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Suspected ovarian cancer

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l70044privet
l70044privet

Hi all, will try and keep my story short.  Ended up in A&E 2 weeks ago today with suspected appendicitis, turns out I have a very large ovarian mass measuring 29x19x28cm, CA125 levels are also raised at 212.

Had a CT scan that night and a transvaginal US last monday.

Saw gyno yesterday and have now been referred to another hospital to see a gynaecological oncologist and for the operation, (total hysterectomy etc)

They did tell me yesterday that they suspect cancer, mass is fluid but does have 2 small solid parts in it,  my lymph nodes in my abdominal area are slighty enlarged, a small amount of fluid in my abdomen and  omentum is showing signs (cant remember what as i was in shock by this point), but by the looks of it, it has not spread.  

The horriblest part of this all is the not knowing and that they can only suspect that I have cancer

Im now absolutely scared out of my wits

0 likes, 26 replies

26 Replies

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  • Guest
    Guest l70044privet

    Posted

    Please try and not think the worst. I just went through a situation and I was driven by fears... sudden tests...and surgery. Most cysts, even complex are benign.

    I'm at work now but will write more later.

    Did you do a ca125 blood test? Is ovarian cancer in your family?

    Many people here are going to help you.

    You are not alone!

    ???

    • l70044privet
      l70044privet Guest

      Posted

      hi, 

      thanks for your reply, 

      it is true that you can go to bed thinking about it and waking up thinking about it, been doing me head in eek

      Need to get back into the pool, thats my stress reliever, even with a very large belly rolleyes

      to our knowledge there is no history of ovarian cancer in the family

  • Guest
    Guest l70044privet

    Posted

    Oops.. sorry! Just saw your ca125.

    Okay. It can be raised for many other Non Cancerous reasons.

    Checking back with you later.

  • Guest
    Guest l70044privet

    Posted

    Oops.. sorry! Just saw your ca125.

    Okay. It can be raised for many other Non Cancerous reasons.

    Checking back with you later.

  • lulu92858
    lulu92858 l70044privet

    Posted

    Hi,

    Thanks for sharing your story and sorry to hear you are going through it at the moment.

    I still don't have any answers and so it's probably best to hear back from others with more current and similar experiences/diagnoses to yours, but I just wanted to let you know that you're totally not alone in going through this. I don't know if you've seen but there are lots of other posts on here and other sites from others going through something similar.

    I hope you have a good GP/Gyn that you can get answers you need and deserve from but I think it's a positive step if they're operating quickly. Your body needs you right now so do your very best to stay calm and not panic/stress as that is absolutely poison to the body and will certainly not help.

    Please keep us updated on here and if there's any way to help..

    Sending you a big hug! xx

  • aged-too-fast
    aged-too-fast l70044privet

    Posted

    Sorry you are dealing with this! It's important to know that the CA125 test is not accurate at diagnosing ovarian cancer. This is clearly backed up by medical literature. Benign / non-cancerous cysts and tumors (as well as other benign conditions) can cause an elevated result. Fluid in the pelvis doesn't always mean ovarian cancer either. For one, cysts can rupture or develop slow leaks.

    I was in your shoes (although with a smaller cyst) 10 years ago at age 49. I was over-treated and have been suffering the negative effects ever since. I made the big mistake of letting the fear instilled by my doctor dictate the course of events.

    Bottom line, he removed all my female organs even though the cyst was shown to be benign by frozen section (done while I was in the operating room). He should have done a cystectomy (cyst removal), sent it for frozen section and then sewn me up when the frozen section came back benign.

    Unfortunately, unnecessary hysterectomies (uterus removals) and oophorectomies (ovary removals) are common in a number of countries. In the U.S., 10% at most are done out of necessity.

    I personally wish I had sought out another surgeon when my doctor told me his treatment plan. Knowing what I now know, I also would have revised the surgical consent form to specify what could and could not be removed under what conditions (e.g., don't remove any parts if the cyst is benign versus remove all if cyst is malignant).

    Although we are led to believe that we don't need our organs after childbearing years, that is a fallacy. Our organs have life long non-reproductive functions and are essential for many aspects of health and well-being.

    If your cyst is PROVEN to be cancerous then it would make sense to remove organs. If you have a family history of ovarian cancer then you may want to have your ovaries and tubes removed IF you have tested positive for the BRCA1, BRCA2 or Lynch Syndrome gene. Some women elect to keep their uterus in this situation (Angelina Jolie did).

    There's a woman here (screenname justfromerica) who just had a 26cm cyst removed and she still has all her parts although it sounds like the cyst had not overtaken her ovary. But some doctors with good cystectomy skills may still be able to peel your cyst away from your ovary and save it. 

    Unfortunately, we have to advocate for ourselves because we are the ones who have to live with the consequences.

    I hope this helps! I will be happy to share more details about the negative effects if you'd like.

    • top00104
      top00104 aged-too-fast

      Posted

      Hi I just remembered what the GP said when I questioned her about why they were removing my uterus the whole works. She said that I did not need them any more. Now with what I have learnt I will tell her how wrong she is. I thank you for sharing the information  of how important the ovaries are, if they can be saved
    • aged-too-fast
      aged-too-fast top00104

      Posted

      Ugh! I hear this all the time and it makes me angry that they treat our sex organs as disposable! I can certainly attest to what happens when they're gone! Of course, it doesn't help that we refer to them as "reproductive" organs even though we don't use that term for men's sex organs. Grrr! Our organs work as a system...remove part of the system and it doesn't function properly (even after menopause).

      Removal of the uterus (or an ovary or tube) can permanently disrupt ovarian hormone production (even causing a surgical / ovary removal type menopause). But just as important, removal of the uterus oftentimes impairs bladder and bowel function because it displaces those organs and the uterus is no longer there to separate them. Chances of these problems (urinary and fecal incontinence, prolapse, cystocele, rectocele, urethrocele, enterocele) increase as time goes on. The vagina also tends to collapse (vaginal vault prolapse) over time since those ligaments holding the uterus and vagina in place are severed. 

      A woman's figure / shape also changes because the four sets of uterine ligaments are the pelvis' support structures so the midsection collapses / settles after those are severed.

      Last but not least, women who experienced uterine orgasms will no longer have them after their uterus is removed. I can attest to that and it's extremely disappointing especially since the removal of my uterus (as well as my ovaries) was unwarranted. But I have absolutely no libido either so not much sex going on any more! Also disappointing. Thankfully, I have a supportive husband.

      Another thing to know - Abdominal surgery causes adhesions and the more extensive the surgery (the more cutting that's done) the more adhesions you'll get. Those can cause problems such as pain, pulling sensations and even bowel obstructions down the road.

      It's important that all patients advocate for themselves since they will suffer the consequences of treatment including over- or under-treatment.

      Unfortunately, the high rate of hysterectomies and oophorectomies leads women to believe that they are benign surgeries when they are not. Of course, there are cases when they are necessary and there are no other options. 

    • top00104
      top00104 aged-too-fast

      Posted

      I would like you to know how much I appreciate all information you have given, and what you went through, sorry that you had to, but with your experience and knowledge has confirmed what I believe about the body function. I will keep you posted for final results about my treatment Thanks again

       

    • aged-too-fast
      aged-too-fast top00104

      Posted

      Thanks for your kind words. I'm glad when I came help other women. I hope all goes well for you!

  • didi1956
    didi1956 l70044privet

    Edited

    My ca 125 was raised too and mine wasnt cancer some people have ca 125 in the thousands. They suspected cancer with mine too but it wasnt . I had a 37 cm on one ovary and a 3 cm on the other ovary. Most cyst arent cancerous. Can I ask how old you are ? They really cant tell until they get in there and operate. Its been two and a half months for me  . Im 63 I had a total  hysterectomy and im doing great.Try not to worry i know its hard but you dont know if there is anything to worry about. There are a lot of us on here that have been through it any questions feel free to ask. I wil keep you in my thoughts and prayers
    • l70044privet
      l70044privet didi1956

      Posted

      Hello

      thanks for your kind comments, Im 39, big 40 in Dec,  

      37cm blimey!!!! and i thought mine was big

      As the nurse said yesterday big does not necessary mean bad 

      but as you have said they dont really know until they operate

      it also doesn't help that i have a really big phobia of hospitals/procedures, blood pressure rockets etc will need to learn calming measures before pre-op

    • justfromerica
      justfromerica l70044privet

      Edited

      This was my first surgery yesterday in my whole life and I was scared. Also my first time going under.

      It really is a piece of cake and I'm not the best at medical stuff either, hence why I never go to the doctor...

      Two and a half weeks ago when went for mt

      Ultra sounds my primary doctor requested blood to make sure my kidneys were functioning. On top of just getting news about a large mass inside of me, I bursted into tears and statted hyperventalting. I told them I was bad at this and that I needed to lie down. That didn't calm me dowm, so I had to go physically pick up my spouse and have her there with me. Still lying down, still crying, the nurse waited 30 minutes until I said go ahead. Was not as bad as I thought, because the initial sting is what gets me, and then thinking of the blood coming out. Later that day with my CT scan I had to have contrast intervenously put in - so yay, another needle! I didn't know this in advance so once again, started crying. The tech said my spouse could come into the room as long as she wore a xray gown. This time,

      took about 15 minutes before I have her the okay, and it was a much bigger needle but didn't hurt after the intital pinch.

      Fastforward to my pre-surgery consult where they took 10 viles of blood. This time, no crying, but lots of heavy breathing until it was over. Making progress!

      Fastforward to yesterday, where I went to surgery prep without my spouse at first, where I got an IV for the first time, in two different spots. Luckily they numb the area first but it is still a needle. After surgery I had several anti-inflammatory shots in my shoulder, hip and one to prevent blood clots in my stomach. All stung and burned, but I just laid their calm and on my own! Nurse also came and took more blood and I just sat there, no crying, breathing normally and after a small prick, it was all fine.

      This might not seem like progress to some people, but I've gotten pricked and poked more times in the past two days and last week than I have in 5 years. My heart rate has been very elecated as a result but I think I overcame my phobia because I had no orher choice.

      Thinking about the surgery is far worse than the actual surgery. I tried to watch videos online whicn only made it worse. Its done and over almost as quickly as you first close your eyes.

      You'll do better than you think you will! smile

    • didi1956
      didi1956 l70044privet

      Posted

      I  think you need to decide if its not cancerous what you want  removed and discuss it with your surgeon .Just the affected parts and nothing else. you are tougher than you think and you will get through this. I had been dieting for a good year trying to lose my huge stomach( doctor said bigger than a basket ball) with no luck after surgery I lost 30lbs.  I was smaller than I had been in years something good to show for the pain lol.
  • justfromerica
    justfromerica l70044privet

    Posted

    Hi there,

    Sorry you're going through this. As aged-too-fast mentioned, I'm the one who just had a 26cm cyst removed, literally yesterday morning. Forgive any spelling errors as I am very loopy with different narcotics in my system at the moment.

    I was just as shocked as you are when I found out about my cyst, as I went for a routine check up as I hadn't been to the Dr. in a while and be felt somerhing in my abdomen, next day, I came back for an ultra sound and revealed a "large mass" taking up my total pelvic and abdomen area.

    Now that I'm thinking back, there were a few signs (huge, pregnant-bloated stomach) that I chalked up to weight gane, some occasional upset stomach and getting out of breath easily. I'm only 24, and although large cysts are more common than you would think, they are a bit more rare in younger people.

    I was originally told through the CT scan that I had serous cystadenoma, fluid-filled and 99% benign. However, they sent for more bloodwork for more pre-surgery which came back normal, and they collected a sample during my surgery yesterday to sent out to pathology to know for sure it isn't cancerous.

    The surgeon said it would be possible that my right cyst and fallopian tube will have to be removed. However, upon inspection when they did the surgery, they realized the cyst was not attached to anything. The surgeon said this likely means it was a functional cyst on either the ovary or the fallopian tube that broke off and just continued to gross. Thus, they were able to save all my organs.

    A gyno oncologist is the best option for you. Mine was not suspected to be cancerous however I opted for a referral to a gyno oncologist suregon at the best hospital in the SE of the US - UAB in Birmingham, AL. I loved the surgeon, and all the staff are wonderful and I felt like I was in the best care. Even though I had to have a laparomory versus keyhole surgery (there was no room in my abdomen to put a camera in) the surgeon took the cyst out using only 5inch incision on my bikini line, versus a vertical cut from my belly-buttom to the pelvic bone which is what I was expecting. It took 2 days to get a consult and she was able to schedule it 12 days after the fact for surgery. They marked it as urgent given the size.

    I don't have any experience with the possibility malignancy in cysts but I beliebe there are a few members here that have had similiar situations. One that posts freqently is didi and she had suspected

    cancer in a whopping 37cm cyst that turned out ro be benign.

    If you have any questions regarding surgery or the largness of the cyst, let me know! Best of luck smile

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