Stage 1C granulosa ovarian cancer

Posted by scoobydo2017 @scoobydo2017, Apr 18, 2017

Dear Mayo Clinic, I am 48 years old and diagnosed with adult granulosa ovarian tumor (sex-cord). Stage 1C because the 15cm 10cm 7.5cm capsule had ruptured. They thought they were going in to remove a cyst on my ovary. I suffered for 3 days because the emergency room said I had to wait until my scheduled Monday for surgery. I have slight hyperthyroidism and protein S deficiency. My They removed both ovaries/tumor, a full hysterectomy and oophorectomy, removal of one lymph node, the omentum (an area of fat attached to the lower part of the stomach). All samples came back clean from the hysterectomy. My family and I are confused on the issue to follow with BEP chemo. Is there another treatment or do observation? Do you have any data to support that chemo could lesson my risk of recurrence? Percentage of recurrence? @sc2017oobydo

Interested in more discussions like this? Go to the Gynecologic Cancers group.

Welcome @scoobydo2017,
Connect is an online community where patients can share experiences and find support from others. I’d like to connect you with other women talking about ovarian cancer. Please meet @joannedb @katethegreat @caf132 @rena42 @pauldale4 @mfell @gill @jfc4 @libbysmom and @mohavegal. You can read more about them in this discussion:

– New to group. Have ovarian cancer http://mayocl.in/2cDi7tK

Scoobydo, for your specific questions, I recommend calling Mayo Clinic and getting a second opinion. Here are the contact numbers at our 3 campuses in MN, AZ and FL http://mayocl.in/1mtmR63

@elenab, you planned to get a second opinion at Mayo for ovarian cancer. Do you have anything to share?

REPLY

Hi,
I am just diagnosed (a month ago)with adults granulosa cells diffuse and microfollicular pattern pt1c. I am interested in how your experience went as I have the same as you and looking for a second opinion, possibly even a third. Thank you

REPLY
@cpl

Hi,
I am just diagnosed (a month ago)with adults granulosa cells diffuse and microfollicular pattern pt1c. I am interested in how your experience went as I have the same as you and looking for a second opinion, possibly even a third. Thank you

Jump to this post

Hi @cpl, welcome to the group. Adult-type granulosa cell tumor is a clinically and molecularly unique subtype of ovarian cancer. The majority of adult-type granulosa cell tumors are diagnosed at an early stage. Has it been determined that your cancer is early stage? Are you seeking a second opinion at Mayo Clinic?

REPLY
@colleenyoung

Hi @cpl, welcome to the group. Adult-type granulosa cell tumor is a clinically and molecularly unique subtype of ovarian cancer. The majority of adult-type granulosa cell tumors are diagnosed at an early stage. Has it been determined that your cancer is early stage? Are you seeking a second opinion at Mayo Clinic?

Jump to this post

Hi, yes. It is AGCT on right ovary, Grade 1, FIGO stage 1C2.I am really confused as at one place they want me to do chemo and on another they told me there is no treatment. Please advice. Thank you

REPLY
@cpl

Hi, yes. It is AGCT on right ovary, Grade 1, FIGO stage 1C2.I am really confused as at one place they want me to do chemo and on another they told me there is no treatment. Please advice. Thank you

Jump to this post

Hello, @cpl This is indeed very confusing with two very different recommendations. How is all this affecting you emotionally? Did the doctors explain their recommendations? If I was in your situation I'd be really anxious trying to figure out what to do.

When I was diagnosed with endometrial cancer in 2019 I returned for an appointment with the GYN/ONC surgeon one month later and she gave me a 5-year cancer survivorship plan. She recommended no other treatment at the time and she explained why (FIGO Grade 1 endometrioid adenocarcinoma, Stage 1a).

Are you seeing doctors at academic medical centers with a cancer care center where the care is coordinated across departments? For instance, a relative of mine is getting his care at Stanford University's Cancer Institute in California. I go to Mayo Clinic's Cancer Institute in Rochester, MN. Both of these places are designated as comprehensive cancer care centers with the National Cancer Institute.

Where are you located? Are you thinking of going to Mayo Clinic?

REPLY
@cpl

Hi, yes. It is AGCT on right ovary, Grade 1, FIGO stage 1C2.I am really confused as at one place they want me to do chemo and on another they told me there is no treatment. Please advice. Thank you

Jump to this post

cpl, I agree with @naturegirl5. It is very confusing to get 2 different treatment options from two different medical centers. It might be helpful to get a third opinion. Has surgery been discussed?

REPLY

Yes,I had surgery and according biopsy, Hackensack M.C. in NJ recommended chemo because they found some tumor on surface ov ovary(not tube), that is why is stage 1C2, Grade 1. Sloan Hospital does not recommending chemo because they believe there is no evidence that it helps for Granulosa Cell tumors. I was thinking getting more opinion Anderson-Texas, but they don't wanna see me unless I send material to them too-so they do their biopsy. ..and this material went true 2 places already. I was thinking ask Mayo clinic too. Did anyone went thru the same problem? Thank you

REPLY
@naturegirl5

Hello, @cpl This is indeed very confusing with two very different recommendations. How is all this affecting you emotionally? Did the doctors explain their recommendations? If I was in your situation I'd be really anxious trying to figure out what to do.

When I was diagnosed with endometrial cancer in 2019 I returned for an appointment with the GYN/ONC surgeon one month later and she gave me a 5-year cancer survivorship plan. She recommended no other treatment at the time and she explained why (FIGO Grade 1 endometrioid adenocarcinoma, Stage 1a).

Are you seeing doctors at academic medical centers with a cancer care center where the care is coordinated across departments? For instance, a relative of mine is getting his care at Stanford University's Cancer Institute in California. I go to Mayo Clinic's Cancer Institute in Rochester, MN. Both of these places are designated as comprehensive cancer care centers with the National Cancer Institute.

Where are you located? Are you thinking of going to Mayo Clinic?

Jump to this post

Hi Helen, thank you for your suggestions and experience. I understand stage 1A does not need usually any treatment and that is good. FIGO Stage 1C is more like gray zone and it is stressful when doctors don't agree. They don't know much about Granulosa Cell cancer generally because is a very rare type. I was trying to think how maybe not taking chemo is better…but then, one oncologist told me how they had case 1C2 who had cancer back already in 6 month??! If I try to ask how I wanna see statistic of recurrence , I am getting answer how every patient is different and they cannot tell. BUT, I don't think we are all soooo different and I believe there has to be way to figure more about what we have in common so they can maybe give me more information, just if they do more effort. At the end of story, looks like I will have to do my research and take responsibility for decision. It is stressful. I was thinking to get Mayo Clinic opinion. I did get from Sloan Hospital-women cancer opinion, and is that they do not recommending chemo. New Jersey Hackensack cancer center does. They are both high ranked for cancer care.

REPLY

Hi @cpl, Sloane Hospital for Women in NYC and affiliated with Columbia's Medical Center? And Hackensack is also affiliated with a university medical center. How confusing (I say, again) to get such very different recommendations. Yes, of course every patient is different however if the GYN/ONC physicians you are talking to have experience in treating Adult-type granulosa cell tumor then I would think they could give you some additional information with statistics to help you to make a decision. I'd be really anxious in your place. I can feel my heart pounding because I really know that confusion. For me, I wanted my cancer treated as soon as possible and get that plan in place. Do I have that right? You are in a region where there are other options for another opinion. I'd also want another opinion. Sure, Mayo is a good option. Would you go to Jacksonville (FL) or Rochester? What does your local gynecologist say about this? Can they refer you to Mayo or another cancer center in your region?

REPLY
@cpl

Hi Helen, thank you for your suggestions and experience. I understand stage 1A does not need usually any treatment and that is good. FIGO Stage 1C is more like gray zone and it is stressful when doctors don't agree. They don't know much about Granulosa Cell cancer generally because is a very rare type. I was trying to think how maybe not taking chemo is better…but then, one oncologist told me how they had case 1C2 who had cancer back already in 6 month??! If I try to ask how I wanna see statistic of recurrence , I am getting answer how every patient is different and they cannot tell. BUT, I don't think we are all soooo different and I believe there has to be way to figure more about what we have in common so they can maybe give me more information, just if they do more effort. At the end of story, looks like I will have to do my research and take responsibility for decision. It is stressful. I was thinking to get Mayo Clinic opinion. I did get from Sloan Hospital-women cancer opinion, and is that they do not recommending chemo. New Jersey Hackensack cancer center does. They are both high ranked for cancer care.

Jump to this post

@cpl, should you wish to consider a second opinion at Mayo Clinic, here is the information to request an appointment or get your physician to make a referral: http://mayocl.in/1mtmR63

REPLY
@colleenyoung

@cpl, should you wish to consider a second opinion at Mayo Clinic, here is the information to request an appointment or get your physician to make a referral: http://mayocl.in/1mtmR63

Jump to this post

I did, but they did not gave me yet any appointment. The first available is in February and they don't seem like they care much.I am waiting for their response still….

REPLY
@colleenyoung

Hi @cpl, welcome to the group. Adult-type granulosa cell tumor is a clinically and molecularly unique subtype of ovarian cancer. The majority of adult-type granulosa cell tumors are diagnosed at an early stage. Has it been determined that your cancer is early stage? Are you seeking a second opinion at Mayo Clinic?

Jump to this post

Hi, I suggest that you join the Facebook group "GCT Survivor Sisters". It has some very helpful information and there are women from all over the world sharing their experience with granulosa cell tumors. I have found it very helpful to learn questions I should ask my doctor that I wouldn't have thought of on my own. Also, learn different treatments women receive and things that have helped them.

REPLY
Please sign in or register to post a reply.
  Request Appointment