cysts..tah..and scared: hello to all you brave... - My Ovacome

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cysts..tah..and scared

jussi profile image
21 Replies

hello to all you brave ladies

i have recently been diagnosed with a large cyst on my left ovary, it is around 12cms..and there is some fluid along with solid mass...i have had the blood test taken however i donot know results yet..the tah is due just after the new year..and i have been advised that they will not know anything until the tests are done after the op..thankfully i have an amazing 12 year old son....and amazing family as well as partner..mind he 'll have to find the way to the sink more now..lol..i'm 42 and just feel stuck in limbo...

i have suffered alot from depression over the past few years and also have thyroid problems..so my anxiety and sleepless nights are getting to me...

would like some tips on coping...at times when you find yourself feeling negative..

my gp has told me to keep positive..but in the next breathe he'll say theres no guarentee but good luck with the op..any advice would be much appreciated

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jussi profile image
jussi
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21 Replies

Hi Welcome to the club no one wants to join...you have come to the right place for help and for cheering up...you will find a lot of cheery ladies on here despite their prognosis...

What puzzles me is why are they taking so long to operate? I would have thought the new year is a long time to wait and have you queried this? just a thought I don't want to alarm you....sending you best wishes love x G x

This doesn't sound right. I would call the Ovacome helpline 0845 371 0554 - you will speak to a nurse who specialises in cancer and get some good advice.

Also I would suggest making an appointment with you GP, drawing up a list of questions and taking your partner or a family member along for support. Even if you have a normal blood test, you might still have cancer. Please ask to be treated by a gynaecologist who is trained in oncology.

The suspicion of cancer is one of life's most stressful experiences and it is entirely reasonable to ask for help with the anxiety and sleeplessness - which, untreated, will only make things much, much worse.

jussi profile image
jussi

thank you for your reply..

at first they said end of nov..but nothing yet then the beginnig of december...other than it is the 7/8 of january...straight after new year..so hopefully it is nothing sinister..

it's the size really..they suspect its benign..but don't know for sure ..at the moment i look 6 months pregnant ..constipated, and by back is killing..alot of the pain i put down to my accident over 24 years ago..so already suffer from aches and pains...thats how i took time going to docs..just thought the heavy bleeds were down to pelvis damage and age creeping up..i just hope i am worrying over nothing..but 6 going to the toilet 6 times after 1 cup of tea ..is laughable...plus i do have some endo kicking about in there

thankyou once again..xxx

.

wendydee profile image
wendydee in reply to jussi

Hi Jussi

If you go on the Ovacome website (different to this site) and look on the left hand side, at the 'BEAT ovarian cancer' option. Scroll down to the BEAT symptom tracker. It will give you lots of info and you can enter your symptoms and print them off to take to the GP or the hospital. They will listen to you with the results that are recorded on there. It sounds as if you need this sorting out as soon as possible, if only to put your mind at rest. I had similar symptoms, and was treated successfully nearly ten years ago. Have you had an ultrasound scan? Or a Trans-vaginal scan? It's a painless and standard stuff. Also, when did you have your CA125 blood test? The results should be back in a week, although they are not always an accurate guide to OC. I don't want to alarm you. It is worth chasing these things up, though. It will give you a sense of being in control more, and, if there is anything that needs treatment, it is best to get it done quickly.

All the best,

Love Wendy xx

jussi profile image
jussi

thank you chrystynh

i am plucking up the courage to do that...just scared about what they will say..my dad died from bowel cancer..well the pneumonia got him in the end 8 years ago ..and my grandmother his mother had to go through the same type of op i am when i was around 17 year old ..also she is no longer with us for although she was cleared of the ovarian she later developed cancer of the lung..hopefully they looking over me to make sure everything ok ..

the gyno iam seeing is the top guy at sunderland i can go private as i have a plan at work ..but don't want to be laid up for xmas..i've always been a fighter .so just got to deal with..

i have been off work for 6 months with depression due to work..but this has only come to light when i mentioned about my periods to my gp..

thank you once again.xx

jussi profile image
jussi

thank you wendy

i had the ultra sound on the 1st of october..was advised size on the 12 however docs new from the 4th..i was at first to have the coil fitted on the 30 th of oct, obviously this was cancelled ..when i spoke to my gp on the 15th i could not get a straight answer..so i phoned hospital and spoke with gynos secretary..she rang the following day to say that he wanted to speak with me the following week..that was the 23rd of oct..it was then that i got the pre-op papers and also the blood tests were taken...i have only spoke with the secretary since then to see if she had any updates and then was arranged for op on the 7/8 jan ..so hopefully nothing sinister..most days i am okay but bget tired easily.gp says that is the anxiety....

thankyouxx

Hi Jussi

This is a tremendous worry for you but keep focusing on the fact that it may to be cancer. Nevertheless, the response rate seems a bit slow to me. The latest NICE guidelines on quality standards for ovarian cancer treatment might be useful if you decide you want to push for earlier surgery. Here's the link. publications.nice.org.uk/qu....

I know the timing is tricky with Christmas but your health is more important.

Keep us posted.

All the best

Linda

willow123 profile image
willow123

Hi Jussi. I had the same but 35 cms . I was very uncomfortable and just kept ringing the consultants secretary and they got me in sooner. I had the cyst and ovary removed and Omentom and apendix also as precaution.I know how worried you must be but you must be possitive. Mine turned out to be borderline tumor, I was shocked at first but glad it wasnt ovarian cancer. As im 38 I have to wait to have a hysterectomy, but am having 6monthly checks at the hospital.

Take care

Louise xx

Lily-Anne profile image
Lily-Anne

It sounds like a long wait, I had my scan, saw the doctor and had two operations within 8 weeks. My cyst was expected to be benign and even after the first op the doc said in his experience it looked benign, the histology came back as cancer, so was very shocked. I begin chemo soon. So although not trying to worry you they cannot be sure until it's bben to the lab. I didn't fall into any risk group and never had any raised bloods, you need to start foot stamping.

LA

Whippit profile image
Whippit

Dear Jussi

I'm sorry to hear everything you're going through at the moment. It's tough having thyroid problems as this can add to mood swings.

You say you don't want to be laid up for Christmas but really that should be the last of your worries. If anyone has offered you surgery before you should take them up on it. It's also a bit worrying if you 're worried your partner may not be too enthusiastic about 'getting to the sink' as you put it. He and your son will have to step up so that when you come out of hospital after a hysterectomy they do everything for you. You're not allowed to lift anything for six weeks - that means not the iron or kettle or do any housework. The reason is that there will be hundreds of stitches inside and you could compromise them by too much activity.

I think you should contact the hospital again - find out the results of the CA125 test which will be back by now, and talk to the team about bringing forward your treatment. This has already been protracted if you were first seen in October.

As for ideas about keeping positive - I shouldn't feel guilty if you're not feeling too good about things. Each one of us is different and it may well be your way to feel down at the moment. Whatever you do don't believe that a positive attitude will cure anything - it just makes you feel better.

I'm sure you'll get many laughs and good company on this site that will cheer you up. We're an irreverent lot.

xxxx love Annie

jussi profile image
jussi

thank you all so much for your kind comments..decided today i am not going to think about it..as i had a good nights sleep..1st for a week..thank you all so much.

got to get to grips with the financial side too..work has messed up my sick pay so this month i am not getting any wages not even stat pay..so much for working ...so they haven't exactly helped with the stress and the other halfs hours have been reduced..keiron already knows we are going to have 2 xmases..a quiet one next month..and an extra special one in january..he's my rock ...

thankyou all so much once again.xxx

wendydee profile image
wendydee

Keep going with the pressure to get something done, Jussi! I had my op just before Christmas, and the fact that I felt so much better meant that I had the best Christmas ever. Lots of easy-cook stuff, mulled wine on the go constantly, no-one expecting presses or cards and just him and me, cosied up, thinking about our good fortune! By New Year I was back to walking and swimming a bit later on. I hadn't felt so good for ages, in spite of the op and recovery.

Also, there's a branch of Macmillan which advises on work and finance issues if you have a diagnosis of cancer, maybe another reason to get things sorted out?

All the best

Love Wendy xx

charlie12 profile image
charlie12

Hi Jussi

So sorry that you are going through this.

I had a 20 cm mass discovered this time three years ago, but was reassured that it was a cyst. I was offered an operation a couple of weeks before Christmas but decided, with the doctor's agreement of course, to delay it for a month. I found out later that the cyst was a borderline tumour. This has of course a much better prognosis than fully invasive cancers , but I need the same follow up such as exams, scans, blood tests every six months for 7 years. I will never know if the nasty bit "grew" in that month. Also if it had burst then the situation might have been very different.

Honestly don't delay surgery, you will loose your domestic goddess persona after this big operation anyway !

Take crae

Big hug

Charlie xxx

angelina profile image
angelina

Hi Jussi,

I agree with everyone - I had my op end of Nov last year. I had 22cm cyst..told it wasn't

cancer but the surgeon wouldn't know for sure until results of biopsy....it came back as

cancerous which was quite a shock. Don't delay if you can get an op before xmas.

As Wendy says there are lots of prepared christmas foods...I got all my roasted veg

from Tesco in a ready to cook tray + sprouts etc ready prepared so my husband wasn't stressed out with cooking on Christmas Day as we don't have any family so we had to

managed the best we could. We did actually have a great christmas.

You can sit in the kitchen and give your family cooking instructions along the day.

I would also like to say the op is no way as bad as you will be expecting, I am sure

you will be like the rest of us and be amazed how quickly you will feel well afterwards.

Take care

Angie xx

jussi profile image
jussi

thanks everyone

i know i am burying my head in the sand..today i feel out of sorts i know i said i didn't want to talk about it but i feel like i have been kicked between the legs..just like you do after having a baby and keep having small trips to loo..could wee for england..lol

went for a walk to get some fresh air...so probably hasn't helped..putting more pressure down there.xx

thank you all for your comments

jussi profile image
jussi

can i ask what kind of cysts they suggested that you had....they are suggesting dermoid so i am just hoping everything is ok.xxx

Anne-2 profile image
Anne-2

Hi!

May I first say I have sympathy with you as I too have thyroid problems ( underactive) and during the long delay between finding a cyst and my TAH, I often enquired whether my thyroid problem was part of all my other symptoms. It was always then reckoned not to be, but when I eventually saw the gynae oncologist he said my tumour could have exacerbated my thyroid symptoms!

I'd take the surgery earlier if it is offered- two Xmasses sounds like a great idea!

Love

Anne

jussi profile image
jussi in reply to Anne-2

hello anne

my thyroid is overactive, so you can imagine how hyped my mind is..it took years to settle..10 to be honest..2 courses of of iodine treatment..

only pencilled in for new year ..just need to find out..as we all know what it is like ..did you we alot..

to be honest i have a stressful job..business banker advisor in a call centre for barclays...not an easy job..it was only whilst been off work with the stress ..and i asked about my periods to my gp this has come to light..

what happened after your op?

did you get days where you felt like you had burnt the candle at both ends (having fun)..yet you have not..just completely knackered

as for xmas ..he's gonna get a treat every month till easter..even if its just a new pair of trainers..

has this also affected your thyroxin.?

angelina profile image
angelina

Hi Jussi

I also could wee for england and found that I couldn't venture far as I needed the

loo constantly. I had to wear incontinence pads towards the end as I live in

Brixham which is very hilly.....haha....it was very tricky going down the hills as

I would be weeing all the way down the hill. I can laugh at it now but at the time

it was most embarassing.

All is well now after my op - its great not having to find the nearest loo.

Angie x

willow123 profile image
willow123

I was weeing alot as it was pressing on my bladder and had alot of presure between my legs. And could not sleep on my back because of the weight of the tumor. I have also had an over active thyroid since july. Mine was a mucinous tumor. All going well and recovering since its removal.

louise xx :-)

jussi profile image
jussi

been to docs today after phoning hospital..got a water infection ...my bloods are ok..no rises on the test so hopefully everything ok.. and today i feel positive....plus my son ..has come 1st in his year group for the school county running....must be from me running to loo..

nurses who have taken my bloods for last 10 years for my thyroid..spoke with them today and re-assured me i will be fine.

thanks to you wonderful bunch....lots of love..your amazing..xxx

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