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Ovarian Mass gone for urgent biopsy-HELP
Hi there I will try to keep this as brief as I can. I am 33 years old and have stage four endometriosis. I went for surgery to have this treated and the 4-5cm (what was thought to be an endometriosis related cyst) removed last Friday. I had been having urinary symptoms, pain and urgency, massive bloating (looked pregnant) and pain especially around ovulation.
The operation did not go to plan at all as when they got inside they found an ovarian tumor (what we had thought was an endometreomia – although mistakes have been made as my GP let alone the consultant never saw the scan images) and so this was removed by the surgeon using a bag technique and he then performed a peritoneal wash to look for stray cancer cells so they can stage it if need be.
There was lots of endometriosis there as suspected and this will need a further 3-4 hour operation with a bowel surgeon in the future. He did not remove any of it as he was worried that what he has found could be ovarian cancer and he would spread it by undertaking any more surgery.
Obviously this has come as a huge shock and now we have this unbearable wait to find out what the situation will be. I guess I am here to ask has anyone had an ovarian mass/tumour removed that looked cauliflower in appearance and what was the outcome. Thanks in advance.
The operation did not go to plan at all as when they got inside they found an ovarian tumor (what we had thought was an endometreomia – although mistakes have been made as my GP let alone the consultant never saw the scan images) and so this was removed by the surgeon using a bag technique and he then performed a peritoneal wash to look for stray cancer cells so they can stage it if need be.
There was lots of endometriosis there as suspected and this will need a further 3-4 hour operation with a bowel surgeon in the future. He did not remove any of it as he was worried that what he has found could be ovarian cancer and he would spread it by undertaking any more surgery.
Obviously this has come as a huge shock and now we have this unbearable wait to find out what the situation will be. I guess I am here to ask has anyone had an ovarian mass/tumour removed that looked cauliflower in appearance and what was the outcome. Thanks in advance.
Yes, my gynecologist is a "wolf in sheep's clothing." Sadly, there are far too many like him here in the U.S. A 20 year history of respect for him during my childbearing years was my downfall.
That is a ridiculously heavy handed approach! Mine looks like cancer and they have only removed the actual tumour for a biopsy before they will decide on what may or may not need to come out. Even with boarderline cancer here in the UK they sometimes don't even remove the ovary! The states have a really surgically aggressive approach I have heard.
My ovarian cystadenoma was 9.5 cm. I felt strongly that I did not have ovarian cancer since I do not have a family history AND it is rare (average woman's lifetime risk is less than 2%). But of course I was relieved to hear it was benign. However, my doctor caused more harm than good by needlessly removing my organs. I am now left with the aftermath of hysterectomy and ovary removal that has severely hampered every aspect of my life.
Hi there how large was your tumour? Did you have any symptoms at all? I bet that was a massive relief for you?
Mine was also referred to interchangeably as a tumor and a cyst. A tumor is an abnormal growth and most abnormal growths (on the ovaries and elsewhere) are benign (non-cancerous). Specifically (per biopsy), mine was a mucinous cystadenoma.
My goodness Alex its sounds like you have been utterly let down by the medical community. I cant believe you were so ill and yet it wasn't picked up. I think they assume things on scans to be cysts when in fact they are tumours frequently as this too is what has happened to me.
I bet there are so many women who have been told IBS and fobbed off with that when its been ovarian cancer! I was told IBS for years when actually it was endometriosis, seems its a condition that is an easy one to try to persuade people they have.
I believe clear cell is one that is more likely to be related to endometriosis?
So what is the principle of chemo then does it just keep it from growing then? 27 years my goodness that is something isn't it! What is your current prognosis then? You sound like a fighter!
I bet there are so many women who have been told IBS and fobbed off with that when its been ovarian cancer! I was told IBS for years when actually it was endometriosis, seems its a condition that is an easy one to try to persuade people they have.
I believe clear cell is one that is more likely to be related to endometriosis?
So what is the principle of chemo then does it just keep it from growing then? 27 years my goodness that is something isn't it! What is your current prognosis then? You sound like a fighter!
I had symptoms for six years. First I bled non stop for over two years. I even had an ablation and still bled. I went to my GP and Gynecologist. Then I started throwing up. I had pain lower and at the Ovary. They did a CT scan but it showed nothing. They took out my gallbladder but I still had the pain and throwing up. I was in a clinical trial and getting papsmears, endometrial biopsies, and mammograms so I thought it would show any female Cancer. I had had cysyts show on Ultrasounds but they thought it was PCOS.
I went to the ER because I could not stop vomiting for days. I had the Classic pregnant belly and I was losing weight. I also had had diaphragm spasms for two years. I had a heart work up. Real pain and not being able to breathe they thought it was my Multiple Sclerosis. A friend worked at the ER and tried to get them to do tests. UNC would not allow the ER doctor to admit me or do test.
I went to a Gastroentrologist. He refuse to do tests he said he was 98% sure it was IBS. I had no constipation or diarrhea.
Four months later I went to the GP and said I do not know what is wrong but something is terrible wrong. She did a bunch of test including a Pelvic Ultrasound, That was a Friday. The Cancer was all over the place on my ultrasound. Both Ovaries, Liver, Spleen, Diaphragm, for places on the bowel, lymph system.
On Monday the Doctor called and said I needed to see a GYN/Oncologist I had a mass. Tuesday I saw the Oncologist. He told me he was basically going to gut me like a fish. I had surgery Monday. When I woke up the Fellow (I never saw the Doctor again) told me it was worse than they thought. It was a Cancer called Clear cell which is resistant to chemo. They would put a port in the next day and start Chemo in a month.
I was underweight and not eating. They did not get me with a Nutritionist even though I asked. I also needed blood after surgery and they would not give me blood. My doctor turned me over to a Nurse Practioner so I never saw a doctor. My blood levels got worse and worse and she ingnored it. They did not tell me I was only getting half the chemo because I was underweight.
A friend who was an oncologist finally told me I would die if someone did not do something. My Primary Care was shocked at how sick I came it week after week so I switched to Duke during chemo.
I tell people to check out all the local Cancer treatment. I had see Commercials for both New Cancer Hospitals at UNC and Duke so I thought I would be getting State of the Art Care in State of the Art Facilities at either place. The only Cancer UNC does not treat in their Lineberger Center is Gyncological Cancers. They are treated in an old hall way in the older hospital. I was literally sick when I saw my Chemotherapy setting. It was old, dirty, and crowded. Nasty is what I though. You are there all day. Everyone is different. Some people like communal chemotherapy where you can talk, I like to see people but be left alone and pull the curtain if I want to.
Likewise my Doctor was worried about launching is Rock Career. He is the lead in No Evidence of Disease a band to promote GYN Cancer so what hospital would not love a doctor with that publicity. He is all over Facebook and You Tube. He just can't be bothered with patients who have just had their lives turned upside down finding out they have Ovarian Cancer.
If I had it to do again I would have gotten a second opinion and compared facilities. I definitely would have gotten another doctor. It all turned out well in the end and I am where I am supposed to be. If they had cared at UNC I would have missed out on the study. I was scared and just did what they told me. Now I know you have some time. When my brother got Cancer is explored his options.
People are not Statistics. Also Ovarian seldom spreads to bone and brain like Breast. It stays in the peritineal cativity. What you have to watch for is blocked bowels from tumors. Also fluid (ascites) on the lungs or belly hampering breathing. Most women with Ovarian have ascites but it does not bother them. It is when it has to be drained it is an issue.
I heard of a woman who had chemo once a week with Doxil ( you do not lose your hair) for 27 years over 100 rounds but she lived her life. I go once a week and the rest of the time is my own.
Alex
I went to the ER because I could not stop vomiting for days. I had the Classic pregnant belly and I was losing weight. I also had had diaphragm spasms for two years. I had a heart work up. Real pain and not being able to breathe they thought it was my Multiple Sclerosis. A friend worked at the ER and tried to get them to do tests. UNC would not allow the ER doctor to admit me or do test.
I went to a Gastroentrologist. He refuse to do tests he said he was 98% sure it was IBS. I had no constipation or diarrhea.
Four months later I went to the GP and said I do not know what is wrong but something is terrible wrong. She did a bunch of test including a Pelvic Ultrasound, That was a Friday. The Cancer was all over the place on my ultrasound. Both Ovaries, Liver, Spleen, Diaphragm, for places on the bowel, lymph system.
On Monday the Doctor called and said I needed to see a GYN/Oncologist I had a mass. Tuesday I saw the Oncologist. He told me he was basically going to gut me like a fish. I had surgery Monday. When I woke up the Fellow (I never saw the Doctor again) told me it was worse than they thought. It was a Cancer called Clear cell which is resistant to chemo. They would put a port in the next day and start Chemo in a month.
I was underweight and not eating. They did not get me with a Nutritionist even though I asked. I also needed blood after surgery and they would not give me blood. My doctor turned me over to a Nurse Practioner so I never saw a doctor. My blood levels got worse and worse and she ingnored it. They did not tell me I was only getting half the chemo because I was underweight.
A friend who was an oncologist finally told me I would die if someone did not do something. My Primary Care was shocked at how sick I came it week after week so I switched to Duke during chemo.
I tell people to check out all the local Cancer treatment. I had see Commercials for both New Cancer Hospitals at UNC and Duke so I thought I would be getting State of the Art Care in State of the Art Facilities at either place. The only Cancer UNC does not treat in their Lineberger Center is Gyncological Cancers. They are treated in an old hall way in the older hospital. I was literally sick when I saw my Chemotherapy setting. It was old, dirty, and crowded. Nasty is what I though. You are there all day. Everyone is different. Some people like communal chemotherapy where you can talk, I like to see people but be left alone and pull the curtain if I want to.
Likewise my Doctor was worried about launching is Rock Career. He is the lead in No Evidence of Disease a band to promote GYN Cancer so what hospital would not love a doctor with that publicity. He is all over Facebook and You Tube. He just can't be bothered with patients who have just had their lives turned upside down finding out they have Ovarian Cancer.
If I had it to do again I would have gotten a second opinion and compared facilities. I definitely would have gotten another doctor. It all turned out well in the end and I am where I am supposed to be. If they had cared at UNC I would have missed out on the study. I was scared and just did what they told me. Now I know you have some time. When my brother got Cancer is explored his options.
People are not Statistics. Also Ovarian seldom spreads to bone and brain like Breast. It stays in the peritineal cativity. What you have to watch for is blocked bowels from tumors. Also fluid (ascites) on the lungs or belly hampering breathing. Most women with Ovarian have ascites but it does not bother them. It is when it has to be drained it is an issue.
I heard of a woman who had chemo once a week with Doxil ( you do not lose your hair) for 27 years over 100 rounds but she lived her life. I go once a week and the rest of the time is my own.
Alex
Thanks for your response! I cant believe you strength! You must be such a strong person to endure what you have and stay positive.
I really hope your life can be extended as long as possible. Cancer is one nasty illness because it hides for so long!
Did you have any symptoms? How were you diagnosed? x
I really hope your life can be extended as long as possible. Cancer is one nasty illness because it hides for so long!
Did you have any symptoms? How were you diagnosed? x
My doctor called my tumors cysts. He used them interchangeably. He never said Cancer which was weird. He tried to spare me. I am upbeat on the internet because I do not know how someone will react. Some brutal facts other people want hope, There is always hope.
I have stage 4 Ovarian Cancer if you want to know something I will do my best to help. Do I think you have Cancer? I honestly do not know I have seen it go both ways. Plus I do not have your chart and I am not a doctor. I will never forget the phone call I got saying I needed to see a GYN Oncologist. It was surreal. This happens to other people not me. They did not tell me how bad it was. Except they said I may wake up with a colostomy or no bladder. Neither happened. They did take part of my bowel. They put in a port the next day to deliver chemo. I have now had 21 Chemo therapies. You start with six they are the hardest. You do not want to eat and you have to. Many women have the six and then go into remission. Mine was to widespread. I am in a Clinical Trial. With a Clinical trial half the people get the medicine and half get a placebo. I am doing so well I think I am on the drug. I have Cancer in 16 places. I live a pretty normal life.
I started at one Hospital but they were behind the times. It was a teaching hospital. I switched to a premier Cancer Hospital which has save my life. I would have died in August of 2012 if I had stayed at the first place. They gave you chemo but did nothing if you were too thin or threw up. I wish I had checked out the other hospital at the beginning. It turned out okay in the end.
They have great drugs for nausea and they can keep you from vomiting. I have ridden horses and trained dogs while on Chemo. I have lots of friends who drive me to the hospital. I have gone on vacations. I have my hair with this chemo and have gained my weight back.
Alex
I have stage 4 Ovarian Cancer if you want to know something I will do my best to help. Do I think you have Cancer? I honestly do not know I have seen it go both ways. Plus I do not have your chart and I am not a doctor. I will never forget the phone call I got saying I needed to see a GYN Oncologist. It was surreal. This happens to other people not me. They did not tell me how bad it was. Except they said I may wake up with a colostomy or no bladder. Neither happened. They did take part of my bowel. They put in a port the next day to deliver chemo. I have now had 21 Chemo therapies. You start with six they are the hardest. You do not want to eat and you have to. Many women have the six and then go into remission. Mine was to widespread. I am in a Clinical Trial. With a Clinical trial half the people get the medicine and half get a placebo. I am doing so well I think I am on the drug. I have Cancer in 16 places. I live a pretty normal life.
I started at one Hospital but they were behind the times. It was a teaching hospital. I switched to a premier Cancer Hospital which has save my life. I would have died in August of 2012 if I had stayed at the first place. They gave you chemo but did nothing if you were too thin or threw up. I wish I had checked out the other hospital at the beginning. It turned out okay in the end.
They have great drugs for nausea and they can keep you from vomiting. I have ridden horses and trained dogs while on Chemo. I have lots of friends who drive me to the hospital. I have gone on vacations. I have my hair with this chemo and have gained my weight back.
Alex
1. A cyst is a sac filled with fluids or gas, but a tumor is a solid mass of tissues.
2. For the reason above, it feel softer than a tumor.
3. A cyst is less likely to be cancerous, compared to a tumor.
4. Cysts are caused by infections, excessive production from sebaceous glands, or a foreign body. Tumors are mainly genetic in nature.
5. A cyst inside the body can rupture and spill its contents, thereby posing a serious danger to the person. A tumor is harmless as long as it is non cancerous and does not interfere with the functioning of a body.
2. For the reason above, it feel softer than a tumor.
3. A cyst is less likely to be cancerous, compared to a tumor.
4. Cysts are caused by infections, excessive production from sebaceous glands, or a foreign body. Tumors are mainly genetic in nature.
5. A cyst inside the body can rupture and spill its contents, thereby posing a serious danger to the person. A tumor is harmless as long as it is non cancerous and does not interfere with the functioning of a body.
There is a difference between a cyst and removal of a tumour though. If it was a cyst I wouldn't be anywhere near as worried.
Hopefully the tumor is benign as MOST are. I had a 9.5cm suspicious looking ovarian cyst that was benign.
I know you are scared. They are being careful which is good. Most Ovarian Cysts turn out to be benign. You have a 1.6% chance of Ovarian Cancer if that makes you feel any better. It is good they did the wash. The waiting is the hardest part. I had a friend they were sure it was Cancer and it turned out to benign. Let us hope that is the case. It is no fun waiting and worrying.
Alex
Alex
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