Has anyone been in the situation I am where surgery is a huge risk

My gynacologist would of operated on me to take biopsies, but I am a very significant surgery risk, so I am having an MRI scan how accurate are these, as I know biopsies are the only really reliable diagnosis tool, My CA125 has gone from 40 to 52 I have a simple cyst an enlarge right overy and another growth on top of my uterus, and don't know yet if I have cancer. VERY WORRIED !!!!!!!

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  • Hi Diana,

    An MRI scan can sort of characterise tissues and what they look like. A 'simple' cyst is full of fluid, and fluid shows up as a specific colour depending on the sequence used (either black on some scans, or white on others), and the cyst wall is usually smooth and rounded, sort of like if you fill a balloon with water. If the lumps are other than a simple cyst, it does get more complicated, as they often have mixed signals, a mixture of fluid and solid matter, and these will show differently on the different scans. If there is blood there, again this looks very specific on the different scans, and does depend on how old the blood is, as it does change characteristics depending on the age. If you have had a history of endometriosis, then you can get an endometriosis or chocolate cyst, which has blood in it. If it has smooth edges, like the simple cyst, then it's possibly a benign cyst. If the walls of the lump are smooth, then it's a better sign, as although it could be malignant, it may still be an early stage. The scan will usually involve an injection of a contrast agent part way through the scan, and this enables further tissue characterisation, making it more likely a definite diagnosis can be made. I had a CA 125 of 88, and a 25cm mass on my right ovary, and had a history of endometriosis 16 years ago when I had a hysterectomy. Unfortunately, I was told my ultrasound, MRI and CT scans were all 'inconclusive', but I do suspect they showed that the lump was malignant, as it showed I had enlarged lymph nodes as well. I had my surgery on April 2nd, and found out at the end of April that it was malignant and a stage C.

    What I'm trying to say, is it isn't fool proof, but the different sequences can give an idea of the sort of tissues involved, and also information about the surrounding tissues (which a biopsy often can't do), and is probably the scan that will give the most information outside of surgery.

    Sorry to have waffled, had my first dose of chemo today, and can't sleep.

    It's a crap time all the waiting, but try not to worry, and keep yourself busy. I threw myself into so much during the waiting time, and it does help, honest. Even cleaning seemed better than doing nothing.

    Love Sally XX

  • Dear Diana,

    I think this is good news. My Oncologist says he needs bloods, physical exam AND scan to diagnose cancer. Yours has your exam and bloods -the scan will give the rest of the picture. I don't think biopsies are the best diagnostic tools any more. Sally's useful information above supports that.

    Your CA125 is not v high, and I'm told that many inflammatory processes will elevate it - doesn't mean cancer necessarily.

    I hope they get on with getting you the answers and any treatment you need.

    Best wises,

    Isadora.

  • Thank you both so much, I wish I could have surgery to be honest, I just feel I want everything taken away so it can't do any harm any more. I know it may of done already, but my natural reaction is Take my uterus overies and the cysts test them, and then I haven't got them anymore..... I know this option is too risky for me, unless they are almost certain I have cancer they won't op

    They think my large overy maybe as I may not of gone through menapause yet, I am just 48 but ovulation doesn't hurt for weeks on end surely. And I can't see an overy being that enlarged naturally but I admit I am no expert.

    He thinks the cyst I have had for years is a simple one. It is 4.5cm then there is a swelling on top of my uterus he thinks it maybe a Fimbreal Fibroid (Sorry that spelling is wrong)

    Does anyone know about them, can they be malignant?

  • Hi Diana,

    I felt just the same about getting it out of me! I was lucky in that I could have surgery. Can you tell us why you can't?

    Ironically, I didn't find my stage 3c cancer with large tumours on both ovaries was at all painful! I know that fibroids often, if not always, are!

    Have a look at this site: repmed.com/fibroids.htm

    Your elevated ca125 could be because of fibroids. When I had ovarian cancer, mine was 600, and others have had counts up into the 1000s. It is considered 'normal up to 35. Apparently, it fluctuates with many women at menstruation, and fibroids often put it into the levels you are getting.

    I think I see why your doctors are hesitating about surgery. It seems that fibroids are benign, common and painful.

    Poor you!

    I hope they get you answers and helpful treatment very soon. In the meantime, look after your basic health (diet, sleep, stress levels and immune system) and find out what you can do to take control of some, if not all of these things.

    Very best wishes,

    Isadora

  • Hi the reason I cannot have surgery without EXTREME High risk is I have a very rare blood clotting illness LOW PROTEIN S and I am on warfarin & aspirin I would have to come off those (after about 15 years) and be on mini heparin, during any surgery, they are concern about the high risk of post op clots with me, due to my condition, Also I am not fit, I am 48 and 18 stone and at 5ft 2" that is not good, I am on a healthy eating plan, and have lost 2 stone, I was 20 stone I am almost totally inactive, I haven't walked or exercised in about 15 years. So I am a risk.....

    They have bought my MRI forward and I am having it tomorrow at

    4.15pm I don't know when I will get the results. But I have to say I am worried.

    Thank you again for all your support it means a lot to me.

  • I had my MRI scan on Friday and I am really scared about what the results will be. Have any of you had pain in the whole of your womb area and NOT had cancer ?

  • Hi Diana,

    Yes! As I said before - the cancer caused me no pain at all. It's known as 'silent' because it often has no symptoms. I understand your fear, and what you need is information. Can you ring your nurse specialist and at least find out when the results will be available?

    Sorry to read of your problems, but do what you can to feel better by taking control. I hope you have good news - and soon.

    I.

  • Hi they have said from my MRI my simple cyst is unchanged & it seems I have an endrometrial cyst that has "bled into itself." It does not look malignant, & there was a team of experts looking at my scans. They want to do a blood test to see if I have gone through my menapause as I don't have periods as I had an ablation, some years ago.

    But someone tell me:

    1) They have told me these cysts can change to malignant. ANY ONE had this happen on this forum?

    2) Has anyone has a endrometrial cyst bled & what was the treatement.

    At least I have more hope than I had yesterday, I hope I don't go through the menapause for many years LOL

    Many thanks for your support.

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