New here, very rare - clear cell caught at stage 1

Hello Emmilou - I am sorry to hear about your diagnosis. Whilst I cannot identify with the feelings you talk about - I can say hello to you and welcome you into the forum.  You will find lots of lovely ladies in here only too willing to be a support for you.   I have found this forum to be invaluable for the past three months.   I have found it hard to talk about my diagnosis with others and experienced a lot of fear about people asking me how I am and wanting to know stuff.   So coming here and being around others (even if it is virtual) that have a similar diagnosis has been really helpful.   I don't think there is a right and wrong way to feel and you will navigate this terrain the best way you can.   I have found my head has been all over the place for three months now - some days feeling great and lucky to be alive and others feeling rock bottom and gripped with anxiety about the future.   Then all of the days in between.   Warm hugs are sent your way :) 

Hi Pickles

I was diagnosed with Stage1A aggressive clear cell. I had full hysterectomy Feb 2020 followed by chemo. Was given all clear following CT scan then a year later another CT scan showed cancer cells at the top of the omentum. A further 6 sessions of a slightly different chemo mix. CT scan half way and at end showed no cells which meant the cancer was being controlled. I was given the option of a chemo drug Niraparib to keep the cancer under control. I have been ok on the drug and my body has tolerated it well. I am aware that the cancer is likely to return at some point in the future and will face that at the time. It is important to have people around you to give emotional support as he cancer journey does not end at surgery or chemo. I don’t know where you live but I attend a MacMillan run Women,s cancer group at the Rosewood Centre located at Dewsbury Hospital. I am lucky that I have had great support from my partner but it is good to talk to other women who are on their various Cancer journeys. We all understand the fears, emotions, side effects of treatments etc plus there is a wealth of information and support. I may be worth trying to tap into something similar in your area or at your local hospice. Also Macmillan can provide 1-1 councillors who operate over the phone. I have one at present and I find our ‘chats’ very beneficially.

the main thing is to take each day at a time and try to keep positive. Difficult though the journey is live in hope and keep moving forward. Plan things to look forward to. Research is constantly moving forward and treatments improve. Sometimes the fear of something is worse than the reality.

All the best of wishes on your journey. Get in touch if you have any questions.

Dahlia 2270️

Hi Emmilou

my reply which went to Pickles was actually meant for you but I guess you will be able to see my story 

sorry! Dalia 2270

Hi Emmilou - I recently had diagnosis of a rare ovarian cancer stage 1C3 mucinous and agree that even stage 1 doesn't feel lucky. I am glad it is early stage and my oncologist feels chemo will not be beneficial so I don't have to face the side effects that brings but feel disadvantaged compared to more common types at early stage as they have more evidence on outcomes from treatment. Mixed feelings currently as feels like a lottery as to whether the cells found in the abdomen fluid at my surgery will cause issue with any recurrence or not. 

Jholly

Hi, just wanted to comment and say I am in a very similar situation, have been diagnosed with rare early stage cancer in my 20’s, mixture of emotions whilst they wait to tell me if treatment is needed (already had an op to remove) - if you ever want to chat let me know ! 

Emmilou you might want to consider joining ovacome rare cancer group as they have a monthly support group which you might find helpful to meet other ladies in similar situation to you especially as you say your husband is struggling to support you. I attended my first group session this week and the ladies were lovely and easy to talk to. Just listening to their stories was a massive help too. 

Jholly

Hello Phoebe

I am so sorry you have been diagnosed with a rare cancer. Its the club no one wants to be a member of!  Im glad you’ve got through the op ok and I hope you are recovering well.  I find the waiting to be incredibly stressful. How are you coping with it?  I was diagnosed  with Mucinous ovarian cancer (I still cannot get used to saying it!) had radical hysterectomy and currently undergoing chemo (Carboplatin) as a belts and braces treatment.  You will find lots of support on here. Everyone is really kind. Warmest wishes sent your way x

Hi Emmilou

I read your post and I'm so sorry to hear you crap news. How are you doing? I would be pleased if we could share our journey if you would like that, as there don't seem to be many of us about.  I will also join the rare cancer group on Ovacome (thank you @jholly) so maybe see yon on there too.

I have just had a total abdominal hysterectomy and omentectomy a week ago.  I was so relieved on initial diagnosis to find the CT scan didn't pick up any spread that I did not think about what happens next and told my family that I was going to be fine. I was certainly led to believe that because it was contained in my pelvis (a massive cyst nonetheless) that surgery could be the end of the cancer.  Now that I have been told 2 days post op that my cancer is Clear Cell OC after some initial histology done on the day of the op I feel very frightened. I have accepted I will probably have 6 rounds of chemo, but obviously fearful that I may have a chemo resistant kind of CCOC and I'm now in hell waiting to find out the profile of my CCOC/full histology and grading/staging, which I assume means whether anything was found in the ascites, lymph node and omentum and thus whether the initial grade based on scans a few weeks ago has changed or not (I am expecting it may, given the nature of CCOC and reading other people's experiences).

Short-term, I was also exposed to COVID on leaving hospital and am self isolating in my bedroom with a kind friend next door who is looking after me (my boyfriend lives in another town and is the one who got COVID and has probably passed it onto me :-( He is sole carer to an 8 yr old daughter with SEN and we can't see each other very often).  I have not told him what kind of OC it is - he lost his Mum to brain cancer after long illnesses and is still traumatised by this poor man.  I have also not told my family but I know that will have to do so when I get the full results ... just before Christmas. Or, maybe I should prepare them for the worst. Hard to judge.  I'm sorry your husband isn't feeling able to support you and really hope that has changed somehow. Let me know? 

Hugs to you lady. 

Emilyx

Hi Emmilou

like you I have the rare clear cell cancer. I was informed my abdominal tumour ( ovarian) in December 2019 just before Christmas and nearly on my 70th birthday. I was determined it would not spoil my Christmasand started walking in nature as often as possible. I found that this help combat my negative vibes. I had a complete Hysterectomy in February 2020 and was told I have Stage1 A clear cell Cancer which is aggressive. Since then  I have had 2 courses ( 6 sessions each ) . The first as a mop up to make sure there were no stray cancer cells. I was told that it was just a precaution and that my tumour had been removed complete. I lost my hair but had a fantastic wig. Carboplatin and Paxitaxol. Despite my fears I just got on with it and in reality the treatment was not as bad as I feared. I never felt nauseous. Apart from the lack of energy shortly after the chemo I felt relatively ok. A couple of months after the Hysterectomy an incisional Hernia developed. After approximately 12 months I felt that something was going on in my body other than the Hernia. My GP sent me for a CT scan to check everything was ok.

the scan revealed some cancer cells at the top of my abdomen. This was in summer 2022 . A further 6 sessions of chemo followed. Carboplatin and Liposomal doxorubicin. No har loss this time and again no sickness 

On completion of this second round of chemo which ended in February 2023 I went onto Niraparib to try and control the cancer cells. This commenced in April 2023. Prior to making the decision to try this drug I spoke to others who were taking the drug and also checked out the MacMillan support group online. The information I was given at Oncology was frightening. So many possible side effects were listed. Also because I do not have the Cancer Gene this drug may not be as effective on me as it would with someone who has the Gene. I have now had 2 scans and there is no sign of any cells developing. I have felt very fit and well this year apart from the Hernia growing larger and painful at times. I have been very active and continued walking, dancing, gardening and having lots of short holiday breaks in the UK. Having something to look forward to helps keep me positive. Being active also helps me mentally and emotionally. I just get on with enjoying life and will face anything which may crop up in the future.

Macmillan has been fantastic. I attend a womens support group and their craft group. Through these sessions I have found so much support and information. We also have some fun and laugh a lot. ( good for the soul). It feels good to share and discuss cancer issues with others on their various cancer journeys. They understand the emotional ups and downs and are very understanding and supportive of one another. It is good to talk, especially when you may not wish to upset family or friends. They also offer counselling. Maggies is also another brilliant Cancer support Organisation available to those on a cancer journey as well as their families.

Everyone is unique and we all react to prognosis and treatments differently. I can only speak for myself by saying that for me the key to coping with this journey has been to keep fit and active as possible, have nice treats to look forward to and do everything possible to maintain a positive attitude.

I know you are feeling very anxious at this time but fear of the unknown can be worse than reality. Ask questions at your appointments. make a list before you see/speak to any of the health professionals. I have found this very helpful. The NHS staff have been brilliant.

my thoughts are with you and fingers crossed that the outcome, whatever that proves to be, is not as bad as you fear.

All the best

Dahlia 2270

Thank you Dahlia2270 for taking the time to reply.  It's so helpful to hear your story (your reality). You've been through and are going through an awful lot. You are still here and living your life and I am so glad to hear it.  

What I'm getting by reading up on things (dangerous say friends, but I know it is actually necessary, in order to have questions ready to ask at my appointments) is that this rare cancer is unique to us all and what works for one may not work for another.  I will have to get used to the not knowing. To keeping hope alive.

I don't know if I have the gene, but on my mother's side I have a great aunt and a 1st cousin who had breast cancer and there are many relatives we wouldn't know about as the family is quite fractured. I will come to know in time. But from what I read of your story, that may be immaterial. I just hope to God I don't, because my beautiful niece already has one of the BRACA genes from my sister in law's family, and I can't bear to think she has a double whammy going on.

Well done for not letting this spoil your Christmas when you found out.  I try and keep your strength in mind as I approach the festive season.

Thanks again Dahlia.
Emily X