Any body in here with Clear Cell Adenocarcinoma ?

Hi ladies

This is my first post in here. You will have to excuse my english, it's not my first language. I am from Denmark. I was diagnosed with Clear Cell Adenocarcinoma in aug. 2015. Had a 6 hour operation where the removed all in Sept 2015. it was a stage 1c. There was found no spreading at all, anywhere, but the cyst (had multicysts) bursted during the operation. I have been through 6 lines of chemo (carbo/taxo). Last chemo was 8th of feb 2016 and have just got a ct-scan with contrast and is waiting for the result (1.st of march)

As time goes by, I am getting more and more anxious about the result and my future. I have googled this rare cancer (1-2 in Denmark per year) and it's not positive ! 70 % survive 1 year and 35 % survive 5 years... Now I have stopped googling as it does me no good. Is there anyone here with the same diagnose ? I was found BRCA negative

Ulla

11 Replies

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  • Hi Ulla!

    I don't have the exact same kind as you, but I can understand the anxiety you must be feeling waiting for the results of the CT scan and thinking about your future. At least when you're going through chemo, you can just focus on that day-to-day. Then, suddenly, you're left on your own to worry. It's very difficult. I think you will find a lot of good support and advice here. Sometimes you just need to talk to people who have been through the same thing. I wish you all the best - please keep us posted! I have my follow-up CT scan on 1st of March, same day you are getting your results - so I'll be thinking of you!

    Kerry xx

  • Hi Kerry

    Thanks for your reply. Yes, when going through chemo it's difficult to focus on anything else, but that an now it's like free fall. I also think I have changed emotional - I can weep to movies/stories as quick as I can snap my fingers and that is new to me. I don't know if it's the chemo or just becaurse I have been going through rough times. I lost my husband to cancer 1,5 year ago and only one year later I was diagnosed. I live far away from my only child and it has been tough living alone through this chemo hell. I am now looking for a new place to live near her and my two small grand children (she and her husband are helping) I would have moved earlier, but then I got ill with this damn thing. I am by the way 60.

    I will be thinking of you too on the 1.st of march xx

    Ulla

  • Hi Ulla, the waiting is always the worst. But they do get in touch sooner if they need to so no news is good news. I often think when the scan is over, well whats there is there and I cant change it. When you finish treatment it seems all supports are gone. But look and find more. When you settle in your new area, check to see what supports are there for Ovarian Cancer or if there is a support centre in the New Hospital you will be attending for check ups etc. The macmillan nurses are great and you can also ring the Ovacome Nurse attached to this site. Wishing you the best with your results. Make sure your notes are transferred to the hospital you will be attending. I imagine your daughter has a gp in mind for you so have your gps notes sent there. We are alway here for advice no matter where you go.

  • Dear Ulla, so sorry it's taken me so long to reply! I was at the treatment centre all day trying (unsuccessfully) to get my last round of chemo finished. I'm very sorry to hear you've lost your husband to cancer so recently, and with living far away from your daughter and grandchildren, and dealing with all this on your own, it's no wonder you are weepy and feeling low. Plus the chemo itself and the steroids can make you feel low as well, on top of everything else. I am very far from home too (living in Manchester, England while all my family and friends are in the USA) and it's a very lonely thing to go through, I know. You have my sympathies! Sending a big hug to Sweden.

    Kerry xx

  • Thank you so much for replying again.

    From the time my husbond was diagnoced and to when he died took 2 years. He was a warrior - allways positive, all though he had lost from the beginning. Our home was filled with people from Norway (he was Norwegian) He was a singer and a entertainer and had such a big carisma. I am a nurse and he was never admitted to hospital. I took care of him at home as he wanted (with help from the Swedish health care) He died in this room. The emptyness from him is like ecco. I had some help in the beginning, but wasn't open when I got the diagnose, I didnt inform anyone, but my family and 2 friends.

    I have allways been a very strong and independet person, but I didnt know what I got into. I have worked for 30 years at intensive care, but know nothing about cancer, exept from taking care of my husband that had oesophagus cancer.

    Right now I am not a nurse, but a patient, but people think that I am strong, course I am the one that comfort my family - they don't know a thing and I have to explain..

    I have spend two days in here, trying to find some with this desease and had to dig 4-6 years back in time to find some. They have written the same as me: Is there anybody in here with clear cell adenocarcinoma oc and they seem to be gone now. No replies for 1-2 years. Are they all dead ? I am wondering :-(

    I am sad to hear that you are alone too and that your family and friends are even farther away. I sadly know how you feel and send you my sympathies as well.

    Why didn't you get your last chemo, was it your last blood test ? My last chemo was cancelled becaurse of that, but one week later is was ok. I hope you will soon recieve the last chemo and get this done !

    Big hugs from Sweden to England xxx

    Ulla

  • Sweet Ullaboo,

    Please don't think the worst about not hearing from Clear Cell survivors 1-2 years post diagnosis. A fair number of survivors are very eager to get on with their life and not revisit Ovacome or similar sites at all. Since my twin was diagnosed in march 2015, I was amazed by how many colleagues, neighbors and close friends either 1. Had dealt with cancer in their past, or 2. Had a spouse, child or sibling battle and win the fight-but never shared their story / history until I or she started being very vocal about what my twin was going through. It was amazing! I very much got the impression that once a cancer patient gets better, they don't want to talk about it, and move on with the rest of their lives.

    So it could very well be that the Clear Cell survivors you seek simply never visit this site anymore.

    Ullaboo, 1 in 3 men and 1 in 4 women develop cancer at some point in their lives. This is a lot more common than you think. YOU have just chosen to be brave simply by reaching out and talking about it.

  • Dear Ulla, I've read this post so many times now and never know what to say back. It makes me cry. I'm so sorry for the loss of your husband and that now you are struggling to cope with your own illness on your own. It's just not fair. I wish I could say something to help but for now I will just send my warmest wishes and a big hug.

    Kerry xx

  • Hi Zuzuki

    Thanks for taking your time to write to me :-). I live in Sweden and my daughter lives in Denmark (I am danish). I work in Denmark and travel back and forth every day (well, haven't been working since the operation)I have recieved treatment and operation in The biggest hospital in Copenhagen, Denmark and I am looking for a place to live nearby, so everything will be easier. My daughter lives 5 minutes from that hospital.

    After the diagnose, the operation and during chemo, I haven't had the strength to do anything about it, and wasn't able to move eighter.

    xx Ulla

  • Hi,

    Clear cell is usually 1C according to my oncologist, and yes it is fast moving and has the lowest response rate. However. I was diagnosed in 2012 and have had three years disease free until a recurrence. It's about 5% of OC diagnosis and therefore has the least investigations, because of that the stats are not terribly reliable.

    I'm having chemo at the moment, but have to say prognosis with no spread for a good remission is high

    LA

  • Hej Lily-Anne

    Thanks for your reply. It was new to me that Clear Cell almost allways is 1c. I was told by the operating doctor, that the number (1) stands for spreading. If it's a no 2 the tumour has spread, but only near by, a no 3 is with metastases to other organs. The letter (c) stands for the possibility of cells that could spread and later grow. She told me that I got the c, becaurse the cyst bursted at the operation table. They washed me and sent for microlab and they did not find any cells. They also removed fat under my belly and sent for microanlalyze and nothing there too. All my lymph nodes (40 removed) and nothing there.

    But you are maybe right, becaurse the Clear Cell OC always grow on the ovari and inside a cyst, if you understand what I mean. I will dig into this on my consultation next week.

    I have thought a great deal about having a DNA test done on me and on the tumour. It's not possible here, but I know there is a place in London. It costs some money, but could be of a great value to me, if this beast shows up again, so the doctors know what cure is the best for me. Is this something you have thought about or discussed with your oncologist ?

    I am so sorry that you are going through a new chemo ( I hate that chemo) and I wish for you that the side effects will be minor and that it will kill every good damn cancer cell xxxx

    Send warm thoughts your way

    Ulla

  • Dear Ulla

    I'm so sorry to hear of the loss of your lovely husband and so quickly and unexpectedly, and of your isolation and very much hope you can move to be near your daughter soon, and being near your grandchildren too will, I'm sure bring more joy. Obviously you need to be very gentle with yourself as everything you've had to manage in a very short space of time means that you're far from your best both physically and psychologically. I'd strongly recommend you have a psychologist or counsellor or therapist to support you because of the level of trauma you've experienced. There is good evidence to suggest that the psychological trauma of having cancer is greater than the physical side of having cancer. It's important that you find someone very experienced with working therapeutically with people with cancer and that you feel a trust and like that person - you may need to have a couple of sessions to judge this - and go on your gut about what's right for you.

    I too have clear cell stage 1c. I was diagnosed in Nov last year and had everything out as you did - though there was no mention of removal of lymph nodes, which you have prompted me to check. It is great that your lymph nodes, omentum (fat on your belly) and your washings were clear - this is really good news. My cyst burst prior to the operation, and while my omentum, womb and cervix were fine, my washings were positive which means the cancer is more likely to have entered the blood stream, so the fact that your washings were clear is excellent news and you were treated in an excellent hospital, which is also great news. I am not sure about the DNA test - do you mean for BRCA? I am currently low risk for that, so it has not been offered to me and I have not requested it. You may find this website useful for checking your risk: cancer.gov/about-cancer/cau...

    I do not know what the projected survival rates are for our diagnosis as I haven't found figures of our diagnoses, which are different anyway as my washings were positive - but I do know that they are much higher than the figures you're quoting. What I do know is that cancer survival rates are so individual and many people surprise oncologists with how long they live. There are things we can do to help prevent recurrence and extend our length and quality of life - surgery and chemotherapy are the obvious ones, but there are lifestyle and other changes we can make too - physical activity is very important. Nothing is a guarantee, but we may be very pleasantly surprised. I can recommend two books to read: "Anti-cancer" by David Servan-Schreiber (you can look at the book's website first anticancerbook.com) it gives an excellent evidence-based, i.e. summarises all the research up to 2011 on cancer prevention from a holistic point of view, and "Radical Remission" by Kelly Turner (http://www.radicalremission.com/index.php), the book of the research of what people who stayed alive much, much longer than was expected, did to achieve that. Also someone else has recommended you contact Macmillan & Ovacome - they've been an amazing help to me.

    I wish you the very best with your journey with all this. My heart goes out to you for the loss of your husband and your lack of support. Support is so important - apart from your daughter and friends, I'd really recommend finding psychological/therapeutic support as I mentioned earlier, and a support group for people with cancer or a cancer centre to go to. Even if they don't have them where you live, they must have something in Copenhagen that you can go to when you visit your daughter.

    Lots of love

    Sundra

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