CancerCompass message board discussion started by Sammy on 9/2/2003 http://www.cancercompass.com/message-board/message/all,761,0.htm Thu, 28 Aug 2008 00:00:00 GMT Thu, 28 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi, Sorry to sound ingnorant, however, I have done some research and want to know if any of you started the diagnostic process after first being diagnosed with a cyst, but you had all the symptoms related to ovarian cancer. I want to make sure my doctors do all the right tests to get the proper diagnosis. Thank you, your messages have all been an inspiration to me. Sammy Tue, 02 Sep 2003 00:00:00 GMT I am not sure what you are asking. I have had alot of cysts removed. I had the first one removed when I was 16 in my breast. I have had quite a few removed since. I had a cyst removed about 5 years ago on my right ovary and I now have stage 4 ovarian cancer. All cysts were sent in to be tested and they all came back benign. The said I have fybrocystic disease. If this is what you are asking, I will be glad to fill you in on what I know about my situation anyway. Good Luck! Shel A. Tue, 23 Sep 2003 00:00:00 GMT Have the dr order a lab test called CA125. 0 to 35 is normal range, above that especially in the hundreds or higher is pretty positive for ovarian cancer. I didn't have a diagnosis of cysts, but that test should tell you for sure minnie p. Tue, 30 Sep 2003 00:00:00 GMT What kind of treatments have you had for your cancer. I am on another discussion board and we like to share experiences and treatment options. Hugs and good health to you. Barbara W. Tue, 30 Sep 2003 00:00:00 GMT I too do not know what you mean by diagnostic process. When I found my cyst/tumor my doctors went into high gear and got a CA125 test. This test is a tumor marker but it is a very good test to have. You need to encourage your doctor to give you one and then go from there. I am a 18 month survivor and it is important to stay on top of your symptoms. If you don't get the answers you want try another doctor and find you an gynecological oncologist if it turns out to be cancer. Barbara W. Tue, 30 Sep 2003 00:00:00 GMT Hi, My gyne was "following" a small 5cm cyst with ultrasounds (2) and we finally decided it wasn't menstrual related so let's do a lapraroscopy and check it and remove it. Thank God he did....it ended up being a normal cyst with a malignancy growing out of it....caught it early and my oncologist calls me "Lucky". Make sure you get pelvic/abdominal AND a transvaginal ultrasound...if lyour cycst(s) donot go away after menstrual cycle...go in,have your doctor do a frozen section and get rid of it....please! Don't let doctors pass over your symptoms as IBS or anything else until they've gone in (laparoscopy is usually an outpatient procededure) and know for certain it's just a simple cyst...either way...it shouldn't be there! Good Luck! Donna M. Tue, 30 Sep 2003 00:00:00 GMT Hi Barbara What other discussion boards are you on? Can never get enough information. When you get a chance, pls. let me know if you can. Thank you and wish you all the best always. Anna August Z. Wed, 01 Oct 2003 00:00:00 GMT Yes, Barbara, I would be interested to know what other boards you or anyone else is on also. I have stage 4 ovarian cancer and would like to know as much as possible from anyone else out there that does also. I am only 43 and only have a 5% chance to make it for a year. I would think that there are alot of people out there that have been given the same kind of odds and are doing ok. Thanks! Good luck to you all! Keep the positive attitudes!!! Shel Shel A. Wed, 01 Oct 2003 00:00:00 GMT One is at the Johns Hopkins Site - link below http://pds17.pathology.jhmi.edu/N/N.WEB?EP=N&URL=/MCGI/SEND1^WEBUTLTY(199,109) The link below is to a group we set up so we could chat with each other but since we are all across the world it gets tricky some times. http://groups.yahoo.com/group/steelmagnoliasOVCAsupportgroup/ Barbara W. Fri, 03 Oct 2003 00:00:00 GMT Thank you all for replying! Sorry, I didn't write earlier but my internet was down. You all answered my questions. I had the CA-125 results last week and it was 5.9. My surgery was scheduled for oct 14th. I had one biopsy on my left breast that had microcalcifications that looked very much like an early stage cancer to the doctor, it came back benign. I still have one other cyct in the same breast they are watching, it hasn't shrunk so it will probably be biopsied after my ovarian cysts are removed. The ovarian cysts are causing a lot of pain. Even though the CA-125 was low, I have heard about many whom are told they are ok and then a couple of years later had a late stage cancer diagnosis. I wanted to know what I can do now diagnostically to make sure that doesn't happen to me as I have been quite ill, nauseated, can't eat, high fatigue, constipation, weight loss, brain fog, plus my lymphs both under my left arm and in my groin are always aching. I truly appriciate all of your support and the strength you have shown, Sincerly, Shelly Sammy Fri, 03 Oct 2003 00:00:00 GMT Thank you very much for your information. I just sent another message at the bottom of the tree explaining why it took me so long to answer and what my situation was. Do feel there was anything you could have done sooner to get the cancer diagnosis before it reached stage 4? Thank you, Shelly Sammy Fri, 03 Oct 2003 00:00:00 GMT Sorry to hear of all your troubles. No, I don't think anything else could have been done unless I had them do a total hysterectomy before I had the pain and other ovarian cancer symptoms. I ahd a complete physical done 6 months prior to going in for another. I didn't have any problems then. It all came up pretty quick. When I had the CA125 done on Jan 7th, it was 1859! They did not do a CA125 at my physical prior to that. I have been really healthy up until this. That is why I knew that something was wrong. I had a pelvic ultrasound done, chest & pelvic xrays, blood tests, MRI, had the fluid removed from my lungs, had major surgery on the 17th. with a gynecologic oncologist. I was a stage 4 at that point. I now have more nodules in my lungs and ovarian cancer fluid around my heart. I have another echo done on Monday, cardiologist appt on Tuesday, my reg. Dr. appointment is on Thursday. They want me to do chemo again but need to find out for sure what all is what first. My mom was diagnosed with breast cancer in 1978 and it then went to her bones. She died in 1982. Please seriously weigh all your options. Don't take just one Dr. opinion. Get another one or 2. If I would have it to do over again, I would have had a total hysterectomy done when they removed the cyst from my ovary back then. Good luck to you all and I hope I have shed alittle light on your question. Oh, by the way, after chemo, my CA went down to 1.8. It is now back up to 5.6 and they have found these other things. Don't count only on the CA125. All we know for sure is that it is going back up. I still reccommend a CA125 to anyone!!! Please feel free to email me at my own email at anytime. I will always be here for a helping hand or to lsiten to you. Keep the positive attitude & my prayers are with you all!!! We can win this battle!!!!! Shel A. Sat, 04 Oct 2003 00:00:00 GMT Thank you Donna for sharing your experience. What was your CA-125 level when they first removed the cyst and did you have any ovarian cancer symptoms? Sincerely, Shelly Sammy Sat, 04 Oct 2003 00:00:00 GMT Hi Shelley, Good to hear from you. My CA-125 prior to surgery was a 10, after surgery it was a 10 and after chemo it was a 6. I probably did have many of the symptoms of ovarian CA, (fatigue, GI upsets, constipation, bloating, gas..) but, I would have written that off to PMS and being somewhat overweight, I have been seeing gastroenterolist for GERD and colon polyps so the GI symptoms wouldn't have been a big red flag and it was a busy time at work so "fatigue" didn't stand out either..so even if I had some of the symptoms I doubt I would have connected the dots...besides my cyst was discovered accidentally when I was having a urology work up for blood in my urine...blood turned out to be nothing as kidneys and bladder were fine, but the CT scan showed the cyst and I was on my way to my gyne for that...so they never suspected mine was CA. I am just thankful my primary care doctor big hug for making me go to the urologist. It probably saved my life. Anyway, all I can say is pay attention to any symptoms that last over 2 weeks...and again...if the cyst isn't menstrual cycle related..get the tests and get a laparoscopy and get it out. You take things seriously and make your doctors do the same. I shudder to think of how long it would have been before mine was caught if not for the strange circumstances I experienced. Well, remember knowledge is power. Good luck to you! DM Donna M. Sat, 04 Oct 2003 00:00:00 GMT Hi, Live in South Africa - 48 years old - had a malignant ovary removed in February - had started with blood clots November last year in my legs - and tired - put it down to work pressure - hectic tummy cramps for a week and abnormal stool- 2 ultrasounds and chest xrays all okay - on warfarin for the blood clots when the professor had no further explanation asked for a cat scan - (not one of the ultrasounds had picked this up - both done by different radioligists - and they have no explanation why they didn't see it) - and there was the"squatter" - name we gave it - went to gynae he said probably a cyst have it out when I am ready - went in the following week - dr thought all okay as no fluid in the pelvis, no swollen glands etc - 4 days later diagnosis stage 1 - was completely encapulated - no extentions - was told how lucky I was as this is not an easy cancer to find at this stage - went for a 2nd opinion as I had been told no chemo and a CA125 every three months and a 6 monthly check up - 2nd gynae - wanted me straight back in to remove the other ovary - stomache washings and biopsy on fat and glands - I was horrified - he gave me a vaginal and rectal examination - said he thought all was fine but that I must be back in 6 months to have it done - had to do a range of tumour markings every month - I just couldn't go straight back for another op - it was a HUGE stumbling block for me - 2nd opinion oncologist - he said have it done then you know all okay - eventually went 8 weeks ago to my gynae as I am comfortable with him - 2nd ovary had attached itself to the colon and had internal bleeding - so good decision - once again very fortunate - now tumour markings every 3 months and 6 monthly check ups with ultrasounds and chest xrays - my tumour markings have been low from the beginning so personally I think a cat scan is the answer - ultrasounds have been useless with me - I do believe to stay positive and do what is right for you - it has taken me a long time to get back to being myself this time round as I had terrible hot flushes immediately and mood swings - went back to gym two weeks ago and not had any further hot flushes or moods - just have to try and loose weight. GOOD LUCK - stay positive and be good to yourself. Anet anet k. Mon, 06 Oct 2003 00:00:00 GMT Thank you very much for your response. It shows us how importand it is to get second opinions. Keep up the fight! All the best, shelly Sammy Mon, 13 Oct 2003 00:00:00 GMT