awaiting surgery: hi to all, New to this, I am 5... - OvaCare

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awaiting surgery

lizzydizzy profile image
11 Replies

hi to all,

New to this, I am 54 had a partial hysterectomy 10 years ago leaving just one ovary and fallopian. Three weeks ago I ended up in hospital due to severe stomach pains had a CT scan which revealed a complex cyst 14cm by 11cm was then referred to gyn this Thursday who said I was been booked in for surgery ASAP with a multi disciplinary team which will involve three different surgeons as it appears it maybe attached to other organs worst scenario being I could ended up with a stoma . I asked about the bloods and was told the c125 I think that is what is called sorry head at this stage was bit mushed was normal but was told not always reliable and all she kept saying until we open you up we cannot really tell you anything for certain. Next I am having pre operation tests just wondering whether anyone has had a similar experience . trying to stay positive but every seems to be happening so fast which I know is good but it doesn't always help I also feel foolish as I now realise I have had symptoms for about ten months but I self diagnosed irritable bowel syndrome through the internet . would very much appreciated any help or thoughts having read some of the posts you all are very positive and kind

regards

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lizzydizzy
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11 Replies
Maggie2650 profile image
Maggie2650

Hi lizzydizzy

Like you I had a hysterectomy and removal of one ovary and Fallopian tube when I was in my early thirties. I am now 65 and diagnosed in July with stage 3c ovarian cancer. Bit of a bummer - you would think that only having one ovary would halve your chances! I have had four chemos. ( carboplatin& pacltaxil ) and no 5 in three weeks. I am scheduled for surgery 23rd November followed by chemo 6 and a lot of finger crossing.

like you I have a 14cm tumour compressing my bowel and have been warned about maybe having a stoma. However the chemo has helped with bowel problems so I am hoping that the tumour has shrunk as much as the surgeon is hoping. My CA125 has never been raised above normal.

The first thing I did after getting my diagnosis was book a house in the Dordogne for next August to take all the family. I am determined to enjoy my grandchildren in the pool there next year. you are new to this and probably still in shock, and it really does get easier to deal with. The more you learn, the easier it gets to face up to it. There are lots of ladies on this site who are surviving for years of remission . The second worst thing I have dealt with is losing my hair. The worst thing is loss of taste for alcohol. How I would love a gin&atomic that doesn't taste like diesel !

Good luck and book something to look forward to - it's always good to have a goal ahead. Thinking of you

Lots of love

lizzydizzy profile image
lizzydizzy in reply to Maggie2650

hi maggie2650,

Thanks for your response I know everyone case is difference but on this community forum I have come to realise people who have gone through the experience and still experiencing their on going treatment are very strong and to be able to help others are a god send . I live on my own and have been over thinking you suddenly realize your not mortal never thought about it before . The holiday is such a good idea I would love to do the same hopefully next year my granddaughter is just one perhaps this the goal I should set as she has not seen the sea as yet . Hopefully after your surgery on the 23rd and finishing chemo the taste buds will come back and you can enjoy your gin and tonics again ! all the best for your op

Thanks for your kind words thinking of you

love and best wishes

Liz

Bobbyo1 profile image
Bobbyo1

Hi I had an operation last year but could not have anything done as I am an on going suffer of neurophenia and did not want to cause infection so the surgeon said he would open me up take the lining of my stomach and see want else he could do when he open me up he took the tumours he could and left the rest but I am now approach my last cycle of chemo and the tumours are stable it was a big decision to go ahead with the op but I survived without a stoma hope this helps but everyone is different also like you the tumour was stuck to my pelvis bowel and spleen wish you a speedy recovery

lizzydizzy profile image
lizzydizzy in reply to Bobbyo1

Thanks Bobbybo1

I hope the last cycle of chemo is not too tiring for you. finding this site is so helpful as you say everyone situation is different but the worries are the same and is such a help as to be able to chat with others about the anxiety

Thankyou for your kind words and my thoughts are with you and your recovery

Bobbyo1 profile image
Bobbyo1 in reply to lizzydizzy

Thanks for your reply I yet to have my last cycle of avastin but the last two times have been cancelled one cause of blood count and the time was the protein in my urine but still hanging in there making my self busy with holidays.

Planning a break at Christmas in a caravan in. The new forest also my birthday I make everything to look forward too see consultant next 5 th November I try to keep positive and knowing there's a lot of people on this site helps me

My thoughts go out to you

Caroles1 profile image
Caroles1

Hi lizzydizzy,

This is my first post, I have been reading all the posts and getting up the courage to post one!

I came back from Malaysia May 2014 and convinced myself I had a stomach bug as I wasn't eating much and kept being sick,but this went on and my stomach swelled in August.I had the blood test and my Cancer markers were sky high,so I had a full hysterectomy and 17cm tumour removal on September the first last year.I had stage 1c ovarian cancer.I then underwent 6 months of chemo,3 weeks on, 1 week off,carboplatin and taxol.

I am monitored every 2 months by my oncology expert and every 4 months by my gynaecology expert, my saviours and so far am cancer free.

It is an ongoing journey, I have my next check up tomorow and I am always in a mood the week prior and I have genetic testing on Friday, so as you can imagine am quite emotional.The thing I find difficult to handle is the thought it may come back and people do have the attitude ,well you are ok now as they don't really realise what it does to you mentally.

My advice would be for you to think positive, things do move fast but it sounds like you are getting the help you need and you need to concentrate on yourself and getting better.

It's nice to hear people's stories and I think that is now what I need, I have very supportive friends and family, but no one knows how you feel but another sufferer and I am considering going to a local support group to talk to like minded people,which you may find helpful once you have recovered from your op.

I wish you all the best don't worry about a mushed head, we all have them!

lizzydizzy profile image
lizzydizzy in reply to Caroles1

Hi Caroles 1

You are so right its nice to hear people stories and experiences because know one knows how you feel unless you been through it I know everyone situation is different but the anxieties are the same .Hope it goes well for you tomorrow . Would like to learn more about genetic testing

Thanks again for your kind words thinking of you all the best

Liz

Caroles1 profile image
Caroles1 in reply to lizzydizzy

Hi lizzydizzy

All good today,still cancer free,I go to genetic testing Friday, I understand it is a blood test,I have to go to Guy's. I have a daughter of 28 and a son of 26 and I need to know if I have the BRAC gene to see the likelihood of my daughter getting ovarian and my son being a carrier,but I will let you know what it entails.

How are things going with you?

Caroles1

lizzydizzy profile image
lizzydizzy in reply to Caroles1

Glad all went well for you yesterday. Finding this site so helpful with tips and advice .

I may depending on results also look into genetic testing.

Would appreciate anything you find out about it as I have read also bowel and breast cancer is part of the same faulty gene but there is such much information out there sorting out fact from fiction can be doubting .

Thinking of you

Regards

Liz

Caroles1 profile image
Caroles1 in reply to lizzydizzy

Hi Liz

Had good news,my type of oc is not genetic and is not part of the Brac gene, Guys rung me today, so appointment cancelled,such a huge relief!what we all are going through we wouldn't wish on anyone else.

The test for the Brac gene in my case was a blood test and can lead to a high risk of Breast cancer if present.There are an increasing amount of women having double mastectomies,Angelina Jolie being one of them.

My advice to you is not think about any of this but concentrate on getting your op over with and any after medication and get yourself well.You can't worry about what may not happen,I am testament to that, I feel mentally drained after the last year.

I send you and all the ladies my best wishes and if you want a bit of a chat you know where I am,stay strong,

Carole xxx

Hi Lizzydizzy, welcome to the page no one really wants to be on but we are a group of nice people who do our best to help each other as much as we can. When first operated on, just one ovary remained and had to return the following year for full hysterectomy. I was warned that a gastro surgeon would be needed because I would prob need a stoma. I was lucky I escaped that and got a few stitches here and there and the bowel was totally washed out. I agree with your doctor there is no definite diagnosis until surgery is fully completed. However your doctor seems to be on the ball and it is daunting but good you dont have to wait long for surgery. So some practical tips would be to buy some nightdresses for the first few days after surgery and tracksuit ends for when you come out as your tummy will be sore and tender. Dont do any more than lift a cuppa for the first six weeks. Give yourself a treat before the op if you have time, bring in some music on an mp 3 player or personal cd player as music is good to chillax as you dont have concentration to read after the op. However a few magazines wont go astray. I wish you well and keep in touch and let us know how your are doing.

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