Granulosa cell tumour

hi haylie: I'm going to quote portions of your response to be sure I don't miss anything: 

"I haven't been offered staging surgery, I have to go for a full body CT scan in 3 weeks which I assume will pick up any tumours (will this also pick up anything lingering from the ruptured tumour that wasn't cleaned up during surgery?)."

This is an excellent question to add to your list for the nurse. It is my understanding that these scans can only pick up tumors if they are a certain size and will not detect microscopic disease. I am glad to hear that your doc is doing this scan bc he will be able to see if you have any inflamed lymphnodes or other things like that which will prompt him to look into things further. 

"What I didn't mention in my original post is that I had my bloods done on Monday, I briefly glanced at the paperwork I'm having a full blood count, CA125? and some other tests too. To be honest I had the blood done before I was told it was cancer so I didn't really look as I thought it was just a formality, oh how naive I was!"

Hindsights 20/20, isn't it? Inhibin A and Inhibin B are standard markers for this disease so I would ask if they were a part of your panel. You can also ask about AMH and esterodiol as they are often tracked although the research doesn't validate them as legit markers so many docs will not track them. Also as a Person with PCOS, it is likely that your AMH is artificially higher because it is a test that looks at your egg quantity and quality and PCOS folk tend to have lots of eggs. It is my understanding that CA 125 is a test typically used for the more common ovarian cancer called ephithelial ovarian cancer. I'm not sure of its effectiveness in tracking GCT. 

"The consultant I have been referred to is supposed to be brilliant and has an interest/experience in GCT so I'm under the best possible person. He is very positive and has assured me for a stage 1 cancer the prognosis is very good. I'm going to have bloods and scans every 3 months for the foreseeable future so that's good."

This is absolutely wonderful. I'd love to hear more from you about other recommendation he makes. It is so hard to find experts in GCT! I agree that stage one has great prognosis. My doc tells me that most women in stage one will live to die of something else so there is a lot to look forward to in your life. You are young and otherwise healthy. You are strong and you can beat this. 

"KitKat, are you having chemo? My doctor said surgery for a stage 1 is as effective as chemo and given the side effects associated with chemo there's not enough evidence to suggest it would be worth putting me through it. Although if my CT comes back and there are tumours he may put it back on the cards."

I am strongly considering chemo. For us 1c folks the jury is out about chemo. Some docs will tell you it is not necessary and others will tell you it is a gray area and a personal decision must be made by the patient. I have a big cancer history in my family so for me, I'm strongly considering it so I know I hit it with everything I could. But that doesn't mean that would be the right decision for you. You will be able to decide what is right for you. There are many survivors in an online group that I'm in who did not do chemo as 1c. There are others who did. There is some debate about which cocktail is best. There are many folk who do carbo taxol and others who do BEP or just EP. 

"How are you doing mentally? Physically I'm fine, I've gone back to work, I've gone back to the gym. I had my first period since having my right ovary removed and it hurt like hell and was very heavy. Mentally I'm a mess. I don't want to put my family/husband through this, I've just qualified as a chartered accountant which I work hard for for 5 years, I've just bought a house, my life was supposed to be starting!! I'm so worried I'm going to leave my family. That's all I can think about."

I go back and forth mentally. Sometimes I feel fine. Like I'm talking about someone else who has cancer and other times I totally lose it. I'm lucky because I have a wonderful husband and mom is retired and has been spending lots of time with me in the town where we live. I also have four siblings who keep in touch and a wonderful network of friends. Do you have a good support system? You can always message me at any time. Are you on Facebook?

"I've been referred to a fertility specialist to talk about my options but I'm not even sure I want to go through it. 1) because of the hormones involved in fertility treatment/pregnancy and 2) because what if I have a baby and have to leave it :-("

Best advice I have received: make your decisions with a belief that you will be here for a long time. Make decisions based on what you want for your long healthy life. Don't be a patient. Live your life. The life you deserve. If you want a family you deserve to have one. Tell your husband how you feel. I have felt the same way and when I told my husband that he didn't sign up for this he supported me saying that I am his number one priority and we will figure out the rest together. You two can do it together. I know you can. 

"I need to hear something positive. Please tell me something positive."

I haven't told too many people this but I had a CT where they found a suspicious nodule on my lung. Yesterday I had a needle biopsy done. Haylie, I've never been so scared in my life. I prayed and talked to my body in meditation. I visualized good news and this morning I heard the results of the test. Prelim report: BENIGN. God is good and we aren't going anywhere. You've got this. You can do this. And there are other survivor sisters out there to support you too. 

Xoxo. Always reach out when you need help. 

KitKat

One last thing I meant to mention! There is some research that fertility drugs can encourage the growth of this cancer. That is something I'm researching further before making a decision about doing an egg harvest before starting chemo. 

KitKat, again thank you for your detailed reply. How do you know so much??

I'll try and answer your comments one by one:

- I'm going to ask my doctor about staging. I am absolutely terrified that the cancer cells that leaked out into my body for 3 days before surgery will have latched on somewhere. Did yours rupture? Is that why you're having the staging surgery? I'm glad for the CT but I'm also afraid of what it's going to show. Do you know anything about what happens when the tumour does rupture? I couldn't find anything definitive online which is why I'm freaking out. I'd say that's the one thing I'm really worried about, that the surgeon didn't clean me up properly inside and they are in there burrowing away. Will bloods pick this up?

- Inhibin does sound familiar, I definitely saw that ticked on the blood paperwork so that's a good thing. I will ask the consultant about the other tests available that you've mentioned above (he's going to think I'm really clever and have done my research!). Are you having all of them blood tests? Are you having bloods regularly going forward? Mine are every three months for the foreseeable future.

- I will take notes next time I have an appointment and will share anything the consultant says that hasn't already been mentioned, I'll be more prepared next time!! I went in there on Monday thinking I was going for a chat about the benign tumour but then he started going on about chemo and I said "wait a minute, it was benign why are you talking about chemo?" and he looked at me and said "it wasn't benign it was cancer" I couldn't breathe it was such a shock....so I didn't really listen to anything he said after that!

- Chemo is such a big decision, I'm glad your doctor is giving you the choice. I haven't been offered it at this stage but I think my doctor wants to wait for the CT. he is also having my tumour re-tested at his hospital which is a specialist cancer hospital in the Uk (Christies) so we will see what comes from that. If I can avoid it I will but even if it will give me a 5% better chance of the cancer not recurring I'll take it. When have you got to decide by if you want it? When is your surgery? Is it keyhole?

- Please can you share the name of the facebook group you are in (in private message if you're not allowed on here)?

- I know what you mean about thinking it's happening to someone else, I've been like that for 3 days and today is the day it hit me properly I've been freaking out all day trying to read everything online which has not helped!!! (apart from finding this thread!). I live an hour away from my family but my mum and sister came with me on Monday and have promised to be there for every appointment going forward. My mum had breast cancer coming up to 3 years ago, she was stage 2 and had to have surgery, chemo, and radio. I don't want to put too much strain on her and don't want to keep going on about it because she keeps telling me not to worry and stress myself but its hard not to do that. I asked her how she lives with the worry of it coming back and how she can look to the future and plan for things in the future but she says you do learn to live with it (I suppose that's all you can do!). My husband is very logical, very focused, his response has been unemotional 'we don't know anything until you have the CT and your bloods come back so don't think about it'....whilst he is right I'd like a bit more emotional support! He isn't like that though so I wasn't expecting him to be to be honest. It's just the way he is. 

- I am on facebook yes, I'll try and message you a link to my profile. Please add me. It's nice to talk to someone who is going through it and you know so much!

- I had fertility treatment four years ago, I had one round of clomid but it sent me crazy so we decided to stop treatment (or end up splitting up because I was constantly angry!). Not sure if that helped cause this which is why I'm reluctant to try any further fertility treatment. I've been referred back to the fertility hospital, there's no harm in seeing what our options are and talking to them about side effects but I want to give it at least 6 months for my scar to heal properly before I even think about it providing the CT/bloods are clear). As a last resort one of my sisters has told me she will carry a baby for me as a surrogate (my egg/husband's sperm) so I have options even they are extreme.

- Thank you for the advice you are absolutely right, you could get hit by a car tomorrow so you need to live you life, even with this hanging over your head. That is a brilliant mindset - thank you.

- I'm so relieved your biopsy was benign! I bet you were terrified with everything else on your mind. That's something at least, one less thing to worry about xx

Hi Haylie

I was diagnosed 1c three years and five months ago.  Post surgery I've had two CT scans and they were both clear.   My doctors tell me I'm completely disease free but I need blood tests to monitor me for recurrence, which can happen.

There's more information here and a link to FB.

http://www.gctf.org.nz

Hi Haylie, Kitkat is giving you some great advice, and if you are after some positive news, here goes! I was diagnosed 1c2 after the cancerous one of my two ovarian cysts burst late Feb whilst I was waiting for a biopsy.  I had the GCT diagnosis early March, and have just had the March and  June results together - CA 125, Estradiol and Inhibin. All are fine. I have been told I have a good prognosis, and maybe an 80% chance of never having a recurrence - I call that pretty good odds. 

I have had some people suggesting chemo, as it ruptured, or to at least get a second opinion, but I trust my Consultant who has several non- recurrent cases, and says that chemo isn't necessary, and he had some patients that have taken over twenty years for it to come back, as well as some where it hasn't. 

I'm 53 and live in Devon, where are you based? 

Haylie, 

So happy to help in any way I can. I don't feel like I know enough! I'm grateful to the group you just joined. Those are some knowledgeable and strong women! I have also tried to do as much reading as I can but only from reputable sources like national cancer institute and NIH and GCT and Ovarian Cancer Foundations. 

About the leaked cells. There's not evidence one way or another but my doctor said that the leaked cells don't tend to thrive since out immune system will fight them. But he said it is unknown how those leaked cells can inform recurrence. I guess I would encourage you not to be shy to ask how the procedure is done. I had the same anxiety and my surgeron explained exactly what happened in the operating room, including how they did the washing and how much liquid they used while doing the washing. This made me feel better that they had done everything possible. 

I will share that there is a clinical trial going on right now at the cancer center I'm going to where they are studying the impact of flax on recurrence. Flax is known to slow down the division of cells so the theory is that by slowing down division of abnormal cells, it gives your immune system the time to fight off the abnormal cell so it doesn't further divide. Jury is still out but the first round of the trial showed reduced recurrence rate in women who were eating flax. I figure what can it hurt! The flax meal is supposed to be easier for your body to digest so I've been sprinkling it on my food every day. It's doesn't have a lot of flavor and has a texture like Parmesan cheese (the sprinkle kind) so very easy to work in! Here's a highlight of the trial: 

www.siumed.edu/.../could-flaxseed-prevent-recurrence-ovarian-cancer.html

My tumor was cut during surgery because my fertility doc did not know it was cancer. When it was opened, the cells spilled into my abdomen and they called for a consult with an oncologist. He was concerned as well as a pathologist so they removed the ovary and did washings, which were positive for cancer cells  there is no way to know if they were positive only due to spillage or other reasons. That's tough to deal with - the unknown. This spillage is part of the reason for having the staging surgery. I also want to know what I'm dealing with because I'm interested in doing an egg harvest before chemo and if there is spread I will not want to delay the start of chemo. 

I don't know what you believe and such so this may sound a bit nutty to you, but I think it helpful to meditate about the bits that scare me, sort of "willing the unhealthy cells away". Something like: to my nodule on my lung. I don't know why you've come here. But you've served your purpose and it's time to go. 

This helps to calm me down and also I do believe in mind body connection so even if the only benefit is relaxation and sense of control, I'm all for it!

I am having all the blood tests and my doc agreed to add AMH to the panel which I'm really happy about. I think I will repeat every three months unless something climbs and then more often (monthly). 

I think someone else recommended this but taking someone with you who can take notes is sooooo helpful. My friend did that and things were said that I don't even remember at all!

chemo is a big decision for sure. I'm so glad your doc is sending your samples to the specialized lab so you'll have the best knowledge of what you are dealing with.  My staging surgery is scheduled for Thursday the 13th of this month. Once we have the findings from that we can make the final chemo decision. He wants me to heal for at least three weeks from staging before further treatments so that gives us some time to think through things. The surgery will be done robotically and laparoscopically (key hole) so I feel very grateful for that!

My mom is also a breast cancer survivor of 30 years. Your conversations with your mom sound the same as the ones I have with my mom! My husbands style is very different than mine also so that can be challenging! I'm so glad that your mom and sister will also be with you every step of the way. 

I've heard the first cycle of clomid can be the worst and that was certainly my experience. But the hormones and emotions improved a lot by the second round for me. And I think it is wonderful that your sister has offered to carry for you and I don't find that to be extreme at all. There are many ways to have a family. That's something I'm coming to terms with also and it isn't easy but im hopeful to have a family one day, no matter the road to get there. Trust me - I have not always felt that way. Feeling like it was some kind of deficiency on my part of we could not conceive naturally. It's been a long road and I know I have much more to go. 

Thanks again for talking with me. It's so helpful to talk to another person my age with so many similar struggles. 

Katie xo

Hi Ribera, Lizziebet,

I'm so pleased you haven't had a recurrence, it gives me hope that I'm not 'doomed' due to the rupture. Thank you for sharing that with me.

Lizziebet - I'm in Manchester.

Kitkat, I will again reply to your post in stages. I hope any other women who are reading this will gain as much knowledge as I have from your posts.

-The Facebook group and GCTF.org.nz sites have been so helpful. Thank you so much for pointing me there. The ladies in that group have helped me so much in the space of just a few days. I was re-reading my posts on this thread and I can read the panic in my voice, I'm so calm now and that's just through learning what I can from yours and their comments and posts so thank you again! 

-I've asked my oncologist the question about washing and staging, I've asked a lot questions that have come out of our conversations on here! I'm waiting to hear back, although I'm not sure what I will do with the information once I know it. I think I will wait for my first CT and blood results to come back before making any decisions. A lady I spoke to on the group mentioned she tested positive after hers ruptured and she said she didn't have chemo, she takes anastrozole and megace every day. I haven't looked into these or done any research on it but I thought it was worth a mention to my oncologist when I see him.

-Your comment 'that's tough to deal with - the unknown' is EXACTLY how I feel. But this is the hand we've been dealt and there's nothing we can do about it. I've come to accept that over the last few days. I've given over control of it if that makes sense? Knowing and accepting I will never know if it's going to recur has helped me in a way. From my earlier posts you can see that I was panicking and obsessing but I'm just so relaxed about it now. I think we need to realise that we will never know in order to move on and accept it. I was looking into statistics and percentages of recurrence with a stage 1c but then I said to myself that the statistics have already f****d me over once because I'm 30 and the majority of ladies get this when they are late 40s/50s so the statistic mean nothing! There's an advert on UK TV at the moment by Cancer Research and it says "a life with cancer is still a life" I've said that to myself so many times over the last few days and it's helped.

-I will read up about flax, I have some ground flax at home when I went on a health kick for 1 day (pre all this!)  hahaha, maybe I will start eating it again, as you say it's not going to harm is it. I'm also looking into Turmaric and I've read that giving up eggs could be good for hormone/ovarian cancers. I need to do my research properly I'm even considering privately consulting with a cancer nutritionist. Even if it doesn;t work and the cancer recurs it's still good to be healthier.

-I absolutely agree that the mind and body are connected. I keep thinking to myself that I've caused this, or at least not helped it. When my mum got diagnosed with breast cancer almost 3 years ago I have been 100% adamant that I'm going to get cancer. Skin cancer because I have freckles and used the sunbed a few times, breast cancer because of my mum, cervical cancer because I had some abnormal cells removed in 2012. I've just been so paranoid, the only cancer I didn't think of was ovarian but I've got that now and a rare one too!! I am trying to not worry because I'm afraid I will mentally cause a recurrence so I'm going to obsess about something else like the gym or learn a new hobby to keep my mind off it.

-Re taking notes - I'm going to take my mum, she has experience with cancer (sounds bad saying it like that!) and she's also a nurse so I'll ask her to do it. A lady on the group suggested getting a copy of your results ahead of your appointment with your onc so you can highlight anything and compile a list of questions. I think its a good idea if you can mentally deal with it, I think I will obsess over it too much but I'm willing to try it, if it doesn't work and makes me worry more then I'll stop but taking charge may help?

-How do you feel about your surgery? I will be thinking of you on the 13th x I hope the recovery time isn't too long! Please let me know how you get on either on here or private message xxx

-When you had the tumour removed I take it you had full open surgery like me if yours ruptured? I have a scar from one hip bone to the other I was back at work after 5 weeks and back at the gym last week (spinning). There were times I thought I'd never be right again but I ran up the stairs over the weekend (couldn't do that before!) so that tells me I'm healing well and I should be back jogging in no time. Are you fully recovered from that surgery?

-Having fertility problems and then finding out you have GCT is heart breaking, I know how you feel. After my failed first round of clomid my husband and I have got used to the idea of not having a baby and we have put it off for years expecting to pay for IVF privately when I'm 33/34 (that was our plan anyway!). Now I'm not sure what I want to do and I can't bring it up with him yet. I think I will do it for him if he wants to but in my head I've come to terms with the idea that it won't happen for me. I really hope it happens for you though. Adding chemo to the mix makes the situation seem more urgent. Would wanting a child stop you from choosing chemo?

-Hearing yourmum has survived breast cancer for 30 years is AMAZING! What strong lady she must be you must be so proud of her! My mum is my best friend, when she was diagnosed my heart literally broke. I even had this 'mental' thing where I felt like my throat was closing, after all the investigations and doctors taking a look at me I was diagnosed with 'globus histuricus' which is the feeling of a lump in the throat /closing of the throat when there's nothing there. It's stress related. It went after about a year but that's another example of how the mind and body are connected. I've been expecting it to come back since my diagnosis but nothing so far - fingers crossed.

-Thinking back to how I felt about my mum going through surgeries and chemo I just keep thinking about unfair this is on my family, like the worry of it.I feel guilty that I'm putting them through it :-( I also keep thinking of my poor husband. He has just turned 29 so he's 18 months younger than me (but he is definitely the mature one of us both!). I keep thinking he didn;t sign up for this. A wife who can't give him a baby and now has to live a life with a wife who needs constant monitoring, potential further surgeries and potential chemo. If I said this to him he would tell me to shut up! But I still think it. Do you feel like that?

Haylie xxx

Lizzibet,

am on IC1 stage, as mine ruptured 0.5cm during the keyhole surgery, then they changed to open surgery. i had my left ovary and tube removed. the doc asks me to do chemo, but am really worried about chemo. did u do chemo also? can you give me some advice? thank you in advance.

Hi Foreverlinas, no, I was told chemo wasn't necessary or worthwhile in my case, but I do know that everyone's different.  They told me that there was no sign of nasties in either the fluid they took out of me, or in the cancerous cyst which ruptured, so I'm hanging on to that. It seems the chemo can't tell the difference between the harmful cells and the good ones. Not sure where you are based, but reading various posts online, it seems that the US seems to suggest chemo or chemical washes washes where the UK doesn't, not sure why. I did have one or two people suggesting  I get a second opinion or consider asking for chemo, but I trust my doctor. His wife has had cancer, so I figure he has a more personal viewpoint than most. I guess you have to have a conversation with yours and find out what makes him think it is right for you. I think it's good to be as informed as you can be, so ask why he is suggesting it, and what the pros and cons are. At the end of the day it's your decision, but his job to give you all the info possible to make it wisely. I think it helps to have as much info as possible, so do some of your own digging and ask people like us, but don't trawl everything, pick and choose what you read, and if you don't like it, stop!  I like to see the positive stuff and learn what works, as well as hear good news, and take comfort from it, but choose not to read the other. There is a very good chance for both of us with this stage, so I figure Ill take that and keep thinking positively!

Sorry it has taken me a while to respond, I havent been online in a while! Strangely I have my second three month blood test results at hospital tomorrow, where I hope that I will get another all clear, so keep thinking positive thoughts for me, and I'll do the same for you! 

Hope that helps, let me know if there's anything else I can tell you, but reckon you'll be fine! 

Dear Lizziebet,

thanks for your kindly reply. I was so frustrated when I know I got GCT. My surgeon she didn't tell me anything about my situation, what exactly happened during my surgery. she asked me to do hysterectomy and right ovary remove, I refused, as am 34yrs old and am not married yet. then she asked me do chemo asap, without explain anything, that makes me feel even worse. so I had to see the second doctor, and tmr am going to see the third doctor. and I also search online, wanna hear different opinions from others. it is still hard to accept what happened to me, but im also a positive person, hope we all doing well and getting better. Best wishes to you. Xxx