Juvenile Granulosa Cell Tumour
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.
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.
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Comments
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
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.
How is your daughter doing?
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.
Will keep you updated.
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!
chemo treatment will be needed.
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!
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.
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