Thought I would say hello!! need some advice pl... - My Ovacome

My Ovacome

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Thought I would say hello!! need some advice please

Cathi68 profile image
17 Replies

I am not sure if I should join or be here as I have not been told I have cancer. However at the moment my doctor is rushing me through tests and I am so over whelmed and no one to talk to. My story so far... 6 weeks ago i bled heavy after 5 years of menopasue. I have a watery discharge which sometimes is odourless or I can smell, not small amounts. For the last 3 years I have been living and caring for my elderly parents, my dad is 97 and falls alot so i lift him up back into bed or his chair etc, so i have had bad back pain for 2 years, the pain has always been lower spine the right of the spine and bad thigh heavy dull pain.(which i never put towards my new systoms until the doctor asked. I feel bloated all the time for around 3 months, i now go to the bathroom often and little.

3 weeks ago i went to the doctor as i started to feel unwell. I was tired all the time even after i have 2 good night sleeps, i still work full time so i never really thought any of my symptoms were serious just because i am very run down, the pain in my back and thighs is 24/7 can be sharp pain but always a dull pain (the kind after a heavy period).

The doctor took tests for BV as i have not had sex for 4 years(due to being single and living with my parents). when the test were clear she sent me to the hospital for a scan the radiography asked when I had my last scan, i told her when I had an evac at 39 years (9 nines ago) and mentioned she cant see if it is an ovary or something else, the following day the doctor called me and said she is not happy with the results (never explain much, and to be honest i never asked) and she is booking me into the hospital again to see a gynecologist as soon as the next appointment is free (she said they may want to do extra tests), the doctor stated she wanted to check and rule out anything sinister, she asked me to come in and have blood tests CA-125 so the hospital has it ready for my first appointment.

Sorry for the above but my mind is in a whirl, and i need to think of questions to ask, yes iam concerned it may be cancer, and i understand till biospy come back no one can say anything.... any advice ?????????

The appointment is this wednesday for a hysteroscopy,

thank you for listening to me this has really helped Cathi x

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17 Replies
Cropcrop profile image
Cropcrop

Hi Cathi68 and welcome. I am sorry you're having these issues and I understand how anxious you feel, this is possibly the scariest part because I feel the not knowing is so difficult. Once you have your answers you know just what you're dealing with and can move forward appropriately. I hope your tests come back with nothing sinister being present but if they're not clear then we're all here for you. I'm glad that writing it down has helped a little. Take lots of care and do let us know how you get on. Big hugs and love ❤️Xx Jane

BeeWild profile image
BeeWild

Hi Cathi I am newly diagnosed with OC and waiting to see what my treatment plan is . I haven't had biopsies just an ultrasound, CT and very high CA125 results. The waiting is the worst part and I'm hoping to go to see the specialist this week to see if I need chemo first or surgery.

I've had all sorts running round my head and been in a state of blind panic after consulting Dr Google!!

The ladies on here are amazing and bring you back down to earth and reality. I too am single and felt so alone as didn't feel I could burden my kids with all my thoughts, this site offers so much support and positivity it has helped me enormously.

I hope you get your results soon and you can find some peace of mind, the not knowing is awful! I think once I know what's going to be happening I'll feel more settled. My thoughts are with you and let us know how you get on xx

Bev xx

TinaB1 profile image
TinaB1

Hello Catbi .. you have no reason to assume you have Ovarian. . I hope you haven't . In the meantime, please assume the best .. sending hugs xxx

Alibee2 profile image
Alibee2

Hi so sorry you are in the place where we have all been... the not knowing is the worst thing. Once you know, one way or the other, you have a plan to follow - a road to travel. One thing to be aware of is sometimes with ovarian if they can't see a tumour they can't do a biopsy - you only get a diagnosis after the ovaries are removed/a hysterectomy is done as only then can they look at all parts of the ovaries and Fallopian tubes so be prepared that you may not know for certain for a while (I was given my diagnosis a week after surgery). Fingers crossed that all goes well for you.

Ali x

Waiting around for results is the worst part. I hope everything turns out ok for you, just be aware that the CA-125 test isn't a reliable test. They don't use it for the cancer I had. I got my diagnosis two weeks after a full hysterectomy but that was over three years ago and I'm completely well now.

Sending strength and hugs xx

Cathi68 profile image
Cathi68

thank you Jane Bev Ali and Tina, it does seem a friendly site and thank you, the support means the world to me

Cathi68 profile image
Cathi68

thank you Katlan,

CallmeMum profile image
CallmeMum

Hi lovely and welcome to this wonderful site where we're all very nice here.

Easier said than done PLEASE try not to worry until you have results you're symptoms could be absolutely anything so don't assume it's one thing and not something else no matter what you're diagnosis PLEASE don't consult Dr Google he's way out of date (10 years) for ovarian and he scares the sh*te out of everyone!

Don't feel you shouldn't be here either we're all here for 1 reason or another most cancer some people cysts and other similar stuff (if it goes on in that area and you have questions someone can answer)!

Let us know how you get on with everything xxx

It sounds as if your GP is on the ball. The CA 125 test for many of us does tell a simple story. If it's above normal range (35 or so) and especially if subsequent tests show a rise, it's often an indicator of Ovarian Cancer.

I'm worrying a bit about the long term health impacts from your caring. Have you had training in lifting and handling? As well as your back, this sort of work can affect internal organs like bladder, if not done right. Have you got equipment to help you? Respite?

Good luck tomorrow. x

Cathi68 profile image
Cathi68 in reply to

i am trained in lifting my sister is a physio, even though she not here she has shown the easiest ways but a 16 stone man dead weight on the floor sometimes can be tricky :) but all good.... i work so i have a break from my parents etc if that makes sense

in reply to Cathi68

Certainly does...and you don't need a gym with all that lifting!

thesilent1 profile image
thesilent1

Hi Cathie and welcome. I'm sorry your having all this worry at the minute, the last thing you need really as you've your hands full coping with your elderly parents and job.

The one thing I will say is well done to your GP. So many of us are fobbed off, misdiagnosed etc. Hopefully it won't be anything sinister but you just never know. I found the best way to cope was to prepare myself for the worst case scenario and anything less than that was a bonus! It worked and helped me accept my diagnoses easier than perhaps I would have done had I ruled anything sinister out.

As regards questions to ask, well you could come straight out with it and ask, Do you think I have ovarian cancer! If the answer to that is yes, that will open the door for you to ask further questions eg, what treatment am I going to receive?, how soon is this going to start?

Wishing you the very best of luck for Wednesday. Hope all goes well for you. Please let us know how you get on. Ann xx

Cathi68 profile image
Cathi68 in reply to thesilent1

your reading my thoughts, i am thinking exactly the same... i am not worried or fretting just over whelmed at the speed and I cant fault the doctor at all.... and i am guessing only worrying over a short period is positive too... thank you to reassure i am on the right tracck within my thought process thank you

DesireeD profile image
DesireeD

It is simply wonderful to have someone to talk to, especiallly someone who completely understands, like these people here. You have come to the right place! We ALL hope your tests are negative, and there is nothing to worry about. I, for one, especially sure hope so!

In my case, I completely ignored every symptom, as it seemed easy to ignore, until I couldnt do that any longer and ended up in the ER, where I had a CA125 test-with results @6,000. In some ways, there wasn't any time to wonder "what if", which seems like a blessing. A very blunt dx, left me feeling like, "hummmm, well, OK then" I had the dr explain to my hubby on the phone, as he was desperately trying to get to the ER! And, no, he didnt take it as well as I did!

Long story short, dx June/July 2014, chemo, surgery, more chemo and NED (no evidence of disease) since Dec 2015! I hope and pray your experience is as good as mine, I feel extremely blessed! Please do keep us posted!

Warm hugs, loving thoughts and prayers,

des

Cathi68 profile image
Cathi68 in reply to DesireeD

Thank you for your kind words and sharing your experience, I guess is knowing your not alone (regardless to outcome) of course i never wish anything wrong with myself or anyone else, .... Well i have my hysteroscopy tomorrow and i have just received an appointment colposcopy for tuesday... fingers crossed

sophieturgeon profile image
sophieturgeon

Hello Cathy, and welcome to the group. Like you I am in a waiting period. This is a good group of people.

I've had surgery where only my uterus and cervix were supposed to be taken. My CA125 was normal and nothing showed on the ultrasound. After the surgery, I found out they had taken my left ovary. They had to go in to find out what was there. I consider myself lucky. So I think it is a great thing you are going to get a Hysteroscopy, because they'll be able to see more than what are on the tests and you will get the correct answer this way. My doctor hasn't received the pathology report due to additional testing they are doing, from what I understand.

Not knowing is what is killing me right now and from everything I've read from the people here, it is a shared feeling. I am preparing for the least wanted answers while hoping for the best. I sympathize with your situation so hopefully you will find out very soon so you know where you stand.

You have a lot on your plate! Hopefully you'll be able to find some time to get some rest while going through all of that! My thoughts and prayers are with you.

Cathi68 profile image
Cathi68 in reply to sophieturgeon

thank you so much, means alot

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