Having tests - can anyone advise me?

Hello everyone. I am hoping someone can give me some advice. I am 48 years old and have been diagnosed with IBS for about 2 and a half years. I had a rare form of breast cancer diagnosed in June 2012 (normally occurs in head and neck) and finished six weeks of radiotherapy in October 2012. I have always had heavy, painful periods ( I have two small fibroids) but since my radiotherapy they have been infrequent. For the last three months they have been heavier and more painful and I have been constantly bloated with constant stomach ache and over the last month I have developed a pain in my right hip/groin area and my right leg. I also need to rush to toilet before I have an accident (this is for both and I have told my GP about this for months) I am getting increased bouts of nausea and my appetite is affected. Two weeks ago my GP ordered blood tests for ESR, LFT, coeliac screen, FBC and thyroid. I had to have repeat ESR and LFT yesterday and was shocked when the nurse said the GP also wanted CA125 test doing. I have got an appointment for an ultrasound of my pelvis and transvaginal scan but this is not until 4th March. My problems are now affecting my life ( I dont work as I am a carer for my husband who has primary progressive multiple sclerosis). Has anyone got any advice for me - I don;'t know whether to try and get my scan brought forward or to go back to my GP ( I am fed up of going to the doctors and don't like to cause a fuss). I am terrified of what all this means as my younger sister had ovarian cancer aged 37 - this was successfully treated.

I hope someone can advise me. Thank you, Heather x

14 Replies

  • Hi there Heather.. and welcome. Personally, I feel it might be a good idea to go back to see your GP and tell him or her exactly what you've put on this board. I would be anxious too if I were in your position. It doesn't mean that you have Ovarian and it sounds like you're in good hands but March is some way off, isn't it? Another thing you could do is to ring Ruth at Ovacome who is very wise to Ovarian and its sister, Primary Peritoneal. Her number is 08453710554/020 72996650. It's a nurse led phone line. The final thing you can do is follow the symptom tracker which is on the Ovacome site, print it out and take that to the GP with you. Here's the link

    08453710554/020 72996650

    You'll find the link to the tracker towards the bottom of the page.

    Love T xx

  • Snap, Tina!

  • Dear Heather, welcome to our network. Not a place you'd want to be but......You'll get lots of support here. Have you had a look on ovacome.com yet? There is a BEAT symptom teacher there which is very good and allows you record and print out symptoms to take to appointments. There are also lots of Factsheets under the Resources' tab on the left. These may clarify whether you want to get your appointment brought forward. The nurse-led helpline mentioned on there is also superb. Good luck in getting some resolution to your problems. Your present symptoms sound somewhat like mine, eleven yrs ago

    All the best

    Love Wendy xx

  • Thank you ladies for replying to me so quickly. Things have moved on in the last half hour. My GP has contacted me to say my CA125 is 63 and she was not happy with the scan date so she contacted the scan department and ten minutes later the scan department contacted me to say I can have my scan next Wednesday at 10.40. My GP has also referred me to the gynae people. I am absolutely terrrified now as things are moving so quickly.

    Once again ladies thanks for the replies and advice. Heather x

  • Welcome! Sounds like you have the sort of GP everyone should have, which is great. I'm sure it's better to find out what looks to be going on sooner rather than later. If it's no big deal, the relief will come sooner and, if it needs treatment, that will start sooner. Hopefully you've adjusted to the new date now and have got into the "let's get on with it" mode. A lot of people on here have written about that. Fingers crossed for you next week. Try and use the time before Wednesday to do nice things which take your mind off it.... snowdrop and crocus hunting? And deep breaths. xxxx

  • this is more or what happened to me ,a year ago i had more or less the same symtoms as you since then i have been treated for ibs ,blocked bowel,kidney stones to name but a few,then a very nice who i hadnt seen before took notice of pain and stress i was under and sent me for ca125 test which the result was 262 and 3 weeks ago i was told i have ovarian cancer i like yourself am young,try and get the doctor to bring your scan forward as your sister will tell you the sooner they find out the sooner they nip it in the bud ,please make a fuss even if only for your own piece of mind

  • Dear Heather,

    Just sending you best wishes for your scan, I am glad that things have moved on since your post thinking of you live x G x

  • Wishing you the best of luck with your scan. Let us know what happens.

    Love Mary xx

  • Thank you for your replies and best wishes ladies. I have everything crossed and will let you know what happens.

    Heather x

  • Hi ladies. I have been for my scan today and was told there are no lumps or bumps and the only problem they could see were my two fibroids. I have a gynae appointment on friday when I hope to be given some options with regard to the fibroids. I was so happy with the news, I felt like doing cartwheels (not that I have ever been able to do them). Thank you so much ladies for your advice and support, it made a big difference to be able to express my fears to someone. I wish you all well for the future.

    Love, Heather x

  • Looks like I spoke too soon. Been brought back down to earth today. At my gynae appointment today I was examined internally twice - the second time by a consultant who tried to do a hystoscopy? But couldn't do it. I now have to go in as a day case on Tuesday and go to theatre to have a lapocroscopy and hystoscopy. This is all a shock as the radiologist told me everything was fine and the consultant told me that the radiologist hadn't been able to see my ovaries ! I was told everything was fine on Wednesday and today(Friday) I find myself planning care for my husband and waiting three to four weeks for biopsy results. Rant over, thanks for listening ladies. Hope you are well. Heather x

  • Dear Heather, I'm really sorry you're on such a roller-coaster. It does seem as though your medical team are on the ball. This is a horrible process for you but I think you're in good hands. Let us know how you're getting on. Loads of love xxx Annie

  • Dear Heather,

    Just sending you my best wishes for a good outcome love x G x

  • Had my laporoscopy on Friday 21st after it was cancelled on Tuesday. Apparently I gave them a scare in theatre - oxygen dropped as did blood pressure. Surgeon said they didn't have to do CPR as they sorted it with medication - scary time. Because of this I had to stay in overnight and have oxygen all night. Good news is that my ovaries and tubes were clear. They managed to get a sample of my womb lining for biopsy even they couldn't do the hystoscopy because my womb is tilted due to my fibroids which are apparently the size of a four month old fetus. I have to go back to clinic in six to eight weeks to discuss treatment for fibroids but surgeon has said no hysterectomy until my lifestyle is sorted out ie weight loss. Recovering at home but hopefully I just have my fibroid problem to deal with - and weight loss. I wish all you ladies the best and thank you very much for your help and advice. Love to you all, heather xx

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