Juvenile Granulosa Cell Tumour

jennhood624

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.

Strongwoman

@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

Ally and welcome to our group. I am sorry to hear that you are going through this.  How recently did you find out? Have you been informed of what treatment protocol is for this as of yet? How are you feeling about it all?
 I, too, had not heard or read about this type so I started researching it a bit.  It sounds like from what I have read that it is similar to LGSC in the fact that it is a slow growing or indolent type of cancer. Do you know what Stage it is at?
This is not to diminish what you have in any way it is to hopefully provide you with solace that there is another type out there that it may be similar to in some ways. What I did read was that it may be treated with radiation and I don't know if that is later or something done sooner.  So, I will say this.  Write down all your questions no matter what you think of asking them.  Some, you may come across the answers yourself and if you do, great, just verify your info with your team/oncologist. You can also search this site to see if anyone else has had this by typing it in the search bar.  I did read somewhere late last night it can be referred to as another name as well so try that as well in the search bar. 
If you have any general questions for now, let us know and we will do our best to answer them or guide you to where you might find those answers.
If you have not already, you can order a copy of By My Side which can be sent to you in either digital or printed format and is FREE!  Here is the link: Ovarian Cancer Canada - Support and Resources (ovariancanada.org)
Today at 1pm we also have a Teal Thursday Chat session.  All you have to do is click on it at 1pm to join.  It is written format and you have to hit your refresh button to see new dialogue from members that has been added to any conversation.  
There is also a support group depending on age of yourself as well. There is one for young survivors specifically.  
We are here for you and that is all of you whether that means a good day or a bad day emotionally, mentally or physically.  
I hope some of this information helps and if you can, join our group chat today.

 

jennhood624

@Strongwoman thank you!

Strongwoman

@jennhood624
  How is your daughter doing?

jennhood624

@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.

Strongwoman

@jennhood624

  That is good to hear. Were they able to do the surgery laproscopically for her? Or did she end up with a small incision? That is one good thing about being youthful, they do recover quicker. Sad she has to go through this at all.

  How are you doing with it all? Need any links to supports for yourself?

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. 

Strongwoman

@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.

jennhood624

@strongwomanFor 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.

PurpleDolphin

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

Strongwoman

@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!

jennhood624

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

jennhood624

@Strongwoman Her gynecologist referred her to gyno oncology in Moncton, who referred us to an oncologist in Fredericton. After reviewing Hannah's file and seeing her age, he wanted the oncology department at the IWK to review Hannah's file.  

On a side note of all that.....her PET scan from February also showed bright nodules in her thyroid so she had to have an ultrasound done of that and it was sent off to an ENT in Fredericton. After reviewing her file, he has decided to do a biopsy on the nodules to see if it's cancerous. He says he believes there is a 70% chance that it is NOT cancer but we will cross that bridge when we come to it.

March 1, 2023 - we arrived in Halifax for Hannah's appointment with the oncologist at the IWK.  They spent the day collecting information and tests to get a plan going forward. Good news is that the ENT here at the IWK was able to arrange her thyroid biopsy today. They want to have all the info before they plan her treatment.

The oncologist also ordered an MRI while we are here. They want to make sure that they got all the cancer because the cyst had ruptured while they were removing it. Depending on the results from that will determine what kind of
chemo treatment will be needed.

So on Wednesday of this week, all of Hannah's doctors (family, gyno, peds, ENT, oncologists) will meet for what they call a Tumour Group where they will discuss everything they have learned so far and where we go from here.

We also spoke with a fertility clinic last week on the possibility of harvesting Hannah's eggs before chemo but Hannah decided against it and to just let nature take its course.

It is a lot of information in a short period of time but we are doing well, thank you!

Strongwoman

@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.

jennhood624

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

Strongwoman

@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

Strongwoman

@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.

jennhood624

@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❤️.

Strongwoman

@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.

Strongwoman

@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. 

Strongwoman

@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 

jennhood624

@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.

Strongwoman

@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. 

jennhood624

@Strongwoman

Strongwoman

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