My results

[Aliddy]

Hi I wanted to give you an update on what happened, after I found a 23cm cyst/tumour with septations on my left Ovary in Oct last year. I had endless tests, but the conclusion, was it looked almost certainly malignant. I had a TAH, appendicectomy, omentectomy and cervix removal on 30th Nov last year. I felt like I had been under a steam roller, but went home the next day, as I felt being with my family would help me recover faster, was a battle, eventually they agreed. I then had to wait 9 days for the hystology, again was told as the tumour was in mucinous fluid, it could be cancer. The waiting took an eternity, but the hystology came back as borderline, not benign but not malignant. Happy news, not realy as my surgeon/oncologist, was still not convinced, as the hystology was so rare. He sent it to a Professor McCluggage in N Ireland, who is the Country, if not the world's expert in OC. He came to the same conclusion, a very rare hystology, with all the ingriedients of OC, but not.

I have had a few urine infections and bowel problems, but they have settled down now. I am back at work, but felt so tired, everything was an effort. So last week I was given Estraderm patches and Testosterone gel, so will see if that helps.

The main reason I have written this, is to offer hope, to those, who feel as I did, when my tumour was first found, that even if all the signs are there, it does not mean you have OC,

Susan xxxxx

[Hidden]

Hi Susan,

This is good news, and thankyou for the update, just goes to show that they haven't got all the answers until it is taken out (sometimes not even then) it is good though that your oncologist wanted a second opinion, it does give you so much more confidence that they have got it right, but such a worrying time for you. but onwards and upwards now, sending you my very best wishes for a healthy happy life.... love x G x

[citrine]

Hi Susan

That is good news after all the trauma you've been through. I hope you recover your energy and that you can now get on with your life.

Love Mary xx

[wendydee]

Hi! its such good news that you're feeling better in yourself! It may help someone else who asked a question on here recently about flagging sex drive, to hear about if the Estraderm patches and testosterone gel has any effects. I know when I had some testosterone in implants, I felt better that at any time before or after. It made me feel less tired, no migraines at all (having had them since puberty, and now i am no longer on HRT, still back with a vengeance) more able to cope with alcohol without any signs of hangovers, energy, sex drive all up! Good stuff. Do let us know how the medication is helping, as it will help others ...... although I've resigned myself to being a sad old dear with migraines, headaches and a gentler pace of life now ......

All the best

Love Wendy xx

[Anne-2]

Hi Susan

I was fascinated to read your blog as when I was told my cyst had been a granulosa cell tumour they said it had been to Northeren Ireland to be analysed. Now I'm wondering if it went to the same chap- if it did he must be the bees knees in specialists so perhaps you should take his word for it! I am now two years post op and,although still feeling tired most days, just glad that all the specialist said about my GCT was correct.

Take care

Anne xx

[Hidden in reply to Anne-2]

Hi Anne,

Professor McLuggage is also on the Ovacome medical advisory team x G x

[Aliddy in reply to Anne-2]

Hi Anne, I also felt tired, everything was an effort, as for sexual relations, the thought made me cringe. I have now been given testosterone gel and Estraderm patches, so will let you know if they have any effect. Yes we were both refered to the world's specialist in N.I.

love Susan xxx

[Heffmeister]

Hi, I grew a massive mucinous tumor in 2010 with a borderline pathology. Although the borderline diagnosis is a relief (well actually it wasn't to me as I had no idea there anything remotely wrong with my ovaries at the time!) you still need close monitoring- some doctors will fob you off by saying it isn't really cancer etc. As I found out it can really turn round and bite you on the bum! My tumor had ruptured however which makes a recurrence more likely. Wishing you all the best of health for your future x

[Aliddy in reply to Heffmeister]

Sorry to hear that. My specialist, assured me as did the world's specialist, that my borderline hystology, contained NO malignant cells, it is unknown if it would ever have turned to cancer. All organs have been removed, so it is very, very, unlikely to have any further problems. I was trying to give hope to people, just diagnosed with all the symptoms of OC. How did it " bite you on the bum ?"

So just to make this clear a borderline mucinous tumour is NOT cancer.

susan x

[TinaWright]

Hi Ladies,

I understood that a benign tumour/cyst was not cancer.

Unyet a friend of my husbands had a benign mole removed from his forehead,and he insists he had cancer.

I told him that I didn`t think a benign cyst could be cancerous, he differed to agree.

He said it was a benign `cancer` not a malignant one.

Its confussing stuff isn`t it? And we can only know what we are told by our oncologists.

I have to say the C word was not mentioned until the consultants were absolutelly sure that is what it was but I could tell this is what they suspected.

I always thought borderline was a growth at a pre-cancerous state or on the change from benign to malignant. Do all cancers start off as cancerous? or do some turn as they grow?

Borderline could also mean inconclusive (not quite sure).

Whichever it is than I do hope that this means if it could be a cancer it is not yet even a stage 1 and in this case there must be a very good chance of complete cure, I hope that my logic sence is correct.If anyone does know the answers please do let us know.

love to you all from Tina xx

[Aliddy in reply to TinaWright]

Hope this helps

The hystology from Ms H large ovarian cyst has come back, showing a large borderline mucinous tumour. which was removed intact ( it was like getting a mattress out a door his words ) This was confined to a solid component on the inside of the cyst, her ovaries, uterous, appendix and omentum contained no abnormalities,and were removed, it is most unlikely she will have any further problems on this rare hystology 95% dont. I have sent this to Prof McClugge, world leader on OC. He has also confirmed no malignant cells were found, and there is not enough evidence to confirm, a borderline result would ever have become malignant, it just means the cells showed abnomalities. It was most certainly not inconclusive, I also had afull MRI scan, andCA125 of 12 before the op. Please keep positive, anything you wish to ask please do. He put in writing Ms H does not have OC, think that's quite clear based on 2 opinions.

Sue x

[Heffmeister]

Sorry I don't mean to scare anyone. Yes a borderline tumor rarely reoccurs. There is some debate still but the majority of doctors consider them to be a type of cancer- the other name for the is tumors of "low malignancy potential" I.e they have a LOW potential to become something malignant. I have been reading about these mucinous and borderline tumors for nearly 3 years now due to how they have affected me. I have up dating my profile on what happened to me on this website if you would like to read it (It's too long to repeat here). I too had a second opinion initially from a world expert - professor Gore at the Royal Marsden in London. They agreed I was 1c mucinous borderline. They Recommended 3 monthly checks with pelvic examination and. Ca125 blood test for many years. Make sure you get this!

[Aliddy]

That's ok but it'seasy to be scared, I was. We are the lucky ones, and I feel it's our job, to keep people positive. I Googled everthing, and was terified, now I only listen to the people dealing with us i.e specialists, there are alot of scaremongers on Google, as it's not regulated, anyone can say anything they like. I am having 2 monthly checks, and am hoping this testoserone gel and Eastrderm patches, will help with the tiredness and lack of energy to do anything, hope you are keeping well xxx

[Hidden]

Hi Sue

Even though this is very good news for you, I think what Heffmeister was saying is true also, she was saying to exercise caution because of her bad experience, and in fact she hasn't been one of the "lucky ones" if you read her profile she has been through the mill, even though it seemed to be caught early, so although to some it can be encouraging, to others it can be a very different scenario, and it just shows how different we all are with a prognosis,

So I think it is our job to show two sides of the coin, afterall we don't want the wool pulled over our eyes either, but we can only speak from our own experience. I am very pleased the outcome for you is such a good one.... Best wishes love x G x

[Aliddy in reply to Hidden]

Thanks G, I hd not read the other ladies history, I have now and understand. It seems so strange that borderline for one means all ok no further treatment, just regular check ups, sadly not the same for others. I was trying to be positive in what had been a nightmare, also I was lucky to have private health through work, so from first finding it to TAH was 11 days, I had no time to even digest what was happening. Professor MCcoulough has asked to use my hystology for study, which of course I agreed.

Love to you all,

Susan xx

[Hidden in reply to Aliddy]

That's ok Susan,

It's just that she has been with us for a while and even had to leave her two small daughters with her mum, while she was having treatment so it was a very sad time. But there has been others (even recently) that we have lost to this dreadful disease and they too had an early or borderline tumour, I don't understand it and It shocks me, but others like myself who have advanced and aggressive OC (and a recurrence) are still going strong.

Best wishes love x G x

[Aliddy in reply to Hidden]

we need to raise awareness of this silent killer and I am determined to do so, the fact we are no further on than 30 years ago is outrageus. I have put Overcome posters everywhere, but we need funding, and that is one thing I intend to do. My tumour was removed intact, in 11 days, NHS told me 17 weeks. I have apologised and offererd to meet her or offer any help I can xxx

[Hidden in reply to Aliddy]

Hi Susan,

I think it is really lovely that you intend to raise awareness, as it is so much easier for you to now walk away (as some people do) and I applaud you for this... thank you.

How disgraceful that you would have had to wait 17 wks as this isn't the guidelines that NICE gives, their requirement is 2 wks

I guess it must depend on where you live. (even though the guidelines re the same) Here in Chester I went to my GP on the Friday (which happened to be my birthday) and I was at the hospital on the Monday she put me on a fast track, which they have in place for suspected ovarian cancer. I was dealt with speedily on the NHS and like you it was a rollercoaster of events tests, scans,operation, chemo etc, I can't speak highly enough of my GP or the NHS medical staff.

Have a good day (it's sunny) Best wishes love x G x

[Aliddy in reply to Hidden]

Deighted you are doing so well, but agree it makes no sense, I hope and pray you stay well

[Aliddy]

typo outrageous