Germ Cell Tumour

Hi, my name is Tania, I'm 38 and I'm waiting for a accurate diagnosis of what is believed to be a germ cell tumour. I have a 12cm mass on my right ovary, elevated levels of AFP (2.5) LDH (500odd), HCG (6.1) and ca125 216. I have enlarged lymph nodes in my aorto node (56mm), enlarged 4cm in left pelvis node, 22mm on my bowel.

I've been told this rare form of cancer is very sensitive to chemo but I need to get there first. I have waited 9 weeks as still have no answers from referral and only found out the above last Monday. I've chased and chased for my biopsy results which took them two weeks to decide to complete because of Bank a Holiday and a further two weeks to get the results in!

I am going tomorrow for the results unless they are inconclusive of course. My worry is that now I have enlarged nodes, it's advanced and whilst my ct shows clear organs (liver,lungs, stomach and omentum) this was 5 weeks ago and I'm going out of my mind to know the staging and start treatment before it gets to stage 4!

I have two kids aged 14 and 11 and a wonderful husband who experienced the loss of his mum to cervical cancer at 57. My family's experience of cancer is one of loss, pain and suffering and I'm the strong one who pulls us all through and now this. My kids and hubby may not be strong enough for this so I'm trying to hold it together. It would be good to hear others experiences for reassurance and I feel like they will let me die due to the delay for something I thought I'd caught early. I had no symptoms but had a car accident and had physio and felt hard in my stomach when I was laid on my front, a trip to the doctor to check said lump and here I am 9 weeks later! Thanks in advance for any replies. X

12 Replies

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  • Hi Tania, sorry you've had to join us but this group is amazing with lovely ladies here who have all the types of ovarian cancer, all stages and grades and at all milestones of treatment and survival. You sound as if you've had to wait some time even to get to this stage of your referral which isn't good.

    I take it from your post that you have had a biopsy - it seems a long wait for the results - did you get a telephone call re the germ cell tumour or is that what was suspected during the biopsy surgery? Hope you do get full picture tomorrow. Write down all your questions and try and have someone with you to note the answers and to prompt with the questions you want to ask but which will go out of your head as you have your meeting !

    I expect you will have some sort of surgery? Most of us have had that - I didn't have a biopsy but after having a CT scan at the end of Jan I was fast tracked referred and seen within a week then followed by a series of other scans and meetings before having a full total hysterectomy , removal of Omentum and a surprise appendix removal on 8th March.

    I was diagnosed two weeks later (after the full pathology results came through) and received my news in a telephone call!! That was surreal. I have clear cell which again is one of the rarer ones but we are all in the same club here!!

    I started chemo on 5th April and have had 4 so far - if you need chemo then there are some great posts here re preparing for it etc. You can search at the right time for you!

    You already have a bad experience with cancer with your hubbys mum which is not good - cancer comes with its ups and downs but you can find strength within yourself and others which is amazing and the caring and wonderful people that appear is uplifting. My hubby has been amazing and friends and family have stepped up and made me feel very special - I've never had so many presents and felt quite weird at getting another one!! Still that made them feel as if they were doing something so I learnt to accept them without feeling too bad!!

    Ask, ask and ask again, get your questions written down - I went armed with two full pages of A4 paper with all my questions and my researched points for clarification to my first meeting with my Oncologist !!

    I have no children however your two are old enough to want to know some of what's going on - there is a lot you can share without being too scary for them. Im sure that other ladies on this site with children will share their experiences of talking with their children.

    You may feel alone but know that we are here for you at all times of the day and night. Take a deep breath and tomorrow will come soon enough.

    Take care and let us know how you get on tomorrow

    Clare X

  • Our minds are our worst enemy when we have to wait for anything. From visit to doctor to first chemo was about 11 weeks and I was convinced everything inside had quadrupled in that time. You have had a long wait. Think of the positives especially that your cancer is very chemo sensitive as that will bring you amazing results. I've just had an excellent response to chemo and I've been told that puts me in a very good prognosis group. I wish you luck and hope the wait is not for much longer. Tracey x

  • Hi Tania. Sorry to hear of the issues facing you and the delays you have experienced. The waiting is the pits but hopefully tomorrow you will have answers and a plan in place. Im nearly 9 years on from diagnosis and as you can see still here, still fighting, currently in third remission (3 years in August) . I imagine your children and husband are stronger than you think they are, I know mine are although I worry more about how all this effects them more than it affects me. If you have questions, no matter how trivial you may think they are please ask here as there are lots of ladies willing to share information and experiences, or if you just want a rant, a place to let off steam, this is the place to do it, we've all done it at sometime. Sometimes its easier to let off steam here or talk about your fears etc with others who know what you're going through. This is also the place to share good news and belief it or not have a laugh. Please do let us know how you get on tomorrow. We are all supporting you (and each other) sending you a big virtual hug, Kathy xx

  • Dear Tania, I want to send my thoughts and good wishes to you too. I suspect that your dr will not only explain the problem but discuss a date for surgery. I waited a few months between knowing I had a cyst and that I needed an op for the Drs to actually operate. My head was a mess, my family my main concern. Then post op I waited 5 weeks for chemo to begin. One of my questions was whether these delays mattered and in my case I was assured they did not ( for both chemo and surgery).

    At 1 point the hospital called and said they could bring the op date forward but I declined as I had already set up childcare arrangement ( mine are 6 & 12). Being told that your cancer is chemo sensitive is a real bonus. Many ladies on this site have chemo and I for one have no idea whether it will work or whether I'm putting myself through this for little gain. Every time I loose more hair or feel a pain I picture any evil cancer cells conking out too. Like cartoon, nasty purple grapes with angry faces ) I know it's quite mad).

    Mums are usually the strong ones in the family. We tend to take charge. But sometimes we have to take a step back and let our loved ones take the strain. How do they know their own strength if we don't let them look after us?

    I fell asleep yesterday afternoon with my head on my sons lap. When I woke up I saw that My little girl had put her teddies around me. My husband fed them supper and washed up. They looked after me. Now they are shouting at each other!!!

    Good luck for tomorrow. Please go with someone to help you ask all your questions and help write down your doctors answers. I have found so much support and kindness on this site.

    T. X

  • Hi Tania,

    Like you, I'm 38. I'm stage 3, but I don't know what kind of cancer it is. I had the surgery Claire mentioned last Monday and am at home recuperating now. I pretty much second every point she has made in her post, so I dont think there is much more I can add, other than to let you know that you aren't alone in this. My kids are 7 and 4 and my biggest fear was that I was going to die without seeing them grow up. I don't feel that way now, and I hope your medical team get you sorted asap so that your fears can be lifted. xxx

  • Dear Tania

    Let's hope you get some positive news tomorrow about what treatment you will receive. I think sometimes biopsies can take quite a long time. In my case my tumour was so rare it had to be sent to Belfast for analysis, but fortunately I was unaware that this was happening and had assumed that after my hysterectomy and oophorectomy that was the end of the matter. It was more of a shock to my recovery to be told six weeks later that it was a granulosa cell tumour. However, I have been one of the lucky ones.

    Very best of luck for tomorrow,

    Anne xx

  • Welcome Tania, I really hope next week will be the one to reassure you or give you a treatment plan. It is a good idea to have company and also write down any questions that come into your mind before then. Try not to worry, you shouldnt have had to wait this long or had the upset of chasing stuff up for yourself but nothing can be done about this. You may or may not feel like saying it at the consult, perhaps you should if you want. If you need chemo well chemo is doable so take it from there. There are lovely ladies here on this site to help and answer any questions you may have as well..Best wishes

  • Hi Tania.I fully understand your fear and worry,it's a life changing experience.I doubt if your cancer will have progressed aggressively in the past weeks.The Oncology team will have a plan of action for you.

    I'm stage four since 2014 and still going strong.You have taken care of your family and shielded them when necessary but now you have to "Allow" them to take care of you.Your on the right site as the ladies here are a fantastic crew and give comfort and advice and even a few laughs when needed.

  • Perhaps this is relief and maybe you are already relying on the chemo, radiation etc.

    I was diagnosed with tumor on the bladder opening. I had the tumor removed surgically and then went to work researching wholistic measures. What I found was

    tremendous. Truth About Cancer series for one. Another is the hydrogen peroxide

    therapy FOOD GRADE only. I am so happy to not have gone on with the chemicals.

    I am feeling great and lots of energy. I was facing incontinence had I had the second

    surgery which was supposed to go into the muscle and see if it advanced. Truth.

    Cancer does not live in oxygen. Cancer is stopped by not eating sugar. Cancer loves

    sugar and thrives with it. Tumeric tea done correctly with pepper is a deterent.

    We have turmeric tea every night with little stevia and perhaps little lime. It is

    wonderful. If I were to share my thoughts on all this medical stuff, I would be asked

    to leave this site but I want to share with as many as possible that there is another

    way. Also, your mindset is so important. As you go through the days, pray to God

    to give you PEACE, STRENGTH and positive thinking. I do not accept the word Cancer.

    I will fight wholistically with fruits, vegetables, good water, my therapy program.

    the book "The One Minute Cure" saved my life and hopefully many others.

    Wish I could offer more but there are alternatives to all this stress you are under.

    Macar

  • Tania the waiting was the hardest part of this journey I am on, I was told after my laparascopy that I had cancer but not fully diagnosed for three weeks, due to know one agreeing if my carcinoma was gynacolical. I was diagnosed with primary peritoneal stage 3c and started chemo back at the end April.

    I had a ct scan last Friday and apart from the surgeon going through my original ct scan results and telling me I had a small spread to the bowel wall prior to starting chemo, I have had a fantastic response to chemo and will have my surgery on Wednesday. Always remember all the ladies on this site are their for you and understand how anxious we all get when waiting for results as they have all been there.

    Ellsey xx

  • Hi everyone, firstly thank you all for your support and replies!

    So here goes with the update -it's stage 3 Disgerminoma germ cell cancer and they want to start chemo Friday. Will be having BEP form of chemo for four cycles so it will be about 12 weeks with a stay of 5 days in Sheffield per cycle and a day visit on day 15. After the chemo they will operate and removed the ovary and maybe the lymph nodes but will have to see if they shrink before that is decided.

    Safe to say the side affects and potential risks were frightening but I am glad I have a start date.

    It's quite overwhelming that this has all become very real and I am facing the next hurdle. Despite my own hospital being pretty useless in the referral and testing area, Sheffield have been fantastic and transferred me to the germ specialist for the Monday just gone's consultation, chemo doctor yesterday and 1st session begins Friday.

    I now hope and pray that my body reacts to the chemo and I come out the otherwise without any major side affects. My heart goes out to you all and that we all have the strength and ability to face the challenges thrown at us. I will keep you updated.

    Thanks again

    Tania. Xx

  • Great news that they have transferred you to the Germ specialist; the rest us a lot to take in. There is nearly always an unreal feeling about the testing and even the diagnosis and sometimes with me , it's as if I'm viewing myself through a window ! It's probably worth you copying your last update and posting it as a new post as unless the other ladies are following your initial post they won't necessarily see this latest update. Chemo is manageable and the main thing us that Ufan you are sick or nauseous afterwards then to ring your Unit as they can change your meds!

    Take care and keep updating as it does help!

    Clare X

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