Germ Cell Immature Teratoma Treatment

Hello Sadiex89

I am sorry to hear that you have had a diagnosis of ovarian cancer. I hope that you are recovering well from the surgery you had 5 weeks ago.

I had a hysterectomy that included removing my ovaries and fallopian tubes last year due to womb cancer. I had chemotherapy afterwards and that was followed by radiotherapy. 

In my case the decision regarding further treatment was not made until after the hysterectomy when everything was sent to pathology for checking. It took around 3 1/2 weeks for the results to come back and those results meant I was recommended to have chemo. I was not expecting to be told that- I was expecting possibly a bit of radiotherapy so it all came as a bit of a shock. 

However I did as they recommended and had both. The thought of it was very frightening at the time but I did get through it with support from family, friends and people on here. I am now out the other side and finished treatment last year. I have regular check ups and by having the chemo and the radiotherapy I know that I have done everything possible to prevent the cancer coming back. 

You said that you are finding that there is mixed information on line and I found the same. I googled a lot and I recommend that you don't do that as a lot of the information out there is not up to date or accurate. I have found a bit of information on Macmillan and if you go right down to the bottom there are some links that may be of help. It's in the section getting support.

Germ cell ovarian cancer | Macmillan Cancer Support

I hope this helps a bit

Jane

Thank you Jane. I have now been told that I will have chemotherapy. I will likely have BEP and possibly 3 or 6 cycles, can I ask how many you had?

I have an appointment with my consultant on Thursday to understand when treatment will start.

I am nervous about the effects it will have but its far more important to ensure it doesn't return. 

Hi Sadie

I am sorry to hear that you need to have some chemotherapy. Its good that you have an appointment with your consultant on Thurs and they will be able to go through everything with you. My chemo didn't start until 6 weeks after my hysterectomy as everything had to be healed inside. I had 4 cycles (21 days each) of paclitaxel and carboplatin. In my case it was followed with 5 weeks of radiotherapy. 

When you have the appointment on Thursday they will ask you about your understanding of your cancer and they are making sure that you are fully informed so you can give consent for the treatment. I found it quite scary when they started to go through the side effects but in reality they have to tell you everything otherwise you are not fully informed. Looking back I would liken it to when you are prescribed antibiotics or given paracetamol- if you read the leaflet inside about everything that can possibly go wrong - its frightening but actually I found that the vast majority of the side effects I was told about did not happen to me. They will also likely to talk about infection risks etc and what to do if you feel unwell. I was also given a phone number for 24 hrs a day for problems. 

In reality the thought of the chemo and the worrying about it before hand was worse than my experience. Having chemo is not great but it is manageable and once you get the first one out of the way it felt easier for me. 

My main side effects were tiredness, upset tummy, aches and pains, tingling hands and feet. I had a sore mouth and sore eyes and was given medication. They adjusted my chemo dose part way through to reduce the side effects. I did have some hair loss- thinning all over but used the cooling cap throughout. 

On my chemo consents appointment they felt my tummy, checked my healing, took bloods and height and weight. The height and weight is for the dosage of the chemo. 

Hope this helps a bit, but any questions just ask . Good Luck for Thursday.

Jane

Thanks Jane, that's so helpful. I've looked at the BEP information on here and the side effects are frightening! But it's great to know you didn't experience all of them.

I am a really practical person so I've booked my eyebrows to be microbladed tomorrow and have an appointment with a wig maker on Thursday after my consultant. I want to try and limit the physical changes in how I look as much as possible. 

My nurse mentioned the cold cap, but says it's quite painful? I will be on IVs for 3 days 6/7hrs a time and I'd have to wear it for the whole time. I may give it a try just to see how it goes.

Did you have a change in weight? I've seen people gain or lose. Did you manage to do day to day things OK? I live alone with my two children and a labrador and I just wanted an idea of how I will manage day to day things.

Thank you so much for your help. It's really insightful xx

Good Morning

Eyebrows are a good idea. I didn't do anything with mine as didn't think of it in time but I am really fair so I managed. You can draw them on but because I kept a lot of hair and have a fringe - it is only when I look back at photos I really notice them. 

I had a wig as well. I was able to see a lady who came to my hospital every Wednesday alongside a hairdresser. I felt it was important to have one on standby. I wore it a couple of times- more to get used to it than anything but managed without it due to the scalp cooling. I also had scarves on standby. 

The nurse is right in that the cooling cap can be found painful by some people but I think it is better to talk to people who have used it. Even if they are trained, you sort of need to experience using it for a few hours to feel the full effect.The cold cap feels intense and I found uncomfortable for the first 20 minutes. A bit like pressure/brain freeze. You can take paracetamol an hour before and that makes a big difference. You need to tell them obviously. After that your head feels sort of numb and you don't really notice it that much. When it comes off at the end of the day it feels a bit of a relief but it was more the tightness. I had it on from 8-5 each time I went in. It certainly was bearable as soon as the first 20 mins has been done. I recommend giving it a go. If they put it on and you don't like the sensation- a bit like a tight swimming hat- then they can turn the machine off straight away. The benefits for me outweighed any initial discomfort. I had chemo through the heat wave last year and on a couple of the times it was actually quite pleasant to keep a bit cooler!. It does add a little time at the beginning and end of the treatment but in reality during those times I needed to be there as they were doing bloods, giving pre meds and at the end of the session we were talking through side effects, discussing medication etc and finishing the day with a cup of tea. It was also helpful to talk to the nurses and other patients during this time. It also gave them time to check I wasn't having any sort of reactions etc. 

With weight I did drop during some cycles but averaged out the same overall. It depended on how I was eating and how my tummy was. I was on a 3 week cycle and found that I was rough for the first week and couldn't do a lot. Pretty much snoozing on and off on the sofa. 2nd week I was still feeling weak but could potter around at home and was up and about a bit more. 3rd week I was able to go for short walks eg local shops. I live alone but have family near me and I did need a bit of support. I would have struggled to walk a dog and sometimes I could be doing something and the fatigue and weakness would hit me and I would have to lie down. I think that maybe that is something you might need a bit of support with to make sure your dog is able to have walks, or maybe someone to be able to go with you. I normally walk a lot and I definitely would have felt too shaky to do it.

Are your children old enough to help out a bit? Around the house. Things like hoovering up, changing bedding and just being around when you want a shower- these are the things that helped me. I also did online grocery shopping to make sure I was stocked up- lots of light, snacky type foods. 

Everyone is different with chemo and it can effect people in different ways. I did find the effects accumulated each cycle so by the last one I did feel pretty rubbish. They will give you a diary/book on your first cycle and its a good idea to record how you are feeling in it each day. It helps when you have your oncologist review each cycle but my symptoms tended to follow the same pattern so it helps that you know which days you may need a bit of support and also when you do feel rough it gives you a guide to when things will feel a bit better.

Hope this helps. Good Luck for Thursday.

if there is anything else please do ask. 

Jane

i have stage 1 germ cell and will start taking BEP this Monday I froze my eggs just this past Monday just in case 

Hi Angie,

Oh I'm sorry to hear that, my second cycle starts on Monday so I will be right there with you! How are you feeling about it? 

I won't lie, the 5 days are hard, physically and mentally! However by day 10 I was feeling well again, this week I've felt completely normal, my energy levels are fine and I've been able to do all of the normal life stuff. 

If you have any questions at all please just ask, I'm not sure if you do tiktok but I have kept a daily journal on there... @blueprintofyou is my name on there.

Best of luck to you on Monday, will be thinking of you x

Hi Sadie,

I also had this type of cancer at stage 1a, I only had my left ovary removed where the mass was and germ cell mdt decided for me not to have chemo. instead for the past 2 years I have had Ct and mri every 6months and bloods done every 2months. All has been clear. I was told by the germ cell consultant that after 2 years the likelihood of the cancer returning dropped to around 2% which considering how rare it is, is positive news!