be more prominent for each of us in the early detection of this cancer.Please add your symptoms by responding to this message so others can benefit from your experience. Add anything that you think would be useful. With so little known about GCT, we need to pull together to make it more easily recognized.Brenda I have a few questions. I had a Juvenile Granulosa cell Tumor removed in 2005 and now for the first time my bloodwork has came back abnormal. I will go have more bloodwork ( inhibin A & CA125) on June12 and will have to wait a week to see what happens. I'm not if the Juvenile tumor can come back or if I should be worried. I don't know if my mind is playing tricks or what, but i beleive I have had some of these symptom. I'm now 34 years old i really didn't think i ahd to woorry about this again. It took the doctors while to figure out what I had but then they seem to think I was going to be fine. No one has ever said I might have a chance of the tumor coming back. Can someone please help. What are my chances they it is back? Thanks for your help..  rockspecialone Fri, 30 May 2008 00:00:00 GMT Hi Rockspecialone - I can only speak from my experience and pass on to you what I have been told by the various doctors that I have spoken with regarding GCT. The chance that it will return is normally slim, but there is a case on record of GCT recurring after 30+ years. There is so little known about this type of cancer that not only is it difficult to diagnose, it is difficult to treat successfully with adjuvant therapy or even predict its return.But have faith and remain positive. From my research I have learned that GCT is normally a slow progressing cancer that does not spread quickly to other organs. It is not necessarily a death sentence and many with recurring GCTs live long and healthy lives.There is a web site in New Zealand that focuses on GCT. You can check it out at http://www.gctf.org.nz/. If you have any questions, I'm sure someone there can direct you to a good source of information. It is good to be informed about what is going on in your body. Just remember that everything you read on the Internet is not necessarily going to be applicable to your personal situation. GCT affects each of us differently.I will keep you in my prayers and hope that the symptoms you are experiencing are not a return of your JGCT. Sometimes stress can cause symptoms that make us think the worst. So keep your chin up and go on living. Please let me know how things go. I hope to hear good news from you in a few weeks!!~Brenda Gct2-brenda Fri, 30 May 2008 00:00:00 GMT thanks, It helps so much to  here from others like myself. Thanks for keeping it postive. I will return in a few weeks with the results. Thanks for your reply.   rockspecialone Fri, 30 May 2008 00:00:00 GMT I had already had many GYN problems, a long list since puberty actually.  However, when GCT showed up I already had a polycystic ovary that was non functioning.  The GCT showed up there & it's my belief these two are related.I had my period at the wrong time despite being on a hormone regimen.  I knew something was wrong at that point.  Turned out my uterus was quite enlarged even though I had no pain.  My surgery started out to remove my enlarged uterus, but then the entcapsulated GCT was found.  My entire reproductive system was removed at that point.I advise to listen to your body, it often gives you some kind of signal when something is wrong.  If the first doctor isn't listening to you, get a second opinion or a third. greenasagourd Fri, 30 May 2008 00:00:00 GMT I knew I did not feel like my normal self.  I experienced the following:Bloated abdomen - about 6 months pregnant lookSevere lower back pain - severe pain in lower abdomenAshy color of skin on my faceI could sleep and sleep for hours in the middle of the day and then sleep all nightMy monthly cycle became very erratic - it was so unpredictable - and eventually stopped altogetherI lost quite a bit of weight without even tryingStarted using the restroom quite frequently Sue m w Thu, 05 Jun 2008 00:00:00 GMT