Has anyone been diagnosed with Ovarian Clear Cell Cancer recently. I was diagnosed with Ovarian Clear Cell Cancer in September last year.

[paulin]

I was not diagnosed with the cancer until after I had a Hysterectomy. I was told by my surgeon that it was confined to my ovary and had not penetrated the wall and therefore he did not recommend any follow up treatment like chemo. This is really worrying as everything I have read since about people with this cancer, they have all received chemo after the operation. I am beginning to really worry that I have had no further treatment. I am going for blood tests every 6 months and scans every 12 months for the next 5 years. Has anyone out there experienced the same. I do not know if my lumph nodes where checked and the cancer did not show until after the pathology tests.

[TinaWright]

Hi Pauline,

Firstly because the cancer had not spread this puts you in a good place - this means it was confined within its own bubble (if you like), Ask what stage they put you at. At a guess the stage of your cancer would be a 0ne or two.

Most ladies are diagnosed with OV cancer at stages three and four, after the cancer has spread or broken out.

I had serous pappilary endomcarcenoma of the ovary but it had spread to the edge of the bowel, and the uterus which was diagnosed as clear cell. Cancer cells were also found in my abdoman wash. So, I had two priamary cancers going on at the same time, they were both treated as one. I was told that serous and clear cell are similar types of OV cancer.

The cancer would have only been found in your lymph nodes IF the cancer had burst through its bubble. Unless you have a second primary there which would be most unlikely.

I had six months of invassive chemotherapy but that was because my cancer had spread. If you don`t need chemo then that is good news for you mi darling.

Please try not to worry, 6 monthly blood tests and yearly screening is a good way of keeping an eye on things. In the meantime you are bound to have a bit of a wobble or two, this is a time to contact your oncologist nurse. I have 12 weekly checks at the moment but if I have a wobble and need some reasurrance I just give the department a call and chat over the phone. Appointments can also be

brought forward if you have something concerning you.

You can ask for counselling if you feel that would help and you can aslo contact macmillan they are brilliant - you don`t need to be terminally ill before they get involved. And ofcourse we are always here to chat anytime.

Good Luck from Tina Wright

[paulin in reply to TinaWright]

Hi Tina

Thank you for your response- its so reassuring to know there is support our there and it really is inavluable. You have made me feel so much better. I wish you well with your treatment and every best for the future.

Regards

Pauline

[charlie12]

Hi Pauline

Sorry that you are going through this. I was also diagnosed after my TAH/ BSO operation. Even though "it" was all gone before I even knew it was there it was still a terrible shock which has probably taken me a good two years to get over it all properly.

I had a large borderline ovaran tumour removed and was also told eventually that no further treatment would be required. I am also having check ups every 6 months for 7 years( it sems that borderline tumours can come back many years down the line) , so an exam and ultrasound and blood tests. The doctors are well use to doing these checks and really would find anything if indeed any other little nasties appeared.

Chemotherapy is not without many many risks , so avoiding it if we can would seem wise.Even people with early stage invasive cancers don't always need chemo.

As I say i do feel much much better now about things , but this took time and my cancer wasn't yet an invasive form of OVCA. I have got used to the checks and I'm certain you will to. However emotional wobbles big and small are totally normal if not almost expected. I am doing as much if not more than I did before my illness , ut it took time.

I hoep you enjoy the summer and that you have very many more years of good health.

Love

Charlie xxx

[SaraL]

Hi Paulin

I too had clear cell stage 1C. I would not have been given chemo as mine was also encapsulated. However, the surgeon spilled the contents of the cyst so I then had chemo.

On being given the chemo, I was told that there was no evidence to suggest that the regular chemo given for OC works for clear cell. So I had a dilemma there: why would I poison myself with something that was not proved to work? I did take the chemo in the end, as I felt I had to try everything to make sure it did not return. For the sake of my children, who were both under three years at the time.

I know of other ladies who have not had chemo when the cancer was self-contained like yours was. And they are still here with us, years down the line. You appear to be in a good position! I know the worry is there. And it will likely always be in the back of your mind. But you will know when the time is right to reclaim your second bite of the cherry.

Good luck!

Sara x

[wendydee]

Hi Pauline

I only just picked up on your question and I just had to write to say that I hope your experience mirrors mine. It will be ten years next December since I was treated. Like you, I was worried at first that I didn't have chemo, but as mine was borderline and that doesn't respond to chemo, I was treated like you. Have a look on my profile if you want chapter and verse! I still feel worried when I have any twinges or my belly looks a bit swollen, but I'm still OK and have even dispensed with the CA125 tests that my CNS told me I could have whenever I wanted, once I got past the magic 5-year marker. I think I'll always worry but there again, I'll always appreciate all the extra appreciation of life, friends, family and the support we all get on this site. Without my diagnosis, I wouldn't have known all this

Good luck and let us know how things are going with you

Love Wendy xx

[Hidden]

Hi Pauline

Sounds like we're clear cell twins! I was also diagnosed in Sep after a TAH and I was stage 1a.

When I went for my post op review we discussed chemo and they recommended carboplatin only, purely as a precaution but they did say there was only an 8% probability that it would have any positive effect and we would never really know if I was in that 8% or not. Anyway I went ahead and had it. It wasn't pleasant but I guess it could have been worse. And I'm really not sure if it was necessary to put myself through it.

I've had my panic attacks and may well have more about the possibility of it coming back but I just try to keep reminding myself that the stats are strongly in my favour and tell myself that it's all behind me now. I think you need to do the same.

I hope that you're feeling as well as I do now. I'm working out a couple of times a week plus taking walks and exercise is great for the spiriits as well as making you feel fitter. The weight I put on while on chemo is also reducing, I'm glad to say.

All in all, there's a lot for us to be positive about so let's make the most of it! But equally, let's not beat ourselves up over the occasional wobble!

Al the best

Linda

[raesposito20 in reply to Hidden]

Hello ! how are you doing? I have the same diagnosis

[Anne-2]

Hi Pauline

I was diagnosed after my TAH/BSO too with a rare tumour called a granulosa cell tumour. As it was removed whole I was told I did not need chemo or indeed any other treatment by my first consultant.

I was puzzled and alarmed by this, although I believe the hospital thought I had been reassured, and eventually saw a leading specialist who was somewhat worried that the first hospital had not given me a CT. He thought it would probably reveal nothing but organised it any way and then just to be sure I had another one six months later. Both were clear.

Though we have both been given different diagnoses I think I know realise that some of these little 'blighters' have to be treated differently.

Hope this reassures you in someway.

Love

Anne

[fleur14]

Hi there, my experience sounds similar too - diagnosed with OCCC stage 1a. However, I was given 6 rounds of Carbo & Taxol as a precautionary measure as it was confirmed as Clear Cell - that was my surgeon's preference, and let's face it - you tend to go with what they advise. I'm not sure it was necessary, and will never actually know, but at the time, I went with what they advised.

I think a lot depends on the hospital you are with and the Surgeon who does the Op. Ask for a copy of your op notes, and see what staging was done - Lymph nodes, Omentum, washings, etc. and the results. I'm guessing they did a full staging and all was clear, so the decision not to follow with Chemo makes sense.

I've been clear 4 years now, and hoping it will stay that way! Best wishes to you and all my other Teal Sister's out there - hoping we all stay well.

[paulin]

Hi all

Thank you so much for all your kind and positive responses. I feel so much better now knowing there is such wonderful support out there if you need it.

I wish you all well in your treatments and look forward to continuing as a member of this wonderful forum.

Best regards

Love

Paulinex

[RuthPOvacome]

Dear Pauline

I am sorry to hear about confusion round this issue. Do feel free to give Ovacome a ring to discuss this further if it would help 08453710554 Mon- Fri 10-5

Best Wishes

Ruth

[WendyD]

Hi Pauline

I was diagnosed 6 yrs ago with stage 3 phase 3 clear cell and was signed off after my 5th anniv. I know this doesnt exactly answer your question but at the time I couldnt find anyone with clear cell until I went on to the ovacome site aand a lady on there told me she had been diagnosed 9 yrs prev. Felt a lot better.

I was rushed in (about a month) as I had been diagnosed as IBS by 3 different docs. Fortunatelyfor me the 4th doc had a history in gyni and was on the phone straight away. The treatment then at my hosp was the op then 6 sessions of chemo. Howeer I believe that now they do 3 sessions the op then 3 more sessions.

After read about you brave ladies on here I now realise what a difference there is in treatment methods for the same thing.

I know it was 6 yrs ago but I didnt seem to get the same discussions re treatment.

Ironically my niece was in nursing cadetship at the time and is now a chemo nurse.

Lots of love everybody

Wendyx

[Hidden]

Since I've been diagnosed with primary peritoneal cancer (similar in structure to ovarian), I've met others in your position with oc and who are 15 years or more from the original diagnosis and have had no problems at all. If oc is caught very early on with no invasion anywhere else, the prognosis for a cure is excellent. Ruth on this site is really sensitive to these issues and I've noticed she's posted her telephone number above. It might help to speak to her or if you feel you can't, then you could mail her. She's helped me a lot. Good wishes go your way.

[paulin in reply to Hidden]

Hi Tina

Many thanks for your answer. It has given me a boost and I know feel so much better about the future. I wish you well with your treatment.

[VClaire74]

I was diagnosed will ovarian clear cell last October and am now in remission.It was found on a chocolate cyst on my left ovary..it was thought at first to probably be benign so a Ob/GYN did the surgery. I told her before surgery only to take out the affected areas. It was thought to be 1a but she wasn't sure if the cyst broke in or outside of the bag. my Left ovary and tube itself came back negative but because of the possibility of recurrence on this type I went back 6 weeks later and they (oncologist) took r ovary/tube,omentum,Left lymph nodes,biopsied uterus and all around and found nothing else- (the Dr said it was safe to keep my uterus after biopsies prior to surgery) Still they recommend chemo, which I'm not happy about for the reasons some of you mentioned- does it even work? What do you think ,should I just do the chemo? I am 99% sure I will. I have been on a natural healing program that I created for myself.. yoga, acupuncture, mostly vegan diet, antioxidants, medicinal mushrooms, juicing..and all around trying not to let myself stress and loving myself. It is crazy to have this happen ladies, but I think we can heal fully. I am just a flawed human but it has been done . when I start to weird out ,I feel whatever comes

and then refocus on affirmations. I have been having fun and doing my art and massage therapy with a renewed sense of enjoyment and connecting with friends and family- thanks for posting here all of you, it's lonely to be diagnosed with clear cell, and the Drs don't seem to know much which is not a comfort. sending out healing for all of you when I do my meditations, Claire

[raesposito20 in reply to VClaire74]

Hope you are well. I am newly diagnosed with 1A CCOC and undergoing Chemo at the moment. More research is needed in this !