The blessing and curse of Stage 1

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Young_and_unstoppable
Young_and_unstoppable Member Posts: 3
in Ovarian Cancer #1

I am new to the Cancer Survivor Network. I came here to find the support that I have been missing during the worst six months of my life.

In January of 2015 they found a cyst on my right ovary during a routine yearly exam. Four weeks later my ultrasound showed it had grown to 7 cm. Four weeks afer that I had surgery. I was told at the time, or possibly by family because I was still coming out of anesthesia, that my doctor thought it was a dermoid cyst. It was 8 cm, but they had to take out my right ovary along with the tumor. 

At my two week check up my doctor told me that there were malignancies in my tumor. Quite frankly i'm not sure what else he said to me because my brain shut off. I had to go visit an oncologist. Something that made it seem so much more real. My CT scan, ultrasound and blood work has all come back normal after my three month visit.

I was diagnosed with Stage 1 ovarian cancer. By the time I knew I had cancer, it was already gone. There is no support for people like me. We arent survivors. we got lucky with the date of our doctor appointments. Sure my family was scared, but now that im okay it just seems like soemthing of the past. I had an ovary removed and it scares me to death thinking about something happening and not being able to have children one day. I am only 21 years old. I am living in constant fear, because I dont know what pains are normal anymore. The nurse says to stop worrying so much, but how can you not when I missed all the symptoms the first time. Yes I have to get blood work done every three months still and visit my doctor, and I have chosen to get ultrasounds done for my sanity, but what happens 5 years from now? or ten? I've read about recurrences. One study showed that most recurrences happened after 5 years. 

It's also hard, because I know a lot of you have probably been diagnosed with stages 2-4, have had to undergo horible treatments, and have had a much worse time with this than I have. Stage 1 sucks because you are being told you had cancer, but you are fine now so dont worry. If only life were that easy. Four months from my surgery and I am still not sure if I have recovered. especially emotionally. I am left with all these thoughts about having to live my life to the fullest and get depressed at how ordinary everything is and not wanting to die before I get to actually live my life. 

I cant talk to my family. I have tried counseling. I just need people that truly understand what I am going through.

 

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  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #2
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    You are a Survivor

    You are a survivor and whether you were Stage 1 or not, you still had cancer.   I know what you  mean.  Its like you are stuck between this and that.   Who will take you seriously when you have symptoms?   Because you are so young and they say it was all removed, the doctors and nurses dismiss you.   You are stuck in limbo.

    All I can say to you is to live your life   It sucks either way.   I was diagnosed with Grade 2, Stage 3a endometrial adenocarcinoma which they happen to find after a routine hysterectomy.   They got it all.  I did go through treatments.  However, they were surprised and to this day I don't exhibit the "normal" symptoms.   I have changed doctors many times since my original doctor retired   Don't let them push you around.   

    I also feel like I am in limbo (even though I currently have a stable mass), I don't show any symptoms that they seemed concerned about.  I do complain about stuff.  It is frustrating.

    Be free to vent here.  Its a good place because no one else understands your concerns and fears.  And when people hear you are clear, they think you just go on like it never happened.   As we know, thats not the case.

    If anything I have learned from all of this, worrying gets you no where.  I wish I could remember the quote someone posted here about worrying.   But I think it was "dont worry about the things that haven't happened yet, or the things that can't be changed"  Sorry I can't remember it.

    Please take care and I found out it helps to keep a medical journal of stuff you are feeling and appointments, etc.   It takes off the pressure of worrying.

    My best to you.

    Kathy

  • anicca
    anicca Member Posts: 334 Member
    #3
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    Also Stage 1

    I know what you are talking about.  I knew I had cancer, but 2 doctors blew me off before a third saved my life.  I was positively elated when I woke up from surgery to hear it was Stage 1, because I was sure it was all over me by time I had gotten help.  I was fine all through 6 rounds of chemo, then the anxiety about a recurrence hit me hard.  I suffered with that for about 2 years, gaining weight like crazy from the fear.  Then I was once again extremely lucky, and got into a study at NYU on the therapeutic use of psilocybin to treat anxiety in cancer patients.  It was one of the most wonderful experiences of my life.  I no longer have anxiety, though I do still have the occasional thought about it, if I have abdominal discomfort.  I am able to handle it rationally.  The study has been over for about a year now, but I highly recommend meditation to you for dealing with your fear.  The closest experience I had to the psilocybin trip was a 10 day retreat at a Vipassana meditation center.  If you can afford to do that (timewise, it is free), and if you keep meditating, I believe you will get great relief.  You can find out about free Vipassana meditation instruction at Dhamma.org.  I don't come to this board often anymore, but you can email me at dibazerATgmailDOTcom if you want more info.

  • Mwee
    Mwee Member Posts: 1,338
    #4
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    So glad you found us

    You are asking the same questions we all have when we were diagnosed. We all experience a feeling of loss of control and being alone. Here we really do understand and it doesn't matter what stage, treatments, surgeries etc. Any of us have had to go through. I'm a 9 year survivor diagnosed 3C. Don't get caught up on outdated statistics you see on the Internet. Wecome... (((( Hugs))))) Maria

  • Lily_Anne
    Lily_Anne Member Posts: 39
    #5
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    Stage 1 for me

    There is no history of cancer in my family so when I was finally referred to a consultant it was a suspected simple cyst on my ovary, the surgeon came to see me and said everything pointed to a cyst with endometriosis two weeks later I had a call asking me to attend clinic, I assumed it was to discharge me so went armed with a thank you card. It's a long story but it was cancerous within the cyst, I was told a 95% chance it would not be cancer. I then after some deliberation agreed to more surgery to remove second ovary, tube, womb, cervix and omentum. Plus biopsies from the bowel and sigmoid colon, histology was negative.

    I had one dose of chemo but then decided it wasn't the direction I wanted to take for cell mop up. I was considered curative. All has been good for 3 years with a low CA125. In May my reading came back at 47, at diagnosis it was 34. In July 102. It could be movement, it could be thyroid, it could be liver.

    Who knows the future?

    Emotional recovery took me about a year, no more babies, even though I hadn't planned any more, it was a matter of choice. Every twinge had me in mild hysteria. Now I have no idea how I feel. Weird I guess. Is there a tumour or am I suffering from stress. My thyroid is artificially supported with thyroxine. I'm concerned but it's a waiting game.

    You are not alone in your fears. Please don't waste the amount of time I did on tears and have a ball. 

    I booked a holiday for 3 weeks time just after my next CT scan. Party time for me with my poor stressed husband.

    LA xx

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