operation: I have been diagnosed with 2 large... - My Ovacome

My Ovacome

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wright68 profile image
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I have been diagnosed with 2 large cysts one on each ovary and have been told a high probability of cancer due to the nature of the size and shape on the 4th Dec then had my pre-op on the 11th but surgery not until the 2nd Jan due to the doctor only operating on a Thursday and it being Xmas. I am concerned about the outcome of the surgery and what it means with regard to what treatments etc I will have to have if its cancer I wondered if anyone else had gone through the same thing. I am really worried and to be honest quite scared about it all. Any info or help would be appreciated.

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wright68
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Hi and welcome to the site. Until they operate and remove the cysts and get the histology results its difficult to determine whether it is benign or cancer. If it is cancer they will determine the stage of the disease and in your case it seems it is contained to the ovaries in which case you would be stage 1. This means they have caught it early but it is likely they would recommend one course of chemo to mop up any rogue cells as a precaution. The standard regimen for 1st line treatment would be Taxol combined with Carboplatin infused every 3 weeks for 6 cycles. You would lose you hair. The oncologist may recommend giving carboplatin on its own instead in which case you will keep your hair, you should discuss this with your consultant. My niece was in a similar situation, she had the taxol/carbo and has been given the all clear since. Love Paul xx

wright68 profile image
wright68 in reply to

hi I had both ovaries and the growths removed on the 2nd Jan this year, its been two weeks yesterday and I was phoned today to say a letter from the specialist is on its way, so now I am sat waiting and worrying not sure what it will say. they tried key hole but due to scar tissue from previous 3 C-sections with the kids and the hysterectomy 2 years ago it was not possible it took him 2 hours to cut through the scar tissue and another 1 hour to remove both ovaries I had two growths on my left ovary and I on my right the left ones were quite large and one burst during the surgery so I had to have a drain put in.

Joanne

Hi there

Just to add if it's is just in your ovaries and stage 1 you may well not have chemo - I didn't. I had a Hysterectomy ,ovaries and omentum removed and some biopsies to check nothing had spread. However it does depend on the type of OC it is . If it's clear cell then chemo is normally given even for stage 1. As Paul says until the histology comes back no one can say for sure what your treatment would be but he has also outlined what generally happens above.

All the best

Sue xx

vipervictoria profile image
vipervictoria

It's not nice to have a delay. My surgery was actually cancelled the day before I was due for admission (because of an error in my records which said I have asthma and might thus need a bed in HDU post surgery). I flipped. I was completely furious and highly anxious. After surgery eventually went ahead 4 weeks later (the longest four weeks of my life), the cancer was completely removed and four years later I am still cancer free.

Almost certainly, the delay of a couple of weeks will not affect the outcome. What annoys me is that the doctors treating us don't seem to realise how stressful it is to have to wait - they - or at least - the surgeon who treated me - had a very matter of fact approach, saying it wouldn't make any difference… Hmmm. I'm sorry you're going thru' this, it might help to see your GP, who should be able to help. Best, Vxxx

Lily-Anne profile image
Lily-Anne

I think it's a little unprofessional to suggest cancer pre-op, without histology it's a guess. I had ovary tube and cyst removed then a month later full hysterectomy, omentum and cervix plus biopsies, it was stage one, clear cell and serous but second histology was unremarkable confirming no spread. Trust your Gynae/Onc they have lots of experience, if you are not sure Google them, I did and was very happy with what I found out about him.

LA x

ScardyCat40 profile image
ScardyCat40 in reply toLily-Anne

My first diagnosis was based on scans and cancer cells found in the fluid drained from my abdomen

in reply toScardyCat40

Mine too - everything else then just confirmed/further informed

ScardyCat40 profile image
ScardyCat40

I think we have all been there but until the histology comes back and the cancer has been graded and staged it's difficult to comment on treatment.

It is a worrying time and it's natural to feel stressed out. I found talking to MacMillan helped a great deal and of course posting on here.

Langstonelady profile image
Langstonelady

Hello, I remember this feeling, this was me 2 months ago. The waiting is awful and your mind does work overtime doesn't it.

I had a large cyst coming from one ovary that was found in October. I was refered to a gynae oncologist as it looked suspicious on the scan but was told they wouldn't know for sure til the testing was done if it was cancer. I had full hysterectomy on 19th Nov my results on 11Dec and despite my consultant thinking i would need Chemo from what he saw the lab reports showered my cancer was only inside the ovary not part of the cyst and i would not need chemo. I have 1a cancer type.

Do you know what type of surgery you are going to have?

Feel free to ask as much as you like. I did leading up to my surgery and once i had had it and found the replies so comforting and helpful.

Love from Carol x x

wright68 profile image
wright68 in reply toLangstonelady

hi I had both ovaries and the growths removed on the 2nd Jan this year, its been two weeks yesterday and I was phoned today to say a letter from the specialist is on its way, so now I am sat waiting and worrying not sure what it will say. they tried key hole but due to scar tissue from previous 3 C-sections with the kids and the hysterectomy 2 years ago it was not possible it took him 2 hours to cut through the scar tissue and another 1 hour to remove both ovaries I had two growths on my left ovary and I on my right the left ones were quite large and one burst during the surgery so I had to have a drain put in.

Joanne

I hope you are getting through the wait ok, a couple of days on. I think the speed is quite impressive, so should cancer be confirmed you can be reassured it wasn't left to work away. It may not be, let's hope for that ... But either way there is a clear path ahead: they will either have removed the problem or most of the problem and, depending on the histology, will have a set of therapies to start you on -- and that will move quite fast, I promise.

You don't mention what the surgery planned is -- are they aiming at removing cysts, removing ovaries or a complete hysterectomy etc? The latter is usually done if OC is confirmed but normally comes after a course of chemo. Whatever the degree, I hope you are planning for post-op help and support, as recovery is really important.

Love

Sue xxx

wright68 profile image
wright68 in reply to

Hi I had a hysterectomy 2 years ago due to a large tumour which turned out not to be cancer I had signed and asked them to remove the ovaries but when I came around he said he had left them due to my age. now 2 years later I am here waiting for surgery and I am quite angry that he left them. the surgeon says he may try key hole but not sure as I have had 3 caesareans and the hysterectomy so may be too much scar tissue he says if so he will open me up on the original scar from the hysterectomy and caesareans so its a wait and see what he does on the day. 2 years ago they said that I would be fine now they had left the ovaries but so wished he had listened to me and took them out.

Hi,

This was exactly my situation on 2nd October this year when (after seeing my GP about pain) I was diagnosed via an ultrasound with two large ovarian cysts. A CT scan revealed that I also had fibroids in my womb & blood tests showed that my CA125 (which looks for cancer markers) was only slightly raised (38). I had my surgery (a full hysterectomy) only 22 days later on 24 October and have recovered really well from it. In fact I don't feel like I've ever had a op now!

I agree with others who have said that it's not right to assume it is cancer before the post-op histology results come back. However what the surgeon sees during the operation is also very important as by eye they can see things that may not have even showed up on a scan. This was the case with me. It turned out it was a high grade epithelial ovarian cancer and had spread to my omentum & peritoneum - so a Stage 3a. The surgeon removed everything he could see and also took biopsies of organs. He was confident he had removed it all and fortunately the cancer hadn't spread to any organs.

I started my chemo on 2 December (3 weekly Taxol/Carbo for 6 sessions) - I've just had my 2nd treatment and am doing very well. I have lost my hair now but the hospital have a fab hair/wig salon and I have a lovely wig (nobody can tell it's not my own hair!) and some comfy caps/turbans for around the house.

It is very scary but this is a great place to get information and very supportive. Also write everything down that you want to ask your medical team, if you're not happy with the clarity of information or the way your questions are answered keep at it! I am finding it very helpful to inform myself as much as I can and to be as involved in my treatment as I possibly can be. I didn't want to feel like it was something being done TO me that I had no control over but rather something that I am actively involved in and have chosen. If that makes sense?

All the very best with your operation which I see is only a few days away now and wishing you a really good recovery and a very positive eventual outcome.

Libby xx

goinggaga profile image
goinggaga

The waiting is the worst part. From being regarded high risk ovarian cancer to tests and treatment starting took about 10 weeks for me. Seemed like an eternity!

Wishing you well!!

Wendy xxx

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