Terrified that Hypercalcemia could be due to Cancer

I had an abdominal hysterectomy 3 months ago for a suspected cancerous fibroid (leiomyosarcoma)  which,  histology findings showed were,  thankfully, benign. My recovery was going well but 6 weeks in started to get very fatigued and dizzy at times.  A blood test showed I had high calcium levels in my blood and the doctor told me that it was most likely due to high levels of the parathyroid hormone,  but my parathyroid results came back as normal. He said that as my calcium levels were just over borderline  then we should retest in 3 months time.

Fast forward 1 month (May 2020) and still felt tired, generally off and with constipation. Another blood test showed my calcium levels had jumped up even more to 2.73 and the next thing I knew the doctor jumped into action and I was being tested for ovarian cancer,  having breast exam,  sent a stool sample test kit and a chest xray performed,  all showing negative and no inflammatory markers for cancer. 

What's scaring me most is that in 3 months I have lost 5kg and regardless of how much I eat I'm steadily losing about half a kilo a week, sometimes it's been one kilo. My GP has urgently referred me to Endocrinology but my gynaecologist has just dismissed it all as me not eating due to feeling down and that I might need HRT. I'm so frightened that the somehow a mistake was made in histology and I have cancer that has spread or something was missed.  In the meantime I consciously eat more than I should daily but it doesn't seem to make a difference.  If my weight loss carries on in less than 2 months time I will be underweight for my height. 

The waiting is awful,  especially as no one has said I am to have any scans.  I have booked an ultrasound privately this week just because I need to find out if anything is wrong as soon as possible. I've read that hypercalcemia is often a symptom of advanced cancer and now I can't think of anything else and getting very upset. 

  • Hi Girlagogo,

    I'm sorry to read about the difficulties and worries you're having at the moment. I can undersand it is difficult when there are unexplained symptoms and waiting for further info.

    See how things go with the ultrasound this week and once you have all your results in, if you are still experiencing issues and/or have any questions, then it might be a good idea to write things down and discuss with your doctor. It's important that you have appropriate answers and peace of mind so do be sure to discuss concerns with your GP.

    I hope things begin to improve soon.

    Wishing you all the best,

    Ben
    Cancer Chat Moderator

  • My doctor rang me today.  She said that because my calcium has been high since March,  the scans done before my hysterectomy were clear,  and my kidney results are normal with no high calcium in my urine, that I'm being referred urgently now to the Cancer of the Unknown Primary clinic for investigations to 'exclude' the possibility of cancer. She said because of my weight loss that that's a real possibility.  I didn't really say much as I'm still trying to get my head around it. I don't understand why I'm being referred there without a diagnosis.  Wondering whether with all the being pushed from pillar to post for so long and how long this has gone on for, whether it's too late.

  • It would be good to read about whether anyone else on here has had similar experiences with high calcium possibly connected to cancer or parathyroid problems? My calcium levels have been tested again and dropped down to 6.2 although still above normal.  Still feeling dizzy, I have an urgent referral to Endocrinology but have been told the wait is around 13 weeks due to Covid-19 backlog, but seeing haemotology in a week. Is anybody having similar issues?

  • Good Morning [@Girlagogo]‍ 

     

    I was just reading your thread - How are you doing? 
     

    Wishing you all the best x

  • Hi there. Well,  just read this thread and realised that over a year has passed since this all started! Not much has moved on due to Covid meaning hospital appointment waiting times are longer but I didn't get seen until  September by Endicronology. I was discharged from Haemotology as the consultant felt my blood results were not a concern for them but in the meantime also had a colonoscopy to rule out bowel cancer.  Some of my symptoms, like dizziness turned out to be a big drop in estrogen and I've since been given HRT which has helped a bit.

    The Endicronology consultant still hasn't made a diagnosis, just had more blood tests and being "monitored" which is making me very unhappy as nothing is being done to find the cause.  

    I have been told it's "likely" to be familial hypercalcuric hypercalcemia  even though I still haven't been tested for it and my parathyroid hormone hasn't been tested for a year so there doesn't seem to be any effort in trying to get to the bottom of my fluctuating calcium levels.  Really feel like I'm being fobbed off but still getting symptoms.  My next appointment is in July.  I just really want them to just find a reason for it than continue to "monitor."

  • I am 4wpo hysterectomy,  I have 2.69 calcium in blood level , I've spent the morning reading up .. 

    I'm thinking auto imume might be a reason as my exzema and allergies have been bad , and only just started eostrogen patches 

    I read something about high blood calcium but normal urine calcium I shall try and find it now . Think it had your other symptoms  as well

  • Hey Babysand46, hope you're recovering well. I't's interesting that you say autoimmune - have the doctors suggested what they think is the cause of your high calcium?  Mine has been 2.6 but I know this has lowered due to being on HRT. I read that estrogen can have an affect on calcium levels.  Before I went on it my calcium was 2.76 and then it only went up again for a short while whilst I reduced my HRT. I'm wondering whether my symptoms were even due to being menopausal as my estradiol levels on HRT are way higher than they should be.  The symptoms could have been from high calcium or overlapping with them. 

    I'm being referred for a genetic test for Familial hypercalcuric hyperglycemia (FHH) as my endocrinologist thinks that's the cause because my calcium urine levels are low.  I guess it's process of elimination but just frustrating that it's dragging on for so long 

  • Hi its all a mine field ..I had hysterectomy  due to PMDD ,I did 6 months on chemical menaupause..no hrt  as am progesterone  intolerant too , ...tbh doctors know nothing .. cant get to see gyne consultants  often ..only seen them 3 times b4 I had hysterectomy,, so Google alot lol ..my conclusions from today ...oestrogen sending signals to thyroid glands causing auto imune to click off(allergies and exzema worse) ,this can cause bones to dump calcium I think this is what I've read ,,I'm not brainy enough for all this medical jargon ..ovarian malfunction can cause calcium dumps , I've had my ovaries removed so no eostrogen been maid for 6 months including chemical menopause..I had very little exzema or allergies,  when I started using patches they started  again , hot baths or heat can cause patches to eostrogen  dump .. so I've come to my not very highly educated mind that these might have caused calcium  dump ????

     

  • Not sure but that's an interesting theory.  Hyperactive parathyroid glands are often the cause of raised calcium in most cases but it sounds like estrogen has been causing your body to react  quite a bit,  with allergies.  One thing I realise and appreciate now is just how powerful our hormones actually are and the effect they have on us both physically and mentally.  I definitely think the immune system could be involved as an imbalance in a chemical/ hormone/ electrolyte etc. could  cause our bodies to react or defend itself in ways that could illicit an immune response.... but I'm no expert either so just a thought!

  • Like your thinking :) ,, go the googlers ..

     sorting out to being our best selves x