Looking for any Clear Cell Carcinoma Sisters! (Ontario)

SpectacularKaos

Hi,

I'm 48 and was just diagnosed with Stage 2 OCCC a few days ago. Feeling VERY angry and incredibly overwhelmed. I'm having a hard time accepting that I am now part of the Cancer Industry. Apparently the stats aren't that great for this cancer type.

Just wondering if anyone has any tips on how to cope, emotionally. Thanks.

Flowergirl

Hello @SpectacularKaos... welcome to the chat site and sorry to hear about your recent diagnosis.
How are you doing today? There is a lot of support here on the site as well as many topics and coping strategies we hope will assist you. I'll also private message you.

Maggie_Mae_2019

I have OCCC - Stage 3 and know exactly how you feel.  I was diagnosed in early February. It is overwhelming at times but I just focus on the good days when I can get out and do normal activities like shopping, visiting with friends, and walking as well as doing hobbies.  I try to live in the moment and take it day by day.  This is easier to do in weeks two and three once the chemo side effects wear off.  

kastoyles

@SpectacularKaos, I was diagnosed with Stage 1C Clear Cell in January 2016. The tumour was successfully removed, but they discovered a breach and it was possible cells had leaked to my abdomen. The recommended course of treatment was 6 rounds of chemo. I was shocked to find I had cancer in the first place - then to need chemo? My family doctor said that I needed to be as aggressive as possible with this cancer.  I thought of my mother who died from breast cancer in 1975. If she had the options available today, she would have done whatever she could. So, I had chemo.

How do you cope? It's different for everybody - but there will be sleepless nights, tears, anger and frustration. You will get through it. This forum is here to help. Talk to friends, join a support group, connect with others who have gone through the same thing. Try journalling, meditation or relaxation techniques - they all helped me cope, but it was a long time before I personally made peace with the diagnosis and treatment.

jiselle16

Hi @SpectacularKaos! I'm very sorry to hear about your diagnosis. I too was diagnosed with Stage 1C clear cell carcinoma in June 2016. I live in Ontario. I had a full hysterectomy at age 31 and then did 6 rounds of chemo as a precaution. Clear cell is a more rarer and aggressive type of cancer - so I was very scared - but I have been in remission since 2017. I too was very angry and overwhelmed when I was diagnosed...it felt like a whirlwind. I still am dealing with the residual anger (why me?) but in many ways cancer has changed my life for the better. I know it sounds a bit hokey, but I no longer take things for granted and try to live life to the fullest. There is a book called "Picking Up the Pieces" and it was instrumental in helping me cope once treatment was finished. If you have any questions or just need to talk or vent - feel free to post here. We got your back!

LISA

Hi everyone.... I have been newly diagnosed with Stage 1a CCC.  Information I quite didn't expect to receive when I went to investigate a mass growing within me. I followed through with a radical hysterectomy and mass removal.  Pathology confirmed the early stage CCC which was contained to my left ovary.  No treatment required (and praying that I made the right choice).  I am happy to meet everyone and read your stories of strength, hope and survival.  We got this!!  

Flowergirl

Hello @LISA

Flowergirl

WEclome to the chat site. We hope you are doing well and find much support here online.
I have a couple ladies in my in person support group diagnosed and treated for/with Clear Cell... I'll see if I can gain some insight to share or if they are able to join this site

Elsie13

I realize this discussion is from the spring of 2019, but I feel I should add my name, as it were. @LISA , @jiselle16 , @kastoyles , @SpectacularKaos, @Maggie_Mae_2019 : 
  My hysterectomy was in mid-November, 2016.  The larger cyst was a 17cm oval. I got the pathology 4 weeks later; stage 2 ovarian cancer, with 10% of the cells being clear cell.   The other cells were adenocarcinoma. I had chemo and radiation.  The treatments weren't too bad actually, and now I'm No Evidence of Disease.  Anyway, a year or so after the pathology report, they changed the staging 'rules' so what I had was stage 1C. 
SpectacularKaos, did anyone say what percentage of clear cell you had? In any case, my doctors said as I had clear cell, I needed chemo and radiation, so that's what I had. 

kastoyles

Hi @Elsie13 glad that you found us and I found your comments curious. I had not heard anything about staging rules.

My oncologist said I had clear cell, but don't recall a percentage. My surgery was in Jan 2016, beginning chemo in January and finishing in July. I was diagnosed as 1C - my tumour breached and there was a possibility some cells leaked into my abdomen - that was the reason for chemo.

Elsie13

@kastoyles, I tried a computer search, cancer staging rules in Canada, but I couldn't find anything.  Then I found: https://www.sgo.org/clinical-practice/guidelines/new-figo-ovarian-cancer-staging-guidelines/   I live in Montreal, so maybe the health care here took a few years to catch up with the new system???

deborah

Hi everyone My name is Deborah and I am from Saskatchewan.
I was  diagnosed with ovarian stage 1 grade 3(clear cell) in sept 2002
at age 47.So almost 18 years ago.! I had a completely hysterectomy to remove a large cyst( they originally thought  benign ) by a gynaecologist. They determined it was malignant on the operating table.
I was then referred to a gyn oncologist in Calgary and had a staging operation 10 days after first operation. I’m sure they must do that differently now. Hopefully as that was tough.
I completed 6 rounds of carboplatin and taxol.
I just wanted to try and give those newly diagnosed Hope  that clear can be cured!
I did not have access to all the wonderful info and support groups then. Ovarian cancer Canada was just getting started.

deborah

I am only in this site right now as a friend of a friend was newly diagnosed and I was just seeing what might be new for treatment and came across someone wondering about clear cell.
After 18 years you don’t think about it much except for there are always residual effects from surgeries and chemotherapy. Although not bad for myself.
Just a note though I had IVF when I was 30 years old and delivered triplets.
I often have wondered if that procedure maybe contributed to the ovarian cancer( drugs)? No definitive answer to that I have found.

Elsie13

Hi @deborah .  That's so interesting.  My ovarian cancer diagnosis was 2016, and they said 10% of it was clear cell and I also had adenocarcinoma. I also had 6 chemo treatments with Carbo/Taxol and then I had 25 radiation sessions.  I'm now No Evidence of Disease. The compression stockings for the lymphedema in my legs are a bother, especially in hot weather!  But I sometimes wear the compression knee socks, instead of the thigh highs. 

Flowergirl

Thank you @deborah for sharing your story and joining the chat.
Wishing the best for your friend of a friend. Much more information can be found on the main site if you wish to refer her https://ovariancanada.org/
and hope she has the resource guide "By Your Side" whcih  can be ordered here:
https://ovariancanada.org/living-with-ovarian-cancer/support-resources
And we are grateful science and treatments are always evolving!

jiselle16

Question for my fellow clear cell peeps @SpectacularKaos @kastoyles @Maggie_Mae_2019 @LISA @Elsie13
@deborah ...did your oncologist ever mention if clear cell is hormone dependent? I was given a prescription for HRT to deal with the symptoms of surgical menopause, so I would assume the answer would be no. Obviously this is a question for me to bring up again with my oncologist at my next checkup, but curious as to what others with clear cell have been told?

Elsie13

@jiselle16, this question never came up with me and my oncologists. I went through menopause at age 52, and my ovarian cancer was at age 60.  I also assume the answer would be 'no' but certainly a good question for your doctor. 

kastoyles

@jiselle16 - I was 61 when diagnosed - the only thing left from menopause was some residual hot flashes. The subject never came up with my oncologist. I agree with @Elsie13 - check with your doctor.

MarilynOCC

Hi @jiselle16 I was diagnosed with clear cell at age 48.  I was not even in peri-menopause and I remember having my first hot flash in the hospital the night of my surgery.  I was not given any HRT nor did I ever have a discussion with my doctor about it.  I will see what information I can find about the subject.

Tinazzie

Hi everyone - would like to add my name as well to my fellow OC CCC sisters: @SpectacularKaos @kastoyles @deborah, @Maggie_Mae_2019 @LISA @Elsie13
I was diagnosed with stage 2 clear cell ovarian cancer in January of this year, after having been diagnosed with IDC the month before.  So, it's definitely been a rough 7 months so far.  The mass on my left ovary was quite large - approximately 12x9x11cm, and ruptured during or just prior to the surgery.  There was also indication of early spread to the left ovary. Chemotherapy was the recommended treatment.  I started my 1st of 6 chemo cycles in May (Paclitaxel and Carboplatin) and will have my next and last round in a couple of weeks.  I'm looking forward to getting it over with, as it's been quite hard - in my case, with intense back pain and issues with the digestive system.  At the same time, also feeling anxious, nervous and keeping my fingers crossed that the chemotherapy has worked - at least for the moment.   Glad to know that we are not alone out there!    

Tinazzie

Hi everyone - would like to add my name as well to my fellow OC CCC sisters: @SpectacularKaos @kastoyles @deborah @Maggie_Mae_2019 @LISA @Elsie13
I was diagnosed with stage 2 clear cell ovarian cancer in January of this year, after having been diagnosed with IDC the month before.  So, it's definitely been a rough 7 months so far.  The mass on my left ovary was quite large - approximately 12x9x11cm, and ruptured during or just prior to the surgery.  There was also indication of early spread to the left ovary.  I started my 1st of 6 chemo cycles in May (Paclitaxel and Carboplatin) and will have my next and last round in a couple of weeks.  I'm looking forward to getting it over with, as it's been quite hard - in my case, with intense back pain and issues with the digestive system.  At the same time, also feeling anxious, nervous and keeping my fingers crossed that the chemotherapy has worked - at least for the moment.   Glad to know that we are not alone out there!    

Elsie13

Hi @Tinazzie.  Glad to see you posting in the Clear Cell discussion. I had the same chemo as you, 6 treatments of Carbo/Taxol.  The worst thing about the chemo for me was the extreme exhaustion I felt by the time  I got to chemo #4, 5 and 6. However, a week or so after chemo, things would be fairly normal. Well, you know, normal for someone who had major surgery and treatments. 

sherriann33

I was diagnosed with stage 2 clear cell ovarian cancer March 2019 and had a full hystorectomy, removal of the apendix, bowel resection, etc etc.  My treatment was chemotherapy with intravenous carboplatin and taxol for cycle number 1, then intraperitoneal cisplatin and taxol for 6 cycles.  I finished treatment August 2019.  I have had inflammation issues (discomfort in the port site) and ongoing issues with neuropathy, although it is slowly getting better.   Happy to chat with anyone who has any questions.  Support is key.

Twilight63

Hi , I’m 63 and had clear cell ovarian it was found incidentally during a total hysterectomy and they found my left ovary was 5cm with cco . I had a low grade cancer in my uterus which was biopsied in sept and had removed any signs of cancer except my ovary when the hysterectomy was done , I had no residual cells or ascites in the washings and I had a ct scan one month after surgery and it was clear . Now I have had my first treatment of the two chemo . I read that chemo doesn’t always work ?So I have had bad anixety because I googled everything but I am glad to hear other stories of people living longer . Does anyone have more info my doctor said that they got it very very early and everything looked good . I will be doing 6 rounds chemo is this the right way , thoughts ? I also broke out in a rash a week after chemo is that common ?

sherriann33

Twilight63 I had a very similar experience with surgery and washings.  I did Chemo due to a recommendation of my oncologist, to ensure they got everything.   I also did 6 cycles of IP chemo.  I had a rash after the first one.  It did go away and did not re-occur.   Be sure to report everything to your healthcare team, sometimes a simple journal helps, I thought I would remember everything, when it occurred etc, I was wrong, I started writing it down to keep track of patterns etc .  I have been done chemo now for 17 months.  So far from a cancer standpoint, it all looks good, good numbers, energy level is back etc.  Anxiety is totally normal.  I know it is easy to say but try not to overthink it all.  Be kind to yourself and just take it one day at a time.

Twilight63

thank you for the reply and it is encouraging . Did you have 12 treatments altogether then ? And if so why ? 

sherriann33

I had 1 cycle of IV Carboplatin/Taxol and 5 IP Cycles (so 10 sessions) of Cisplatin/Taxol (pumped into the belly).   Originally I was set for the 1 IV and 4 cycles but my oncologist added 1 more full cycle at the end.  She explained that there was a recent study released (in 2019) that suggested an additional cycle was recommended with more favourable long term results (which is what we all want).   I will be honest, at the time I was not happy to have the extra 2 sessions added as in my mind I was prepared for it to end after the 4th but in the end I did complete them and so far so good.   Just take it one day at a time, one treatment at a time.  Be soft with yourself.  You will find you are stronger than you think. 

Twilight63

Do you mind if I ask how old are you ?

Twilight63

We’re you stage 1a ?

sherriann33

@Twilight63 52.  I was 50 when I had the surgery and did chemo.

Twilight63

what is you how were you staged , sorry to be a pest