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My mums story- Complex cyst- m.r.i and pre op.

Posted , 3 users are following.

livi45947
livi45947

7/10/14

Writing on behalf of my mums experience so far.

Tracking back to late August mum noticed a lump growing in her lower pelvis area.so she waited until after her period to see if it went away, but it didnt. A few weeks later her stomach was so swollen and tender she looked 5 months pregnant. Went to see our GP to which she said it was an enlarged cyst and reffered mum immediately to have blood tests and a scan at a local health centre. 2 days later at 4am my mum was asleep when she awoke to a jolting sensation where the cyst was and felt alot of contractions across her lower stomach. She went downstairs to grab a drink of water when suddenly i heard a loud thud. I ran downstairs and found her collapsed on the kitchen floor. I rang the ambulance and the fast responce was fantastic, mum came round but with a severly low BP they couldnt often get a reading, She was telling me her stomach was not as large and she couldnt feel the cyst anymore, We all thought it may have burst, so she was admitted to hospital. 

During her stay she had a chest xray, CT scan, blood tests and ultra sound examination. In the mean time she was nil by mouth ready for op. No operation happened and she was only given paracetamol for pain and liquid morphine to ''help'' her sleep. (didnt work). Mum remained in hospital 2 days waiting for a follow up of scan results, 2 female gynochologists spoke to her and told her she has a complex cyst on her right ovary of 8cm and a smaller one on her left. Her CA125 was 100 and warned her that they are worried its possibly cancer. After being told this she got sent home and we waited for another month for a consultation with a gynea. Arrived at that only to find they lost all her notes and scan results. He did she she will need a full hysterectomy and even taking nymph glands and appendix. 

2 weeks later she was booked in for her pre op and a full body m,r,i scan which was today. They lost her notes once again but waited until they retrieved them after m.r.i. No description was given of the cyst, no dimensions like everyone else is getting, they still suggest it may be cancerous but cannot say until after op and after pathology which may take upto two weeks. A gynea nurse did say the surgeon may speak to mum day of op what m.r.i showed and how they will op accordingly to it. Im so anxious for her, i keep thinking the worst as they are hardly telling her anything. Most ladies on this site allready know if their cyst is benine before op. Im also worried why they wanted to do the full body m.r.i rather than just stomach area. Im so worried, my mum is my world I just hope and pray its not cancerous. 

1 like, 6 replies

6 Replies

  • Tazchurch
    Tazchurch livi45947

    Posted

    We're worried mine were cancerous before op as blood test result far higher than your mum's, they weren't. This blood test is notoriously unreliable throwing out false positives and negatives all over the place. All it really does is help them decide how to proceed. If it shows positive they then operate cautiously so that should and I stress SHOULD there be cancerous cells they are not spread.Few ovarian cysts are cancerous.

    Want to write more but still recovering so do so later.

    Big hugs

    Taz xxx

    • Tazchurch
      Tazchurch

      Posted

      Lost my notes several times and scans wet walkies, this could be one of the reasons for the battery of tests but also the fact that your mother collapsed would mean that they automatically check out pretty much everything. Op proposing may sound scary but is more likely to be to do with your mothers age than for any sinister reason. They have a sliding scale so to speak, and the older a person the more that is likely to be proposed.

      Told me little so not alone there either, don't you just love 'em sad

    • livi45947
      livi45947 Tazchurch

      Posted

      Hi Tazchurch, thank you for your replies. I hope you are recovering well? 

      At the mri the lady only commented on how clear and well mums images have come up. That was all. She did mention the doctors may tell her morning of operation what they saw in mri, but can u imagine if they tild her they think its something sinister right before an oo?  when we saw gynea a few weeks back i heard him whisper to his secatary to do the mri because something else small has flagged up that he wants looking at -he never mentioned it to us. U feel like they know its bad but keeping all secrative.  Im dreading to hear the results in case its bad news. Im also a very anxious person anyway and ppetrified of Hospitals  im thankfull she is being sortes now and its been iver to months for hospital to give an operation date. If all goes to plan her op is this Thursday. xxx

    • Tazchurch
      Tazchurch livi45947

      Posted

      Slower than normal as have other medical problems but otherwise OK.

      As to secrecy Drs seem to think your only the patient so why do you need or want to know. Had that with mine, could swear they like causing uneccessary stress. I felt were not saying things as knew something sinister, now know not true just part of the way alot of consultants are.

      I am always here and hope that it all goes well Thursday, no reason it shouldn't.

      Big hugs

      Taz xxx

    • livi45947
      livi45947 Tazchurch

      Posted

       Hi Tazchurch. mum had a radical hysterectomy a week ago now. Shes not recovering too well as the cyst/adnexal mass was attached to her bowel as well. At pre op they told her they would remove everything anyway as a precaution. They took a disection from her nymph glands, possibly for staging. After op surgeon cane round to my mums ward and asked how she was. We had to ask her how/what was seen in op. She said they removed everything that we discussed and mums appendix looked sticky so they decided to remove that as well. She had alot of endometriosis scaring and lots of fluid in pelvic region. The cyst ruptured before op which possibly caused mum to collapse a month prior to this op. It also ruptured again whilst they tried to drain it. Now the mass has been sent off to the lab, she didn't say whether ir looked malignant or not which is worrying.  So its a waiting game again. Im worried we go back to post op appointment and they tell us mum has cancer. She has had fluid cysts in her breasts before. Hoping and praying for a positive outcome. Has anyone had anything similar to this?
    • Tazchurch
      Tazchurch livi45947

      Posted

      Though it may not seem it, not saying anything can be a good sign, after all they did say about the appendix and that could well be purely related to the possibility of appendicities developing at some later date.

      Whatever the outcome it has all gone so to speak, and my gynaecologist told me (one of the few things he did!!), that even if malignancy is found spread is highly unlikely. He told me that in over thirty years he has never known it.

      Tonights Rosary though will be said for you and your Mum at what I know is a worrying time.

      Big hug - wishing I could give it you in person

      Taz xxx

       

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