Hey, so a little update for anyone that remembers me .. iv had a meeting with my consultant, he said its defiantly not a cyst , and that the mass has high blood flow, he talked alot about it being cancer and didnt really touch on the possability that it could be benign , until i aksed and he said that he could. So he sent me for other tumor marker bloods and bloods for germcell tumors? He said that on the scan the mass is quite small and the fluid around looked healthy and no loose fluid around .he said I will be having the ovary out , maybe more depending on what the scans show . I've had my ct, but no results. Still waiting on an mri app . What's the normal waiting time for these? .. it will be 2 weeks since consultant on Thurs.Good or bad my bloods arnt available to view online so I assume they go straight through to him?
I'm about 10 days into my monthly cycle (although i don't have periods because I have the coil so can't be sure) . But I'm in a fair bit of pain and discomfort. I spose that's normal ?! I probably wouldn't bat an eyelid if I didn't know what I know. I also have some discomfort under my ribs on the right side and something that moves and "pops" on the bottom rib , which is causing me to panic even more although i suppose it could be unrelated. Would the pelvic scan have spotted anything else in my abdoman?
I have no results of any kind and am no closer to knowing anything really. Day to day I'm at work and functioning fairly normally , but I do have times of absaloute dispare where I just want to hide and cry. Normally when I stop.
To be honest there's no real point to this post other than to vent and talk outloud. I just have to keep remembering each day that passes I am one step closer to a plan. I hope you are all OK x
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Try not to despair Sophali31. This is a process you are going through and it takes time as they work through each set of results.
It’s a very rough period and I am not surprised that you are periodically crying, working on auto pilot and feeling all sorts of somatic aches and pains. This is very stressful.
Your results will be ready and you will have answers in the near future.
Until that happens give yourself any breaks you can, rest, de stress, give in to being needy. Whatever gets you through xx
I can sympathise totally with the agony of waiting for results and worrying about any physical symptom. I have (wrongly) self diagnosed mouth cancer, skin cancer, new tumours etc.
I think your pelvic scan would have spotted anything that gave you a period pain sensation like a build up of fluid. I really hope that you get results soon and put a plan in place which really does make everything more manageable.
Ah it's nice to hear somebody else does this too i feel mad sometimes. Ever since he said hes testing for other tumors Iv self diagnosed it everywhere and convinced myself it's spread everywhere too amd that theyl tell me i have only weeks to live. It's very very difficult not too overthink . Thank you, for giving me something to relate to xx
When I was first diagnosed in Jan 2020, I honestly believed I wouldn't see my birthday in September but there is so much treatment available thank goodness, so try to be reassured that there will be a good plan whatever the results say. X
it took me 3 months from a raised Ca125 result to starting chemo, so be prepared for a bit of a long haul, but it probably won’t be that long. In the meantime, if you can get over the shock, do try and live each day as normally as possible doing any and every thing that gives you pleasure. Each day is a precious gift. That is always true, cancer or no cancer, but sometimes we forget it. Worry keepsyou going round and round in circles but gets you no where. With best wishes, Emma x
Hi sophali31, it's OK to vent your anger and frustration here, we all understand and have been through that stage to. I know the wait for your results will seem like a lifetime but there will be a plan for you. In the meantime be kind to yourself, spoil your self, you deserve it! 💖. Look your self in the mirror and say everything will be alright, make it your mantra. Very best wishes from Ivy. Xx
Waiting for results and decisions is awful, but it's really important to look after yourself. Distraction therapy is great - find nice things to do with the people you love most, and enjoy this lovely weather if possible!
I am sorry for your frustration. Just wanted to know that I read your vent fully and sending you warm hugs from India. Stay strong. There will definitely be answers soon.
I’ve been where you are not too long ago, with some symptoms at Christmas and then ultrasound scan showing a cyst, followed by MRI and the CT both of which my consultant felt were strongly indicative of cancer. So I had a radial hysterectomy, bilateral ovaries/fallopian tubes, omentum and appendix on 16/3. My histology came back yesterday and confirmed cancer at stage 1a, so no chemo needed and just the surgery. It was an adult gramulosa cell tumour which was not the one they thought it was from the scans, so things can change.
I know it’s really really tough to wait but try not to dr Google as it really does not help, I tried to stick to the Ovacome booklets. I think my scans were a couple of weeks each but overall things moved fast - I had my first symptoms at Christmas and am now nearly 4 weeks post surgery. I’ll be thinking of you and just wanted to let you know there are some good(ish) outcomes out there as well xx
That is really encouraging to read. I'm so pleased for you and I hope you are recovering well. Google is the worst, for the most part I stay off it , as it never seems to make me feel any better. Only worse.
Hi👋 from Wales, it took 10 weeks in all for scans then more biopsies then mdt meetings to get started and it's a horrible wait and you do think every little pain is something and sometimes I still get the what ifs! If I were you I'd ring the hospital xray dept and ask if your scan has been sent over to oncologist, then ring oncologist secretary and ask if it's been looked at yet. It's ok to ring around and check. I do every time x
Hey, thanks for the reply . Are they likely to tell me anything though? I vaguely remember him saying it all gets looked at together at an mdt meeting? .. maybe I should give that a go . I literally just had a call and have my mri on Saturday morning , so hopefully I'll find out more by the end of next week x
Well I found out that my mdt meetings are on a Wednesday and that then on the Thursday I would get answers but I wasn't put into 2 meetings! I rang to speak to oncologist and the was put on the list for the following Wednesday as I said I wasn't happy with the delay and it worked so sometimes you need to push for things. They are experts but it's your life x
Hey The period between investigation and diagnosis is the worse! I was convinced I had weeks to live, cried and shut myself away! Once I got a plan everything changed, with the amazing support from my gynae and his team I began taking one day at a time. Nobody knows what's gonna happen in the future so try and enjoy everyday with your children until you get some answers. All the ladies on here have been in your shoes and I'm sure I'm speaking for everyone that If you need to chat then chat away on here. The ladies on here have been an immense support to me and this group has changed my mind set.
Dont forget to call the ovacome support number if you need too.
My scans and bloods results took upto 3 weeks to get results but all hospitals are different. I was under Addenbrookes in Cambridge and they were amazing.
Thank you so much. To be fair I initially had the pelvic scan on March the 18th. So really it is alll moving quite fast, but as you know it certainly doesn't feel like that lol . I have my mri app now on Saturday, so that's another step closer . Taking each day ..and mood as they come and trying my best to keep my brain from overthinking xI hope you're OK x
I really do understand how you are feeling, many years ago I was having a scan every month due to the awful pain I had when I was ovulating each moth I would have a cyst that burst after ovulation and I felt better.
Eventually the cyst came and did not go away that’s when all my problems started.
Don’t tie yourself up in knots until you have some answers I know it’s hard waiting but it has to be done.
Try and relax and take time for yourself I hope all goes well x x
The waiting really is the pits isn’t it? Im sure that once you’re on the tracks to getting your diagnosis things will move faster. When you go for your appointment, ask if there is a number you can contact them on (our hospital has a Clinical Nurse Specialist …CNS…Gynae oncology extension number where you can leave a message and they’ll get back to you, (which is useful for prompting the team about appointments etc!). The CNS team are always, in my experience, so helpful with helping things along and supporting you.
My op was 20 years ago, stage 1, and they took away my ovaries, omentum, where there was early stage cancer, and my womb, fallopian tubes etc, in case there was anything there. The surgeon said that it hadn’t spread further than that and I didn't need any chemo. So far so good. 🤞
I hope that, if they have to find anything at all, they find that it’s all contained and at a low stage. Treatment at the lower stages is ususally successful.
Take care of yourself and try to plan a little something each day to look forward to. I hope you get a plan from your team as quickly as possible.
Thank you, my consultant did say someone would phone me the following Monday (over a week ago now) just for support and I havnt heard anything. Maybe that's a good thing?! .. I will defiantly be getting contact numbers at my next appointment as at the moment I feel abit alone and out of my depth. Thank you xx
Have you tried ringing the Ovacome helpline? They may be able to reassure you and they’re up to speed with how things are working right now with diagnosis and treatment times. It’s all on the Ovacome website. Ovacome.org.uk
Hi Sophali31,I too am NED at this writing but I felt compelled to share with you my journey. I'll try and keep it brief but brief is not what this journey is about. Eh?
I was diagnosed with CA in November of 2020. Saw a surgical OB/GYN oncology specialist who said surgery was not an option and recommended radiation. By the time I got home from that appt 1 hour the team of MDs thought that was not going to work and called me to say they thought I should do chemo and then referred me to a medical oncologist. So now it's January 2021 and the oncologist says he wants to start right away. (This all happening in the middle of covid pandemic).
Needless to say, I couldn't help but feel like this was the end and I needed to prepare for my funeral. Anxiety, depression, etc was overwhelming to say the least. Fortunately I am in a Healthcare system that sends me results of any tests blood, MRI, CT, ultrasounds, MD reports directly to my medical record which I can securely access on line and I get the info and reports the same time they do. This made me feel like I was participating in the decisions of my care, progress and plan. As it turned out I went through 5 months of chemo and responded well enough to then be eligible for surgical treatment which I did in June of that year. Pretty major surgery - abdominal hysterectomy, oopherectomy, omentum removal. They left my cervix in because they couldn't get clear margins to remove it without damage to the bladder and bowel. (To much scar tissue). After surgery most was gone but residual tumor left at the cervix indicated a need for radiation. It wasn't until November that I began radiation everyday for 5 weeks. Then intense internal radiation 3cycles one week apart.
So one year of treatment with excellent results but the journey was difficult to say the least. Every day was another day of hope, prayer, wonderment, confusion, solution. What got me through all of it was my faith, prayer, friends and family who gave me space when I needed it. Joy and laughter when I least expected it. Love and encouragement when I didn't even ask.
I am a retired nurse and I understand all to well the pain of having to wait for results and tests. But I know it's a necessary part of a greater plan for the health care team in making decisions to prepare the best treatments for my wellbeing. Patience is not one of my best attributes but it surely is one I've adopted. Hang in there, pray and trust. I guarantee you'll get the peace you need
What an inspiring story! .. I feel like when you hear the word cancer when you have not personally experienced it you just assume there is no way out and this is the end.I cannot even face that thought at 35.
This is lovely to read and although I'm sure it wasn't an easy fight I am so happy for you!
Hi Sophali31I feel your frustration suddenly they will have the MDT meeting about you and l was told they were always on a Weds..Please try not too worry like all the girls say most of us have been in exactly the same position. I know its easier said than done but worrying makes you ill you need your strength they will soon have a plan. Try not to worry it can make you lose sleep try and relax you'll soon have the answers sending love & hugs lm 5and a half years into the journey and believe me l was just the same. Love & hugs SheilaFxxx
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