Complex Tumor, words of advice needed

Posted , 8 users are following.

Hi everyone,

I know nobody can really help me or tell me how things are going to go at this point, but I just need to get out these feelings and hopefully hear some other similar experiences.

To make a very long story short, I had a cyst rupture 2 months ago, but the gyn wasn't concerned, it happens. 1 month later I started having symptoms again. The gyn said I have a 5cm complex tumor and has told me I urgently need a CT scan and had me do the CA125 test. I have an aunt who had ovarian cancer. I'm only 32 and I have an 8 month old son.

If I only had mild symptoms, i'd likely not be concerned. However I have a lot of very extreme pain in my hips, low back and under arm on the same side as the tumor. I take NSAID's and prednisone for an autoimmune disorder and they do not even touch the pain. The hip pain is only at night, but I wake up in total agony, unable to even move for 5 minutes.

Has anyone experienced awful pain like this with a benign complex cyst? I would love to hear some reassuring stories, but I am also open to to hearing those that didnt have a positive outcome, as I want to be prepared. Thanks!

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  • Posted

    hey jo, i'm 33 and also have an autoimmune disease, i'm on pred a few times a year and luckily manage quite well with few symptoms. I too have small children (3 and 1) and after a funny episode of an irregular period and sudden onset of lower back pain last year, I was referred to an ultrasound which found an enlarged ovary inclusive of a complex mixed echogenic mass just under 5 cm. I then also had a ca125 and the ultrasound technician scared the daylights out of me by insisting I should ring my GP then and there and marked my findings as urgent. My blood test was normal and although i didn't quite meet the criteria for a fast track referral, my GP did one anyway and I was seen 2 weeks later by a gyn oncologist specialist. To make a long story short, they didn't know for sure what it was but the gyn thought it may be some sort of inflammation and the solid components as seen on the ultrasound was in fact my ovary. I ended up having a laparoscopic  surgery in march and opted to have the entire ovary and tube removed. My biopsy results came back last month as endometriosis. 

    I can absolutely relate, when I was first told about it, I thought the worst as I didn't have any history of endo or gyn problems and my mum died fairly young of breast cancer. So what I've learned by reading up and asking a lot of questions during my appointments is that the ca125 is a fairly routine blood test with cysts and pelvic masses and isn't a diagnostic tool for ovarian cancer. It can indicate that there is something going on but endometriosis for example or cysts in general, are very very likely to raise it. So even if your ca125 comes back raised, don't read too much into it. My Gp initially assumed I had a cyst until I saw the gyn consultant who said it's definitely not a cyst. They also look for free fluid in the pelvis and vascularity which can be signs of a malignancy. You have to bear in mind that it is always more likely to be something benign than not.

    I can relate to your hip pain, I had horrible lower back pain on the side of my affected ovary. The pain was radiating down my leg and I really felt it in my pelvis. There were times in the morning when I had a lot of pelvic pain and sleeping in certain positions was very uncomfortable. I too was taking a lot of ibuprofen ect.

    When this whole thing started, I started taking bromelain supplements and although that didn't kill the pain completely, it helped me quite a bit in generally feeling better and less "inflamed". 

    I hope you'll have a positive outcome and you most likely will, there are so many benign conditions and they just can't tell for sure just by ultrasounds and blood tests. But i think they have a pretty good idea in general and most tests are just done to be on the safe side. 

     

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    • Posted

      Hi,

      thanks so much for your reply, its really comforting. Im sorry about your mom.

      The gynecologist did my ultrasound and he said it is absolutely a tumor and not a cyst. I imagine the CT will give an ok picture of what it is. He didn't seem overly concerned, but when I told him one of my aunts had ovarian cancer pre-menopause and another on the same side of the family had a precancerous tumor post-menopause, I imagine that upped the urgency for him. He said tumor doesnt mean cancer and most are benign. I'm sure this is as well, but its quite hard to put it out of my thoughts.

      I wonder if having an autoimmune disease may make it worse somehow? I dont know. I have a disease similar to Rheumatoid arthritis, so I just put off testing for longer than I should have because I just thought it was my autoimmune disease. After the nightmare of trying to have that diagnosed I didnt want to go to another doctor only to be told "it's nothing" and invalidated once again. I'm sure you can understand as a fellow sufferer.

      My mom has endo, so endo is certainly a possibility. It's all this not knowing that is difficult! Where I live, I am able to book my own appointments at any hospital (I dont need a referral), so i've booked in with a gyn oncologist just in case.

      Again thanks so much, its really comforting to know others have experienced similar. I'll look into the bromelain supplements, thanks. How are you feeling since you had your removal surgery?

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  • Posted

    Hi, i am 52 and waiting for my op on a 10.5 cm cyst, my mum had breast cancer and a hysterectomy due to cysts.

    My blood test was ok and i have fibromyalgia and i am on pregablin and amitriptylene for pain but have had awful  pain in hips and legs and unable to sleep as i cant get comfy. I wonder if this is the cyst pressing on nerves? or the fibromyalgia.?  we will find out after the op i guess

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    • Posted

      Im sorry to hear about your pain. The things we go through! It's unreal. I have a disease called palindromic rheumatism. Its similar to RA but more painful and leaves no lasting damage. I am so glad to hear that I am not alone in taking strong medications that seem to do absolutely nothing for this horrendous pain. Im sure it must be nerve related, min runs all down my thigh, through my hips, into my butt sometimes and in my lower back.

      Good luck with your operation! I'm sure you'll be glad to get it over and done with. Keep me updated smile

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    • Posted

      So weird about the autoimmune because my doctor has diagnosed me with unspecified autoimmune until we find one that I test positive for. She was sure it was RA but test was negative, how did you get diagnosed with yours? I never heard of it.

      Also, my hip pain is the exact same locations and radiates. Now shoulder starting to Feel  similar as well.

      Do you have any GI issues?

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    • Posted

      I got a diagnosis after seeing many doctors. You should tell your doctor to look at palindromic rheumatism. It is the absence of positive test results that led my doctor to that conclusion and the photos I took of my shoulder. You can find some webpages on it, maybe its similar for you. My only positive test was ANA, all others were negative. Its rare so many rheumatologists dont know about it either. It has similar symptoms to RA.

      I used to get really constipated often, but since having a baby, not really.

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  • Posted

    Hi! I had 2 benign cysts and as I waited for surgery the pain built up. By night, it would be projecting over to my hip and it was a severe "ache"..... now that surgery is over I don't have it anymore. Hope this helps. 

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    • Posted

      Hi,

      Thanks so much. This is very comforting. The pain to me (this is going to sound dramatic, I know), feels like ive been run over by a car or something, I am absolutely unable to move for a few minutes. It's very stabby as well. I guess its a bit different for us all, but your comments are helpful none the less.

      I will be so happy to be free of this pain. Glad that you're feeling better!

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    • Posted

      Hey jo everything will be ok i had suffered from cysts on my ovaries for about a year or 2 the one on my right side had disappeared but the one on my left side was getting bigger so they decided to remove it with my ovary and tube i now what u are going through as far as pain it has been almost a month now since i had the surgery but i am still having pain but not that bad i hope everything will work out for u just think positive i know it is hard but i did and it turned ok good for me even though cancer runs on my father and mother side of the family but i thought positive
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  • Posted

    I’m so glad I came across your post! I have a complex septated cyst when I went to the ER for pain.  i feel like hasn’t been given much urgency, the first opening to see my doctor is July 5, even though I was told it needs to be removed and biopsied ASAP by the ER. About a week ago I woke up with severe hip pain, I couldn’t sleep a full night since then due to the severity and discomfort that happens at night when sleeping. It also feels like my side of hip  is bruised or something because it’s so tender to touch.  I was thinking if the two could be connected but feel like I’m always just kind of written off..UGH. We should chat about it sometime because I feel so alone about it and what to do 
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    • Posted

      Hi Morgan,

      Feel free to send me a PM! Yes, the pain is unbearable. Im so sorry you too are having this awful experience. I'll check back to update in a few days. Tomorrow, I get my test results and on Friday I have an appointment with a gyn oncologist just to get a second opinion, so i'll lwt you know how it goes!

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  • Posted

    Just wanted to update.

    My bloods are normal. CA125 was only 14.

    The doctor did another ultrasound as the CT has not returned and he said that it is likely endometriosis, which can cause quite severe symptoms. He told me to just keep taking my autoimmune meds. Once the CT comes back and we know the scope of the situation, he has advised larprascopic surgery and told me it is likely I can keep my ovary, which is great news!

    My mom has endometriosis, so i'm not at all surprised by that. Thanks mom! wink

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  • Posted

    that all sounds very positive! my ca125 back then was similar to yours, at 17 and after surgery was told I had minor to moderate endometriosis. my right ovary was somewhat attached to my pelvis. none of this was seen on ultrasound but since having the surgery, my pain has greatly improved. the constant deep ache in my pain was gone immediately and I only occasionally get residual back pain when i overdo something. 

    i absolutely believe that everything is somehow connected to a certain degree and maybe having an autoimmune illness makes us more prone to certain things not working properly. my condition is largely mild and a rare form of vasculitis, i see a rheumatologist for checkups. I completely understand what you mean, diagnosing something like an autoimmune illness is not straight forward. I was unwell for a year before I finally had a diagnosis. So naturally when something's wrong and we don't know exactly what it is, it's very worrying. I got really panicked when my ultrasound findings talked about a mass and a structure and how it must be considered suspicious. It ended up being "just" endo. Of course it's good that they investigate further and take things seriously but you can get really worked up when you don't know what's going on. 

    You should be able to go home on the same day with keyhole surgery and recovery is pretty swiftly too. I had very minor pain afterwards, mainly shoulder pain from the gas but was able to get around okay right away. The only other comparable I had was a c-section and the laparoscopy was a breeze compared. Keep us posted how you get on. You'll be absolutely fine!

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    • Posted

      Sorry to hear about your autoimmune issues. I'm glad the surgery went well for you. I'm very used to shoulder pain, its a common symptom of my autoimmune disease.

      Well, I went to see the gynecological oncologist at a large hospital just now. The original hospital I went to is in my local area and it's pretty small. The doctor at this hospital said he does not agree with the finsings of the original doctor and that the mass is "suspicious" because it has a protrusion coming off of it. He wants his own CT scan. I can't catch a break! He said that the CA125 isnt always reliable and with a history of ovarian cancer in my family we need to be more cautious. I'm sure its fine, but he didn't leave me with a sense that it was benign. Especially when he typed malignant neoplasm into his computer!

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    • Posted

      Hi I am really curious to know any follow ups to your case? I have a complex cyst and CA is 62 so I am really freaking out. Surgery is in 6 days plus the pain is killing me. 
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