Aa
worried about cancer
Hi. I'm a 45 years old mom of two. I'm so confused about what to do and I'm scared I'll have to decide tomorrow. I wish I could just "leave it to the doctors" but I know I love me more than they do and I need for them to get this right!!
This last Oct. I had to literally talk my ob/gyn of 11 years into letting me get an ultrasound of my pelvis. I was having a lot of pain and pressure on my left side (I still am but it's more intense and spread out now and pretty much constant. I'm also having more frequent twinges of pain on my right) I had also asked her for the ultrasound because I experienced a pure black goopy discharge. Nothing like I'd ever seen before or since.
My periods are VERY infrequent for the last 2 or 3 years but every so often I would get a lot of pain and pressure like my body was trying to have a period. Sometimes I'd have a little blood on the toilet tissue. I think I may have had 3 or 4 last year periods last year. Last Oct I finally had a period for the first time in about 6 months. It was very heavy with clots and tissue for about 2 weeks. About a week later, I bled very heavily again with clots and tissue for about 1 1/2 weeks. I didn't bleed again till the end of this past Jan. It was a very strange too. After only a few days of the heavy stuff, I stopped for 24 hours and then it became completely watery with a bloody discharge. Once again,unlike any other discharge I've ever had. The next day it went back to the bright heavy stuff. (Sorry for too much detail. I'm not sure what this forum if all about yet so forgive me if this is all too much. I guess I've needed it off my chest.)
Oct 27th, I had the ultrasound where they fill the uterus up with saline.
After the tech's finished, the radiologist came in and continued with the US and when he was finished, he was visibly disturbed. He told me "You know, in 2008 you had an US with similar findings".
I had completely forgot till he said that! I remembered my GYN completely blew it off saying it's no big deal because I have PCOS. Ironically, besides the very large ovarian size in Oct (which changed dramatically in Jan. I'll post the findings below. Both cysts really grew a lot and now there's a calcification in my right ovary. I'm hoping it's good as far as ovary size tough?)
Oct 11 Ultrasound showed an echogenic structure in left ovary measuring 4.9 x 3.2 x 4.5 cm and the left ovary measures 5.7 x 3.6 x 5.2 cm
Within the right ovary there's a dominant follicle measuring up to 2.6 cm and the ovary measures 2.0 x 2.8 x 2.8 cm and there is a tiny calcification within right ovary.
January's US feaks me out a bit. The left cyst now measures up to 6.8 cm. The radiologist said it's consistent with an endometrioma but now appears to be attached to the posterior of the uterus.
It also states both of my ovaries as being normal now (in fact the right ovary is now larger than the left)
Sorry it took me do long to get to this but now this is where I'm at and if anyone's still even reading.... THANK YOU!
My doctor's nurse called me after the Oct scan to tell me my gyn wants me to follow up with another US in 6-8 weeks. I told her nurse I'm not waiting to see if the cysts go away in a month or two because the big one had already stuck around for over 3 years and I was hurting and uncomfortable.
The nurse encouraged me to go in to speak with my doctor about it. After several minutes of having to plead my case for not waiting another 6-8 weeks for another scan, she said she would do a exploratory lapriscopy and look for endometriosis and if anything showed suspicious she, or an oncologist, would go back in.
I told her no. Was I right? Why would I go through two surgeries. Even if it does turn out to be a "normal" endometrinoma, I'm uncomfortable and hurting and can't wear my pants anymore!
That was the end of last OCT and here I still sit, more worried than ever :(
Fast forward to a couple weeks ago. It took me that long to get in with another gyn at the Cleveland Clinic. OK, this is where it gets really scary. About 6 weeks ago, I developed, out of nowhere, a bony growth the size of a pea on my clavical bone that's very painful and radiating pain and a strange tightness to my should chest and arm. It's very hard and firmly attached to the subclavian clavicle. A ligament type vein is attached to it. It has grown slightly bigger since it popped up. I've had many enlarged swollen nodes in my neck for the past year and nobody seemed concerned with them. I guess because they're movable and soft. I've also have this strange lesion on the inside of the cartilage of my nasal passage. I feel it's not a "clear" passage and I can't blow that feeling out.
The new doctor in Jan, even before I went in for the ultrasound that day and even though she never examined me or my neck, told me that whatever needs to be done with my ovary problems may have to wait till somebody figures out what's going on in my neck. She flat out told me that my current gyn is much more experienced with this then her.
I never really got to discuss them with my regular gyn either because when she called me I was at a ENT doctor for my neck and nose.
OK, now fast forward to today (Sorry this is SO long! I haven't been able to get this off my chest.)
I decided to go right for the GYN/ONC. I made an appointment with him and it's tomorrow. In the meantime, I picked up all my records and my scans to take to the appt and I am BLOWN AWAY. Since Oct it's grown from 4.9 cm to almost 7cm and with all the symptoms of pressure, pain, leg numbness, uncomfortable bowel, rectum, I wonder if it's grown more since Jan.
Now for the biggest kicker.....I have 3 other reports I din't know about! This left cyst been there since 2004. It was just under 3cm and states "Possible cystic in nature"
When I did speak to my GYN last week, all she did was scare me. She would not tell me if she thought it was an endometrinoma or if it looked malignant to her or if it had any free floating matter.
Is it normal to have US reports state and ovary is abnormal for 3 out of 5 reports and now the cyst is really big and attached to the uterus but my ovary is normal now? i feel like I'm dealing with quacks!
So, tomorrow I am going to keep my appt at 11am with my regular gyn but I'm still going to the gyn/onc at 3!!
I hope he's not a quack :(
Any opinions would be SO welcomed! Because of the calcification and smaller cysts on my right and the large left cyst possibly attached to the uterus and now this scary clavicle thing....
WOULD ANYBODY JUST ASK FOR A HYSTERECTOMY?
I REALLY don't want one but I love my kids more than I'm afraid of surgery.
Please be 100% open with your answer.
Wow. I've never typed so much in my life.
I'm sorry but Thank you!!
Randi
This last Oct. I had to literally talk my ob/gyn of 11 years into letting me get an ultrasound of my pelvis. I was having a lot of pain and pressure on my left side (I still am but it's more intense and spread out now and pretty much constant. I'm also having more frequent twinges of pain on my right) I had also asked her for the ultrasound because I experienced a pure black goopy discharge. Nothing like I'd ever seen before or since.
My periods are VERY infrequent for the last 2 or 3 years but every so often I would get a lot of pain and pressure like my body was trying to have a period. Sometimes I'd have a little blood on the toilet tissue. I think I may have had 3 or 4 last year periods last year. Last Oct I finally had a period for the first time in about 6 months. It was very heavy with clots and tissue for about 2 weeks. About a week later, I bled very heavily again with clots and tissue for about 1 1/2 weeks. I didn't bleed again till the end of this past Jan. It was a very strange too. After only a few days of the heavy stuff, I stopped for 24 hours and then it became completely watery with a bloody discharge. Once again,unlike any other discharge I've ever had. The next day it went back to the bright heavy stuff. (Sorry for too much detail. I'm not sure what this forum if all about yet so forgive me if this is all too much. I guess I've needed it off my chest.)
Oct 27th, I had the ultrasound where they fill the uterus up with saline.
After the tech's finished, the radiologist came in and continued with the US and when he was finished, he was visibly disturbed. He told me "You know, in 2008 you had an US with similar findings".
I had completely forgot till he said that! I remembered my GYN completely blew it off saying it's no big deal because I have PCOS. Ironically, besides the very large ovarian size in Oct (which changed dramatically in Jan. I'll post the findings below. Both cysts really grew a lot and now there's a calcification in my right ovary. I'm hoping it's good as far as ovary size tough?)
Oct 11 Ultrasound showed an echogenic structure in left ovary measuring 4.9 x 3.2 x 4.5 cm and the left ovary measures 5.7 x 3.6 x 5.2 cm
Within the right ovary there's a dominant follicle measuring up to 2.6 cm and the ovary measures 2.0 x 2.8 x 2.8 cm and there is a tiny calcification within right ovary.
January's US feaks me out a bit. The left cyst now measures up to 6.8 cm. The radiologist said it's consistent with an endometrioma but now appears to be attached to the posterior of the uterus.
It also states both of my ovaries as being normal now (in fact the right ovary is now larger than the left)
Sorry it took me do long to get to this but now this is where I'm at and if anyone's still even reading.... THANK YOU!
My doctor's nurse called me after the Oct scan to tell me my gyn wants me to follow up with another US in 6-8 weeks. I told her nurse I'm not waiting to see if the cysts go away in a month or two because the big one had already stuck around for over 3 years and I was hurting and uncomfortable.
The nurse encouraged me to go in to speak with my doctor about it. After several minutes of having to plead my case for not waiting another 6-8 weeks for another scan, she said she would do a exploratory lapriscopy and look for endometriosis and if anything showed suspicious she, or an oncologist, would go back in.
I told her no. Was I right? Why would I go through two surgeries. Even if it does turn out to be a "normal" endometrinoma, I'm uncomfortable and hurting and can't wear my pants anymore!
That was the end of last OCT and here I still sit, more worried than ever :(
Fast forward to a couple weeks ago. It took me that long to get in with another gyn at the Cleveland Clinic. OK, this is where it gets really scary. About 6 weeks ago, I developed, out of nowhere, a bony growth the size of a pea on my clavical bone that's very painful and radiating pain and a strange tightness to my should chest and arm. It's very hard and firmly attached to the subclavian clavicle. A ligament type vein is attached to it. It has grown slightly bigger since it popped up. I've had many enlarged swollen nodes in my neck for the past year and nobody seemed concerned with them. I guess because they're movable and soft. I've also have this strange lesion on the inside of the cartilage of my nasal passage. I feel it's not a "clear" passage and I can't blow that feeling out.
The new doctor in Jan, even before I went in for the ultrasound that day and even though she never examined me or my neck, told me that whatever needs to be done with my ovary problems may have to wait till somebody figures out what's going on in my neck. She flat out told me that my current gyn is much more experienced with this then her.
I never really got to discuss them with my regular gyn either because when she called me I was at a ENT doctor for my neck and nose.
OK, now fast forward to today (Sorry this is SO long! I haven't been able to get this off my chest.)
I decided to go right for the GYN/ONC. I made an appointment with him and it's tomorrow. In the meantime, I picked up all my records and my scans to take to the appt and I am BLOWN AWAY. Since Oct it's grown from 4.9 cm to almost 7cm and with all the symptoms of pressure, pain, leg numbness, uncomfortable bowel, rectum, I wonder if it's grown more since Jan.
Now for the biggest kicker.....I have 3 other reports I din't know about! This left cyst been there since 2004. It was just under 3cm and states "Possible cystic in nature"
When I did speak to my GYN last week, all she did was scare me. She would not tell me if she thought it was an endometrinoma or if it looked malignant to her or if it had any free floating matter.
Is it normal to have US reports state and ovary is abnormal for 3 out of 5 reports and now the cyst is really big and attached to the uterus but my ovary is normal now? i feel like I'm dealing with quacks!
So, tomorrow I am going to keep my appt at 11am with my regular gyn but I'm still going to the gyn/onc at 3!!
I hope he's not a quack :(
Any opinions would be SO welcomed! Because of the calcification and smaller cysts on my right and the large left cyst possibly attached to the uterus and now this scary clavicle thing....
WOULD ANYBODY JUST ASK FOR A HYSTERECTOMY?
I REALLY don't want one but I love my kids more than I'm afraid of surgery.
Please be 100% open with your answer.
Wow. I've never typed so much in my life.
I'm sorry but Thank you!!
Randi
wow I sure feel for you and can relate! I have had symptoms for a long time and was told it was nothing or then it was my gall bladder. So this past summer I had my gall bladder removed and had a ct prior to the surgery but all looked ok. My period was like a pitch black sludge and my periods were far and few between prior to this as well and they kept telling me it was because I wasn't having regular ones. I am 46 and they thought premenopausal. i just never thought this was it.
In August of 2011 had gall bladder out but my symptoms of the vomiting and the constipation and the pain did not stop they got worse. My right arm and shoulder and elbow got so sore I could hardly use them. Then in November the week after Turkey day I started vomiting and was ill for 12 days had to go to the hospital 2 times for IV fluids. All I heard was it was the flu and finally I had enough! So I threw a fit told them I wanted a CT got one done on Dec 8th and they found a large mass on my ovary said I needed a US to determine if it is solid or just a big cyst. Went the next day it was solid so I needed to see my gyno right away. She did some blood tests ca 125 it was elevated but not as high as most with ovarian cancer but referred me onto a GYNONC. Saw him the 22 of dec he came in said with my age and looking at my ct it was nothing and he would remove the ovary test it sometime the middle of February would be the first available time he could do it. I was mad to say the least I was sick of hurting and wanted this thing gone! I did not want a total hysterectomy either but I wanted it gone!
I finally decided to get a 2nd opinion and I encourage you too if you do not like this guy! I went to the Simon Cancer center in downtown indianapolis and saw a great surgeon but she was under the impression this would be benign and a simple removal possible bowel resections the tumor had grown larger than 8 cm (2.5 cm in less than a month increase) My odds were I would not have anything to worry about!
I worried myself sick and it is hard to tell you not too! I had my surgery and I elected for the devinci procedure which is robotic and I am glad I did it this way! I had my surgery on the 26th of January had a radical hysterectomy they took EVERYTHING including my cervix and all lymph nodes and the fat biopsy everything but my toes! I went home the next day and honestly the recovery has been great! I had little leaking from one of the 6 smaller incisions but hey it stopped. I actually went out for 5 hours on Saturday was worn out but felt good to get out. The worst day was the 4th but after that I have been getting better and better each day.
My situation is some what different in that my mass was solid but I did get my pathology back and it turned out to be fallopian tube cancer. I am glad I fought for what I wanted believe in yourself you know your body and if you cant get done what you want scream till you do! I was told many times by many doctorsit was nothing and made feel like I was crazy. I stood my ground and my doc was shocked at what she found. Go with your gut! Push them and if they wont listen find someone who will. I start my chemo the end of this month and my prognosis is good because I kept pushing it was fairly early! Go to this appointment be honest with them tell them about the black sludge period that is hugely important. Know what your pap smear results are current ones and they may do a culposcopy spelling sorry it is not fun but it can rule out issues in the endometrium of the uterus. I by no means am trying to scare you but if I had not listened to my gut and to my body and pushed I could have not found this in time! Good luck and hope to hear good news!
In August of 2011 had gall bladder out but my symptoms of the vomiting and the constipation and the pain did not stop they got worse. My right arm and shoulder and elbow got so sore I could hardly use them. Then in November the week after Turkey day I started vomiting and was ill for 12 days had to go to the hospital 2 times for IV fluids. All I heard was it was the flu and finally I had enough! So I threw a fit told them I wanted a CT got one done on Dec 8th and they found a large mass on my ovary said I needed a US to determine if it is solid or just a big cyst. Went the next day it was solid so I needed to see my gyno right away. She did some blood tests ca 125 it was elevated but not as high as most with ovarian cancer but referred me onto a GYNONC. Saw him the 22 of dec he came in said with my age and looking at my ct it was nothing and he would remove the ovary test it sometime the middle of February would be the first available time he could do it. I was mad to say the least I was sick of hurting and wanted this thing gone! I did not want a total hysterectomy either but I wanted it gone!
I finally decided to get a 2nd opinion and I encourage you too if you do not like this guy! I went to the Simon Cancer center in downtown indianapolis and saw a great surgeon but she was under the impression this would be benign and a simple removal possible bowel resections the tumor had grown larger than 8 cm (2.5 cm in less than a month increase) My odds were I would not have anything to worry about!
I worried myself sick and it is hard to tell you not too! I had my surgery and I elected for the devinci procedure which is robotic and I am glad I did it this way! I had my surgery on the 26th of January had a radical hysterectomy they took EVERYTHING including my cervix and all lymph nodes and the fat biopsy everything but my toes! I went home the next day and honestly the recovery has been great! I had little leaking from one of the 6 smaller incisions but hey it stopped. I actually went out for 5 hours on Saturday was worn out but felt good to get out. The worst day was the 4th but after that I have been getting better and better each day.
My situation is some what different in that my mass was solid but I did get my pathology back and it turned out to be fallopian tube cancer. I am glad I fought for what I wanted believe in yourself you know your body and if you cant get done what you want scream till you do! I was told many times by many doctorsit was nothing and made feel like I was crazy. I stood my ground and my doc was shocked at what she found. Go with your gut! Push them and if they wont listen find someone who will. I start my chemo the end of this month and my prognosis is good because I kept pushing it was fairly early! Go to this appointment be honest with them tell them about the black sludge period that is hugely important. Know what your pap smear results are current ones and they may do a culposcopy spelling sorry it is not fun but it can rule out issues in the endometrium of the uterus. I by no means am trying to scare you but if I had not listened to my gut and to my body and pushed I could have not found this in time! Good luck and hope to hear good news!
Wow......take a few deep breathes.....you have a lot going on and doing a lot of reading which is most likely scaring you half to death.
Ovarian do grow and just because they grow does not mean that they are malignant....most ovarian cysts, masses, etc are benign and would cause the same symptoms as a malignant mass.
Good for you, taking control of your body and going to see an GYN/Oncologist...no, I don't think that you have cancer, I am happy you are seeing an expert. A Gyn/Oncologlist has 3 years additional training and if there is the slightest chance is could be cancer, you want them doing the surgery. They also treat many benign conditions.
Usually cysts over 5-6cms are removed because they twist and cause issues....but, removing the cysts doesn't mean that you need to do a full hysterectomy.
Let us know what happens with the GYN/Oncologist today!!!!
Pam
Ovarian do grow and just because they grow does not mean that they are malignant....most ovarian cysts, masses, etc are benign and would cause the same symptoms as a malignant mass.
Good for you, taking control of your body and going to see an GYN/Oncologist...no, I don't think that you have cancer, I am happy you are seeing an expert. A Gyn/Oncologlist has 3 years additional training and if there is the slightest chance is could be cancer, you want them doing the surgery. They also treat many benign conditions.
Usually cysts over 5-6cms are removed because they twist and cause issues....but, removing the cysts doesn't mean that you need to do a full hysterectomy.
Let us know what happens with the GYN/Oncologist today!!!!
Pam
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