Further treatment after hysterectomy?

jacyone

Hello, this is my first post here! Within the past two weeks I saw a surgeon for suddenly worsened pain for what I thought was a hernia I'd had for over a year, had a CT scan, and learned that it was not a hernia but a large pelvic mass. Two days later I saw a GYN oncologist who said that it was a fibroid, ovarian though he couldn't determine which ovary due to it's size (small cantaloupe), and was probably benign, though again he couldn't be certain until he got in there. Four days later I had surgery to remove this pelvic mass and ended up with a radical hysterectomy when said mass turned out to be malignant.

I talked to the GYN/onc a couple of times in the hospital following the surgery but to be honest, I just wasn't expecting cancer at all so had no idea what to ask or what might come next. I do know that it was one large tumor, it was on my right ovary, it was intact, and it didn't appear to have spread anywhere else but he removed everything just to be safe and because not to would have been "malpractice" (his words, not mine). I see him next Tuesday for follow-up, to remove the staples from my incision (he had to cut me vertically...turns out the mass was closer to the size of a Nerf football and it was too large to remove and keep it intact through a horizontal incision), and to learn the results of the pathologist's report and discuss further treatment if necessary, etc.

This morning is the first time I've really had a chance to do any research on ovarian cancer and of course, I'm now scared to death and have a billion questions. Until now, I've just assumed that as long as he got everything during surgery last week and it hadn't spread anywhere else, that was it and we were done! Now I'm not so sure. Is further treatment (chemo) advisable even if the tumor has been removed and there's no other signs of cancer cells? Can ovarian cancer reoccur when your ovaries (and all other reproductive organs) have been removed?

Of course I will ask my surgeon these questions when I see him but I'm going to go crazy over the next four days not knowing anything one way or the other and would really appreciate hearing stories from others that have had similar experiences?

Thank you,
Judy in VA

kathryn1

Judy
Hi,
I'm sorry you have to go thru all this. It is scarey! It's very good your tumor was intact and hadn't spread!
My surgeon removed everything that she could see or even looked funny. She say's chemo is my insurance policy for anything microscopic she couldn't see. This cancer can reoccur in other parts of the body. It needs aggressive treatment in my opinion!
This is a great site for questions and a wonderful group of ladies !!!!!!
Good luck to you and keep us posted.
You'll be in my prayers, Kathryn

Unknown

This comment has been removed by the Moderator

saundra

Welcome and ask all you want
Dear Judy, that was a shock to your system in many ways and I have a few hints you might want to consider.
My oncologist told me that when a woman ovulates over the years the process of the egg bursting from the ovary takes some ovarian cells with it and they scatter over the abdomen and some attach to other organs and lay dormant but live. That seemed to explain why my cancer was many small tumors all over the abdomen and liver and spleen and colon. If they think you should have chemo, then do it. I think you having one large intact tumor will turn out to be a good sign but you need to ask all the questions you have on your next visit. Write them down and take someone with you to write down the answers. Your brain goes haywire with this diagnosis processing so much information at once.

We are here to offer support and share our experiences. It doesn't mean we all have the same experiences but we all have the understanding of the complete shock this diagnosis does to all systems.

We care about each other. Saundra

jacyone

saundra said:

Welcome and ask all you want
Dear Judy, that was a shock to your system in many ways and I have a few hints you might want to consider.
My oncologist told me that when a woman ovulates over the years the process of the egg bursting from the ovary takes some ovarian cells with it and they scatter over the abdomen and some attach to other organs and lay dormant but live. That seemed to explain why my cancer was many small tumors all over the abdomen and liver and spleen and colon. If they think you should have chemo, then do it. I think you having one large intact tumor will turn out to be a good sign but you need to ask all the questions you have on your next visit. Write them down and take someone with you to write down the answers. Your brain goes haywire with this diagnosis processing so much information at once.

We are here to offer support and share our experiences. It doesn't mean we all have the same experiences but we all have the understanding of the complete shock this diagnosis does to all systems.

We care about each other. Saundra

Thank you
Thank you all for your responses. Oddly enough, I feel better now at least having some idea of what may be next. I don't feel as good as I did a couple of days ago, when I thought that as long as the surgery had removed all the cancer that I was cured! But I feel better than not knowing anything and imagining the worst. The unknown is always the scariest I guess?

I've been writing down all of my questions and have asked my sister to accompany my husband and me to my appt. on Tuesday. She has a lot of experience with this type of thing, though not cancer specifically, as she raised a chronically ill son who eventually passed away at age 18. I swear we spent almost as much time in hospitals/doctor's offices with that child as we did out of them!

Thank you also for your prayers and positive thoughts, that means a lot to me! I'm really struggling right now with the thought of dying and leaving my children. I know that all parents with cancer go through this but I have an almost 11-year-old son who is profoundly autistic so he really depends on me and his daddy. The joke among the parents in the autism community is that we can never die. Because then who will take care of our kids? So you see, I really can't die...

Judy in VA

LPack

does happen
Judy,

I have a friend who had ovarian cancer. Several years after having a hysterectomy no cancer then! She is now a 4 or 5 year survivor and was staged at 2. She also had chemo and was very sick.

Amazing our bodies!!!

In His Grip,
Libby

Hissy_Fitz

LPack said:

does happen
Judy,

I have a friend who had ovarian cancer. Several years after having a hysterectomy no cancer then! She is now a 4 or 5 year survivor and was staged at 2. She also had chemo and was very sick.

Amazing our bodies!!!

In His Grip,
Libby

I am new, too!
Judy......

I know exactly how you feel. My life changed totally in a matter of 8 days. On a Monday, I went to see my PCP, even thought my symptoms were pretty vague and perhaps even silly. I had tested negative (twice) for a UTI, yet still had urinary urgency. In addition, I had had an on-again-off-again ache in the middle of my sternum for about a week that had become more "on" than "off". He thought it was probably my gall bladder.

On Tuesday, I had an ultrasound of my pelvis and abdomen. And while we waited for the radiologist report, I had a functionality test on Wednesday for my gall bladder. Wednesday evening my PCP called me and told me that I appeared to have ovarian cancer.

The Ob/Gyn Oncologist couldn't see me until early the next week. I spent a horrible weekend - scared and crying all the time. The more I read about ovarian cancer, the more certain I was that I would die within 5 years, at best.

I had a CT scan this past Wednesday and it showed a softball size tumor, lots of ascites, enlarged lymph nodes, and caking of the omentum. Not a good thing.

By Thursday, the pain was no longer controllable with Vicodin and I had 3 liters of fluid drawn off my belly. Huge relief.

Friday (yesterday) I found out that my CA 125 was 4,000 - again, a very bad sign.

My surgery is scheduled for next Tuesday, the 29th. Initially I was hoping for a stage 2, but it's looking more and more like mine will be stage 3 or 4.

I have 4 grown children. They watched their dad die of cancer and I feel so bad about putting them thru this again. I am much, much more concerned about them than I am about myself. I am a Christian and heaven is my goal and my ultimate home, but I do not want to leave my children and grandchildren. I cry a LOT. But if I don't fight, I have no chance of living. None. So I am girding my loins, as the ancients used to say, for the biggest fight of my life.

My middle son has always said that his mom can move mountains. I am praying he is right.

Unknown

Hissy_Fitz said:

I am new, too!
Judy......

I know exactly how you feel. My life changed totally in a matter of 8 days. On a Monday, I went to see my PCP, even thought my symptoms were pretty vague and perhaps even silly. I had tested negative (twice) for a UTI, yet still had urinary urgency. In addition, I had had an on-again-off-again ache in the middle of my sternum for about a week that had become more "on" than "off". He thought it was probably my gall bladder.

On Tuesday, I had an ultrasound of my pelvis and abdomen. And while we waited for the radiologist report, I had a functionality test on Wednesday for my gall bladder. Wednesday evening my PCP called me and told me that I appeared to have ovarian cancer.

The Ob/Gyn Oncologist couldn't see me until early the next week. I spent a horrible weekend - scared and crying all the time. The more I read about ovarian cancer, the more certain I was that I would die within 5 years, at best.

I had a CT scan this past Wednesday and it showed a softball size tumor, lots of ascites, enlarged lymph nodes, and caking of the omentum. Not a good thing.

By Thursday, the pain was no longer controllable with Vicodin and I had 3 liters of fluid drawn off my belly. Huge relief.

Friday (yesterday) I found out that my CA 125 was 4,000 - again, a very bad sign.

My surgery is scheduled for next Tuesday, the 29th. Initially I was hoping for a stage 2, but it's looking more and more like mine will be stage 3 or 4.

I have 4 grown children. They watched their dad die of cancer and I feel so bad about putting them thru this again. I am much, much more concerned about them than I am about myself. I am a Christian and heaven is my goal and my ultimate home, but I do not want to leave my children and grandchildren. I cry a LOT. But if I don't fight, I have no chance of living. None. So I am girding my loins, as the ancients used to say, for the biggest fight of my life.

My middle son has always said that his mom can move mountains. I am praying he is right.

This comment has been removed by the Moderator

jacyone

Hissy_Fitz said:

I am new, too!
Judy......

I know exactly how you feel. My life changed totally in a matter of 8 days. On a Monday, I went to see my PCP, even thought my symptoms were pretty vague and perhaps even silly. I had tested negative (twice) for a UTI, yet still had urinary urgency. In addition, I had had an on-again-off-again ache in the middle of my sternum for about a week that had become more "on" than "off". He thought it was probably my gall bladder.

On Tuesday, I had an ultrasound of my pelvis and abdomen. And while we waited for the radiologist report, I had a functionality test on Wednesday for my gall bladder. Wednesday evening my PCP called me and told me that I appeared to have ovarian cancer.

The Ob/Gyn Oncologist couldn't see me until early the next week. I spent a horrible weekend - scared and crying all the time. The more I read about ovarian cancer, the more certain I was that I would die within 5 years, at best.

I had a CT scan this past Wednesday and it showed a softball size tumor, lots of ascites, enlarged lymph nodes, and caking of the omentum. Not a good thing.

By Thursday, the pain was no longer controllable with Vicodin and I had 3 liters of fluid drawn off my belly. Huge relief.

Friday (yesterday) I found out that my CA 125 was 4,000 - again, a very bad sign.

My surgery is scheduled for next Tuesday, the 29th. Initially I was hoping for a stage 2, but it's looking more and more like mine will be stage 3 or 4.

I have 4 grown children. They watched their dad die of cancer and I feel so bad about putting them thru this again. I am much, much more concerned about them than I am about myself. I am a Christian and heaven is my goal and my ultimate home, but I do not want to leave my children and grandchildren. I cry a LOT. But if I don't fight, I have no chance of living. None. So I am girding my loins, as the ancients used to say, for the biggest fight of my life.

My middle son has always said that his mom can move mountains. I am praying he is right.

Follow-up
I saw the oncologist yesterday, had the staples removed (24 of those things!), and learned the results of the pathologist's report and the all important question, "What next?".

The news was great. I had a Sertoli-Leydig tumor, which is pretty rare apparently, occurring in less than .5% of ovarian cancers. It was contained within the ovary and everything else tested clean. So staged at 1a with with the only niggling, less-than-ideal result being that the cells were "poorly differentiated", grade 3. But the oncologist was explaining about that not being the same in stromal tumors and as long as it wasn't "retiform" (grade 4), he was optimistic.

He recommended no further treatment at this time. I told him that I wanted to treat this aggressively and if that meant chemo just to be safe, then I was prepared to do that but he felt it wouldn't accomplish anything at this point except make me sick and make my hair fall out.

I haven't been able to find a ton of information on this type of cancer but from what the dr. told me and what I've researched so far, the recurrence rate is comparatively low, less than 10%, but when it does recur, it's most often within the first year. If it does recur, he said they usually treat it with surgery again rather than chemo since they haven't found a chemo that it responds well too yet.

So I'll be followed closely with an appt/exam in three months and one in six months with another CT scan at that time, and so on. I feel incredibly relieved and fortunate and grateful and blessed and a bit in shock, to be honest. I'm not completely out of the woods and of course nothing is guaranteed, but at least I feel like I have a fighting chance at being around to see my boys grow up now. And for right now, that is more than enough!!

Y'all have been in my thoughts and prayers often during the past few days, especially Carlene yesterday as she underwent her surgery. I've read through old and current discussions, learned some of your stories, marveled at what you've been through and how fiercely you continue to fight. I will continue to check in here to provide moral support and positive thoughts if nothing else. If anybody has had this type of cancer, I would welcome the opportunity to communicate with you directly or just to learn more if there are any resources you can point me towards? Thank you all for being there for me and supporting me when I desperately needed it. I cannot express how much it helped.

Love,
Judy

saundra

jacyone said:

Follow-up
I saw the oncologist yesterday, had the staples removed (24 of those things!), and learned the results of the pathologist's report and the all important question, "What next?".

The news was great. I had a Sertoli-Leydig tumor, which is pretty rare apparently, occurring in less than .5% of ovarian cancers. It was contained within the ovary and everything else tested clean. So staged at 1a with with the only niggling, less-than-ideal result being that the cells were "poorly differentiated", grade 3. But the oncologist was explaining about that not being the same in stromal tumors and as long as it wasn't "retiform" (grade 4), he was optimistic.

He recommended no further treatment at this time. I told him that I wanted to treat this aggressively and if that meant chemo just to be safe, then I was prepared to do that but he felt it wouldn't accomplish anything at this point except make me sick and make my hair fall out.

I haven't been able to find a ton of information on this type of cancer but from what the dr. told me and what I've researched so far, the recurrence rate is comparatively low, less than 10%, but when it does recur, it's most often within the first year. If it does recur, he said they usually treat it with surgery again rather than chemo since they haven't found a chemo that it responds well too yet.

So I'll be followed closely with an appt/exam in three months and one in six months with another CT scan at that time, and so on. I feel incredibly relieved and fortunate and grateful and blessed and a bit in shock, to be honest. I'm not completely out of the woods and of course nothing is guaranteed, but at least I feel like I have a fighting chance at being around to see my boys grow up now. And for right now, that is more than enough!!

Y'all have been in my thoughts and prayers often during the past few days, especially Carlene yesterday as she underwent her surgery. I've read through old and current discussions, learned some of your stories, marveled at what you've been through and how fiercely you continue to fight. I will continue to check in here to provide moral support and positive thoughts if nothing else. If anybody has had this type of cancer, I would welcome the opportunity to communicate with you directly or just to learn more if there are any resources you can point me towards? Thank you all for being there for me and supporting me when I desperately needed it. I cannot express how much it helped.

Love,
Judy

Whewww
You dodged a bullet, I would say. Haven't heard that good of a story recently. Thanks for the info. Saundra

zippy

jacyone said:

Follow-up
I saw the oncologist yesterday, had the staples removed (24 of those things!), and learned the results of the pathologist's report and the all important question, "What next?".

The news was great. I had a Sertoli-Leydig tumor, which is pretty rare apparently, occurring in less than .5% of ovarian cancers. It was contained within the ovary and everything else tested clean. So staged at 1a with with the only niggling, less-than-ideal result being that the cells were "poorly differentiated", grade 3. But the oncologist was explaining about that not being the same in stromal tumors and as long as it wasn't "retiform" (grade 4), he was optimistic.

He recommended no further treatment at this time. I told him that I wanted to treat this aggressively and if that meant chemo just to be safe, then I was prepared to do that but he felt it wouldn't accomplish anything at this point except make me sick and make my hair fall out.

I haven't been able to find a ton of information on this type of cancer but from what the dr. told me and what I've researched so far, the recurrence rate is comparatively low, less than 10%, but when it does recur, it's most often within the first year. If it does recur, he said they usually treat it with surgery again rather than chemo since they haven't found a chemo that it responds well too yet.

So I'll be followed closely with an appt/exam in three months and one in six months with another CT scan at that time, and so on. I feel incredibly relieved and fortunate and grateful and blessed and a bit in shock, to be honest. I'm not completely out of the woods and of course nothing is guaranteed, but at least I feel like I have a fighting chance at being around to see my boys grow up now. And for right now, that is more than enough!!

Y'all have been in my thoughts and prayers often during the past few days, especially Carlene yesterday as she underwent her surgery. I've read through old and current discussions, learned some of your stories, marveled at what you've been through and how fiercely you continue to fight. I will continue to check in here to provide moral support and positive thoughts if nothing else. If anybody has had this type of cancer, I would welcome the opportunity to communicate with you directly or just to learn more if there are any resources you can point me towards? Thank you all for being there for me and supporting me when I desperately needed it. I cannot express how much it helped.

Love,
Judy

brenner tumor
I have had a month of pure hell. My doctor called me on a Friday night to tell me that my MRI showed an enlarged mass. They could not tell exactly where. He referred me to a gyn/onc. when I went in he informed me that I had 2 large heterogenious masses. My husband and I were both scared to death. My gyn/onc advised me that I need to have a radical hysterectomy and that it was a 70/30 chance of being benign. My operation was scheduled for the following Tuesday. I have never been so scared in my life and I don't even know how I got through the days. I am happy now to report that it was all benign! They were rare tumors called brenner tumors, they are usually only on one ovary, however mine were bilateral. Now all I have to be concerned about is healing and dealing with menapause. I now look forward to completing clinicals in nursing and helping people deal and survive cancer!

lnyeholt

jacyone said:

Follow-up
I saw the oncologist yesterday, had the staples removed (24 of those things!), and learned the results of the pathologist's report and the all important question, "What next?".

The news was great. I had a Sertoli-Leydig tumor, which is pretty rare apparently, occurring in less than .5% of ovarian cancers. It was contained within the ovary and everything else tested clean. So staged at 1a with with the only niggling, less-than-ideal result being that the cells were "poorly differentiated", grade 3. But the oncologist was explaining about that not being the same in stromal tumors and as long as it wasn't "retiform" (grade 4), he was optimistic.

He recommended no further treatment at this time. I told him that I wanted to treat this aggressively and if that meant chemo just to be safe, then I was prepared to do that but he felt it wouldn't accomplish anything at this point except make me sick and make my hair fall out.

I haven't been able to find a ton of information on this type of cancer but from what the dr. told me and what I've researched so far, the recurrence rate is comparatively low, less than 10%, but when it does recur, it's most often within the first year. If it does recur, he said they usually treat it with surgery again rather than chemo since they haven't found a chemo that it responds well too yet.

So I'll be followed closely with an appt/exam in three months and one in six months with another CT scan at that time, and so on. I feel incredibly relieved and fortunate and grateful and blessed and a bit in shock, to be honest. I'm not completely out of the woods and of course nothing is guaranteed, but at least I feel like I have a fighting chance at being around to see my boys grow up now. And for right now, that is more than enough!!

Y'all have been in my thoughts and prayers often during the past few days, especially Carlene yesterday as she underwent her surgery. I've read through old and current discussions, learned some of your stories, marveled at what you've been through and how fiercely you continue to fight. I will continue to check in here to provide moral support and positive thoughts if nothing else. If anybody has had this type of cancer, I would welcome the opportunity to communicate with you directly or just to learn more if there are any resources you can point me towards? Thank you all for being there for me and supporting me when I desperately needed it. I cannot express how much it helped.

Love,
Judy

2nd opinion?
The fact that your debuling was done by a gynocological oncologist and you are being treated by him is good, since that increase the odds of survival. While it's always nice to hear you don't need chemo I think I would get a second opinion from a gyn-onc just to make sure.

jacyone

lnyeholt said:

2nd opinion?
The fact that your debuling was done by a gynocological oncologist and you are being treated by him is good, since that increase the odds of survival. While it's always nice to hear you don't need chemo I think I would get a second opinion from a gyn-onc just to make sure.

Thanks!
It's funny that you suggest that, I just said to hubby a couple of days ago, "Should I get a second opinion?" He didn't think it was necessary, and it probably isn't, but still it's been niggling at me.

How does one go about getting a second opinion? Make an appointment and show up with your pathology report? Do you tell them the purpose of the opinion and they request your records from the other gyn/onc?

Thank you for your input and assistance!

Love,
Judy

jacyone

lnyeholt said:

2nd opinion?
The fact that your debuling was done by a gynocological oncologist and you are being treated by him is good, since that increase the odds of survival. While it's always nice to hear you don't need chemo I think I would get a second opinion from a gyn-onc just to make sure.

Second Opinion (Chemo or no?)
Okay, I have an appt. with another one of the top-rated gyn/onc this Friday 10/16. Top-rated according to annual polls of area health care providers. There are three gyn oncologists that switch positions from year-to-year, but it's been the same three for several years now. My current dr, who performed my hysterectomy, diagnosed, etc. is one of them, this guy is another. If he gives a different opinion from dr #1, I'll go see the third one as a tie-breaker Unless #3 suggests some unforeseen third opinion, at which point my head will explode and the question becomes irrelevant.

Obviously I'm hoping that the second opinion is the same as the first, that chemo is absolutely needless and I only need to continue being checked closely to watch for recurrence.

Any advice or suggestions or things you think I should know for this appt. would be very much appreciated! I've never had to seek a second opinion before (thank God!) so I'm a bit nervous just about that whole process, let alone what this doctor might have to say about treatment. I have my pathology and surgery reports, which is all they asked that I bring. He'll examine me and then we'll talk. Easy as pie, right? So why am I so nervous?? (

Love,
Judy