Laparotomy vs Laparoscopic for initial surgery?

phoenix23

Hello,

I've been scheduled for surgery with my Gyno/Oncologist. I was wondering what all of your thoughts are having been through this, which surgery is 'best' for the first time? I have a Complex Mass on my right ovary, partially solid, partially fluid and have great concerns that it may be ruptured in laparoscopic surgery and potentially spill 'cancer' cells into my abdomen. Is this a valid concern?

I also have issues with my bottom right lung/diaphragm, liver area that need to be looked at and wondering how they would be able to thoroughly check those areas through laparoscopy? The recovery time from laparoscopy is a HUGE plus as I need to get back to work quickly, I just have concerns about them either spilling something or missing something with laparoscopic surgery instead....

Phoenix

poopergirl14052

Surgery
I had open surgery and was cut open from below ribs to peri area. Are you stage 3 ..? Is a gyn/onc doing your surgery?..I wish you a quick recovery and hope your surgery is successful. Sending hugs and prayers....Val

phoenix23

poopergirl14052 said:

Surgery
I had open surgery and was cut open from below ribs to peri area. Are you stage 3 ..? Is a gyn/onc doing your surgery?..I wish you a quick recovery and hope your surgery is successful. Sending hugs and prayers....Val

Hi Val, I haven't been
Hi Val,

I haven't been diagnosed yet... that's what I'm afraid of. I'm already having 'late stage' issues, (with liver/lung/diaphragm issues) that could possibly be separate, but also related to the mass on my ovary. The ovarian complex cyst has been there for years but because I am so young, 30, everyone dismissed it being anything 'serious' in nature, even though I come from a scary strong family history of Breast and Ovarian Cancer in my grandmother, mother and sister (all in their 30s at time of diagnosis) with 2 of them passing away because they were diagnosed too late... They want to do this initial surgery to check it out and I think my Gyno/Oncologist who is doing the surgery, still has hopes its just Endometriosis (which I've never been diagnosed with before). I don't want him to miss anything... this happened with my grandmother and by the time they figured it out, her abdomen was filled with tumors and she died within weeks. I have never ever had the super painful cramps everyone say they have when having endometriosis or the super heavy periods. My 'gut' tells me that is not the issue, my gut tells me its been a whispering slowly developing cancer for years that has been repeatedly misdiagnosed.

Whatever it is, I want it out! ALL OF IT! The first go round if its cancer.

Can I ask how long was your recovery from laparotomy? And were you diagnosed prior to surgery? Or did they biopsy it in surgery?


Thanks for your support!

Tethys41

phoenix23 said:

Hi Val, I haven't been
Hi Val,

I haven't been diagnosed yet... that's what I'm afraid of. I'm already having 'late stage' issues, (with liver/lung/diaphragm issues) that could possibly be separate, but also related to the mass on my ovary. The ovarian complex cyst has been there for years but because I am so young, 30, everyone dismissed it being anything 'serious' in nature, even though I come from a scary strong family history of Breast and Ovarian Cancer in my grandmother, mother and sister (all in their 30s at time of diagnosis) with 2 of them passing away because they were diagnosed too late... They want to do this initial surgery to check it out and I think my Gyno/Oncologist who is doing the surgery, still has hopes its just Endometriosis (which I've never been diagnosed with before). I don't want him to miss anything... this happened with my grandmother and by the time they figured it out, her abdomen was filled with tumors and she died within weeks. I have never ever had the super painful cramps everyone say they have when having endometriosis or the super heavy periods. My 'gut' tells me that is not the issue, my gut tells me its been a whispering slowly developing cancer for years that has been repeatedly misdiagnosed.

Whatever it is, I want it out! ALL OF IT! The first go round if its cancer.

Can I ask how long was your recovery from laparotomy? And were you diagnosed prior to surgery? Or did they biopsy it in surgery?


Thanks for your support!

Surgery
Do you know how big the mass on your ovary is? I had surgery for endometriosis ten years before a cancer diagnosis. They cyst back then was 9 cm, and too large for laproscopic surgery. I kind of sounds like the doctor assumes it is not cancer and he will be doing a surgery to address non-cancer issues. If he feels it is cancer, maybe he is going to do a second surgery. Perhaps a good question to ask him. Or maybe he will do a full debulking at the time, if he thinks it is cancer. When I had surgery for endometriosis. the gynecologist said he would have a gyn/onc standing by, if it looked like something cancerous. I was not diagnosed with endometriosis untill I was 39, although I did have the cramping and heavy periods. The recovery from that surgery was about 4 weeks. No one will know what you are dealing with until the surgery, although they were pretty sure what I had was cancer before I had the surgery for that.

anicca

Do you have a choice? I am
Do you have a choice? I am surprised that any gyn/onc would give you one. If there is a strong suspicion of OVCA, a laparotomy is vital. They do not just "look around". One thing that is important is to feel every inch of bowel for possible tumors, and that cannot be done laparoscopically. Of course there is much more that would be done in a laparotomy, such as taking samples of many different tissues for biopsy. This is essential to staging.

I was also concerned about recovery, especially as I am an independent contractor, and do not get paid if I don't work. I was able to resume work one month to the day after my surgery, and might have been back sooner if I had a desk job. If you are in good physical shape, recovery is really not that bad. The worst of it for me was the first week, because the IV antibiotics I had during surgery killed off all my GI flora, and I bloated up with horrible gas. As soon as I realized what the problem was, my husband went out and got me some great probiotics, which cleared up the gas within a few hours.

poopergirl14052

anicca said:

Do you have a choice? I am
Do you have a choice? I am surprised that any gyn/onc would give you one. If there is a strong suspicion of OVCA, a laparotomy is vital. They do not just "look around". One thing that is important is to feel every inch of bowel for possible tumors, and that cannot be done laparoscopically. Of course there is much more that would be done in a laparotomy, such as taking samples of many different tissues for biopsy. This is essential to staging.

I was also concerned about recovery, especially as I am an independent contractor, and do not get paid if I don't work. I was able to resume work one month to the day after my surgery, and might have been back sooner if I had a desk job. If you are in good physical shape, recovery is really not that bad. The worst of it for me was the first week, because the IV antibiotics I had during surgery killed off all my GI flora, and I bloated up with horrible gas. As soon as I realized what the problem was, my husband went out and got me some great probiotics, which cleared up the gas within a few hours.

My ct scan showed cancer
Before my surgery..I didn't have a lap oratory . I was staged after debulking and biopsy. Recovery for me was three months,,,started chemo two weeks after surgery..It is not an easy surgery, but I am still here.Did you have a blood test called ca-125?.this can give your Dr. Some idea if it is cancer..I pray it is not...val

phoenix23

anicca said:

Do you have a choice? I am
Do you have a choice? I am surprised that any gyn/onc would give you one. If there is a strong suspicion of OVCA, a laparotomy is vital. They do not just "look around". One thing that is important is to feel every inch of bowel for possible tumors, and that cannot be done laparoscopically. Of course there is much more that would be done in a laparotomy, such as taking samples of many different tissues for biopsy. This is essential to staging.

I was also concerned about recovery, especially as I am an independent contractor, and do not get paid if I don't work. I was able to resume work one month to the day after my surgery, and might have been back sooner if I had a desk job. If you are in good physical shape, recovery is really not that bad. The worst of it for me was the first week, because the IV antibiotics I had during surgery killed off all my GI flora, and I bloated up with horrible gas. As soon as I realized what the problem was, my husband went out and got me some great probiotics, which cleared up the gas within a few hours.

I honestly don't think my
I honestly don't think my doctors decided yet... he's waiting on more testing from me. They are having an Abdominal Ultrasound done to check my liver but I've been told that a CT is better for checking that for surface mets? As well as full panel blood work for hormones, DNA etc and another Trans Vag US to see what its looking like now prior to surgery. I just don't see how it can possibly be Endometriosis... wouldn't that have been seen clearly on my Trans Vag ultrasound as I had it just 4 day prior to my period?

I'm just overwhelmed I think and trying to figure out how to do this by myself, which I must. I don't have the option not to.

phoenix23

Tethys41 said:

Surgery
Do you know how big the mass on your ovary is? I had surgery for endometriosis ten years before a cancer diagnosis. They cyst back then was 9 cm, and too large for laproscopic surgery. I kind of sounds like the doctor assumes it is not cancer and he will be doing a surgery to address non-cancer issues. If he feels it is cancer, maybe he is going to do a second surgery. Perhaps a good question to ask him. Or maybe he will do a full debulking at the time, if he thinks it is cancer. When I had surgery for endometriosis. the gynecologist said he would have a gyn/onc standing by, if it looked like something cancerous. I was not diagnosed with endometriosis untill I was 39, although I did have the cramping and heavy periods. The recovery from that surgery was about 4 weeks. No one will know what you are dealing with until the surgery, although they were pretty sure what I had was cancer before I had the surgery for that.

The last they saw my mass a
The last they saw my mass a month ago, it was 2cm but bleeding into my abdomen. The surgeon first said "laparotomy is the standard for this kind of procedure...'' but upon seeing my eyes widen considerably, he said "we may be able to do laparoscopy... we'll see. If I get in there and it doesn't look good, I'll go ahead and take your ovary and we'll go from there... " I think he was trying to keep me calm as I was a bit of a mess, saying, "But I am young, I want to have children and I need to go back to work!" sort of rambling a bit. We concluded that visit with him sending me to two further Specialists so that he can get a 'better idea of what he'll be finding before he gets in there.' Were his parting words. He has said somewhere in the middle of the entire conversation that my symptoms sounded a lot like Endometriosis... but from everything I'm reading, OvCa and Endometriosis share very similar symptoms... to a point. My first Gyno I saw, actually 'laughed' and said he 'doubted very much that I would have Endometriosis so badly as to effect my lung, liver and diaphragm and have it never noticed before.... I don't feel like I have that issue either. I think he's hopeful that is what it is as I am so young... But he's also sending me to Genetic Counselor for extensive DNA testing as well as Endocrinologist as I have elevated Prolactin Levels giving false positive pregnancy tests.

And I guess what makes me so so nervous, was that they misdiagnosed my Grandmother when she was very young with this ( or rather THIS alone) and in removing her 'girl parts' left behind ovarian cancer cells that later consumed her abdomen and killed her within weeks of them figuring it out.

mopar

phoenix23 said:

I honestly don't think my
I honestly don't think my doctors decided yet... he's waiting on more testing from me. They are having an Abdominal Ultrasound done to check my liver but I've been told that a CT is better for checking that for surface mets? As well as full panel blood work for hormones, DNA etc and another Trans Vag US to see what its looking like now prior to surgery. I just don't see how it can possibly be Endometriosis... wouldn't that have been seen clearly on my Trans Vag ultrasound as I had it just 4 day prior to my period?

I'm just overwhelmed I think and trying to figure out how to do this by myself, which I must. I don't have the option not to.

DEAR PHOENIX
I know this is so overwhelming for you. But I would opt for the 'full surgery'. Generally, they don't give you an option. My first diagnosis was with the 'bikini cut'. At that time they did a complete hysterectomy, removed the omentum, and some lymph nodes, which is very important to do. My doctor was able to see most of the abdominal/pelvic area this way. My recurrance, a vertical incisioin was used, mainly because they can't use the same incision again. Either way, I would prefer this type of surgery because it is more thorough. And if they find even the slightest doubt of anything, I would imagine they would want to do a complete hysterectomy, given your family history. I know you are young, but it would be more beneficial for you to be absolutely sure than to leave anything behind as they did with your grandmother.

Hugs and Prayers to you, Phoenix. I'll be wating to here about your appointment.

Monika

anicca

mopar said:

DEAR PHOENIX
I know this is so overwhelming for you. But I would opt for the 'full surgery'. Generally, they don't give you an option. My first diagnosis was with the 'bikini cut'. At that time they did a complete hysterectomy, removed the omentum, and some lymph nodes, which is very important to do. My doctor was able to see most of the abdominal/pelvic area this way. My recurrance, a vertical incisioin was used, mainly because they can't use the same incision again. Either way, I would prefer this type of surgery because it is more thorough. And if they find even the slightest doubt of anything, I would imagine they would want to do a complete hysterectomy, given your family history. I know you are young, but it would be more beneficial for you to be absolutely sure than to leave anything behind as they did with your grandmother.

Hugs and Prayers to you, Phoenix. I'll be wating to here about your appointment.

Monika

Monika's post reminded me
Monika's post reminded me that initially, my doctor planned to go in through my old C-Section incision (bikini cut), but the morning of surgery, after he had seen the CT, he told me he would do a vertical cut, since it was clear the mass was ovarian. That was the only thing that upset me, because I thought muscles would be cut. I was quickly reassured that this only happened during emergencies, when there isn't time to retract the muscles.

Phoenix - when are you scheduled for surgery? DNA test results can take weeks.

Marnel

A very good question....
My doc insisted on using the Da Vinci robotic surgery method and completely removed my baseball sized tumor during the surgery via this method. However, when removing it, the fluid spilled into my pelvic cavity. The tumor tested positive for clear cell ovca so she then opened me up from stem to stern and lymph nodes removed, washing, etc. I'm not sure if I had been just opened up to begin with, she could have avoided the fluid spillage. It is a really good question and I didn't know enough to ask it in the beginning. You may want to ask tho'.

Good luck!

phoenix23

mopar said:

DEAR PHOENIX
I know this is so overwhelming for you. But I would opt for the 'full surgery'. Generally, they don't give you an option. My first diagnosis was with the 'bikini cut'. At that time they did a complete hysterectomy, removed the omentum, and some lymph nodes, which is very important to do. My doctor was able to see most of the abdominal/pelvic area this way. My recurrance, a vertical incisioin was used, mainly because they can't use the same incision again. Either way, I would prefer this type of surgery because it is more thorough. And if they find even the slightest doubt of anything, I would imagine they would want to do a complete hysterectomy, given your family history. I know you are young, but it would be more beneficial for you to be absolutely sure than to leave anything behind as they did with your grandmother.

Hugs and Prayers to you, Phoenix. I'll be wating to here about your appointment.

Monika

Oh wow... the thought of a
Oh wow... the thought of a complete hysterectomy at my age is absolutely terrifying... more so then being diagnosed with cancer. I have always always always wanted to be a mother, to give birth and have a child.

I haven't even started my life yet... not married, no children. Please know, I understand why you suggest this... why everyone seems to with this disease. I can understand, when you're older, that its a 'no brainer' to have it all removed when you've found the love of your life, married and/or have a child... you have everything to 'live' for at that point... but it is so very different for me. I want to live of course, but I also very much want my own family. The reality is, without a 'healthy' spouse, and with a strong family history of cancer, no one will allow me to adopt a child! Because "I could die" and the child would have to go through the process again... So having biological after cancer diagnosis (if that happens) will be my only option.

This is all so troubling... I wished I would have just had a baby sooner even without a husband! Argh!!

carolenk

Marnel said:

A very good question....
My doc insisted on using the Da Vinci robotic surgery method and completely removed my baseball sized tumor during the surgery via this method. However, when removing it, the fluid spilled into my pelvic cavity. The tumor tested positive for clear cell ovca so she then opened me up from stem to stern and lymph nodes removed, washing, etc. I'm not sure if I had been just opened up to begin with, she could have avoided the fluid spillage. It is a really good question and I didn't know enough to ask it in the beginning. You may want to ask tho'.

Good luck!

Phoenix: I think there was someone who posted on this board who DID adopt after OVCA diagnosis.

Anicca: my acupuncturist said a vertical incision only interfered with one meridian whereas, the bikini incision interfered with multiple meridians.

Finally, if I were in your shoes, Phoenix, I would go for the laparotomy.

anicca

carolenk said:

Phoenix: I think there was someone who posted on this board who DID adopt after OVCA diagnosis.

Anicca: my acupuncturist said a vertical incision only interfered with one meridian whereas, the bikini incision interfered with multiple meridians.

Finally, if I were in your shoes, Phoenix, I would go for the laparotomy.

Carolnk: I'm not a fan of
Carolnk: I'm not a fan of accupuncture, but it's moot for me, as now I've been fortunate enough to have both incisions I will say, though, that after the bikini cut, I had areas of permanent numbness on my abdomen, and that did not happen with the vertical cut. Wouldn't it be nice if those were our only worries?

wooh_girl

Hi phoenix,
I've been
Hi phoenix,

I've been reading these boards since I was diagnosed, which will be two years next month, but I've never posted before. I was 27 when we found a complex mass on my left ovary after I landed in the ER for something unrelated. My gyn thought they could remove it, but also suggested having a gyn onc on call, in case it was worse than they initially thought. I'm an oncology nurse, though, so I asked for some opinions from colleagues and had it removed by an awesome gyn surgical oncologist. We were all hoping it would be endometriosis, but the intraop path showed otherwise.

The mass was too big to be removed via laparoscopy, as breaking the tumor apart likely would have caused the cells to migrate. I have a 10 inch vertical incision down my abdomen, but they were able to do a fertility sparing procedure since I was so young. They removed my left ovary and fallopian tube, part of my right ovary (there was another small tumor there that didn't show up on imaging), my omentum, and did a de-bulking. After much discussion after my final path came back, they decided not to go back and do a total hysterectomy. Because my tumor was so slow growing (we originally thought it was borderline, then found that it was partially low-grade), I ended up not doing chemo and am monitored every three months by my medical oncologist and surgeon. I was also able to freeze my eggs, in case I do need to have a hysterectomy or chemo in the future. Sometimes I wonder if my treatment was too risky, but I think we did what was best for me at this point in my life. And so far, so good (I'm almost afraid to even say it)!

Anyway, I just wanted you to know that there are a lot of options out there, depending on your particular pathology and situation. And if you have to have a laparotomy, it's rough, but not the end of the world. I hope you find some good answers.

carolenk

wooh_girl said:

Hi phoenix,
I've been
Hi phoenix,

I've been reading these boards since I was diagnosed, which will be two years next month, but I've never posted before. I was 27 when we found a complex mass on my left ovary after I landed in the ER for something unrelated. My gyn thought they could remove it, but also suggested having a gyn onc on call, in case it was worse than they initially thought. I'm an oncology nurse, though, so I asked for some opinions from colleagues and had it removed by an awesome gyn surgical oncologist. We were all hoping it would be endometriosis, but the intraop path showed otherwise.

The mass was too big to be removed via laparoscopy, as breaking the tumor apart likely would have caused the cells to migrate. I have a 10 inch vertical incision down my abdomen, but they were able to do a fertility sparing procedure since I was so young. They removed my left ovary and fallopian tube, part of my right ovary (there was another small tumor there that didn't show up on imaging), my omentum, and did a de-bulking. After much discussion after my final path came back, they decided not to go back and do a total hysterectomy. Because my tumor was so slow growing (we originally thought it was borderline, then found that it was partially low-grade), I ended up not doing chemo and am monitored every three months by my medical oncologist and surgeon. I was also able to freeze my eggs, in case I do need to have a hysterectomy or chemo in the future. Sometimes I wonder if my treatment was too risky, but I think we did what was best for me at this point in my life. And so far, so good (I'm almost afraid to even say it)!

Anyway, I just wanted you to know that there are a lot of options out there, depending on your particular pathology and situation. And if you have to have a laparotomy, it's rough, but not the end of the world. I hope you find some good answers.

What an an interesting story!
Thank you for "coming out of the woodwork" wooh_girl. I dont believe anyone has ever posted such a history as yours on this discussion board before.
Where else could phoenix have gotten such valuable information?

I hope I'm still around to read about your healthy baby in the future. Have you thought about just getting a sperm donor & going for it? I know that's a very personal question & I totally understand if you prefer not to share such private information.

Again, thanks for sharing.

phoenix23

wooh_girl said:

Hi phoenix,
I've been
Hi phoenix,

I've been reading these boards since I was diagnosed, which will be two years next month, but I've never posted before. I was 27 when we found a complex mass on my left ovary after I landed in the ER for something unrelated. My gyn thought they could remove it, but also suggested having a gyn onc on call, in case it was worse than they initially thought. I'm an oncology nurse, though, so I asked for some opinions from colleagues and had it removed by an awesome gyn surgical oncologist. We were all hoping it would be endometriosis, but the intraop path showed otherwise.

The mass was too big to be removed via laparoscopy, as breaking the tumor apart likely would have caused the cells to migrate. I have a 10 inch vertical incision down my abdomen, but they were able to do a fertility sparing procedure since I was so young. They removed my left ovary and fallopian tube, part of my right ovary (there was another small tumor there that didn't show up on imaging), my omentum, and did a de-bulking. After much discussion after my final path came back, they decided not to go back and do a total hysterectomy. Because my tumor was so slow growing (we originally thought it was borderline, then found that it was partially low-grade), I ended up not doing chemo and am monitored every three months by my medical oncologist and surgeon. I was also able to freeze my eggs, in case I do need to have a hysterectomy or chemo in the future. Sometimes I wonder if my treatment was too risky, but I think we did what was best for me at this point in my life. And so far, so good (I'm almost afraid to even say it)!

Anyway, I just wanted you to know that there are a lot of options out there, depending on your particular pathology and situation. And if you have to have a laparotomy, it's rough, but not the end of the world. I hope you find some good answers.

Thank you for coming forward!
Dearest Wooh_girl, (I've only ever heard that once before in my life and ironically from my boss...)

Thank you for coming forward and sharing this story! It has uplifted my heart! If I must go down this terrible path, I hope it turns out as 'well' as yours! I feel like I will make the same decision if possible as you've made, because it is what will be 'right' for me. To spare as much of my fertility as possible for as long a possible! We must be approximately the same age if you were diagnosed at 27 and its been 2 years (now that DOES get a WOOH HOO!) I don't care about the scar of a laparotomy, its the down time I'm afraid of. I have A LOT going on the next couple of months and really can't afford to miss that much work (I know, I know I can't afford NOT TO with my health and I WILL if I must...just panic a little at the idea....you know, losing the health insurance that is going to pay for all this 'stuff.' )

Please stay out of the woodwork I am so every glad you stepped out!

BIG hugs! Thank you!


And carol, I know you were speaking to Wooh_girl about the baby and I too am excited to some day hear of a healthy baby from her... But I also will answer that question...since going through this and having the 'what ifs' I have decided that I will DEFINITELY NOT WAIT on Mr. Right to show up anymore to have that baby! I'm going to be 31 and with staring down a possibility of losing that ability to have a baby for the rest of my life... I'll definitely be searching for a Donor and just going for it! Life is too short! And there will NEVER be a perfect time to have a baby. I just pray to God I still have time to do it! I'm thinking...someone who looks like the actor Ryan Reynolds... what a cutie! Why not, right? I might as well really go for it if I'm going for it!

wooh_girl

phoenix23 said:

Thank you for coming forward!
Dearest Wooh_girl, (I've only ever heard that once before in my life and ironically from my boss...)

Thank you for coming forward and sharing this story! It has uplifted my heart! If I must go down this terrible path, I hope it turns out as 'well' as yours! I feel like I will make the same decision if possible as you've made, because it is what will be 'right' for me. To spare as much of my fertility as possible for as long a possible! We must be approximately the same age if you were diagnosed at 27 and its been 2 years (now that DOES get a WOOH HOO!) I don't care about the scar of a laparotomy, its the down time I'm afraid of. I have A LOT going on the next couple of months and really can't afford to miss that much work (I know, I know I can't afford NOT TO with my health and I WILL if I must...just panic a little at the idea....you know, losing the health insurance that is going to pay for all this 'stuff.' )

Please stay out of the woodwork I am so every glad you stepped out!

BIG hugs! Thank you!


And carol, I know you were speaking to Wooh_girl about the baby and I too am excited to some day hear of a healthy baby from her... But I also will answer that question...since going through this and having the 'what ifs' I have decided that I will DEFINITELY NOT WAIT on Mr. Right to show up anymore to have that baby! I'm going to be 31 and with staring down a possibility of losing that ability to have a baby for the rest of my life... I'll definitely be searching for a Donor and just going for it! Life is too short! And there will NEVER be a perfect time to have a baby. I just pray to God I still have time to do it! I'm thinking...someone who looks like the actor Ryan Reynolds... what a cutie! Why not, right? I might as well really go for it if I'm going for it!

Thank you both for your kind
Thank you both for your kind words, I will definitely be sticking around now that I'm here. I've gotten a lot of comfort from reading the last couple of years, so I'm glad I can offer some hope this time.

I have thought about going ahead and having a baby myself, but I'm not so sure I'm ready for it. I was actually in a relationship when I froze the eggs, so I was hoping that they would be more of an insurance policy. I also worry about what would happen if I have a recurrence and something happens to me...my best friend and her husband have offered to be there if that ever became the situation. Lots to think about, but I'm still optimistic that I'll get to do it the old fashioned way! My surgeon also says that it will be harder to monitor me when I'm pregnant and that my CA125 will spike, so I'm taking it slow for now.

Phoenix, I was actually out of work for three months after my laparotomy (but my job is pretty physical - I know some of the ladies were back well before that), but even though I wasn't earning a paycheck, my job paid my health insurance while I was on leave and I paid them back the lump sum from my first paycheck when I came back. Maybe that's something your employer would be willing to do, as well? And FYI, if it is an option, freezing your eggs is not covered by insurance (nor is the yearly fee to store them), but there is aid available from the Livestrong foundation. But if you can find that Ryan Reynolds look alike, it would certainly be worth it!

I've had some ups and downs with scans and CA125s, but as my medical oncologist puts it, we're just going to keep on keeping on for now...I hope you have the same luck that I have! I can't remember where you said that you were located, but I'd be happy to message you my surgeon's information if you'd like it.

lulu1010

wooh_girl said:

Thank you both for your kind
Thank you both for your kind words, I will definitely be sticking around now that I'm here. I've gotten a lot of comfort from reading the last couple of years, so I'm glad I can offer some hope this time.

I have thought about going ahead and having a baby myself, but I'm not so sure I'm ready for it. I was actually in a relationship when I froze the eggs, so I was hoping that they would be more of an insurance policy. I also worry about what would happen if I have a recurrence and something happens to me...my best friend and her husband have offered to be there if that ever became the situation. Lots to think about, but I'm still optimistic that I'll get to do it the old fashioned way! My surgeon also says that it will be harder to monitor me when I'm pregnant and that my CA125 will spike, so I'm taking it slow for now.

Phoenix, I was actually out of work for three months after my laparotomy (but my job is pretty physical - I know some of the ladies were back well before that), but even though I wasn't earning a paycheck, my job paid my health insurance while I was on leave and I paid them back the lump sum from my first paycheck when I came back. Maybe that's something your employer would be willing to do, as well? And FYI, if it is an option, freezing your eggs is not covered by insurance (nor is the yearly fee to store them), but there is aid available from the Livestrong foundation. But if you can find that Ryan Reynolds look alike, it would certainly be worth it!

I've had some ups and downs with scans and CA125s, but as my medical oncologist puts it, we're just going to keep on keeping on for now...I hope you have the same luck that I have! I can't remember where you said that you were located, but I'd be happy to message you my surgeon's information if you'd like it.

Yesterday I asked the Dr about this!
Of course every situation is different but I was diagnosed with Primary Peritoneal Cancer 2 years ago. It was like sand over the abdomen but it came from an ovarian cell so they treat it as ovarian cancer. I had only one small mass that was like 2cm. I had been having problems for a year when I was diagnosed and was quite ill. Because of a biopsy of the mass near the colon they knew it was cancer so I opted to have chemo first before surgery. That went well and then I had the robotic surgery. They were able to biopsy the lymph nodes and remove the ovaries and my omentum was already gone. He had the option to open me up when he got in there if needed. He did not feel he needed to. The chemo had killed most of the cancer and he removed the small mass that was left.
So I finished chemo and had a 9 mos. remission but then the beast was back but small and not on any organs. I am on chemo again and doing well. In the back of my mind, I was wondering if it would have been better to have the laparotomy. So yesterday I asked the Dr (at Cleveland Clinic) if he could see as well with the scope as with the laparotomy and he said he could see better with the scope because it magnifies it. He said it is the cells that you cant see that cause the reoccurance. They cant be seen with either surgery. I felt better but I know it is not the best for every situation.
My mother died of breast cancer so I had the genetic testing. I am positive for BRCA 2 mutation. I have daughters that are 29 and 34 so I know where you are coming from. Neither of them are married or have children yet either. You can imagine how freaked out we all were for them to be tested. Fortunately they are both negative. We had talked of freezing eggs if the situation came up. The good news about being positive is that chemo seems to work better for those with the mutation so I have had great luck with it so far.
My advice to you is to make sure you stress how important the fertility issue is to you so they just dont assume anything. Have a big discussion with the doctor and make sure you are all on the same page.

phoenix23

lulu1010 said:

Yesterday I asked the Dr about this!
Of course every situation is different but I was diagnosed with Primary Peritoneal Cancer 2 years ago. It was like sand over the abdomen but it came from an ovarian cell so they treat it as ovarian cancer. I had only one small mass that was like 2cm. I had been having problems for a year when I was diagnosed and was quite ill. Because of a biopsy of the mass near the colon they knew it was cancer so I opted to have chemo first before surgery. That went well and then I had the robotic surgery. They were able to biopsy the lymph nodes and remove the ovaries and my omentum was already gone. He had the option to open me up when he got in there if needed. He did not feel he needed to. The chemo had killed most of the cancer and he removed the small mass that was left.
So I finished chemo and had a 9 mos. remission but then the beast was back but small and not on any organs. I am on chemo again and doing well. In the back of my mind, I was wondering if it would have been better to have the laparotomy. So yesterday I asked the Dr (at Cleveland Clinic) if he could see as well with the scope as with the laparotomy and he said he could see better with the scope because it magnifies it. He said it is the cells that you cant see that cause the reoccurance. They cant be seen with either surgery. I felt better but I know it is not the best for every situation.
My mother died of breast cancer so I had the genetic testing. I am positive for BRCA 2 mutation. I have daughters that are 29 and 34 so I know where you are coming from. Neither of them are married or have children yet either. You can imagine how freaked out we all were for them to be tested. Fortunately they are both negative. We had talked of freezing eggs if the situation came up. The good news about being positive is that chemo seems to work better for those with the mutation so I have had great luck with it so far.
My advice to you is to make sure you stress how important the fertility issue is to you so they just dont assume anything. Have a big discussion with the doctor and make sure you are all on the same page.

Hi Lulu,
Thank you for this
Hi Lulu,

Thank you for this information. Its all so very overwhelming and confusing. I find it interesting what you say about your Genetic Testing. I am presently confused about that. The Oncologist told me that it matters not that my sister did not test positive for the BRCA gene, they could have missed it and that I should get tested anyway. He sent me to a Genetic Counselor who said that because my sister tested negative, I did NOT need to be tested. But upon hearing my family history said that we may have one of the very 'RARE' forms of mutation on our genes that can sometimes be found on the other, lesser known but more advanced test, called BART. The BRCAnalysis Rearrangement Test, which can find the more rare mutations. Her Oncologist said she doesn't need it, mine says we do... I'm so lost.

I feel as though time is currently standing still and I'm staring down the double barrel of a gun in the limbo. I need a hug Going through this alone is starting to eat at me. I dont' know if its stress or crazed hormones, but I'm snappy, have little patience, cry at the drop of a hat and generally dislike this version of 'me.' Not only do I feel terrible inside, I am acting terrible or at least, I think so. I'm normally the one who comforts, makes people smile, looks at the 'glass half full' scenarios.

I keep having dreams that I'm going to die and I'm being prepared for that in some way. It's unsettling to say the least. I also keep seeing/hearing 'signs' in the universe about Ovarian Cancer... from sitting in traffic wondering if what's going on inside me is cancer and someone with a Teal Ribbon car magnet pulls in front of me and stops at the light so I can clearly read, "Ovarian Cancer Awareness" --- ( I mean, how often do you see those ribbons??? And especially when I was thinking about it) I felt as though I was being told to "Pay attention!" And then later in the day, a television show I was watching, his wife died from Ovarian Cancer, I changed the channel and I kid you not, the next two shows also contain someone either dying or being diagnosed with this disease! Then someone I happened to be speaking with at a holiday party just randomly tells me that their relative was recently diagnosed with it... I feel like I am being told something but I just don't know what!!! I think it comes from feeling something 'off' for years and being told its 'nothing of concern' so I have constantly tried to ignore this inner 6th sense something isn't right.

I just want to know, one way or the other and the end of the month when they finally get around to biopsy can't come soon enough.

phoenix23

wooh_girl said:

Thank you both for your kind
Thank you both for your kind words, I will definitely be sticking around now that I'm here. I've gotten a lot of comfort from reading the last couple of years, so I'm glad I can offer some hope this time.

I have thought about going ahead and having a baby myself, but I'm not so sure I'm ready for it. I was actually in a relationship when I froze the eggs, so I was hoping that they would be more of an insurance policy. I also worry about what would happen if I have a recurrence and something happens to me...my best friend and her husband have offered to be there if that ever became the situation. Lots to think about, but I'm still optimistic that I'll get to do it the old fashioned way! My surgeon also says that it will be harder to monitor me when I'm pregnant and that my CA125 will spike, so I'm taking it slow for now.

Phoenix, I was actually out of work for three months after my laparotomy (but my job is pretty physical - I know some of the ladies were back well before that), but even though I wasn't earning a paycheck, my job paid my health insurance while I was on leave and I paid them back the lump sum from my first paycheck when I came back. Maybe that's something your employer would be willing to do, as well? And FYI, if it is an option, freezing your eggs is not covered by insurance (nor is the yearly fee to store them), but there is aid available from the Livestrong foundation. But if you can find that Ryan Reynolds look alike, it would certainly be worth it!

I've had some ups and downs with scans and CA125s, but as my medical oncologist puts it, we're just going to keep on keeping on for now...I hope you have the same luck that I have! I can't remember where you said that you were located, but I'd be happy to message you my surgeon's information if you'd like it.

Wooh_girl So glad to hear you'll be
So glad to hear you'll be sticking around. I've enjoyed reading your posts and they are quite informative. Did your doctors expect anything when they first tested your CA125? My oncologist said that it would be good to know only as a 'base' number for my future, but being that I am 'so young' it likely wouldn't be a 'good' diagnostic tool as it can be falsely low or high... Did you ever hear anything like this? Or have people look at you skeptical of cancer because of your age?


As for the job thing, I have a very physical job too with lots of movement and heavy lifting, etc. I'm pretty sure that I'd be 'let go' if I were to have the surgery and take that much time off. I'm already so exhausted it takes all that I am to get through the day...like bone tired.

I'd love to freeze eggs if that will still be an option. I live on the East Coast.