My name is Lydia and I am from Greece, but living in Germany for the past 3,5 years. I was diagnosed with a serous borderline tumour and non invasive implants in early 2014. I was 28 years old at the time. CA 125 was 550 u/l and the doctor really scared me before the surgery by saying she was almost sure it was cancer. I had a surgery (laparotomy) then and the tumour was removed and subsequently had a second surgery (also laparotomy, this time the length of my abdomen vertically) where they removed one ovary, the omentum, the appendix and parts of the peritoneum. The idea was to keep one ovary and the uterus because I was still young.
About a year later there was a new cyst with solid characteristics and since the doctors in Germany wanted to do a big laparotomy again and I heard that in Greece it was possible to have it laparoscopically removed I went to a greek hospital and doctor to have the surgery. About three weeks before the surgery I got an incisional hernia on the upper part of my scar. During the surgery two cysts with borderline tumours were removed and the hernia was repaired. The greek gynecological surgeon insisted that it was not necessary to have the ovary and the uterus removed.
A year later of course a new cyst with a tumour appeared. This time I searched more and found a doctor in Germany who did the operation with the DaVinci laparoscopically, he removed the tumour along with some other growths that had enveloped one of my ureters and after clearing out adhesions that were mostly because of the first surgeries he removed the ovary and the uterus on which non invasive implants had grown. At that point they inserted stents in the ureters to keep them open, which were removed 5 weeks after I left the hospital. These stents caused me considerable pain and discomfort.
I am now 30 years old, 2 months after the last surgery using an estradiol gel for hormone replacement and I have been feeling terrible. I have been talking to a psychologist-oncologist but I don't feel better, in fact I feel worse. I feel unmotivated, helpless, hopeless and that most things are pointless. I have tried to get an appointment with a psychiatrist or behavioural psychologist, but in my area they have no time for new patients and their waiting lists are 6 months to a year. Every time I make an effort to find help and I get these answers it just drains any willpower and energy I had and I feel even worse. I talked with a GP about it and he gave me some antidepressants, but I have not completed a week yet since I started taking them. I don't have any specific questions to make, at this point I just don't know what to do. I know the medicine needs about two weeks to have an effect, but I am afraid it won't work. I am generally pessimistic about everything though, which is something I was not before and it really blocks me from doing things.
Thanks for reading my long post. Any suggestion would be welcome.
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I was so sad to read your story, you have obviously been through a lot. I am 53 and had a hysterectomy on 2 June this year and now undergoing chemo. Obviously it is not the same for me as I am a lot older, but all I would say is that you do have to keep positive, be optimistic, it can be your biggest weapon to fight this horrible disease. The mind is an important tool, you have to believe that the anti- depressants will work and you will feel better. Stay strong and believe that you are through the worst and things will get better.
I was so sad to read your story as you've really been through the mill. I'm not sure I can offer you much advice other than to try & wait out this next week or so to see how you get on with your new drugs. Is it possible for your GP to perhaps refer you for some counselling so you can be seen earlier?
I'm 33 & was diagnosed with a borderline mucinous tumour in June this year after it was removed under the guise of a 'cyst'. I had a second op 10 days ago to have the ovary & appendix removed (& omentum biopsies) & have since had positive results that everything has come back clear.
I'm wondering whether it's the estradiol gel causing the change in your emotions/feelings (coupled with the trauma & worry too I'm sure).
You've found a wonderful community here who are all wonderfully supportive & knowledgeable. I wish you well Hun & hope you start feeling more yourself soon.
Hi Lydia, I'm so sorry to hear you are feeling so low.Believe me this is natural to feel like you are, after all you have been through such a lot.
I am much older than you but after surgery and chemo I felt very low, my oncologist said It was like being on a roller coaster and when all treatment has finished this is when depression can hit in.
Please give your anti depressants time to kick in (about 2wks in my case) but they do help to lift your mood. Do you have friends you can talk with, go out for coffee with or even walks with. Walking helped me so much I felt much better outside the house and of course it built my strength up too.
We are here for you Lydia it doesn't matter how many times you write someone will be here for you.
Thank you all for your kind comments. I don't know why this is so hard on me and partly this makes me feel worse, because I am thinking I should not feel this way, after all I didn't need chemo or radiation. I am trying hard to make believe that none of this is my fault and it is a combination of hormonal imbalance and psychological trauma, but there is a weird thought process that keeps me in the ditch. There are moments where I don't feel so down (but not really happy either), but most of the time nothing gives me the joy or pleasure I would normally get before all this. I used to do a lot of sport and outdoor activities and now I cannot even force myself to go out for a walk. I have gained weight and I am not even making an effort to eat healthy. I am literally waiting it out although it feels like it will never go away.
As far as friends go, I moved to a new location with my partner three months ago and I have no friends in the area. I am also currently unemployed. My partner is very supportive but there is only so much he can do. He goes to work on weekdays and when he is home he tries to engage me to do activities and to go out, but I don't respond well. And as I am writing this, I am thinking "well, just get up and do things dummy", but the inertia is huge.
Thank you all for reading and replying. Thank you so much.
I am so very sorry that this has happened to you at such a young age.
You have had the shock of the diagnosis , four major surgeries , some recurrences and you are dealing with a health service in another country. It would be incredible if you were not feeling very very rough indeed. One general anaesthetic can take a year to recover from.
I had two laparotomies in 5 months in 2010 for the removal of a large borderline tumour and this took ages to get over. I also found the emotional side of things extremely hard.
I found that doing more and thinking less really helped.....but you are still a very short way into your recovery and you must be able to physically heal before you can exercise. I also found that a computerize self help course based on Cognitive Behavioural therapy called " living life to the full" really helped. Healthy treats and time in the fresh air and nature were great. I would also suggest that you have your oestrogen levels measured as the response to oestrogen products varies between individuals. Finally don't worry about the weight issue , I was 48 when I had my surgeries and am now at the same weight I was before I was operated on. Once your hormone levels stabilize and your abdominal muscles repair you will feel like doing more. Also try to persevere with the antidepressants , after two to four weeks you should feel a lot better. Tro to remember that because you have had all your female organs removed yor risk of recurrence is now as low as it can be.
I really wishes there was more I could say....but six years on I cannot overephasise how hard the recovery is after these surgeries.
Dear Lydia, You've taken a wonderful step in coming here. You will find encouragement, comfort and friendship here. You will, and it's going to help you a lot. You've had a rough three plus years, but you've gotten this far; you'll keep putting one foot in front of the other and do the next needful thing to keep yourself going. Coming here will help you do that.
I'm a person who believes in prayer; you can count on mine.
My heart truly goes out to you. When I hear of a young woman going through all this it breaks my heart. Do not despair though. I known you feel so low now but hard as it is to believe it will pass. The other ladies have given you very good advice so I will try not to repeat. My own little tips may help. I see that you are not working now and also have not got to know anyone yet. That alone is enough to floor anyone never mind all you have been through. Keep talking to the psychologist if you can. I found mine invaluable. You have had so much surgery you must be suffering from post traumatic stress disorder. Is there a support group you can join ? Maybe you could start one in your area and meet fellow heroines who have gone through all this .,I found doing a Mindfulness course great as it made me focus on the moment and it stopped me thinking of the past and too much of the future., If you can't find a course you can look online or get books on the subject. Your anti depressants will work very soon and I promise you will smile again. Take care and all will be well.
In my experience the lack of motivation, loss of normal pleasure and your pessimistic outlook are classic symptoms of depression and anxiety . These are real mental health illnesses, as real as any physical illness. They are not an indication of your strength of character or something you can control but an organic change in your body.
As others have said you have had multiple physical and emotional traumas during the last 30 months. You have experience many losses not least the loss of your health.It sounds like everything has been very hectic as you have been obliged to search out the best treatments.
My psychologist warned me that the time we are most at risk of depression is when treatment comes to an end. Suddenly we are alone with our illness. All the emotional stuff that we have not had time for comes piling in and stops you in your tracks. I know it can be totally overwhelming.
However I promise it does get better but that takes time and help. When you are used to being in control and resolving problems your self this can be very difficult. Take a breath, let go and let others take the responsibility for a while. It is not defeat but strength to stop running and you deserve a rest.
I tried to find support groups, but I have not had any luck in my area. This is the reason why I decided to register and post in this forum. It might sound stupid, but it somehow also feels different when I hear all these things in german. Having some kind of support in english or greek is more helpful. I will try the online resources that have already been mentioned.
I am currently in Greece visiting my family, so it will be easier to let go and let others take the responsibility. I actually wrote the first post while I was at the airport waiting for the 1:30 hours to pass till boarding started. Today I have been a bit better, talking with my mother and taking it easy helps, as well as reading all of your messages multiple times.
Hi Lydia ive been thinking about you a lot since your first post. Good to hear you are visiting your mother and hopefully you can unload how you are feeling to her. Hopefully this will help you to see things more clearly and give you the little push you need to help get you motivated again. I know it's very hard but just take one day at a time. Enjoy the sunshine in Greece, it helps to make you feel better.
My best wishes
Lynda x💐 X
it's likely each of us have been where you are.
i've little to add except advice to make yourself focus outward part of each day, even if you need to use an alarm clock to do it--from 1 to 2 pm each day i'll spend in writing my feelings down, or walking, or at the local library. whatever...but i'll have a plan and will follow it.
again, you're not alone. for any who post, many are reading...and sending you warmth and hope.
Hi,Lydia. So glad you're feeling a little better. Just a word about antidepressants. There are many different ones that work in various ways. Prescribing the right one for the right patient is not an exact science. Hopefully you'll get real help from this first lot, but just in case you don't you should prepare yourself to perservere in getting your doctor to find what's best for you. I've taken them for many years and they've made a great difference in my life.
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