A little confused, please shed some light

BooNSamba

I'm not sure I'm posting this in the right place. My story started in Sept. 2010 with a trip to the ER w/ burning pain in right groin area. My blood and urine were okay. They diagnosed as urinary track infection. My tummy was a little bit bloated and hard though and the ER doc asked why it was hard. I told him the only thing I could think of was that I did a lot of isometric exercises and he said it could be muscle.I went away thinking I was okay.
The months went on and my tummy slowly got a bit bigger. I thought this was due to aging(I'm 39), not exercising enough, poor posture, poor diet, and even a digestive issue as I've been constipated for a good portion of my life.
I felt fine and I didn't too much of it until Christmastime this last year. I noticed I was getting more heartburn and indigestion. I then stopped drinking wine and tried to eat even better than I had been eating. My indigestion seemed to improve and went on with my daily life.
It wasn't until about a month or so ago that I knew something definitely wasn't right. My abdomen grew a lot bigger and I started developing pain. I went to doc's, he ordered a CT scan and I was diagnosed with a sizable abdominal mass that looked like it was benign due to it's shape and growth. I was given the best and worst(cancer) case scenarios by oncologist and what he would have to remove in each case. He said he thought the problem may be stemming from my one ovary.
My bloodwork was okay. I had surgery and they removed one of my ovaries and fall. tubes. They also precautionarily removed my appendix as a judgement call. They determined during the surgery that it was not cancer and on my discharge papers, "ovarian cyst" is listed as official cause.
Here's where I need the light.... Went to doc's today. He said the pathology is just a bit different than we originally thought. It's not cancer, but it was a tumor. It's something in between. The pathologists are vague about it. This means you will have to be monitored every 4-6 months. If you notice any changes or distention you must see us. He doesn't want me to wait as he thinks I had waited too long this time. He said every 4-6 mos. I will have a check-up, bloodwork, and CT scan if necessary, but there's a possibility it may never come back.
My questions are, "What does "in between" mean? And is this monitoring standard? What do I make of this?
I know there are so many suffering and I pray for them every day. My dad died of lung cancer(smoked 4ever), so I know how hard it is. I just feel frightened again and do not want to spend the next 4 mos. living in fear.
Thank you for your time.

granpatty

Hello BoonSamba!!! I had
Hello BoonSamba!!! I had ovarian cancer almost 3 years ago...You story is just like mine, at the beginning I was missdiagnosed and after 7 months they told me it was cancer...My abdomen was getting bigger and a lot of pain...Anyway, after surgery I had to check with my oncologyst every 3 to 4 months and ct scans every 6 months, so It seems your check-up and bloodwok is in the right direction, that's pretty standard to monitor your blood and your body, I am telling you this because your case is very similar to my case, but you can get a sencond opinion from another oncologyst!!! I wish you the best luck!!!

Tethys41

Borderline
Your doctor may be referring to a Borderline tumor. But it wouldn't be a bad idea to get a second opinion.

http://emedicine.medscape.com/article/1950573-overview

BooNSamba

Thanks! It's just a bit
Thanks! It's just a bit weird because he said point blank it wasn't cancer, but it's a tumor. I guess because they called it a mass at first and then a cyst and now a tumor. He was very vague himself. I was thinking about getting my records and getting a second opinion. It's like a roller coaster. I just don't want to live in fear for the next 4 mos.
I hope both of you are doing well.

mopar

KEEP FOLLOWING UP
That's the best advice I can give you. It is extraordinarily frustrating when you get conflicting opinions, and sometimes 'missed' opinions. Unfortunately, in our family we've had a great deal of this in the past year. Seems like no one is on the same page anymore.

Anyway, follow-ups are definitely warranted. Have they done a CA125 blood test? It's not definitive, but will be a good assessment tool to compare every few months.

I wish you well, and will pray that your fears will be calmed. This is a great place to come for support. Keep us informed!

Monika

BooNSamba

mopar said:

KEEP FOLLOWING UP
That's the best advice I can give you. It is extraordinarily frustrating when you get conflicting opinions, and sometimes 'missed' opinions. Unfortunately, in our family we've had a great deal of this in the past year. Seems like no one is on the same page anymore.

Anyway, follow-ups are definitely warranted. Have they done a CA125 blood test? It's not definitive, but will be a good assessment tool to compare every few months.

I wish you well, and will pray that your fears will be calmed. This is a great place to come for support. Keep us informed!

Monika

Thanks mopar! I love this
Thanks mopar! I love this supportive site .I will be visiting it more often. It's good to not feel alone. I did have the full panel bloodwork w/ all the cancers markers. My blood was okay.
Going out to dinner tonight with family. I wasn't going to go, but my fiance convinced me it would be good to get out and take my mind off of things. I'm almost two weeks out of surgery and just hope I can hold up physically as well as mentally. Don't feel like explaining and answering a whole bunch of questions and I hope I'm not a downer.
As I've said my grandfather and father died of lung cancer and I know the emotional rollercoaster it is. I pray with all my heart for everyone on these boards and I wish everyone well.

lauripiper

BooNSamba said:

Thanks mopar! I love this
Thanks mopar! I love this supportive site .I will be visiting it more often. It's good to not feel alone. I did have the full panel bloodwork w/ all the cancers markers. My blood was okay.
Going out to dinner tonight with family. I wasn't going to go, but my fiance convinced me it would be good to get out and take my mind off of things. I'm almost two weeks out of surgery and just hope I can hold up physically as well as mentally. Don't feel like explaining and answering a whole bunch of questions and I hope I'm not a downer.
As I've said my grandfather and father died of lung cancer and I know the emotional rollercoaster it is. I pray with all my heart for everyone on these boards and I wish everyone well.

Definitely get the 2nd
Definitely get the 2nd opinion. See a Gynecological Oncologist, they are the experts on ovarian cancer and see if they can have their lab re-test the tissue. If it is 'borderline' whatever that may mean, a 2nd look at the pathology by another lab may be able to clarify things. Get it done in a timely manner, ovarian cancer can be aggressive. And yes it sucks to be scared for nothing but if it's nothing then you'll be reassured by the 2nd opinion and if it is a cancer then better to know and start treatment.

bondalisha

2 years ago I had a 6 inch
2 years ago I had a 6 inch "mass" on my ovary. It was diagnosed as a "borderline" tumor and my ovary and fallopian tube were removed. My doctor refused to call it cancer, so I asked another surgeon who worked with my doctor... I asked her point blank "so is it cancer?" She said that yes, technically a bordeline tumor is cancer, but instead of being malignant or benign, it's kind of in between. It has many of the symptoms of malignant tumors, but is unlikely to spread to other organs and is easier to treat. Usually removal of the tumor is the only treatment needed, but you have to go in for a check-up exam every few months just to double check that it doesn't come back. (I had a check up every 3 months for the first two years after my surgery, but now I have finally been switched to once every 6 months). However, just because it's more likely to go away doesn't mean you shouldn't take it seriously. There is still about a 20% chance of recurrence, so go to every follow-up appointment!

pattysoo

confused
If it were me, I'd keep asking for clarification. Do you have the lab reports? You're entitled to them. Was the doctor a gyn/oncologist? If not, you might get more information from one as a second opinion. There also may be some clinical trials that are worth considering in your particular case. It sounds like your prognosis is good, but we who have O/C know how sneaky it can be and I believe strongly in being proactive on your own behalf until you're satisfied with the diagnosis.

BooNSamba

Thank you.
Yes, my doc is a Gynecological Oncologist. He said they got it out and there was no spillage, but I have to be monitored every 4-6 mos. and if I noticed anything unusual to make an appointment. He said there was no further treatment at this point. During surgery they ruled it benign, but then when it was sent out to a lab for further testing and he said they were vague about it and classified it as a tumor, calling it somewhere in between. I was considering sending out the results to a place such as John Hopkins to get evaluated. Has anyone ever done this? You know I will be making an appointment for that 4 month check-up. Thank you so much for your feedback and stories. It makes me feel better to know I am not alone.