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Good Day,

My name is Jenn and my 16 year old daughter was just recently diagnosed with stage 2 Juvenile Granulosa Cell Tumour.  She has since had the tumour removed and we are waiting on an appointment to start chemo.  From everything I have read, it is a rare type of ovarian cancer and I am looking to connect with others who have had experience with it and treatments.  Thank you in advance.

@jennhood624
 Welcome to our group and I am sorry that your daughter's diagnosis has brought you here.  I delayed in responding as I was attempting to rack my brain while I made a connection with the type of cancer your daughter has and a post by another member.  Although the other member has the adult version, here is my reply to them. Some won't apply as it sounds like it has been removed and treatment will be starting soon.  If you have any specific questions, send them out there and we will do our best to reply to them.
@PurpleDolphin

@Strongwoman thank you!

@jennhood624
  How is your daughter doing?

@Strongwoman She is doing good.  She's recovering well from surgery.  She has been in really good spirits about the whole thing so far.  We are just waiting for her appointment to meet with the oncologist to talk about chemo treatments.

@jennhood624

@Strongwoman unfortunately they ended up having to do an incision.  So far I am doing ok,  we have a very supportive group of people around us??.  We have also been in touch with a pediatric oncology navigator who has been a life saver. 

@jennhood624
  Thank you for your reply and sorry to hear that she had to have her first incision at her age.  If you are feeling like you would like to share a few more details about her surgery, I know it may help any others out there that are in the same age category that are either on this forum or will join in the future.  I think one of the things they might like to know is, what reproductive organs were removed and were any kept?  If they were all taken, how is your daughter and yourself processing all of it?  If you don't want to share, understandable.  When we are older, some of these decisions are not as difficult as we are at a different place in life.  For your daughter she is just beginning and this must be overwhelming.  I am happy to hear you are working with a pediatric oncology navigator.  If you or your daughter need any further support there is (Wellspring) http://wellspring.ca  which has a variety of resources there for both patient and family.  
  Thinking of you both daily and hoping she is recovering well.  When you feel you are ready after receiving the Oncology appt news about chemo/treatment, and if you feel like sharing it with us, I know I would like an update. 
Take care the both of you.

@strongwoman For the past five years, Hannah has been experiencing lower abdominal pain. When she got her first period, she was in Grade 6.  She continued to have a regular period for eight months after that and then it suddenly stopped. In November of 2022, she was rushed to the emergency room due to extreme pain. They found a 12 cm cyst on her left ovary and scheduled surgery for January 24th. Upon entering, they discovered the mass had grown and it was necessary to open her up. It was a 15 cm, 6 pound cyst that had flipped (ovarian torsion). It ruptured when they touched it and they ended up needing to remove the left ovary and fallopian tube. The mass was sent away and the pathology report confirmed it was cancer; stage 2 juvenile granulosa cell tumour. Hannah has been to see an oncologist and chemo is recommended. We are waiting for an appointment closer to home so she can begin treatment.  So far Hannah is doing good, she is in good spirits and healing very well from her surgery.

Will keep you updated.

I had many scans/ultrasounds and was told that my tumor was either a cyst or fibroid, when I signed the surgery papers the surgeon asked "when I get in there and it looks suspicious, can I take that ovary too?" I said do whatever you need to.....had a total laproscopic hysterectomy on April 7, 2022 and on May 18, 2022 it was confirmed to be Adult Granulosa Cell Tumor Stage IA(so the very beginning, also asked my oncologist how long it had been there and she said at least 2 yeara, it was 8.5cm at its widest at removal), no need for chemo or radiation but I go for CT scans every 6 months to keep an eye on my other ovary

@jennhood624
  Good Morning, I am checking in to see how Hannah is doing and if she has started chemo yet?  How are you holding up?  She has been through a lot given her age and by what you have posted, is processing it quite well so far. So amazing! Glad you requested chemo closer to home. My first one was over an hour away and it made for a very long day. My Dad dropped me off for 8am, picked me up at 4:30pm and we got home some time after 5:30pm that day.  The next one, thankfully, I was able to switch to more local.  It cut out the length of the day for me which was good.  I would go into the appt, quite the chatterbox due to the steroids taken before the chemo and on the way home was usually quiet and couldn't wait to get home.  My younger Aunt (1 1/2 yrs older than me) used to take me in and pick me up and we used to laugh a lot about all the antics I did before going in and what I found funny.  It is so good to laugh especially if you can during difficult times.  
  I will continue to think of you both.  Be kind to yourselves!

PurpleDolphin said:

I had many scans/ultrasounds and was told that my tumor was either a cyst or fibroid, when I signed the surgery papers the surgeon asked "when I get in there and it looks suspicious, can I take that ovary too?" I said do whatever you need to.....had a total laproscopic hysterectomy on April 7, 2022 and on May 18, 2022 it was confirmed to be Adult Granulosa Cell Tumor Stage IA(so the very beginning, also asked my oncologist how long it had been there and she said at least 2 yeara, it was 8.5cm at its widest at removal), no need for chemo or radiation but I go for CT scans every 6 months to keep an eye on my other ovary

So glad that they caught it before needing chemo <3

@jennhood624
  Thank you for sharing all of that and yes, it absolutely is a lot especially for someone so young.  
I feel that based on Hannah's response to harvesting the eggs that she is understanding what is going on. I would hesitate to say that even say take her age out of it and I, personally, would have difficulty in dealing with that part of things.  Were you informed by the fertility clinic that this process was more pertinent prior to commencing chemo as opposed to afterwards? I don't know the answer to the question and is why I am asking.  I can't even imagine what is going through her head. She is so young and all of this is a lot and it seems like more has been thrown at her. Has she had a chance to connect with anyone or a group to discuss how she is feeling or coping with this?  As I write that I also wonder if she is in a denial stage at the same time as she has been faced with so much in a short period of time.  I write this and am doing so thinking like both a Mom with a child that has cancer and as the young adult with cancer.  It is like battling myself constantly inside and deciding on what is appropriate and not appropriate to write. So bare with me.  I know how best, it was like when I knew I had recurred and hadn't told anyone yet, I was steps ahead of them all as they were left back at the beginning dealing with the emotional part of things and I was doing my planning. Does that make sense?
  Looks like you will have some answers tomorrow. For myself, I receive the information, hear what they have to say and it takes me days to get to the emotional impact of what that means and allow myself to process it.  I have no idea if that is the norm or not but that is how my brain processes things. For you both, I will say that I will be beside you as you are at Hannah's appt tomorrow. Be kind to yourself, Hannah be kind to yourself as well. It will be a lot to process and may need time to sink in before being able to discuss at any greater length and how each of you feel about it. 
  I would like to extend this invite to Hannah-- if you would like to join along on Thursday even to watch the thread of actitivity, it may be good to see. Perhaps you would like to join in some time. As you can see, we all use pseudo-names and it is a safe space. You have a lot to process and a journey yet to complete. There are many ups and downs along the way. There is no one way to take the journey only the one in front of you and the experiences you will encounter. Questions are good and welcomed.  If not, I understand and it may not be the right timing for you yet. We will be here for when you are.

@Strongwoman Thank you so much.  We were informed by the fertility clinic that the eggs would have to be harvested before chemo could start. 

@jennhood624
 Hello!  I hope you are on your way to getting some answers regarding treatment for Hannah.
  I saw this on the news tonight and thought you might be interested or a relative in doing this for Hannah. Here is the link:
https://www.victoriasquiltscanada.com/
  I think it something wonderful that others are doing for cancer patients.
Take care

@jennhood624
  Hello. I am checking in to see how Hannah is doing and if you have any updates you would like to share. Have been thinking if you both and wanted you to know that.
Take care.

@Strongwoman Hannah just finished her 4th cycle of chemo.  Overall doing good, a little tired but still smiling??.

Hannah will be having an mri on her abdominal and pelvic area later this month.  They will review the scans to see if abother cycle is needed.  

Thank you for keeping us in your thoughts??.

@jennhood624
  I am so happy to hear that Hannah is doing well with treatments other than some fatigue. Youth is definitely a bonus when it comes to the ability to heal and what the body can tolerate as well.  I am so thankful that this is the only symptom plaguing her. 
  I will keep you both in my thoughts later this month and will be looking forward to the results of her MRI results should you choose to share them either openly here or on a private message to me directly.  I will keep my fingers crossed that she should not have to require more treatment and that she continues to see more favoured outcomes from treatment and this disease.  
  Take care and hope you are all not being affected too greatly from the smoke from the fires,
Thank you also for the update and sharing,  It truly does help others that may be in the same situation and gives a sense of community when she is going through her journey.

@jennhood624   I thought I would check in to see how Hannah is doing?  How are things going with treatment, follow ups etc?   Let us know when you have some time.  I think of her often.  <3

@jennhood624   It has been awhile and wanted to check in to see how Hannah is doing.  If you could update on the site, I would love to read it.  It may help anyone else either now or in the future that is diagnosed with the same so they can see how the journey may be for them.  Let us know when you can.
Take care  <3

@Strongwoman  Good Evening, so sorry for the delay.  I've been meaning to update.  Hannah did not need anymore chemo after round 4 and was declared cancer free.  She rang the bell in August 2023 :)

Hannah has been doing really well since chemo.  She still gets a little fatigued quicker than she use to but it hasn't been a year yet since she had chemo.  She will have scans every three months for the first couple of years.  We are actually down in Halifax at the IWK at this very moment.  She is here getting her 3rd follow up scan since she finished chemo.  

Thanks for checking in, if you have any questions, feel free to reach out.

@jennhood624  Thank you for the update.  Congrats to Hannah for ringing that bell!!!  That is awesome and hope you got a pic.  It sounds like they are following her closely for the first year which must be a relief as well.  Thankful that thus far all scans have been good and not showing any growths.  
  Thank you for offering to field any questions as well.  It is much appreciated knowing that Hannah had such a rare form of the disease.  It is very kind of you to share what knowledge and experience you have had with it.
  If you celebrate, have a wonderful Easter. Enjoy time with family and friends and create memories that last forever.  <3

@Strongwoman

Ah-mazing!!!!  Thanks for sharing.
Congrats Hannah!!!  <3
@jennhood624

Hi @jennhood624,

My 11yo girls was also recently dignosed with same type of cancer. Would you mind sharing your experience? I'm struggling big time to find people to connect to. Thank you,

@Strongwoman have you heard from any other parent about other kids who had juvenile granulosa cell tumor. My daughter is on the journey to soon start chemo, any information at this point is highly appreciated.

Karen

Hello @Karen Moret and welcome to OVdialogue. I'm so very sorry to hear of this diagnosis for your daughter. If @jennhood624 is still an active member I am hoping she will be able to respond and share her experience. Sadly, @Strongwoman has passed away. She continues to be missed by many in this forum.

I have been the site moderator for the past year and during that time, I do not recall anyone else posting about this form of cancer on the forum. I did a site search as well however the only thread I could find was this one. 

I can only imagine the shock of the diagnosis. Were there symptoms leading up to this? Do they know what stage? With chemo starting soon, I'm assuming your daughter is being treated by a gynecological oncologist. I'm sure you've done this however if not, I would ask him/her to direct you to some resources on this topic. Are their support groups dedicated to this? Online forums? Admittedly, I had to look this form of cancer up as I too was unfamiliar with it. I found information in the "Understanding Ovarian Cancer - A Comprehensive Patient Guide". Have you been to the Ovarian Cancer Canada website? Ordered a copy (you can get an e-copy or hardcopy). The link is below (you may need to cut/paste into your browser).

https://ovariancanada.org/resources/support-resources

We also have a Teal Tea video connect that happens monthly. The next one for 'younger people' is on July 29th. You can find the information is the EVENTS tab above or the main page of OVdialogue. Perhaps there will be people in that forum who have a similar diagnosis. As well, Wellspring is a great organization with many resource supports if you have not heard of them (https://wellspring.ca/getting-started/)

I'm sorry I couldn't provide more concrete information. I can only imagine this is a lot to deal with for your daughter, yourself and family. Please let me know if any of the above is of value. Please also continue to ask questions. If your daughter is going through chemo, there is a lot of information on this site from the Teal Sisters. We will try to help as best we can.

#Introductions #Supportandencouragement

Good evening @Alwayslearning & @Karen Moret,

First of all please let me say that I am so sorry to hear about your daughter Karen.  I can empathize with what you are going through.  If you don't mind, can you please share a little bit about your daughters diagnoses.....symptoms, stage, any surgeries?????  I would be more than happy to talk to you about things.  If you would feel more comfortable emailing me, I could give you my email address.  I don't even mind talking on the phone with you if you would like, you just let me know:o)

And @Alwayslearning, WOW......I am soooo sorry to hear about @Strongwoman.  I haven't been on this forum for a while and I'm sad to hear of her passing.  How long ago?

A quick update on Hannah, her cancer returned in March 2025, just shy of two years being cancer free:o(  She had surgery to remove another cyst that turned out to be ovarian cancer again.  She then underwent 6 rounds of chemo and was declared cancer free in February 2026.  Hannah had a follow up last month where they did a CT scan and they found another cyst on her remaining ovary (side note:  Hannah had her left ovary removed in 2023 and when her cancer showed up again in 2025 it was on the left side AGAIN)  Hannah still has her uterus and right ovary.  We are now awaiting an MRI to see if her cancer has return.

@jennhood624 thank you for lending your voice and your daughter's experience back on the forum especially in light of @Karen Moret and her daughter's recent diagnosis. I read back through Hannah's experience. I'm so very sorry that at her age she has been through so much. Cancer at any age is horrific, however at a young age it is even more overwhelming to deal with and try to comprehend. Especially for a patient so young. We have experience with this in our family with my husband's cousin so I can certainly empathize (she had a rare form of adult leukemia and a gene mutation).

I know you are all on pins and needles waiting for the results of the most recent MRI. I'm sending positive thoughts your and Hannah's way. I can tell from your story that she is a very strong and brave young lady. The true definition of a Teal Warrior 💙

In answer to you other question, we lost @Strongwoman in October of last year. She was a guiding light for myself and so many. I still feel her presence every time I'm on this forum. 💗

Again, I'm sending hugs and positivity your and Hannah's way. I appreciate you continuing to engage with this forum and your offer of help to others. If you want to share your personal information privately, just a reminder (if you aren't aware), that you can "hover" your cursor over the name of another member and you should get an option to send a message directly to them.

I appreciate you keeping us posted on Hannah's progress.

#Supportandencouragement

Hi @jennhood624,

Thank you for helping! I'll share a little bit more. She had been feeling pain in the lower belly (same side of her affected ovary). Not frequent pain, more when she'd run or walk for longer period, like we do while on vacation visiting places. She also had a a bump on her groin, which initially the doctor thought it was an inguinal hernia. During the month previous to her diagnosis she had been feeling sick and sense of fullness with little food. Not vomiting, but more feeling like, so she was reducing the amount of food intake. Otherwise, behaving pretty normally and very healthy, the sportive type of kid. She has constipation issues ever since she was born, so the doctor thought of doing an US to investigate possible complications due to constipation and this is where our journey started.

It happens that the hernia was ascites flowing through a peritoneo whole, the sickness was due to a lot of ascites building up on her belly and they found a mass (fluid and solid like) on her right ovary. After another US, an MRI, a lot of blood exams, and a CT-Scan they told us it was cancer. The doctors also shared that they'd only be a 100% sure if they opened her up, removed the ovary and falopian tube and sent it to biopsy. At that point, they basically knew it was advanced enough to remove it all not only the tumor and they also suspected of the type. So, they informed us there was a risk of rupture and contamination if they attempted to just remove the tumor.

Long story short, from the time of the first exam and her surgery only 2 weeks had passed. After surgery, we waited for 1.5 work for the biopsy results,  which confirmed the juvenile granulosa cell tumor. Next week, we'll be 4 weeks from her surgery and they're already getting ready for the chemo treatment.

Her stage is between 1c2 (bc one of the tumors had ruptured before surgery and another during surgery) and 4 (bc there are some nodules in her lungs that they couldn't confirm yet if they're linked or not). Given the scanerio, they'll start the chemo treatment at any time.

I have read a lot of things in this site and have been eagerly searching for content and looking for connections, but I have no idea how this is going to be. It's a very rare type and so far I've only met people who had the adult type.

Up to the surgery she had a gynecologist and a surgeon leading her case. Now she's being supported by an oncologist and an extended team.

I think I've given enough details, but can answer any questions for other people who might need to learn from her experience. She's doing great, looking at her no one can tell what's happening inside of her.

I'm very sorry to hear her cancer came back again, how is she doing? any new rounds of chemo? I'd love to chat privately for more details.

Thank you,

Karen

Have they said how many rounds of chemo your daughter will need?  Hannah had 4 rounds her first time and 6 the second.  Before Hannah had chemo, the doctors put her on a drug called lupron (to protect her fertility and preserve ovarian function).  I'm not sure if that is something they talked to you about given your daughters age being so young.  I'm still shocked that my daughter got ovarian cancer at the age of 16 and then to find out your daughter is only 11😮.....I have no words:o(  

Have her doctors talked about genetic testing?  Shortly after Hannah started chemo, they did genetic testing and discovered that Hannah has a gene called Dicer 1, which after further testing, revealed that I passed it onto her.  I have never had any issues but this gene has been linked to several cancers.......ovarian, thyroid, lungs and kidneys.  

If you ever want to reach out and talk privately, I'm here for you🥰  

Jenn

Hi @jennhood624

How do I connect with you in private? I couldn't find the option in this site.

Karen

I just sent you a private message with my email address:o)

Hi @Karen Moret if you hover your cursor over someone's name which should be at the left of the post, you should get a pop-up box to Send Message or Request Contact. The "Send Message" will let you send a private message. I hope that helps.

@Alwayslearning, I'm sorry to hear about strongwoman. I've been to every source of information I could find through google search. I've been leveraging all my contacts to help me find people who've gobe through similar experience. I haven't found one single parent who went through it. I found 2 women who had it, but the adult type. One didn;t need chemo treatment, the other one had to bc it came back. Thankfully both of them are still alive. I might not be able to attend the 29th teal tea, bc it's my other daughter's b-day. I haven't hear of wellspring, but will search it up). Any informaiton is off high value. Thank you very much!

@Karen Moret I am sorry to hear about your daughter's diagnosis. Does the hospital she is at have an AYA (adolescents and young adults) oncology program/care coordinator? I know PMH in Toronto and LHSC in London both have one. Pink Pearl Canada has also been a helpful resource for me, specifically their peer mentor program that I am currently in (they are more so geared to young women 18+, but might still be able to help or connect you with others). YACC (Young Adult Cancer Canada) has a Facebook group where young adults (that either are currently going through cancer, or went through treatment as a child, etc.) share their experiences and ask questions. I hope you find the information you are looking for, take care 🩷

@MissERP thank you so much for sharing this information. 💗

Hi @Karen Moret ... thank you for sharing more details regarding the journey to your daughters diagnosis. While I'm sure you are all still processing it all, I am thankful that the timeframe from her first exam to surgery was quick. Each of us that have been diagnosed understands the agony of waiting for action and information. Also to be dealing with diagnosis, surgery and chemo at such a young age is indeed overwhelming. It's overwhelming for an adult so I can only imagine for a young child. I wish I could do more than just send hugs to both of you. 🤗

No doubt you have been scouring every source you can for information. It's also so hard to ensure what you find is trustworthy. We know that "Dr. Google" can be a scary source of information. I'm hoping the oncologist can provide some direction on resources/support. I'm not sure what hospital/cancer centre you are working with however I did do a search of the "Hospital for Sick Kids" in Toronto. It mentioned they had a "Paediatric & Adolescent Gynaecology Clinic" that perhaps your oncologist could engage to see if they have information/resources for help. I do know there are other cancer centres in Ontario that are child focused that may have resource support e.g., Hamilton has a Children's Hospital. Again, I apologize if I'm being repetitive to what you have already investigated. As a Mom you are no doubt, "all over this". 

While I'm not endorsing any of the forums on Facebook, I did do a search for "Juvenile Granulosa Cell Tumour" and there were at least four sites that popped up. You may have already looked at those so forgive me if what I'm telling you is repetitive. I joined a forum on Facebook for Lynparza users (it's a maintenance drug available for some OVC patients). It has been very helpful for me.

A special shout out "thank you" to @MissERP for sharing the resources she has encountered/is aware of. 

I'm also tagging @mfallis_OCC who works at Ovarian Cancer Canada. Marianne may be aware of other resources that might be of help to you. 

If there are any other Teal Sisters on this site who have information to share, I feel confident they will engage in this thread.

Please keep us posted when time allow, on your daughters progress. She is no doubt, a brave young woman. 💙

#Supportandencouragement

thank you for sharing all the details, and do not apologize for being repetitive, any information is highly relevant. 

I still struggle to find people to connect who can share similar experience. Only found one more girl who had it 10 years ago and is since then free from recurrence, excellent case of success.

My daughter is going through her 4th and hopefully last cycle of chemo. She had 4 cycles of 3 weeks each. 5.5 days admitted to infuse chemo drugs and receive hydration 24h. The rest of the days at home.  

She did bleomycin, etoposide, and cisplatin. Nausea wise it was well controlled for her, except for a few days here and there while admitted at the hospital. 

Somethings she took beyond the chemo: lapelga (imunity booster) dexamethasone, olanzenpine (anti- nausea), odanzentron (anti-nausea), gravol didn't work at all and gave her pretty harsh neurological like side effects (strong headaches, diziness, blurry vision, and numbness on hands and arms), so it became a hard no for her. She also took magnesium throughout the whole treatment, a specific antibiotics to avoid pneumonia (it has a long funky name), phosphate when was needed once, and a drug to protect her hearing (cannot remember the name).

She followed up before every cycle on her hearing to early catch any  losses, but luckily it didn't happen.

She did a lot of bood work throughout, at least every Fri and Mon and the day before the new cycle started.

Immunity wise she caught RNA virus more than once but it didn't evolve to anything serious, her port-a-cath contributed to the development of blood clot inside the right atrium of her heart and made her go through the, by far, the worst part of her experience in all of this: twice a day painful blood thinner injection. We don't regret having opted to get the port-a-cath, though.

Every cycle looked like this: 5 days at the hospital, 6th day by noon she'd go back home feeling very tired for 3 to 4 days, then 2 to 3 days of body soreness and then, normal life if it weren't for the painful enoxaparin injections.

I think I shared the most important medical information.

Mental health wise, what worked well for her is that we tried to give her as much of a normal life as we could. Very upfront on everything she should expect,, never lying, but keeping positive attitude. accepting what cannot be controlled was very important, even when itvwas hard. Giving her space when need, respecting her boundaries for however and whatever she felt, but also following up on her medication even when it was painful, tiresome. We defined important milestones together and made them our priority before anything else. Identified what was important vs nice to have, and kept our commitments. Being a highly sociable kid, having people around helped with the process as well. 

Hope I've shared the most important information. I'm happy to answer any questions now or in the future.  Will post updates when I know/have more to share.

Best wishes.

Karen